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<title>Life After MS</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/" />
<modified>2008-03-20T00:39:07Z</modified>
<tagline>Multiple Sclerosis</tagline>
<id>tag:www.healthdiaries.com,2008:/ms/sylvie//70</id>
<generator url="http://www.movabletype.org/" version="3.33">Movable Type</generator>
<copyright>Copyright (c) 2007, Sylvie</copyright>
<entry>
<title>Hello from Mr and Mrs Wright!</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2007/09/hello_from_mr_and_mrs_wright.html" />
<modified>2008-03-20T00:39:07Z</modified>
<issued>2007-09-14T12:13:30Z</issued>
<id>tag:www.healthdiaries.com,2007:/ms/sylvie//70.6841</id>
<created>2007-09-14T12:13:30Z</created>
<summary type="text/plain">Another six months on and Marcus is now 23 months old and very gorgeous with it! Life this year has once again been a roller-coaster of survival. It isn&apos;t Marcus, as such, that is the difficulty now, as we have...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>Another six months on and Marcus is now 23 months old and very gorgeous with it! Life this year has once again been a roller-coaster of survival. It isn't Marcus, as such, that is the difficulty now, as we have a good routine now in how I manage my day, and I get the rest on my Chi machine, which I need in the afternoons in order to revive and cope.</p>

<p><img alt="marcusmred.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusmred.jpg" width="450" height="375" /></p>

<p>Like father, like son!!!</p>

<p>Tigga also has Marcus two days a week including one evening-overnight, and another weekday he is with his Grandparents and Uncle Coconut, so that gives me time for my own email/internet business (I’m self-employed) and personal email, health-related research and time for therapies and swimming/aqua-gym, all of which are very important to me! </p>

<p>Marcus’s favourite place in the world at my parents house in the heart of his family.</p>

<p><img alt="marcusintreegma.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusintreegma.jpg" width="450" height="408" /></p>

<p>Marcus out in the fresh-air with his Grandma</p>

<p>He loves being outdoors, meeting doggies, and seeing animals and wildlife, ponds (to through pebbles in and feed the ducks), going to parks and basically being pretty much anywhere with his grandma!</p>

<p><img alt="mzrcusgmapiano.jpg" src="http://www.healthdiaries.com/ms/sylvie/mzrcusgmapiano.jpg" width="331" height="450" /></p>

<p>Marcus playing the piano at Grandma's</p>

<p>Tigga lives at Steve’s flat and exchanges the babysitting for rent and another free trip to the Florida Keys this December, including this time several days up at Ordlando/ Disneyworld in the New Year, which she is very excited about (we all are!). </p>

<p>Tigga looks after Marcus primarily for the love of him (she calls him her little bruv), but we will ensure she is well paid-back for all her efforts as she HAS BEEN WORTH HER WEIGHT IN GOLD TO US THIS YEAR! She has just gone off to Leeds University now having got in this year, and she is studying nursing. We are all very excited and happly for her.</p>

<p><img alt="marcuscaseytigga.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcuscaseytigga.jpg" width="450" height="338" /></p>

<p>Marcus with his little girlfriend Kasey and his Tigga!</p>

<p>No one can replace her as a babysitter, as Marcus does so many things in the time he spends with her. His social schedule is very busy and he even has a 2 year old girlfriend called Kasey. But we will find an alternative child-care arrangement I’m sure. We’ll have to! I’m not keen on getting an au pair as they live-in and we have very little space in our home, but if it comes to it, we’ll do that. I have to be practical and, although next year, when Marcus turns 3, he will start nursery in the afternoons (I will have to just bite the bullet when it comes to the colds and bugs he will pick-up and bring into the house), I’d prefer not to go there just yet! I am sure that the right solution will turn up anyway. </p>

<p><img alt="marcusgrandad2.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusgrandad2.jpg" width="311" height="450" /></p>

<p>Marcus playing in the back garden with his Grandad at my parent's house</p>

<p>I have plenty of options as thankfully we can afford to pay whatever necessary. In the 3 weeks after Tigga has gone and before we fly our to the Florida Keys (for 3 months), Tigga’s brother, who Marcus loves, will help us out (he also lives in Steve’s flat right now!). I was hoping that his girlfriend, Gabi, who is 17, would take over from Tigga, as she too has helped out this year, when Tigga was away in Corfu, and Marcus is actually in love with her, but she has split up with Tigga’s brother, and has also just got an office job, so she won’t be available now. I’d prefer someone like her, someone I trust and someone I know adores Marcus and that Marcus adores, but I am now looking an alternatives, such as local Mum’s who have kids already and who would find a bit of extra money very handy, or maybe a local child-minder. The main thing is that my boy is happy and comfortable with the person he is with (and not bringing me into contact with too many bugs just yet). For the time-being Tigga’s brother, Doolan (Chris) is helping us out with the childcare.For the time-being Tigga’s brother, Doolan (Chris) is helping us out with the childcare.</p>

<p><img alt="marcusinplymouth.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusinplymouth.jpg" width="450" height="338" /></p>

<p>It has been all the colds and bugs this year that I have caught from Marcus, from baby-groups and generally from being rundown, that has been that major problem this year and have really set me back (after getting all that sunshine in the Autumn/Winter in the Florida Keys, and vitamin D, which suppresses the immune system, so is good for ms, we come back to England like complete wusses and seem to get every bug/cold going!!!). But I realise that this is part and parcel of having a child, and fundamentally, really, it is my low immunity that is the problem, so it is up to me to fix this (so I don’t come down with them!).</p>

<p>So I am going to have to look after myself even better, and take the time for therapies etc. I tried seeing a chiropractor this year in England, but that didn’t do me any good, so now I am getting back to basics, and last night, I had my first session of Reflexology, with Cecile, a lovely French lady, who runs Feet First, and she was brilliant. It was £30 for an hour, she came to my house, and it was very relaxing. I plan to have this therapy monthly and I am sure it will help boost my immune system, and improve my health, circulation and everything. Bottom line is I love this therapy anyway, so anything else is a bonus.</p>

<p><img alt="marcusgmagdadasleep.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusgmagdadasleep.jpg" width="450" height="296" /></p>

<p>Marcus, Grandma and Grandad all worn out!</p>

<p>I am also going to find a way to get the drug Low Dose Naltrexone (LDN) again as well, as many people with ms, find it helps them, and it boosts the immune system and that is what I need. I did take it on and off for about one year, a few years a go, and I didn’t feel it made enough of a difference to me, to justify what it costs me to buy, but I wasn’t up against then, what I’m up against now, so I’d like to give it another go! It should help me ward off all these nasty bugs! That is my hope anyway!</p>

<p><br />
<img alt="bigsleepbigchair.jpg" src="http://www.healthdiaries.com/ms/sylvie/bigsleepbigchair.jpg" width="374" height="450" /></p>

<p>Big chair.Big sleep!</p>

<p>Physically, I am worse wrt ms, but with all these bugs and colds, triggering my immune system to attack my nervous system, it is not at all surprising. I am just thankful that I am not significantly worse, in that I can still  manage and lead a relatively independent live. My left hand and arm are a lot shakier at present, the vision in my left eye is somewhat blurry, and my legs are stiff making walking extremely difficult at present. Also my arms get a little stiff and weak towards the end of my cycle (yes, I have a cycle again now, it took 18 months after having Marcus before I got a period, but now I am on a 6 week cycle, my periods are heavier and I get quite bad PMS and feel bad with MS towards the end of my cycle as well, but I am glad to have periods again!</p>

<p><img alt="marcuskitchenfloor.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcuskitchenfloor.jpg" width="450" height="295" /></p>

<p>My body must be recovering from the shock of producing our beautiful boy, but I am being very careful now as I am not planning to repeat the experience in the near future! Marcus keeps dropping me hints though as he adores babies, but he is having to make do with friends' babies and a doll, baby Natasha, whome he loves. </p>

<p>I think producing a real baby sister Natasha for him right now would make life immensely difficult. It is a dream, but a dream too far. I am focused on getting through these years when Marcus is young right now. When he reaches school-age and if Steve is less busy with the business, then it might be a possibility, but I think it is unlikely. We are more than happy with the one we have got and very lucky to have him! I am continuing to focus on day-to-day survival and making it through, because I do not want for my ms to get any worse. It is difficult (sometimes beyond words) but I love the life I have. In so many ways, I am so blessed.</p>

<p><img alt="marcushenryhat.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcushenryhat.jpg" width="450" height="480" /></p>

<p>Apart from all the colds and bugs, it has been a great year in many ways. We went down to the MSRC reception at the London marathon in April so everyone got to meet the boy! </p>

<p><img alt="marathon1.jpg" src="http://www.healthdiaries.com/ms/sylvie/marathon1.jpg" width="450" height="352" /></p>

<p>At the MSRC reception at the London marathon with friends</p>

<p>We also met up with two very special and remarkable ladies, who have ms, along the way, Shirley and Jane, ladies we know from the Yoga for Health Foundation, as well as a carer of Shirley’s, Rosangla, who we were happy to see again. Not to forget seeing Jane’s amazing carer dog, Finn, who we adore and who remembered Steve from several years a go. </p>

<p><img alt="marcusshirleyjane.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusshirleyjane.jpg" width="450" height="372" /></p>

<p>Me, Finn (carer doggie), Jane and Marcus, Shirley and her husband!</p>

<p>Everyone was thrilled to meet Marcus and he had a ball! We stayed with Judy Graham, another amazing lady with ms, author of several self-help ms books, and editor of New Pathways magazine, and she was very smitten with Marcus too. He particularly loved  Napo the  king-charles spanial staying with them,and also throwing pebbles into her garden pond!</p>

<p><img alt="marcusjudy.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusjudy.jpg" width="400" height="324" /></p>

<p>Marcus and Judy throwing pebbles into her garden pond</p>

<p>The next weekend after this trip, Phillip, who has MS and comes from Oz (Philoz) who was over here with his daughter on a holiday came up North to see us. I know Phil off the MSRC message board, and I met up with him for the first time at the MSRC marathon reception! Together we all made the trip up to Skipton to visit another dear friend, Charlie Gee, who also has ms but always has a smile on his face, doing his best and making the most of life in spite of adversity. We visited him and his wife Renee and had a lovely Saturday night take-away curry together and they were thrilled to meet Marcus as well. Considering my, Charlie's and Phil's lack of mobility, it was quite a result to get together, and all thanks to Steve, my wonderful fella!</p>

<p> <img alt="usinskipton.jpg" src="http://www.healthdiaries.com/ms/sylvie/usinskipton.jpg" width="450" height="280" /></p>

<p>Us together having a lovely curry at Charlie Gee's.</p>

<p>The next major event of the year was our wedding on July the 22nd, 2007. Though we had hoped to wedd in the autumn in the Florida Keys, in the end I felt it was to much of a big ask to get my parents to fly over there for a holiday, bearing in mind my Dad in now 79, and since his major neck operation last year (for a skin melanoma), he has become a lot older, more forgetful, lives with considerable back-pain and is a lot less steady on his feet. He has had two fall this year, each time cutting his head and is far more fragile as a result.  I decided the right thing to do was to marry in Sheffield. </p>

<p>Ideally I wanted to marry in our back garden, in between a life-size silver-back gorilla sculpture we have got, and a 9 foot Velociraptor dinosaur I had set my heart on buying! But as the ground where you marry has to be registered we decided to meet with the vicar at St Bart’s church just around the corner from us, where I sometimes take Marcus to a baby group! The church building is very modern with walls with panels of glass so it is very bright and alost like being outside. So we met with the vicar, Martin Kilner, and got on very well with him and things went on from there. Martin was about to be ordained so he could do weddings, so we were to be his first wedding (apart from the one in which he married his wife!), so this made it extra special too!</p>

<p>We kept the wedding to a minimum of fuss, bother and expense. We invited close friends and family and then had a buffet back at our house after  </p>

<p><img alt="justmarried.jpg" src="http://www.healthdiaries.com/ms/sylvie/justmarried.jpg" width="332" height="450" /></p>

<p>The most expensive thing about the wedding was Steve’s gift to me, which was the 9 foot Velociraptor!!! When it arrived at our house a few days before our wedding, it was so enormous, I did wonder ‘Oh what on earth have I done!’. We had to take down our fence on one side to get it in but our neighbours were very good about that!</p>

<p><img alt="velociraptormarcus.jpg" src="http://www.healthdiaries.com/ms/sylvie/velociraptormarcus.jpg" width="289" height="450" /></p>

<p>Marcus exploring the Velociraptor!</p>

<p>On the day of our wedding I went to a local hairdresser’s just up the road and near to the church and had my hair and make-up done specially, and my friend Jacqui Wilmshurst, a school friend from years back, met me there and we then went up to the church. Really the whole day went like a dream for a girl who never really dremt about her wedding day. </p>

<p>My Mum played the piano before and after the service at the church and did a grand job making a beautifully decorated wedding cake. My Dad accompanied me down the ailse of the church with me driving my mobility scooter, entirely suitable when you think I was marrying the man who first sold one to me some 8 years a go, my very own scooterman! </p>

<p><img alt="marcussilverback.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcussilverback.jpg" width="321" height="450" /></p>

<p>Marcus putting peddles in the mouth of the silver-back gorilla in our garden!</p>

<p>Marcus did a great job as best-man wearing his dungarees. He really made the wedding very special, especially when he came into the church at the exact moment that Martin asked  if ‘any persons here present knew of any lawful reason why Sylvia and Steve may not be wedd’. He came running right up to us babbling away and I think he was giving us his blessing. He also made everyone laugh when he started dancing right at the front of the church to one of the tracks we had chosen, Thank you by Led Zeppilin.(We chose music tracks to play that has special meaning to us instead of having hymns).</p>

<p>Afterwards Steve and I enjoyed a drive about town in our 1960 Buick Riviera with white and blue ribbons on, and a Just Married sign hung on the back. My brother also made tin cans all tied together and decorated up to hang on the back of my scooter with Marcus and Grandma’s help of course.</p>

<p><img alt="sylviemattbuickriviera.jpg" src="http://www.healthdiaries.com/ms/sylvie/sylviemattbuickriviera.jpg" width="450" height="335" /></p>

<p>Me, my brother Matthew (Uncle Coconut) and our 1960 Buick Riviera</p>

<p>Back at the house the local paper photographer turned up to take photos of us with the Volociraptor, and the icing on the cake was that Calendar news phoned later that day and arranged to come and interview us the next day. They filmed us in the garden playing with Marcus, then they interviewed us separately, and they took our wedding video away to us. </p>

<p>So our wedding made the main story on Calendar news on the Sunday teatime. The angle was that miracle baby Marcus was best man at our wedding and it was an update of us all really, a happy wedding day story. They even flashed back to the footage when Marcus was a newborn and they cut-in scenes of our wedding from our wedding video which my brother had done for us, and the whole event was beautifully covered. </p>

<p>So what with this, with having the Buick Riviera as our wedding car, being Martin’s first wedding and also having the Volociraptor dinosaur in our garden, bought to mark the occasion of our wedding, both Steve and I are glad we got married over here in this way. I was keen for close friends and family to be there anyway, but it was quite a compromise for Steve to give up on getting married in the Florida Keys, but even he says he’s glad we did it this way, and he has proved himself a great man for agreeing to doing it this way in the first place in spite of a few reservations! So I am thrilled that he now feels this way!</p>

<p><img alt="twogenerations.jpg" src="http://www.healthdiaries.com/ms/sylvie/twogenerations.jpg" width="450" height="338" /></p>

<p>Two generations: Mr and Mrs Brown, (my parent) and Mr and Mrs Wright (Steve and I).</p>

<p>In August we flew off to Berlin in Germany for 4 nights. I wanted to visit our great family friend, Marie-Luise and her Turkish friend, Melek and for then to get to meet Marcus. I love Berlin anyway and wanted to take Marcus to Berlin Zoo. </p>

<p><img alt="marcuszoo.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcuszoo.jpg" width="450" height="305" /></p>

<p>Marcus enjoying Berlin Zoo</p>

<p>The icing on the cake with this trip is that my good Norwegian friend, Ann-Cathrin, made the trip from Norway too, so we met with her in Berlin too and she got to meet the boy as well! We also enjoyed meeting Melek’s family and her new husband! They were all fantastic peoplle'</p>

<p>The trip was fantastic and Marcus loved the zoo, especially the "kinder-zoo" where he petted and fed the goats. He also loved meeting everyone and everyone loved him. </p>

<p><img alt="usinberlinzoo.jpg" src="http://www.healthdiaries.com/ms/sylvie/usinberlinzoo.jpg" width="450" height="347" /></p>

<p>Marie-Luise, Melek and family, Ann-Cathrin and us in Berlin Zoo</p>

<p>We went on a nice boat trip around the City and saw the sights, and on the final day I enjoyed a wonderful massage with a homeopathic Doctor, Dr Dirk Zifer, which Marie-Luise treated me to. It was very relaxing.</p>

<p><img alt="berlinboatcruise.jpg" src="http://www.healthdiaries.com/ms/sylvie/berlinboatcruise.jpg" width="450" height="337" /></p>

<p>Us on the boay cruise</p>

<p>This week we have just returned from a weekend away visiting my good schoolfriend Julia in Ross-on-Wye and enjoying a great BBQ there, then staying overnight in the Travelodge in Monmouth, and travelling down to my Grandad’s in Curry Rivel near Taunton in Somerset. So Grandpa (well Marcus’s 96 year old Great Grandad) got to meet Marcus and they got on very well. Grandad was amazing in that he didn’t get tired while we were there, and didn’t even need a rest (unlike me and Steve). Marcus enjoyed exploring the back garden and putting flowers into a big metal bucket and telling Grandpa to pick it up and bring in into the house etc. </p>

<p>We ordered a take-away curry in and it was delicious and Steve even gave Grandad’s mobility scooter a thorough service! </p>

<p><img alt="marcusgreatgpa.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusgreatgpa.jpg" width="317" height="450" /></p>

<p>Marcus with his 96 year old great-grandpa!</p>

<p>It was a big thing for Steve to travel so far on a weekend, in his so called spare time, especially with the traffic and the difficult we had in finding the Travelodge, which was on a Motorway Services and had no real address, but he did it for us and for that I am very grateful. The BBQ, the curry and the full English breakfast he had at the B&B before we travelled home, did help. We stayed on the Sunday night at Ednehurst B&B, in Curry Rivel, where we have stayed before and it is run by a lovely couple, Marina and Tony Greenway. They treat all their Guests like Royalty and Marcus thought they were the dog watsits too! I enjoyed cups of green tea and a lovely fruit salad for breakfast so I was happy too!</p>

<p><img alt="marcusgrandad.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusgrandad.jpg" width="450" height="341" /></p>

<p>Marcus reading a book with his Grandad</p>

<p>In 4 weeks we fly off to the sunny Florida Keys, this time for 3 months and I can’t wait. Though I have tried to keep up with swimming and going to the Gym this year, it hasn’t always been possible. When I do go now I don’t do very much but it wipes me out completely so it is not very practical. I went last night though and went on the aquagym, managed to get my legs working eventually, and then did 12 lengths, so I am pleased about that.</p>

<p><img alt="marcusunclecoconut.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusunclecoconut.jpg" width="350" height="450" /></p>

<p>Marcus having a big laugh playing with his Uncle Coconut and a big traffic cone!</p>

<p>It is important that I exercise as I do believe in the philosophy of use it or lose it, and I want to strengthen my arms as well as improve my legs, but with all the bugs and colds it hasn’t always been possible. I need to do more stretched and yoga type exercises again, which help. I do try to do some everyday, but I want to do more, and though a bit more complicated with a toddler, it’s not impossible. If I lie down he does like to throw himself down on top of me, but that is good fun anyway!!! I’ll just have to teach him to do Yoga with me! Simple breathing and relaxation exercises are also important, and often in the midst of everything, we forget the basics like how to breath properly.</p>

<p><img alt="marcuswheelbarrow.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcuswheelbarrow.jpg" width="341" height="448" /></p>

<p>Marcus with his grandma playing in a wheelbarrow</p>

<p>We celebrated Marcus’s 2nd Birthday, one month early, so he could have a party with his friends Kasey and Malik and of course his family (as on his real 2nd Birthday we will be away in the Florida Keys). Marcus really enjoyed himself and it was a great 23 month old Birthday celebration.</p>

<p><img alt="kaseymarcusmalik.jpg" src="http://www.healthdiaries.com/ms/sylvie/kaseymarcusmalik.jpg" width="450" height="389" /></p>

<p>Kasey, Marcus and Malik in the bath tub!</p>

<p>Even though the future is daunting I am very determined to survive and come through this roller-coaster journey life has taken me on in becoming a Mum. It is an incredibly difficult journey at times, but incredibly rich and beautiful as well. I am doing my best and so is Steve, we are happily married and Marcus is one very lucky boy! He has parent who love him, a very unique Daddy, a remarkable Mummy, a very special babysitter, Tigga, girlfriends galore (the local girls still help me out!), wonderful Grandparents/Uncle Coconot, and a very full and happy life! All that and Teletubbies! Isn’t life great!!!</p>]]>

</content>
</entry>
<entry>
<title>Motherhood with MS: Continuing the difficult but wondrous journey</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2007/04/motherhood_with_ms_continuing_the_difficult_but_wondrous_journey.html" />
<modified>2007-04-18T23:04:14Z</modified>
<issued>2007-04-17T14:49:57Z</issued>
<id>tag:www.healthdiaries.com,2007:/ms/sylvie//70.6305</id>
<created>2007-04-17T14:49:57Z</created>
<summary type="text/plain">Well, it has been a good 6 months since I last updated you, and Marcus is now a happy, lively and very clever toddler. The way a child develops, particularly from the age of 1 year old, is amazing to...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>Well, it has been a good 6 months since I last updated you, and Marcus is now a happy, lively and very clever toddler. The way a child develops, particularly from the age of 1 year old, is amazing to witness. Marcus is harder work now in many ways (you need eyes in the back of your head!), and he sleeps far less in the day now (only the odd nap for half an hour or so) but like a log at night (that came with proper solid food at around 10 month), but it has to be said,the journey from 1 year old on, is far more interesting, entertaining and amazing!</p>

<p>Marcus, now 17 months old, is at a simply adorable age! I must admit he is ultra-cute and very gorgeous but the main thing is that he is healthy and has a beautiful personality to match his looks. He is very bright and a real charmer so we are very, very lucky (with my only having a half-sized womb none of that could have been taken for granted).</p>

<p><img alt="marcusbath.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusbath.jpg" width="478" height="350" /></p>

<p>He gets a bit cross if he is not allowed to do something (like press the button to turn off the tele while we are watching it!) but he soon gets over his little upsets including the bumps and little falls that all toddlers have, especially boys and climbers like Marcus! Otherwise he is very placid, happy and such fun. He has such a sense of humour like his Dad and totally ‘gets’ him! (and they look so similar as well that often people joke that I’ve cloned Steve!).</p>

<p><img alt="boysbaltiking2.jpg" src="http://www.healthdiaries.com/ms/sylvie/boysbaltiking2.jpg" width="380" height="411" /></p>

<p>Marcus with his Dad at Balti King, Broomfill, Sheffield - the best curry house in the world!</p>

<p>I know we have not yet reached the ‘terrible twos’ but I am not too worried about this phase,  and already, he knows when he has done wrong, and Steve is a strong male role-model and won’t take any messing about. They are never too young to learn and Marcus already learnt who was the boss very young age (in that if he is silly when there is nothing wrong with him apart from being over-tired, he just gets ignored!) </p>

<p>I am enjoying this age that Marcus is at, and seeing him develop. It is a wondrous journey! His first word was ”woof” (if you class that as a word!) in the Florida Keys, when he heard and imitated a dog, when he was just over 1 year old. But his first real word is “Bye, Bye”, which he has been saying for a few months now, and he waves. He says it a lot, even when he has just met someone, so for Marcus it clearly means ‘Hello’ as well! He  also says ‘there’ when he hands something to you, and he blows kisses, does peekaboo, putting his hands over his face them shouting ‘boo’ when he takes them away, and when we say ‘Tazan’ he cries out ‘Whhaaaaaaa’ with great gusto, waving his arms around, and banging his chest. This he learnt after he handed me his Tarzan video and I did it. After that he started doing it, much to our amazement, whenever we said ‘Tarzan’.</p>

<p><img alt="marcusdaffodils.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusdaffodils.jpg" width="450" height="483" /></p>

<p>Marcus at 'Art in the park'- he ended up in the local paper with a similar photo to this one so proving our boy is himself a work of art (and his Daddy is a piece of history, haha!).</p>

<p>He took his first real steps on the 21st of November, 2006 we know the exact date because we were in the Florida Keys and on the phone to my brother, Matthew, (Uncle Coconut)  who was in S. America where he was travelling. Suddenly Marcus let go of the kitchen cabinet he was holding, and stood there balancing on his own. I panicked of course thinking he would fall over, and screamed for his Dad to step in and get him, but Steve held back! He has a feeling that it was ok and he was right, for Marcus then took his first two steps landing on my lap at my wheelchair. This was witnessed by his Uncle Coconut in that he heard all the shrieking that them followed as we hugged our little boy and congratulated him on being to clever.</p>

<p><img alt="marcuswithdaddy.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcuswithdaddy.jpg" width="350" height="446" /></p>

<p>We flew over to the Florida Keys on Marcus’s 1st Birthday as it happens (We’d celebrated it the day before with his grandparents, friends, a nice cake and too many presents!). Marcus was very good on the flight, apart from when he crawled down into 1st Class, and his Daddy videoed him doing that before he retrieved him, which did not amuse the air stewardess too much, who was quite literally stewing! Ha ha!).</p>

<p>I had become pretty immobile and rundown by then, so it was a relief to have Steve around and to have less to do apart from sunbathing and swimming. The year since our Spring visit to the Florida Keys for the month of April had been a real roller-coaster of survival.</p>

<p><img alt="marcusmummytigger.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusmummytigger.jpg" width="312" height="384" /></p>

<p>Marcus and his Mummy (and Tigger!) in the Florida Keys in our holiday home</p>

<p>Thanks to the MSRC’s New Pathways magazine, I’d managed to buy a brilliant device to help with the foot-drop in my left leg, which was causing me difficulties in walking at all, as my left ankle just wouldn’t lift! The device is called a MuSmate (for further information <a href="http://www.musmate.co.uk/">Click Here</a>) and was invented by the husband of a lady, who has MS. It is quite a simple contraption, though very cleverly designed. It is worn around you shoulders, and straps to one or both legs with velcro (you can buy a single or a double <a href="http://www.musmate.co.uk/">MuSmate</a>). You look like a bungee jumper with it on, but it just helps to lift that foot or feet up, so stopping them dragging and enabling you to walk. </p>

<p>It is brilliant, and of course the more you use the muscles, the more you improve. It proved to be a life-saver on the aeroplane as it enabled me to walk the short distance to the toilet, which made life a lot easier (OK, you can manage with pads and nappies and such like, but I prefer not to have to. I only wear them as a back-up!).</p>

<p><img alt="marcuschillsout.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcuschillsout.jpg" width="350" height="470" /></p>

<p>After being in the Florida Keys, and swimming daily for 8 weeks (October 22nd to December 12th, 2006) Steve and I went on a trip to South America for 2 and a half weeks. We flew Marcus’s favourite babysitter out to the Florida Keys for the month to look-after Marcus, so he was very happy and well looked after while we were away (though that did not stop me worrying or missing him. What is it about Motherhood that turns you so irrational? I felt like we were away from Marcus for an eternity!).</p>

<p><img alt="marcusandsammy.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusandsammy.jpg" width="467" height="350" /></p>

<p>Marcus swimming with his friend Sammy in the Florida Keys</p>

<p>The trip has been planned thanks to my brother, Matthew's  (Uncle Coconut’s) organisational skills, through the internet (Steve had been far too busy with Marcus, me and running the business to get around to it, and I’d been far to busy just trying to survive!). I’m not sure that I really believed that I would be well enough to go on this trip but as per usual, I said yes and took the chance, as not many people get the opportunity to travel to Angel Falls (in Venezuela), the Galapagos Islands (in Ecuador) and Easter Island (off the coast of Chile) so I’d have been a fool not to!</p>

<p>However when we received news that Marcus’s No.1 babysitter, Tigga, was in hospital with meningitis just two weeks before she was due to fly out to Florida, the trip prospects didn’t look too good. However, thankfully the meningitis was bacterial and was caught early enough (treated immediately with anti-biotics) so Tigga bounced back really quickly and was fit and ready for a month in the sunshine by Saturday the 10th of December, the day she arrived at Miami.</p>

<p><img alt="ourboy.jpg" src="http://www.healthdiaries.com/ms/sylvie/ourboy.jpg" width="350" height="467" /></p>

<p>We drove up from the Keys to Miami to meet her at the airport, and visited the Everglades on the way. However, at Miami airport, there was no sign of Tigga in arrivals, nor at the spot we’d arranged to meet her  as a back-up plan. This was very stressful, especially when a lady who worked for American Airlines, whispered to me that Tigga had not even been on the international flight from Manchester, and then disappeared!!! Steve then came into the airport and made a few quick enquiries, and found out that she had been on the flight after all, but was just on a later flight from Boston, having missed the connecting flight (which made a lot more sense!). Anyway, she turned up and I was so relieved to see her!!! </p>

<p>Marcus was very pleased as well, as he was getting rather fed-up of circling around the area of Miami airport in the car with his Daddy. He was in mid-scream when she got  into the car, and he recognised her immediately and the scream turned into a smile followed by much laughter as she greeted him with a tickle!</p>

<p><img alt="marcustiggakeys.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcustiggakeys.jpg" width="350" height="499" /></p>

<p>Marcus with Tigga, his No. 1. Babysitter</p>

<p>The next day we had to introduce Tigga to various people and settle her in very quickly, because in the evening we had to drive back up to a hotel in Miami as we were taking an early flight out to Caracus in Venezuala! It was a bit hectic and for me traumatic leaving Marcus. Although I knew rationally he was in good care and would be well looked after, I still couldn’t face the mere thought of leaving him.</p>

<p><img alt="marcusbeads.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusbeads.jpg" width="350" height="436" /></p>

<p>Marcuswearing all the beads he collected at Fantasy Fest, Key West.</p>

<p>He was blissfully unaware of course, and he came to the door and waved us off quite happily. As Steve (Mr Rational) said, Marcus was only interested in where his next bit of entertainment and meal were coming from, and he was going to get plenty of attention and care, especially as Tigga’s boyfriend, Matt was flying out later that week for 10 days over Xmas!).</p>

<p>So they all had a great time, and once away on this trip, I was far too busy doing it and surviving it (with 17 flights in 2 and a half weeks, and many early-morning starts, ahhhhhhhh, it was intense!) to overly worry about Marcus (though I still did and I missed him like mad, but I still only called 3 times over the 2 and a half weeks which I think is pretty good for a mother of a 1 year old!). I just felt grateful to be on the trip at all (with my trusty MuSmate to make getting to the toilet on all the flights possible!) and surviving it was enough on it’s own to be honest. I could never have handled having Marcus along with us as well!</p>

<p>At Angel Fall, I got the surprise of my life as Steve asked me to marry him! After 8 years together, a successful mobility scooter business a baby and MS, I had thought he just wasn’t the marrying type and accepted that. However it turns out that he had been planning to propose to “his angel” at Angel Falls for a few years, but the whole trip just didn’t happen when Marcus came a long. He still kept up his training in the Gym, so he could manage to carry me all the way up to the Falls!</p>

<p>It the event, however, he discovered that this would have been too difficult and dangerous even for a team of men, as it was too far, too steep, too rocky and therefore too dangerous.  So after the 6 hour canoe ride (the canoe held about 12 people) to get to the bottom of the climb up to the Falls, (we had a 4.30 am start that morning!), I rested below in a lovely hammock in the jumgle, and Steve set off to make the 3 hour climb up to the Falls, which he did it just 1 and a half hours leaving the rest of the party miles behind! All that training paid off!). I saw the Falls from afar when we pulled up in the boat down below, and I also saw then from an aeroplane on a flight we took the next day so I didn’t miss out at all but I had no idea what Steve was  planning!  </p>

<p>Despite his disappointment that he could not actually carry me up to the Falls, Steve did the next best thing and videoed his marriage proposal to me, before he then went to swim in the pool at the bottom of Angel Falls and enjoy it’s spray! We were lucky as there was quite a lot of water coming off the Falls at the time we were there. Sometimes there is hardly any! It is famous for being the tallest waterfall in he world, being a mile high!</p>

<p><img alt="steveangelfalls.jpg" src="http://www.healthdiaries.com/ms/sylvie/steveangelfalls.jpg" width="400" height="533" /></p>

<p>Steve videoing his marriage proposal to me at the foot of Angel Falls. </p>

<p>I had no idea what Steve had done until we got back to camp that evening and he played me the video back. I was shocked, stunned, gob-smacked and speechless at seeing the Falls up close and hearing Steve’s romantic proposal, but I did manage to say ‘Yes!’ and it was hard to keep a smile off my face for the rest of the trip.</p>

<p><img alt="steveproposes.jpg" src="http://www.healthdiaries.com/ms/sylvie/steveproposes.jpg" width="400" height="492" /></p>

<p>Steve proposing again, this time in person, at the lake down on one knee.</p>

<p>And it was some trip! We went on 17 flights in 2 weeks and 4 days. The schedule was mad, it nearly killed at times, but we got to Galapagos Islands, and Easter Island off the coast of Chile. We saw the huge Moi’s, the stone figureheads, located all around the Easter island and for me to get to Galapagos islands was a major achievement.</p>

<p>At Quito, before we went on the Galapagos trip, we even visited the Equator and stood on the actual line! They showed us a demonstration as well of how water swirls down a sink clockwise and anticlockwise on each side of the Equator, so no, that’s not a myth!</p>

<p>For Galapagos we chose a small cruise trip, The Seaman,  so it wasn’t very disabled-friendly, but I managed, and te advantages were well worth it. Whilst a big cruise-liners would have made it difficult to get on and off with all the stairs and health a safety regulations for taking a disavled person onto the islands, our cruise boys made it easy. They just bunged me onto a dingy, bunged the wheelchair on the dingy and then there I was on ths Galapagos islands seeing EVERYTHING…</p>

<p><img alt="galapagosseal.jpg" src="http://www.healthdiaries.com/ms/sylvie/galapagosseal.jpg" width="414" height="310" /></p>

<p>Seals, huge iguanas, penguins, a huge variety of birds and wildlife, and when we went snorkelling we saw fish, turtles, and allsorts, Steve even saw a shark! </p>

<p><img alt="galapagosiguana.jpg" src="http://www.healthdiaries.com/ms/sylvie/galapagosiguana.jpg" width="400" height="294" /></p>

<p>On the main island we got too see the huge +200 year old tortoises up close in both a park and the wild. </p>

<p><img alt="tortoise1.jpg" src="http://www.healthdiaries.com/ms/sylvie/tortoise1.jpg" width="400" height="360" /></p>

<p>Steve even kissed one called Ranger, and it is said there was another marriage proposal, but that this one was turned down on the grounds of bad breath and scaly skin, but Steve is now working on these issues, hahaha!</p>

<p><img alt="steveranger.jpg" src="http://www.healthdiaries.com/ms/sylvie/steveranger.jpg" width="350" height="428" /></p>

<p>Steve kisses Ranger</p>

<p>Angel Falls was stunning and being proposed to there was the icing on the cake for me. Galapagos was spectacular and mind-blowing.</p>

<p><img alt="sylvietortoise.jpg" src="http://www.healthdiaries.com/ms/sylvie/sylvietortoise.jpg" width="450" height="338" /></p>

<p>Easter Island was a part of the trip that was really too much for me with the flights to get there and intense schedule. Both Steve and I ended up pretty ill in Santiago on the way to Easter Island and on the way back and I found it too long a time to be away from Marcus, but looking back I am glad I went. How many people can say they spend Xmas Day on Easter Island? I used a wheelchair to visit the island, and it was very bumpy (and quite hard-work for Matthew and Steve as well!) but I DID IT!</p>

<p><img alt="steveeasterisland.jpg" src="http://www.healthdiaries.com/ms/sylvie/steveeasterisland.jpg" width="425" height="291" /></p>

<p>The best sight of the whole holiday, sad though this may sound, was for me seeing our Marcus again, who was in the baby pool with his Tigga, when we got back. Marcus just stared at his Dad, when we arrived, and stared and stared, then he started to cry as his Dad stepped away to let me in the pool area on my scooter. If was as if he suddenly realised, hang on, where have you been, I knew there was something missing….and then panicked at the thought of his Daddy going again. After just 2 hours of cuddles and playing and not letting his Daddy out of his sight, life went back to normal for our boy and he was just fine again!</p>

<p><img alt="marcuswig.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcuswig.jpg" width="322" height="393" /></p>

<p>Our happy boy back with his Daddy.</p>

<p>We then spent a happy new year in the Keys, introduced Tigga to the delights of Key Lime pie! She also swam with dolphins, a dream of hers since she was a very young girl.</p>

<p><img alt="tiggadolphins.jpg" src="http://www.healthdiaries.com/ms/sylvie/tiggadolphins.jpg" width="400" height="268" /></p>

<p>Tigga swimming with dolphins, father, AJ (who checked out her bum!), and son Tanner.</p>

<p>All too soon (one week later) we flew back to cold ol’ England. After two and a half months of sunshine, it was quite difficult to adjust too the winter but almost immediately we caught awful colds, and this year has been tough of me, as we seem to have non-stop bugs and colds all year. This is no fun for anyone, but for me it is particularly disastrous a it trigger my ms as well, and makes me rundown, weak, immobile, shaky and ill. I think it is just the number of people Marcus and I now come in contact with through going to the baby groups, that is the problem, but I’m not yet prepared to give up getting out and about with my boy because of this.</p>

<p>I must admit, Steve and I pick-up and suffer the colds far worse than Marcus. So I can’t even say for sure it is entirely down to him. There has been a lot going about but I am hopeful that with the Spring, will come a break from all these colds. </p>

<p>Since we returned from the Florida Keys on January 6th 2007, we have been enjoying Marcus’s day-to-day developments. The bugs and colds have been tough, but as we approach the Spring, I am hopeful that better weather will bring with it better health.</p>

<p>Tigga, who did not make it to University last September is still living at Steve’s flat and is worth her weight in gold, as things did not work out between Terri and ourselves, so Tigga now has Marcus on both her days off (so Tuesday 10 am till about Wednesday 6 pm, is my time for work, exercise, therapies and often just recovery, and I need that too. Marcus then goes to his Grandma’s (my Mum’s) for most of the day on Thursday and we often go up to my parents house on Sunday’s as well. Marcus cannot contain his delight whenever he sees his Grandma. She is the favourite person in his Universe (though his Daddy is of course the back bone!). I think it is partly because of his musical interests (watching her play the violin, and also playing the piano up at their house), but also his love of nature. They go ut into the countryside together, to the stream, the Brook and the Parks, and Marcus loves it. He always comes back completely shattered!!!</p>

<p><img alt="marcusanddad.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusanddad.jpg" width="502" height="350" /></p>

<p>Marcus wearing a hat we bought in Quito, Ecuador.</p>

<p>As toddlers go Marcus is very close to perfect (if he was actually perfect  I would be very worried as toddlers are not supposed to be perfect!!!). He is a very happy little boy, very bright, and always laughing, especially with his Dad, who he totally gets (they are as thick as thieves!). He is very good-natured and a little charmer, so much so that when you are with him, it is like being a celebrity, as Marcus becomes the centre of attention wherever he goes. I get on the tram with him on my lap and by the time we get off he has made at least one new friend and been adopted by a grandma-type lady! (people are always so lovely and willing to help, especially as it is a unusual sight to see him on my lap on the scooter. I make sure I hold him tight, drive very carefully, and keep distances to a minimum!). We  often go to parent and toddler groups, which Marcus thoroughly enjoys and also Upperthorpe Healthy Living Centre/ Library, where he loves toddling about and seeing people he knows,and going to the pool, the sports-hall, the Gym and the cafe.  His latest favourite activity there is to call the lift, which he can almost reach, and we go in it together and go up to the next floor in it. He loves it when it judders. Everything is new and exciting and wondrous to Marcus and it is a real joy to see his joy in everything he sees and experiences! </p>

<p>Recently I have become brave enough to take the tram to town with him (only a few stops) and I do a bit of simple shopping and then take him to the peace gardens, where there is a wonderful fountain, and then to see the big shiny balls and onto the Winter Gardens, all of which he loves.</p>

<p><img alt="marcusfountains.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcusfountains.jpg" width="400" height="383" /></p>

<p>Marcus at the peace gardens in Sheffield town centre.</p>

<p> Sometimes we then go onto a Baby Group held in a church off Chapel Walk called Jelly Babies. The reason I say I am brave enough is because of my bladder urgency, which takes some managing with a toddler on your lap, but I wear pads and padded pants and only rarely do I get caught out. The padded pants are so not cool but necessary to avoid embarrassment. I can’t just get up and use my Pipinette pot discreetly with a toddler on my lap, and likely to run off if I stand him down, and the last thing I want it an accident especially as Marcus gets older and becomes more aware. <br />
 <br />
 My Dad’s health has not been as good of late. Having the throat operation last summer really aged him. It was a big thing to go through at the age of 78 and it has caused him a lot of shoulder- and muscular pain.  He is also a bit forgetful now and can get a bit confused, and it January he had a fall (we think he stumbled) and cut his head, but he is doing very well considering, and I am very grateful that the operation took out all the cancer. I love my parents so much and value the time we have together, especially now with Marcus too. </p>

<p>My brother Matthew came back from his exciting six months travelling the world, after working on a placement at a hostel for young girls, in Mongolia, and he has been living back with my parents and working once again as a careers advisor in Leeds, commuting there everyday. He is a great support to my parents and a great Uncle Coconut to Marcus. </p>

<p>My Grandad, Marcus’s Great-Grandad, is still going strong and managing to live and care for himself alone down in Somerset, even though he is now 96 years old. My Mum and her brother, Uncle David, go down and stay as often as they can, for a few days at a time, to give support, company and lifts to places, as Sidney has at long-last given up driving (thank goodness) after an incident in a car-park where he hit a few cars! To help him decide whether a mobility scooter would help him,  I lent him my 8 mph scooter, and it has enabled him to get out and about again, which was my aim, and he did end up buying it off me for a very good price (it was a bargain!). He didn’t have to pay anything but it was important to him that he actually owned it and it seems to be helping him (he can take the scooter out somewhere and then park it up, go for a short walk, and then come back to it, so I am pleased. It means he can stay active and the world is more accessible to him again. It was a bit of a disappointment to him at first, but only because it wasn’t a car and could never do the job of a car, but now it is proving it’s worth. As my Grandad is rather hard of hearing as well  as in his 90’s, he lives a quiet life, quite detached from the world but he does ok!</p>

<p>As I write this latest blog I have come down with yet another cold. They make me weak, shaky and make life very hard indeed. I am very grateful for having such a good fella, such a good family and such good babysitters for Marcus, because there are times when I can barely look after myself, let alone him. </p>

<p>This Easter Sunday we went to my Dad’s church for an Easter breakfast and short-kiddies service. During the service Marcus had a fabulous time toddling around at the front, picking up daffodils and handing them to people. He then joined the pianist playing the piano!!! It was so sweet and so funny! We then went up to my parents house and Steve cooked us a delicious meal  of salmon (lemon, garlic and ginger), basmati rice, potatoes and roast vegetables. Though I felt wiped out with this cold I had a lovely time.</p>

<p><img alt="marcuspiano.jpg" src="http://www.healthdiaries.com/ms/sylvie/marcuspiano.jpg" width="350" height="466" /></p>

<p>Marcus sat at the piano at his Grandma and Grandad's house</p>

<p>I have recently been seeing a Chiropractor but don’t seem to have benefited a great deal from the kineseology and cranial therapy. However, I ill continue to seek therapies to help me.  I saw another Chiropractor in the Florida Keys and he found that my spine does not curved back enough at the top, so my head rests too far forward putting my nervous system under stress. It is a common condition (<a href="http://www.idealspine.com/pages/AJCC/AJCC_new/July2002/meyers.html">Click Here</a> for further information), but once corrected might help me further stabilise ms, so I use a neck collar twice daily (early morning and at night before bed) for 20 minutes, and a head weight belt for 10 minutes two or three times a day. Whether all this will benefit me at all remains to be seem, but I figure it is better off corrected than not. I leave no stone unturned in my journey back to health, remembering that the only failure is not doing your best. Right now boosting my immune system with zinc, vitamin C, GFSE and raw garlic are my priority because my low immunity is the main problem in the bigger picture. I’d prefer to fix this than live my life in fear of coming down with colds, though it might not do any harm to go easy on the baby groups for a little while! So I journey on with courage, onwards and upwards! <br />
</p>]]>

</content>
</entry>
<entry>
<title>Marcus is a happy baby boy!</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2006/09/marcus_is_a_happy_baby_boy.html" />
<modified>2007-02-14T22:22:12Z</modified>
<issued>2006-09-24T20:57:44Z</issued>
<id>tag:www.healthdiaries.com,2006:/ms/sylvie//70.5258</id>
<created>2006-09-24T20:57:44Z</created>
<summary type="text/plain">Well Marcus is now 11 months old and he is crawling, climbing and grabbling things like a nutter. He thinks life is a blast and smiles and laughs all the time. He only cries when he is tired or hungry...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>Well Marcus is now 11 months old and he is crawling, climbing and grabbling things like a nutter. He thinks life is a blast and smiles and laughs all the time. He only cries when he is tired or hungry so we are really lucky! He is such a charmer, I have all the neighbourhood teenage girls (who I have known since they were little) knocking on the door and asking to play with Marcus and take him out to the Park or the shops! This is proving to be a real blessing, as I know I can trust them, (they adore him and look after him so well!) as it gives me a much-needed break.</p>

<p><img alt="marcusmumpolarbear.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusmumpolarbear.jpg" width="263" height="350" /></p>

<p>The last 11 months have been such a roller-coaster and at times I have wondered if I was going to survive but I am doing OK considering. I could be better but also could be so much worse. I managed to walk with my walker to the first lamp-post around the corner today, something that had become impossible in the last few weeks, as my left ankle refuses to lift. I do a lot of gentle exercising and mobilising it at the minute, which helps, but it is a relief to walk just that short distance today, as I believe in the philosophy “Use it or Loose it”. However, I became so weak and rundown that the slightest thing exhausted me and I had to conserve my energy and use what I had, to look after Marcus. I has not realised just how much energy I expend looking after him, so in the last month swimming or going to the Gym have not been on the cards, a fact I don’t feel good about.</p>

<p><img alt="marcuscloseup.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcuscloseup.jpg" width="350" height="263" /></p>

<p>But I am counting my blessings, of which there are many! A couple of weeks a go I had a set-back with MS, triggered by goodness knows what. I lay down for a rest one afternoon and could not get up again. I could not stand or transfer or do anything independently and it scared the hell out of me, no doubt triggering anxiety, which made it all worse. Anyway, I went to bed, took two paracetamol, rested, played with Marcus on the bed, played my affirmations tape, calmed down, and THANKFULLY was able to transfer to the commode as usual that night. The following morning, I could get around as usual (without help), which means the world to me, and I celebrated by making cups of green tea all day long, SIMPLY BECAUSE  I COULD! I am addicted to drinking tea, and it is important to me to drink enough liquid to keep UTI’sa at bay, especially at this time of year (the autumn), so I happy overjoyed to be able to do this and cope with the consequences of this (frequent visits to the loo!).</p>

<p><img alt="marcusdungarees.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusdungarees.jpg" width="247" height="350" /></p>

<p>I think this event was triggered by a bug still haunting us from Marcus’s stint at nursery. I had an event a few months earlier triggered by a very nasty bug Marcus brought into the house from nursery, and again I could not get out of bed, but I also could not stop being sick so I knew what was causing that event and did not panic as much. A jab from the doctor stopped me vomiting and thankfully I did recover my ability to transfer etc. again, so that crisis passed. </p>

<p>Thank God for Grandparents and Uncle Coconut (my brother) is all I can say as they had Marcus for two nights and we needed the back-up because Steve has come down with that same nasty bug 24 hours earlier and he too had been unable to get out of bed, which shows how bad that one was, because he is a strong, fit man! Luckily, I was ok to look after Steve and then when I got sick he was ok to look after me (and run the business) but we could not have coped with Marcus at that time as well!</p>

<p><img alt="babuschka.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/babuschka.jpg" width="262" height="350" /></p>

<p>Anyway, the end result after two months of Marcus streaming with cold after cold and having diarrhoea from bug after bug from nursery is that we pulled him out of there. It was a shame because he did love it and was very well looked after, but we could not take any more!!! It wasn’t much fun for Marcus either. </p>

<p>They do say that it is good for a baby to build up an immune system early, but when you put 7 babies in a room together, and they are all building up immune systems, it is a real breeding ground for germs, and a recipe for disaster for me anyway. The doctor told me that after 12 months it would settle down, but I still think that it you come across nasty bugs and viruses, you will generally get them, as proven by Steve who is fit and healthy and was still knocked for six by one, so we have decided to cross this bridge later (not now and later). </p>

<p><img alt="marcusbath.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusbath.jpg" width="350" height="263" /></p>

<p>Those two months proved that Marcus’s immune system is working very well the way his eyes and nose were streaming with cold and mucous and nothing went onto his chest. In fact he handled the whole deal a lot better than us, but it did cause disruption of his sleep at night as well, which added to the load Steve was managing. </p>

<p>Steve has been unbelievable in how he managed to run the business, which has been very busy and put him under extreme pressure, whilst caring for Marcus at night and coping with me needing help as well. Sometimes the pressure has been too much and we have had some explosive rows but he is still here and loves his boy and seems to still love me, so he is one in a million. </p>

<p><img alt="marcusdadkiss.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusdadkiss.jpg" width="350" height="263" /></p>

<p>I am trying to learn how to simply ask Steve for help and be very specific, rather than moaning and not handling things (a woman’s way of asking for help, as women understand this and naturally act upon it- but men don’t they just react to it!) which simply winds him up. I feel bad about needing help but going on about it does not change the fact that I need it, so I am learning to be clearer and more direct about things (honest!).</p>

<p>So we had to find an alternative to nursery, so that I had the support to manage the childcare! We looked at getting an au pair but you can only get one from age 2 upwards, so we then thought about whom we could hire, and offered the job to Marcus’s favourite babysitter, Tigga. Although Tigga works full-time, she was very keen to look after Marcus in her spare time as well! This has worked out very well, especially as Tigga has girlfriends who adore Marcus as well. Now Tigga is doing a lot of overtime, her friend Terri often has Marcus as well in her day off, and occasionally Marcus is looked after my Roe and Keeley as well. He thinks they are all wonderful! He even went on a day trip to Bridlington with Tigga one day on a coach with a load of other Mum’s and babies, as it was organised by Surestart!</p>

<p><img alt="marcustigga.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcustigga.jpg" width="350" height="263" /></p>

<p>Tigga and Terri needed to find a new place to stay as well, so they have moved into Steve’s flat, and exchange babysitting for rent, a deal which works well for all of us! It is ideal because Tigga is coming out to the Florida Keys to babysit Marcus in the Keys for a couple of weeks while we go off to South America on our travels once again (he is too little to take with us what with the vaccinations needed!) so he will know her very well by then and be a very happy chappy with her. It will hard to leave him and go away but I know he will be in good hands and have a wonderful time with Tigga. They may even get to Disney over Xmas!</p>

<p>Marcus is not content with having 4 girlfriends to love him! Including the local girls, Kirsty, Halish, Michaelea, andStacy, Marcus has 9 girlfriends/big sisters, as many as Steve has <a href="http://www.ivegotthebollockson.co.uk">Classic American cars </a>(as he has just bought two more!).</p>

<p><img alt="usinelectra.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/usinelectra.jpg" width="350" height="263" /></p>

<p>I am continuing to follow my diet, take vitamins and detox as well as everything else. I am taking Parragone again which contains wormwood and should help eliminate candida and parasites. No doubt this is all taking it out of me as well but I am sure my efforts, self-discipline and determination will pay-off in the longer-term. I want to start swimming again and using the Aquagym, but carefully as my energy levels are low and used up caring for Marcus anyway. When we get to the Florida Keys in a months time, I will get back to daily swimming and soak up lots of lovely sunshine which helps protect me against ms as well thanks to the vitamin D3 you get from sunlight so this will help.</p>

<p>This July got so hot a humid it was a bit of a nightmare for me, but this month, September has been glorious. I’ve enjoyed the lovely sunshine but without getting too hot as there has been a lovely breeze! I really do enjoy and value my time with Marcus, especially in the back garden up at my parents house, as he is such fun to be with, and so smiley and responsive! </p>

<p><img alt="marcusbabuschka.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusbabuschka.jpg" width="350" height="263" /></p>

<p>I’ve made some great purchases on e-bay, real bargains! The best one has been his rollator, which he sits in and pushes him about the house in. It saves me so much energy as he rarely climbs out of it (though he can and will begin to soon) and yet is relatively safe and independent. It enables him to walk really, but pretty safely! I even took him out in it the other day and we went for a walk along a footpath after a couple of dogs and had a lovely adventure together, with him rolling along and me on my scooter. It was hilarious to see him go! He was determined to catch up with the dogs but they were equally determined for him not so catch him! I pulled him up any small hills and held him back going down slopes. A nice lady carried him across the road and we ended up in the local library meeting lots of people, many of whom know us, exploring and doing lots of new things! He must have walked at least a quarter of a mile that day!</p>

<p><img alt="marcusgarden.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusgarden.jpg" width="350" height="246" /></p>

<p>11 months is a lovely age and the way Marcus is with his Dad is very special. They are a right pair and Marcus thinks his Dad is hilarious already! We are enjoying the magic and surviving the rest, especially when the little munchkin is tired but really doesn’t want to go to bed even at 11 o’clock at night! We usually let him stay up as long as he is good, because it suits us to let him sleep in a get up at 9.30 or 10.00 in the morning. </p>

<p>He was a bit slow in his weaning onto solid foods because he wanted his milk still and though I’d give him baby food with anything with any lumps in it he’d usually cough and then barf everything up again. But in the last few weeks he has suddenly got the hang of chewing and enjoys eating allsorts. It gets very messy but is great fun, and he has far less milk now as a result. He has also started to sleep through the night now that he has a tummy so much fuller. He likes brown bread and jam, which he often has for his tea but that does get very messy. Another favourite of his is eating a juicy  peeled pear, and he also loves pineapple juice!</p>

<p><img alt="marcusbabyfood.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusbabyfood.jpg" width="350" height="263" /></p>

<p> I don’t think it will be too long before Marcus walks, a prospect that is daunting, but I am trying not to worry about it (I have enough on surviving the present to be honest!). I am just trusting, that if he does start walking in the Florida Keys, which he probably will at the rate he is going, we will cope!</p>

<p>Hopefully Marcus will find as many girlfriends or aunties in the Keys as he has over here! I am just thrilled that Marcus is so healthy, happy and doing so well. It has been very tough this year, and it has taken it out of me and has tested my and Steve’s relationship to it’s limits, but thankfully Steve is a very loyal and strong man so he is still here, still seems to love me, and is totally smitten with his boy!</p>

<p><img alt="marcusdadmirror.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusdadmirror.jpg" width="350" height="318" /></p>

<p>MS and my lack of health have made me feel like a problem a lot of the time, because I am difficult to be around when I am exhausted and ill and I am forever calling him when he is very busy which turns me into a person who seems to be forever bugging him. </p>

<p>My health can be a nightmare and as it is my nightmare, sometimes I don’t feel good about having to share this reality with Steve and Marcus. I simply don’t want to feel like a hindrance or a problem and often I do, but I have to remember that this is not my fault and having Marcus was a very courageous thing to do so they are both very involved in the ‘nightmare’ side of my life. </p>

<p>On the whole though when the dust settles we just simply count our blessings, because we are in a good position financially and Marcus so far has turned out to be everything we could have hoped for and more! </p>

<p><img alt="marcuslibrary.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcuslibrary.jpg" width="350" height="263" /></p>

<p>Apart from climbing, Marcus seems very musical. He loves listening to his Grandma playing the violin! He listens agog and has seems to have a special relationship with her, as he is forever grinning, laughing, climbing up on her for a cuddle. He also loves his Baby Einstein, and David Attenborough DVD’s and his favourite music video is Taylor Hicks, winner of this year’s American idol. I have dedicated one of the songs Taylor sang, to him. It is ’You are so beautiful to me….you are so beautiful to me…you’re everything I hoped for…you’re everything I need…You are so beautiful to me!’ as this sums up how we feel about our boy most of the time. It is also a song that Steve has been singing for years and it is mesmerises Marcus!</p>

<p><img alt="marcusstanding.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusstanding.jpg" width="263" height="350" /></p>

<p>Marcus’s Grandad, my Dad, has had quite major surgery on his face/neck to remove a skin cancer. The doctors must have been quite worried to go in so extensively (the cut goes from the cheek all down his neck) but it seems that they did not find anything more sinister when they went in, so I that is the good news. Still to go through such a surgery at the age of 78 has been quite an ordeal for him. He has had a couple of skin grafts on his face as well. He can’t sleep well due to pain and his shoulder is giving him gip, but all things considered he is coming through this ok. It will just take some time to recover. He needs to rest but my Dad is realty not very good at this. Like me he is an impatient and bad patient. He likes to be busy and active and finds it hard to slow down!</p>

<p><img alt="marcusgrandad.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusgrandad.jpg" width="262" height="350" /></p>

<p>My brother has packed in his job in Luton as a careers advisor as it was time to move onto something new. He then came back to Sheffield, coincidentally that was during the world cup so he got to watch all the matches…hummmmm funny that. It was good timing though as I really appreciated having him around for a couple of months helping me with Marcus. He also did some delivery work for Steve, which was helpful as Steve’s No.1 scooterman Paul, was off having a kidney removed, one which was damaged during a car crash the week after Marcus was born, caused by a drunk driver! So between scooter work, babysitting, organising our autumn South America trip, organising visas for his own extensive travel plans for the year and watching footie he was kept pretty busy!</p>

<p><img alt="marcusunclecoconut.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusunclecoconut.jpg" width="263" height="350" /></p>

<p>Then in July he went off to Mongolia, travelled around the country for two weeks and then started a voluntary work placement, working and teaching at a drop-in centre for young girls. He will work there for a few more weeks then he is off on his travels to China and will meet up with us in South America in December! </p>

<p>Now that the scooter business is calming down and Paul is taking over the running of it again, and we have the girls helping to look after Marcus, I can look after myself a bit more and we can start enjoying a bit more family time together. Trying to explain the fatigue to Steve and the shimmery and blurry vision that comes with it, a sign telling  me that I must rest, is very difficult. How does one explain to a person who doesn't suffer fatigue that one is completley wiped out, sometimes having done next to nothing?. </p>

<p>This summer we did manage to get down to Somerset so that Marcus got to meet his 95 year old Great-Grandad, which was lovely, and while we were down there we visited Longleat and Cheddar Gorge which was fun! </p>

<p><img alt="greatgrandpamarcus.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/greatgrandpamarcus.jpg" width="263" height="350" /></p>

<p>The other events this year were the surprise 50th Birthday party I organised for Steve (which took some doing!). I booked the function room in the pub just across the road and organised a buffet and our nephew Stephen Singleton (who was in the 80’s band ABC) offered to do the DJ’ing. Anyway, everything was going to plan and then just at 8 pm the time I had organised to get Steve across to the pub (saying the Do was a friend’s wedding reception), the heavens opened and it poured down! It was like a tropical storm and there was so way I could have persuaded Steve to go out in it, never made take baby Marcus as well. So in the end I had to tell him. I thought he knew anyway as there were so many clues, strange letters, and phone-calls, even his lodger Iman turning up at the house with a B’day card and present, but he hadn’t suspected a thing. </p>

<p>So our friend, Roger, pushed me over the river that had been a road minutes earlier, and Steve took Marcus and an umbrella and we made it across to the pub as quickly as we could. Thankfully I had organised for the guests to arrive at 7 pm, before the rains had started, and about 40 people had turned up. They could see up coming over the road in the mad storm and when Steve entered the room he was greeted by a round of applause. I then entered to room in Roger’s arms, having been carried up the stairs, and we had a great evening. Marcus in spite of a cold, rose to the occasion (as he always does!) and everyone got to meet him and hold him. I was so relieved that we had  made it over there without being struck by lightening!</p>

<p><img alt="stevebdaybabes.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/stevebdaybabes.jpg" width="350" height="268" /></p>

<p>The other part of Steve’s Birthday was the present I gave him: a 20 minute flying lesson in a Tiger Moth airplane (built in 1941- the year my Mum was born- so 65 years old!). Dues to popularity and the weather, the flight did not take place until September the 4th, but STEVE DID IT! He said it made him fill his pants and was the 3rd scariest think he had ever done (2nd being piloting Stan’s boat, and 1st being scuna-diving) but he flew the plane for a bit and though not for long he flew it well, and enjoyed the rest of the flight, particularly the landing!</p>

<p><img alt="tigermoth.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/tigermoth.jpg" width="350" height="263" /></p>

<p><br />
Last weekend we got to Thorsby market as well (Nr. Worksop) and we plan to go to Skegness as soon as we get a nice day. </p>

<p><img alt="thorsbymarket.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/thorsbymarket.jpg" width="350" height="263" /></p>

<p>So though difficult, sometimes beyond belief, it has been an eventful and exciting year and I continue to take a day and a time and count my blessings! </p>

<p>Sylvie Brown</p>]]>

</content>
</entry>
<entry>
<title>MS and Motherhood</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2006/06/ms_and_motherhood.html" />
<modified>2006-07-27T23:11:45Z</modified>
<issued>2006-06-23T12:18:40Z</issued>
<id>tag:www.healthdiaries.com,2006:/ms/sylvie//70.4922</id>
<created>2006-06-23T12:18:40Z</created>
<summary type="text/plain">As a teenager I discovered that my womb was malformed. Instead of a full womb I actually had two half-sized wombs. That is the just way I was born! The condition is pretty rare. I only discovered all this because...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>As a teenager I discovered that my womb was malformed. Instead of a full womb I actually had two half-sized wombs. That is the just way I was born! The condition is pretty rare. I only discovered all this because I suffered extreme period pain and the doctors found that my period was retaining in the right womb, as it wasn’t connected to the vagina properly.</p>

<p>I had numerous surgeries to try to resolve but in the end the right womb and fallopian tube had to be removed. I was left pain-free at last- thank God-, but with only half a womb, and the belief that it would be very risky for me to have children.</p>

<p><img alt="gynyhalfwomb.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/gynyhalfwomb.jpg" width="300" height="263" /></p>

<p>Then MS came along at the age of 21 and I decided that Motherhood was not my destiny. It did take years for me to be ok with this. When I got together with Steve, the mobility scooter man some 7 years a go, his love was unconditional. The last thing he expected of me was to produce babies so at last I felt free of this obligation. I still felt a bit guilty, but at least now it was ms’s fault and not my malformed womb! </p>

<p><img alt="sylvieflyingpast.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylvieflyingpast.jpg" width="309" height="199" /></p>

<p>To be honest, I was just grateful to have managed to stabilise my progressive and nasty form of ms, through dietary changes, nutrition, exercise, a positive attitude and luck, fate, the grace of God or whatever you would call it!  </p>

<p>Steve and I were happy together. We enjoyed long, winter holidays in the Florida Keys, which no doubt helped protect me from ms, with all the vitamin D from the sunshine. We travelled to Disney-world, the Grande Canyon and then even to South America…with my trusty mobility scooter! We went into business together selling mobility scooters on the internet and the business took off so I had to become self-employed. We bought a house together, and though Steve didn’t actually move in, he was over a lot, especially at the weekends! MS was still a day-to-day challenge but we were pretty happy. Neither of us felt that there was anything missing from our lives. </p>

<p><img alt="sylsteveforest.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylsteveforest.jpg" width="280" height="215" /></p>

<p>And then it happened. I missed a period, but as I was irregular anyway and detoxing I thought nothing of it! Weeks later though I started feeling really tired, weird and anxious. It was like permanent PMS! I began to feel suspicious. Then one day I had a strong craving bacon, beans, sausages and chips, which is not like at all as it is a far-cry from my usual ms diet! I did not really need to do a pregnancy test, but I did one anyway and it was positive! I was horrified! </p>

<p>A scan the following weeks revealed that I was 8 weeks pregnant! The baby was already 1cm, and there was a strong heartbeat! Although I was terrified I knew I had to go ahead with the pregnancy and leave the outcome to fate. No one knew whether my half-womb would carry the baby long enough to survive. The baby might be premature, anything could happen.  The consultant told me that if I got to 32 weeks, the baby would be fine and they would monitor me closely. </p>

<p>All I knew was that there was a new life inside me, a part of myself and Steve, and that that life deserved a chance. The bottom-line for me was that we did have the financial resources to do this and Steve is an amazing man who would make a fantastic Dad. But even so I just had to trust all would be well and that we would cope emotionally somehow whatever happened. </p>

<p><img alt="ourbaby2_smaller.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/ourbaby2_smaller.jpg" width="400" height="293" /></p>

<p>Scan at 11.5 weeks</p>

<p>Nobody can really know the courage it took to go through with the pregnancy with my half-sized womb and MS (limited mobility, bladder urgency, limited energy). Many a day I often wondered if I was being courageous or just foolish. Would the baby make it? Would the baby be ok? Would my relationship with Steve survive? I went to every scan with trepidation, only to be told that the pregnancy was progressing fine, just like Steve said it would. He just seemed to know that it would be a boy and it would be OK!</p>

<p>Throughout the pregnancy I had been a bit better with ms. MS often goes into remission during pregnancy! At 32 weeks, I heaved a huge sigh of relief. Towards the end of my pregnancy my bladder went from bad (which it always is) to appalling but the baby was pressing on it and kicking it like a football so I was prepared for this and just coped with it. </p>

<p>At 35.5 weeks I was booked in for a caesarean section, as the baby was breech. I came back from the hospital feeling shocked. I knew from all the scans what was happening but I still did not really believe it. That is why I didn’t buy any baby things until our baby had arrived safe and well. I did not want to tempt fate. </p>

<p>At 36 weeks, baby Marcus decided he’d run out of room and it was time to arrive. Thankfully earlier that day Steve, coincidentally, had bought two tiny baby-grows and thank God he did because at 5.32 pm on October 22nd, Marcus was born by caesarean section. He was a good 5lbs 11Oz, and did not need any special care!</p>

<p><img alt="marcus1.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus1.jpg" width="338" height="450" /></p>

<p>Most people say that the day they have a baby was one of the best days of their lives. I describe it as the day hurricane Marcus, which I knew way on its way, hit. Having a caesarean was the most surreal experience of my life and actually pretty traumatic. I felt shaky and sick while they pulled a tiny new person out of my stomach but was reassured that was all quite normal. It was all a bit of a blur really! </p>

<p>I spent a full week in hospital. I had my own room with nurses on tap, but got precious little sleep, as I was determinedly breast-feeding and Marcus knew it was best to stimulate breast-milk at night, It was really tough but I had no choice but to get on with it. Marcus was healthy thank God and I had created him and had to deal with the consequences!</p>

<p>One morning, 4 days after he was born, I was in floods of tears, thinking what the hell have I done! Marcus sleeping like a cherub beside me, blissfully unaware of the night of hell he had just put me through but I was almost hallucinating from sleep deprivation and had the baby blues. A clinical psychologist chatted to me and assessed was that the main problem was that I was outside my comfort-zones in the way I managed my ms (rest, sleep, avoidance of stress, diet etc.). This was very true! </p>

<p>I had a tiny person to care for now and could not care for myself as well so who was going to care for me? When Marcus did sleep I was still being woken by my bladder, or kept awake by troublesome leg spasms? How was life going to go on? </p>

<p><img alt="marcusscreams.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusscreams.jpg" width="338" height="450" /></p>

<p>I came home and Steve and I just got on with the job we had to do. We did shifts at night, which worked well! At least that way we each got some decent kip at night. Six or 7 hours felt like luxury to me, even though I really need more! </p>

<p>In the first couple of months after Marcus was born Steve and I had a few explosive rows, mostly because I was not coping and he felt I was criticising him. Steve was under an enormous amount of pressure running the mobility scooter business, caring for Marcus, being a house-husband, caring for me as well, and sometimes the pressure took its toll.  </p>

<p>Often I just went into the bedroom and howled because of reality of what I had done to my life. It was mad. I felt as though I’d been catapulted into as alternate universe and it wasn’t a nice one at that! I felt as though my pain didn’t matter anymore. Marcus’s needs had to come first as he was a newborn but I was the one really suffering. Yes, Marcus had care needs and was biologically programmed to scream to get these needs met, but there were no tears. I was the one who was really distressed. </p>

<p>Often I wondered if our relationship was going to survive. I felt as though Steve hated me and felt so alone (he doesn’t and I’m not, but remember at the time my hormones were all over the place as well). Sometimes Steve was very loving and came into the bedroom and hugged me. Like myself he was just doing his best with one hell of a lot on his plate. There were no easy answers. You just have to muddle through.</p>

<p>On top of everything else, I faxed the local press my story and the world went a bit mad. We ended up on the local news, local papers, and the story even made national press. It was mad but great fun as well. A moment of fame and glory!</p>

<p><img alt="wrightfamily3.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/wrightfamily3.jpg" width="338" height="450" /></p>

<p>If you have a chronic illness like MS, you cannot push and push yourself for too long, and after two months of this life, I became very run-down and my ms got worse. I was ill, immobile and my legs kept shooting out in front of me in spasm, making it very difficult to transfer and a struggle at times just to get out of bed. </p>

<p>I was very scared. I had worked so hard to reclaim some mobility and my independence and now my whole life, as I knew it, was under threat! I was verging needing a higher level of care and I was not going to give into this lightly. </p>

<p>It is so typical to relapse after having a baby, I was annoyed that I’d ended up following this trend but looking back, I actually think it is remarkable that I managed to do so much. I’ll never know whether it was the drop in pregnancy hormones, or the stress and exhaustion that triggered my ms to worsen, but I suspect it was the latter!</p>

<p>Anyway, at this time Marcus stopped taking both breast and bottle, so I stopped doing nights altogether. I slept and slept like there was no tomorrow. I must have needed it. I saw my nutrition consultant and we made plans to get out to the Florida Keys in April, when Marcus was 5 months old. </p>

<p>Life went on and I started to recover, and actually enjoy being a Mum. As a day job I could handle it! I had managed 2 months of breast-feeding, which no one else could have done for me, and that was done now. Stopping then was the right decision for us as Marcus was thriving, but he only had one Mum so it was vital that I looked after myself.</p>

<p>If I had to do it all again, I think I would push myself less and look after myself more. I’m not even sure that breast-feeding was the best thing for us, but I hope that it benefited my baby boy. Marcus seems just fine on cows-milk formula now anyway so it is hard to assess. We did try him on goats-milk formula for a while too as it is easier to digest and closer to breast milk but really he has been fine on either.</p>

<p><img alt="marcus_coolkid.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus_coolkid.jpg" width="450" height="338" /></p>

<p>At around 2 months Marcus started to smile and express his lovely little personality. We were both helplessly smitten with our beautiful, bright, healthy, fun little boy! As he grows he looks more and more like his Dad, and seems to take after him too in that he finds life very humorous, and yet has a good temper on him when he wants something like his milk! When I think of how premature he could have been I really do count my blessings! </p>

<p>We did get to the Florida Keys when marcus was 5 months old and he loved it there. He loves being out and about, having lots of people to smile at and he loves swimming too. The sunshine and swimming did me a lot of good as well!</p>

<p><img alt="marcussunhat2.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcussunhat2.jpg" width="338" height="450" /></p>

<p>Steve had his friend Paul running the business while we were away but had to take over the business again in the last month. As a result the job of caring for Marcus fell back onto my shoulders again, but the game has changed! He is getting too heavy for me to lift now, is demanding more and more attention and sleeping a lot less during the day (but better at night). He can roll about and is verging on crawling. The job had become too much for me. I have ended up exhausted and worse in my legs again. So I have made the decision to put Marcus is nursery part-time. We found a great nursery close-by and it all just feels right. </p>

<p><img alt="myboys3.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/myboys3.jpg" width="338" height="450" /></p>

<p>Marcus thinks it is baby-heaven there so it is proving good for both of us. I need that time to work, rest and go swimming etc. so as to look after myself. My only concern is that he may pick up colds and bugs from the other babies at nursery (he’s already has one after just a couple of days there) and pass them onto me, but this is one of the hazards of having children when you have ms. He needs to build up an immune system. Protecting him from colds etc. won’t do him any favours in the long-run so I will just have to try to ward them off or failing that just handle it!</p>

<p><img alt="marcus_toys.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus_toys.jpg" width="338" height="450" /></p>

<p>There are so many joys in having a baby. He is so precious to us and he is a good baby as babies go so we are very lucky and blessed. He is a real charmer, especially with the ladies. We have so many laughs and precious moments with him and it is wonderful the way he has bonded so well with his Dad! </p>

<p><img alt="dudes.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/dudes.jpg" width="338" height="450" /></p>

<p>But there is a lot that is very tough and pretty horrible in having a baby too, and with ms it is at least 10 x harder. Any parent will tell you, you love your baby but you don’t always like him or her! The extremes of emotion you feel about your precious little bundle have to be experienced to be understood! You feel such love and just want to protect them but you have limits and cannot always cope. Part of you just craves your old life back. There are many times that I have wished Marcus had not come along, but I don’t regret his existence if that makes sense! We could no have wished for a cuter and lovelier-natured baby boy.</p>

<p><img alt="marcus_mum_recline.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus_mum_recline.jpg" width="338" height="450" /></p>

<p>However, I don’t like the way having a baby has upset the balance of my relationship with Steve. Before we were equals but now he has to compensate greatly for my health limitations so he is the always the hero and I am the one who is forever expressing appreciation and gratitude. I am lucky, however, that he is strong and fit enough to do so much. I just don’t like adding to the things he has to do because either I need help myself, or I need help with Marcus, but that is just the way it is. </p>

<p><img alt="marcusbiker_floats.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusbiker_floats.jpg" width="450" height="338" /></p>

<p>He just gets on with it and thinks his baby boy is pretty perfect so I suppose that is all that really matters! I do find it ironic that perhaps the only condition for Steve’s love for me, was in fact not having children, simply because it is a lot to ask of him. He does so much more than Dad’s conventionally do, and then he has to help me as well!</p>

<p><img alt="theboys.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/theboys.jpg" width="338" height="450" /></p>

<p>I don’t feel as though he loves me like he did before, partly because it is hard for him to be around me when I am beyond exhausted, unwell or feeling tearful, and also because we just don’t have the time or energy to be together as we were, but maybe I am underestimating his loyalty here. Time will tell I guess. </p>

<p><img alt="usinmirror2.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/usinmirror2.jpg" width="450" height="600" /></p>

<p>When I have asked him about this, he just says that he didn’t run away 7 years a go when we met, and we have been through worse than this together and that is true.</p>

<p>I don’t feel great right now, because I can’t manage Marcus alone anymore for more than a few hours. He gets bored easily and I can’t keep lifting him. It’s not a nice feeling as his Mother to know that he is better off with someone else now, for his care needs at least (his emotional needs he will need me for later on I’m sure).</p>

<p><img alt="marcusmum_paddpool.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusmum_paddpool.jpg" width="338" height="450" /></p>

<p>I feel bad when I am looking after him and can’t cope and feel guilty and redundant when someone else is doing it, but none of this is my fault and the main thing is that he is loved, cared for, safe and happy!</p>

<p><img alt="chucky_egg.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/chucky_egg.jpg" width="450" height="338" /></p>

<p>One great thing, however, is that I can now take him out on my knee on my mobility scooter short distances, to the local library, the Gym, the swimming pool or the local shops, and he is very entertained and happy! I enjoy this time with my boy, away from home and independent from Steve. To make it safer though as Marcus gets bigger and more wriggly, I am getting a baby sling so I can strap him to me when he travels out with me!</p>

<p><img alt="uslaydown.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/uslaydown.jpg" width="450" height="338" /></p>

<p>So I have decided to focus on my strengths, what I can achieve! I am so lucky to have a gorgeous baby, a loving partner, a lovely home and to still be living a relatively independent life. 7 years a go when ms was progressing rapidly, I never thought I’d make it to 30 never mind make it to 32 and become a Mum so in a way my whole life is a bonus- but I still don’t want to get worse again. I am only human and want to sustain my health as much as I can for Marcus and Steve as well as myself. However, what will be will be. These are the extra risks I have taken on in having a baby.</p>

<p><img alt="marcus_towel.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus_towel.jpg" width="450" height="338" /></p>

<p>No one knows what the future may holds anyway, so we are just taking a day at a time right now, enjoying the joys of parenthood and surviving the rest. I have nothing but respect for single parents. I know not how they do it but, in a way, I do think that having a baby with ms is in many ways as tough as being a single parent! Being a single parent with ms now that to me must take a super-human strength, especially with little ones- but people do it and live to tell the tale!</p>

<p><img alt="marcus_waves2.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus_waves2.jpg" width="450" height="338" /></p>

<p>So if you have MS and are thinking about having a baby, I say as long as your relationship is solid enough and your partner fit enough (or you have very good family support or can afford to pay for child-care), go for it! If not think very carefully about what you are potentially taking on! It’s one of the richest and most amazing journeys in life but it’s also one of the toughest!</p>

<p><img alt="marcusmumdisney.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusmumdisney.jpg" width="450" height="338" /></p>]]>

</content>
</entry>
<entry>
<title>Life has gone on and Marcus is blossoming</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2006/03/life_has_gone_on_and_marcus_is_blossoming.html" />
<modified>2006-06-08T17:07:15Z</modified>
<issued>2006-03-19T23:54:29Z</issued>
<id>tag:www.healthdiaries.com,2006:/ms/sylvie//70.4541</id>
<created>2006-03-19T23:54:29Z</created>
<summary type="text/plain">Well in 3 days Marcus will be 5 months old and in 6 days we will fly off to the sunny Florida Keys at long last. I am ready for some serious sunshine and swimming therapy now! The first two...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>Well in 3 days Marcus will be 5 months old and in 6 days we will fly off to the sunny Florida Keys at long last. I am ready for some serious sunshine and swimming therapy now! </p>

<p><img alt="little_bear1.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/little_bear1.jpg" width="338" height="450" /><br />
 <br />
The first two months after Marcus was born were totally mad. It was as if I had been thrown into another universe and a crazy one at that, what with trying to recover from the caesarean whilst breast-feeding, which is exhausting and did my back in further, doing shifts at night caring for baby Marcus, caring for Marcus a lot during the day too whilst Steve was either on the phone running the mobility scooter business or out on some repair or other business, and on top of all that dealing with the press, both Local and National (but boy was that fun, we made the local news , national press and even sold our story to a Woman’s magazine for over a grande!). I think it was the lack of sleep that was the hardest. We had a few explosive arguments because when I was at the end of my tether, beyond reason you could say, it wasn’t very nice to Steve to come in and deal with and he often took it personally. I wasn’t criticising him but it often felt like it. We were all doing our best and doing well. I usually ended up having a bath at around that time just for a bit of time off, peace, relation and sanity and that did revive me. </p>

<p><img alt="little_bear2.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/little_bear2.jpg" width="338" height="450" /></p>

<p>Physically I wasn’t doing too badly at all. My legs were stiffer and my back painful from the caesarean, and all the angles lifting and handling baby Marcus but by January my legs got worse, especially my left leg and foot which I could hardly lift at all. I was starting to struggle to get out of bed and onto the toilet, transfer to and from the wheelchair etc. and that scared me, as I value that independence so, so much! Needing help to get in and out of bed, into the wheelchair, one the toilet etc. takes you to a new level of care and that is something that I fight my hardest to avoid at all costs. That IS WHY I DO WHATEVER IT TAKES TO HELP MYSELF, follow whatever diet it takes, take whatever vitamins I might need, go swimming and or to the Gym regularly even when it exhausts me etc. But on this occasion, though I was eating a bit more fat and a few more calories due to breast-feeding, I think it was largely stress, exhaustion and the post-natal drop in hormones, that were responsible for my ms worsening. After having a baby women are prone to relapse and it was annoying to be so conventional and follow this trend, but with the way I pushed and pushed myself beyond my physical and emotional limits, not altogether surprising. I will never know what triggered my ms to worsen, do we ever know for sure!, but I realised that I needed to start putting myself first, and Marcus second at that time, because he was thriving and doing just fine, whereas I was not. Marcus needed care but he didn’t mind who gave it to him as long as his needs were met, and my sacrificing myself wasn’t helpful as he can only have one Mum and he needs me to be as strong and able as possible for him!<br />
 <br />
<img alt="fascinating.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/fascinating.jpg" width="450" height="338" /><br />
Marcus lifting his head to look at his pictures- strong little man!</p>

<p>So when he was 2 months old I stopped breast-feeding him, well he stopped taking both breast and bottle anyway, he was far to hungry and impatient to be bothered to breast feed by then anyway, so that decided that one. As a result Steve took over the nights and I started to get decent sleep and rest at long last! I was just so run down and I had a UTI as well so I needed it. Honestly I swear I could have slept forever at times, but I needed it because suddenly it had all caught up with me.</p>

<p><img alt="marcuscarseat_rudolf.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcuscarseat_rudolf.jpg" width="450" height="338" /></p>

<p> <br />
What really scared me was the way my legs kept straightening out in spasm making the simplest of movements a big struggle. It made me realise just how well I had done over the last 7 years, fighting my way back from needing care just to get out of bed in the morning, caring for myself, becoming self-employed and living relatively independently (through use of wheelchair, walker, stairlift and mobility scooter etc.)  I hadn’t realise how remarkably far I had come in reclaiming my life until this reminder. </p>

<p><img alt="marcus_indian.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus_indian.jpg" width="400" height="440" /><br />
 <br />
One day in January I hit a real low, after an argument with Steve about baby milk and phone calls (or something equally stupid, but I was negative and he went off on one!) I went to the Gym and was devastates to find that I could take not even one step on the treadmill. I was in tears and a hormonal wreck at that time, having stopped breast-feeding and it was a very hard time indeed. Through the MSRC message board I was reassured that life would go on and that a lot of it was hormones, which it was, I realise that now. </p>

<p><img alt="marcussylvie_bumbo.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcussylvie_bumbo.jpg" width="338" height="450" /><br />
 <br />
Since that time I have had good nights sleep every night- STEVE IS MY HERO!- and I saw my nutrition consultant, Brian Hampton, once again, and refocused on the anti-candida diet and taking a lot more vitamins. I felt as though Marcus had taken all the good stuff out of me!!! I took Wormwood for candida and am now taking olive leaf extract for candida and detox. Whether this approach had helped or not I do not know for sure, but it has definitely helped me, because I believe in it. I think the big thing though really has been getting good sleep and rest. When living with a chronic illness, you can’t push and push yourself constantly, because if you do at some point it catches up with you! </p>

<p><img alt="marcus_turtle.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus_turtle.jpg" width="338" height="450"><br />
 <br />
Anyway, the good news is that since then I have gradually improved in my legs and life has become relatively good again in that I am not shattered and can manage ok. I find it tiring to do swimming or go to the Gym, but I do it anyway, because I think it is very important. On the days that I don’t go swimming or to the Gym, I do Yoga and then take a small walk out with my walker, either to the 1st or 2nd lamppost, depending on whether it is a good or bad day (I’ve not yet made it to the 3rd lamppost as I used to!). Sometimes at night I can manage the stairs up to bed as well but not always! <br />
 <br />
I am so relieved that life is going on and I am so grateful to Steve for making it possible for me to be a Mum and to start to really enjoy it now! As a day job I can cope…it’s the 24/7 bit that is really tough (God, why didn’t you at least make babies so they give you the 7th day of rest?). </p>

<p><img alt="myboys_recline.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/myboys_recline.jpg" width="338" height="450" /><br />
 <br />
We are so lucky because, not only is Marcus healthy and totally gorgeous, a real cutie, he is also pretty good as babies go. Most of the time he is sat up looking around, taking everything in and smiling at everyone (he loves people and always returns a smile!). Sometimes he chuckles, especially when his Dad is playing with him. He does have his moments too, but don’t all babies.</p>

<p><img alt="steve_marcusbear.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/steve_marcusbear.jpg" width="338" height="450" /><br />
 <br />
He is now around 14 lbs, and starting to sleep through the night, though he still has a way to go here (as do I in recovering my mobility!). He usually had his last feed (dream-feed) around midnight and then he’ll sleep anything from 4 to 6 hours, have a bottle and then go back for another 4 hours. In the day he is awake a lot now, feeds every 3 or so hours and takes a nap every few hours for an hour or so.</p>

<p><img alt="myboys.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/myboys.jpg" width="450" height="338" /><br />
 <br />
It is an amazing journey and it is wondrous how quickly they develop. So far Marcus seems (and looks) just like his Dad in that he is sociable, likes to be the centre of attention, finds like highly humourous and had a feisty little temper on him when he is hungry! He is a real hit with the ladies and gets lots of attention wherever he goes.<br />
 <br />
It is especially funny when Steve had him in his baby carrier hung around his neck with his leather Budweiser jacket all zipped up! The looks, squeals and cries of ‘oh, he’s gorgeous’ we get when talking/scooting around down are lovely (to which Steve replies with a smirk, ‘I know I am but thank you’). </p>

<p><img alt="afraid.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/afraid.jpg" width="338" height="450" /></p>

<p>We have taken far too many photos and far too much home video of the boy, but isn’t that what smitten parents do! At times it is too much and hard to juggle everything, but we love our little boy so much, we are happy that he decided to come and join us on planet earth- our tiny little visitor!</p>

<p><img alt="morning_dad.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/morning_dad.jpg" width="450" height="338" /><br />
 <br />
Going to the Florida Keys with the heat, MS, and a small baby will be challenging to say the least, but I believe that the sunshine does me so much good in the longer-term (vitamin D appears to be protective against ms, maybe I owe my life to going to the Keys annually through meeting my Steve?) and the daily swimming, though exhausting, really does help as well!<br />
 <br />
Anyway, we are so sick of this terrible cold and long Winter now. Whenever I feel as though I am really getting somewhere in reclaiming my legs I seem to get a cold, bug or infection that knocks me back again. But I really am lucky to have stabilised at all, never mind a Mum as well, so I will continue my journey on, doing my best, triumphing against adversity and counting my blessings of which there are so many! Though it is a very difficult life, as I have said before, it is very rich (particularly in the people I meet and correspond with through the internet!) and I am just so grateful for the simple things in life, a warm bed, good food, creature comforts, family and friends. Having long holidays in the sunshine, travelling the world (Steve is planning another trip to S. America for the Autumn, whilst Marcus is babysat in the Florida Keys!) and being a Mum are huge bonuses!</p>

<p><img alt="myboys2.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/myboys2.jpg" width="338" height="450" /></p>

<p> <br />
I think if you have your health, food in your belly and a warm bed to sleep in at night YOU REALLY DO HAVE THE WORLD!</p>

<p><img alt="marcus_crib.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus_crib.jpg" width="450" height="338" /><br />
 <br />
Love<br />
 <br />
Sylvie x<br />
</p>]]>

</content>
</entry>
<entry>
<title>Tiny baby Marcus arrives safe and well</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2005/11/tiny_baby_marcus_arrives_safe_and_well.html" />
<modified>2006-02-16T11:51:36Z</modified>
<issued>2005-11-01T13:33:29Z</issued>
<id>tag:www.healthdiaries.com,2005:/ms/sylvie//70.3946</id>
<created>2005-11-01T13:33:29Z</created>
<summary type="text/plain">As some of you will already be aware I had a baby boy on Saturday (22nd October, 2005). Full Name: Marcus Andrew Stephen Wright Weight: 5lbs 9oz Arrived: 22nd October 2005 5:32pm 36 weeks pregnant to the day (30/10/05) Hi...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>As some of you will already be aware I had a baby boy on Saturday (22nd October, 2005).</p>

<p>Full Name: Marcus Andrew Stephen Wright<br />
Weight: 5lbs 9oz<br />
Arrived: 22nd October 2005 5:32pm<br />
36 weeks pregnant to the day</p>

<p><img alt="marcus1.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus1.jpg" width="338" height="450" /></p>

<p>(30/10/05)</p>

<p>Hi Friends,</p>

<p>Well I got out of hosp on Saturday, the day before yesterday, 7 days almost to the hour after I went in (in Sat 22nd 3pm- out Saturday 29th 3 pm).</p>

<p>The week has been one big blurr in a way as you can imagine with the surgery, adjustments and lack of sleep. Marcus is an angel during the day, but he's up most of the nights, think he's catching up being so tiny and with such a tiny little stomach.</p>

<p><img alt="marcus2.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus2.jpg" width="338" height="450" /></p>

<p>I ended up having an emergency caesarean (planned for Thursday the 27th) after my waters broke on Saturday afternoon on the 22nd (I suspect they had been leaking on and off before this at times, especially on a couple of previous nights, but with my appalling bladder function in the last weeks of pregnancy it is hard to say!). In a way it was better just to have it all happen rather that to know it was going to.<br />
 <br />
In the morning we went to town and to the markets as usual for fruit and veg (Steve's gotta have his pork pie or 'cholesterol bomb' as he calls it!) and the funny thing is that I decided to wear my Poncho from Lima, which makes me look (and feel) like a Peruvian Princess, so I took a photo of myself in it outside the cathedral by a Santa in it, my last photo whilst pregnant as it turns out!</p>

<p><img alt="sylvieperuprincess.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylvieperuprincess.jpg" width="338" height="450" /></p>

<p>At noon I was happily swimming in the swimming pool and home and preparing some yummy garlic chips, made with olive oil, by 2 pm, only I didn't get further than boiling the potatoes (which would then be seasoned and grilled), before things started to worry me. I went to the loo, but then I kept leaking fluid on and on intermittently after and it didn't feel like it was coming from my bladder. It also had a Mummy smell about it and seemed a little bit blood-stained so I called the hospital trying my best to stay calm! (I was shaking a bit!). They said to come in for a check, but no real rush. So I finished packing my hospital bag and off we went!<br />
 <br />
At the hospital I was asked to lay on a bed while they did a trace, which was described as 'gorgeous' (so baby was doing well!). I started getting what I thought was intermittent wind-pain, at which point Steve started taking the piss out of me, whilst videoing, saying 'she's got wind...it couldn't possible be CONTRACTIONS'. I was also reassuring him that it was no doubt all a false alarm, to which he said to the camera, 'She says it's a false alarm...it couldn't possibly be LABOUR  could it?'...knowing full well that this was highly likely due to my flushed face, breathing and reeling about on the bed in discomfort. At this stage I knew my waters had broken as I could feel liquid coming out but I wasn't in pain, it was just discomfort...which I then decided must be these Braxton Hicks contractions they talk about! <br />
 <br />
I took the nappy I was wearing off after about 40 mins and it was clear that my waters had broken without the need for any Doctor to check, so suddenly everything started happening! The trace also confirmed that I was actually experiencing contractions so a doctor appeared in great haste to check me over. An internal examinations confirmed that I was actually already 5 cm dilated...and the doctor could feel the feet in the birth canal already as my baby was still breach (as we knew!). I could not believe this as I wasn't in any real pain at all. How could this be?<br />
 <br />
Suddenly all hell broke loose and I was attacked from all sides with Doctors, Anaesthetists, nurses and goodness knows who else! I also needed the loo but there was no time. I was assured that incontinence was not a problem, but I was very uncomfortable about losing total control of everything with an emergency caesarean looming! They shoved a catheter in and I was transferred to a trolley and wheeled into the room where the surgery was to take place, and transferred onto the table. I had no choice but to let it all happen! Steve was given a green gown, and mask, which made him look like George Clooney (and very sexy with it!).<br />
 <br />
I recall a nice chap called Jim, making jokes, reassuring me throughout the whole operation and trying to put me at ease, but it was all pretty traumatic. They gave me an anaesthetic injection in my back and then the spinal injection went in and I went numb from my chest down! They put a green screen up and Steve came in...boy was it good to see him!!!<br />
 <br />
The actual operation was one of the most surreal experiences of my life. There was no pain but lots of tugging down below. I felt a lot of pressure on my heart, I felt nauseous and my arms became really shaky. I was assured that this was all a normal reaction to the anaesthetic but it was still all very scary!<br />
 <br />
Next minute we got a glimpse of a tiny babies head covered in blood and white stuff over the screen and it was confirmed to be a baby boy, as Steve had suspected all along. He was then taken to the next room to be checked and woken up etc. Pretty soon we heard a couple of screams, and Dad was called in to see his little boy! <br />
 <br />
The video Steve took of these first moments are pretty magical. Steve says the way Marcus first opened his eyes, and looked at him, was exactly the way his Dad had looked at him just before he died...so the connection was immediate! He said to his baby 'Welcome Marcus to planet earth...it's PARTY TIME'. They cleaned Marcus up, with rubber gloves on, rubbing him with towels to further wake him, and Steve continued to turn the video of Marcus's birth into a comedy! (it is hilarious!). He asked if he was well endowed and was told he was about average, to which Steve said 'Oh' and they said maybe we should have said 'Yes'!!! It was also remarked when Steve called him Marcus...what happened to Sir Bishop Desmond Tutu then!!!? (the name we gave my bump throughout the pregnancy!)<br />
 <br />
Marcus was then brought in to see him and although I thought he was lovely and far more beautiful looking right away after the birth that I had ever expected, it was all still very overwhelming and unreal. I still being stitched up and feeling pretty ill. The main thing was that he was well, and he didn't need to go the the special care baby unit. His tiny feet were rather bruised from starting to come so quickley into the birth canal, and he kept his legs bunched up rather a lot in a bowl as breech babies often do, having less room in the womb that way up, but over the next week he healed and gradually stretched out (and boy what a kick when he's hungry!!!). </p>

<p>I was then taken to the place where people recover for the night. Marcus was put on me as much as possible. They call this skin to skin contact and they are very keen on this as it helps calm the babies heart-rate, and temperature and helps with bonding. They also tried to get him to latch onto me to feed and get some Colostrum straight away, but this was tricky for both of us. He did manage to and did get a bit though.<br />
 <br />
My was experiencing intermittent leg spasms (as I generally do) but it was really weird, because I couldn't feel them, so it was as though it was someone else's legs that were jumping about. Steve stayed till around 9 pm and then they went home to spread the news and celebrate with a take-out Chinese meal for two, which was enormous and which he ate for the rest of the week! <br />
 <br />
That whole night was a blur with no chance of sleep as it was so noisy all night. Gradually I began to feel and be able to move my legs again. At one point I experienced excruciating pain as the drugs wore off and my bladder went into spasm due to the catheter in there (now that was pain!). My bladder desperately tried to push the catheter out and I was given more morphine to alleviate this. I'm pretty sure my bladder leaked and the bed was then changed (I told them it was going to) but none of that was a big deal at all. I was also given a bed-bath and at some point in the early hours, I had some toast (I'm not eaten since about 10am Saturday morning!).</p>

<p><img alt="marcusallwrappedup.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusallwrappedup.jpg" width="338" height="450" /><br />
 <br />
And so began a week of very little sleep and trying to adjust to having a baby, getting my colostrum to come, learning how to get him to latch on (it was a struggle at times), learning simply how to handle a tiny baby, nappy changing and winding (the staff were brilliant and helped me out all the time day and night at the touch of a buzzer, but still there were one hell of a lot of rules and too much pressure on me!). At times I think the only thing that kept me sane was the positive affirmations tape I had made and played to myself throughout the days and nights on my personal stereo through  the headphones (no one knew and it did help!). </p>

<p><img alt="marcuspeaceful.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcuspeaceful.jpg" width="338" height="254" /></p>

<p>It was very tough, especially when you are trying to recover from surgery. I found it hard to sleep in the short periods at night when Marcus slept. It hit me just how much care I needed myself because there are times when I should be asleep but would lie awake with leg spasms (the room in the hospital was hot which did not help at all and I had to wear the operation stockings as well which made me even hotter!) or be woken with my bladder! I also need to eat well and eat proper food (Steve was brilliant bringing me in huge tuna or chicken salads).</p>

<p><img alt="marcus3.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcus3.jpg" width="338" height="450" /><br />
 <br />
Day 4 and day 5 were overwhelming with the sheer fatigue, pressure and the drop in hormone levels causing weepiness and the 'baby blues'. I felt as though I had taken on the world and felt really stupid for asking that of myself (though happy to have a healthy baby of course- the sheer extreme mixes of emotion totally do you head in!). I felt as though I had swapped a relatively nice life for one in which I was to suffer day and night and at times I still do!).</p>

<p><img alt="marcusscreams.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusscreams.jpg" width="338" height="450" /></p>

<p>There was no day or night anymore just one long day, which was tough when you were in a room and caring for a new born 24/7. But I was lucky to have the help on tap and also to be in a large room on my own which was fully adapted with disabled facilities such as a bath lift! </p>

<p><img alt="marcusandmickey.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcusandmickey.jpg" width="338" height="254" /></p>

<p>Sometimes I felt very on my own, as Steve was organising things at home, trying to take business deliveries which often did not turn up, and trying to cope with bad migraines which often affect him at this time of year. <br />
 <br />
He usually unwinds after a big year of stressful scooter selling and repairing with the business when we fly out to the Florida Keys though at this time of year for a couple of months and rest, sunshine and swimming therapy in the Florida Keys though, and we still hope to go in early December this autumn for 3 weeks but that all remains to be seen! Some days I think this is realistic and others I think there is no way I will cope!</p>

<p>Also having me undergo major surgery and the worry about his tiny new baby, well it is not to be underestimated (causing sleeplessness and no doubt the migraines). Steve was at the hospital when he could be and when he was there is was brilliant with Marcus and learnt so much so fast, absorbing information like a sponge. I just needed him there more at times, for emotional support above all else, as it was so much to deal with in that room without him there!</p>

<p><img alt="dadfeedsmarcus.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/dadfeedsmarcus.jpg" width="338" height="450" /></p>

<p>Steve feeds Marcus with a pipette<br />
 <br />
On day 5 I did see a clinical psychologist, because by the morning I really didn't want my baby, and after a long chat he said that the main problem was that I was simply outside of my comfort zones in the way I manage my ms, and that I was hormonal and exhausted, so it was all pretty normal stuff to be feeling in a way. He saw no sign of clinical depression so no need for any anti-depressants. I agreed totally and was very impressed with the way he summarised everything and it was reassuring to know that I wasn't actually going mad (it was good therapy and helpful to know it was all understandable and made sense!) <br />
 <br />
It is just all the fears and unknowns for the future, how Steve and I would manage. My greatest fear of all was that I'd become so neurotic that Steve would leave me, but if anyone knows Steve that scenario is probably unlikely, and maybe I am totally underestimating my own strength and abilities there?</p>

<p><img alt="sylviepouts.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylviepouts.jpg" width="338" height="254" /></p>

<p>Steve tells me I have to stay in the hospital for another 6 weeks!!!<br />
 <br />
I found a plan was naturally coming together anyway. Offers of help from my best-friend's Mum, I could always pay my old Home-help to come in and prepare food for me or do whatever, social services were contacted to come to assess our situation, my parents were also on the scene. Gradually I realised that there would be a way to ensure life would go on and maintain my health as well as I generally do (with ms there are no guarantees anyway!). On day 6 I let the staff take Marcus off from 4 am and I got a good few hours kip before they returned him and felt hugely better for it! <br />
 <br />
I also saw my Neurologist on day 6, and asked to try taking Gavopentin for the leg spasms. I'm not yet allowed to take my bladder calming medicine because I am breast-feeding but the Gapapentin I am allowed and I felt it was worth trying to see if this drug could alleviate this annoying symptom. I also had to start self-catheterising because my bladder is retaining over 100 ml (maximum 200 ml). This is often a problem with ms and also after pregnancy, but I am also so glad to have got a relatively functional bladder back. I'm also taking Iron tablets for anaemia (due to blood loss with the mother of all periods!), and this is causing my a bit of constipation, just when  was enjoying the relief from this symptom after having had my baby. So it's all still swings and roundabouts!</p>

<p><img alt="stevetinyfingers.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/stevetinyfingers.jpg" width="338" height="450" /></p>

<p>Overall the good news is that physically I am actually a bit better that before I went in...on my legs and wrt ms (maybe the hormone thing? maybe some kind of nature survival thing kicking in? maybe it will last? maybe it won't...who knows?).  My Neurologist was pleased with me and she also said that I seemed a bit better than when I saw her the week before (less shaky and anxious I guess)! I have made sure that I got back on my feet and walked daily up and down the hospital corridor every day since day 3 as well, and in spite of the surgery I am doing remarkably well. I have got my figure back almost immediately. It was all baby, fluid and placenta in there! I'm having to ensure I eat and drink enough too so as to ensure my milk keeps coming and that I don't lose weight. (not always easy to find the energy to prepare good food and remember to drink but it is crucial so that is where I need the care myself!)</p>

<p>I've not needed anti-biotics for Urinary Tract Infections either, which considering how prone I am to them, and considering what my bladder went through having a permanent in-dwelling catheter stuck in me causing pain and excruciating muscle spasms, I think this is pretty damn remarkable! I  resisted the pressure of taking anti-biotics to treat an Uti, towards the end of my pregnancy, and cleared it naturally, because I assumed that I may need them later after surgery when I weaker and run-down! But as with the whole ms deal, there is no predicting anything it seems, suffice to say that I am proud not to have succumbed to the pressure to take them straight away, and grateful to have needed them later!</p>

<p>It is all so weird. I get physially f***** but you just get on with it- most of the time!</p>

<p>Steve has bonded with Marcus so well, taking to him like a duck to water...just amazing! He took over for the first night on Saturday night the day I got back home (after a feed that went on for something like 3 hours to get Marcus to settle for a wee bit, so I got to bed at about 12.30 am and got about 7 hours - heaven- that night on and off- kept checking on my baby though- you can't just switch off!) and he handled this fantastically...using back-up new born baby formula feeds at night. He says he had a fab time at 3 am watching Takeshi's castle and giving Marcus a bottle! Then at around 8 am Steve went off to the Gym and I took over with Marcus. </p>

<p>People say no one can prepare you for the lifestyle change involved in becoming a parent, but in my case, being very AWARE AS A PERSON, I was prepared in a way for how hard it would be...and hence my trepidation and anxiety.</p>

<p>Also what people don't tell you is that although you may never get 8 hours uninterrupted sleep again, you don't need it as much (though it would be heaven!), because when you sleep you really do sleep!!! It is all a lot more efficient (or maybe I speaking too soon?)/</p>

<p>Our little boy is healthy and beautiful. I wasn't expecting him to come out so beautiful looking (but guess the caesarean helped there!). The best thing is that he really is thriving and doing everything a baby should!!!</p>

<p>For the first 24 hours he was too sleepy and tiny to get the hang of breast-feeding and they had to wake him every four hours to try to feed on the breast (and get my milk to come) and then give him fomula with a pipette but now he feeds regularly during the day and all the time at night- or at least it feels like it!.<br />
 <br />
We are just taking a day at a time right now, but so far so good. Being premature it may take him a little while to establish a routine. Also the reason he feeds like mad at night is apparently because of nature. He knows this (~4 am) is the best time to stimulate my hormone levels to boost milk production...in the first few weeks. And although exhausting the breast feeding (and sustained hormone levels are actually protecting me from ms, so in a way he is HELPING ME TOO and making persisting with the whole breast-feeding lark worthwhile- it's also worthwhile because it is damn convenient during the day as well!). So this night, Sunday night I fed him till around 11 pm and got to bed, Steve finished that feed up with a bottle, I slept till 3.30 am and then took over feeding and caring so as to do the hormone stimulating feed!<br />
 <br />
Daddy sleeps downstairs and I sleep upstairs and we are doing half nights each in shifts and so far this seems to be working (if I need more Steve can do more!)<br />
 <br />
He validates, praises and enjoys him all the time, telling him how good he is and how little trouble he is! He always sensed he'd have a baby at around 50 (he's 49 now) and that it would be a boy (Could have told me like!!!). He calls him our 'tiny little visitor who just needs a little bit of help, and so far, he's been treating me like a queen too, with lovely meals, love and care, even spoon feeding me when I'm tied up feeding Marcus- ahhhhhhhhh! I just wish Steve could be here all the time, but of course with running the business too. In theory he was supposed to be taking time off but in practise it is not so simple! </p>

<p><img alt="marcustinyfingers.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcustinyfingers.jpg" width="338" height="254" /><br />
 <br />
I'm getting the hang of using the internet too whilst breast-feeding, and typing with one finger and holding and supporting him with the other. It makes night feeds pass quicker to believe me. I'm a working Mum and having a life outside baby (business, friends, emails, message board!) is wonderful! </p>

<p>Switching on and off, sleeping between the feeds, I do find hard but I am trying to chill and rest instead rather than beat myself up about this! I am also trying to do the same during the day, but I do wish I could just adapt and sleep more during the day, just like Marcus does. I don't know why I can't do this, but I guess it is early days and there's one hell of a lot going on right now!</p>

<p><img alt="stevetinyfingers.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/marcustinylegs.jpg" width="338" height="254" /><br />
 <br />
At present he is being fed on demand, but his Daddy is clearly still the boss and this phase won't last forever! Around 12 day after birth babies tend to go through a grown spurt and jus feed 24/7 so I am preparing myself for that. With Marcus it may be a little later as he was a bit premature (bang on 36 weeks but a good weight at 5 lbs 7 Oz for that gestation). When he left the hospital on Saturday he weighed 5 lbs 5 Oz, but it is usual for babies to lose weight in the first week as they adjust to the lack of 'womb' room-service. Yesterday (Monday) he weighed 5lbs 5.5 Oz so he's gained a bit in two days!<br />
 <br />
Yesterday though Steve had to go out for the Argos delivery of baby things and to sort out business at his flat and I ended up doing way too much, handling emails, feeding Marcus, seeing midwifes, taking scooter calls. I ended up on the bed unable to move so I called my brother, Matthew (aka Sir Stan Ghost), who was up in Sheffield for the weekend and he came down to care for me, prepare a lovely chicken salad etc. It really hit me how I neeed back-up to care for me, if Steve is out or dealing with business calls if I am to care for Marcus. When Steve got back I tried to explain this to him but he took it all as a critisism and went mad with me. He thinks he can do three jobs, care for Marcus, care for me, and run the business from my house now! I don't think that is sensible of realistic. He doesn't realise that he isn't superman and that the stress comes out and tests his patience and changes the way he is with me (stress and lack of sleep are not a good combination and make you very short-tempered) . I agree that he is the best man to run the business because no one can repair and sell scooters as well as he can, but if he's making more money that way then surely it makes sense to get me the back up I need because with his running the business (being the success he is) we can afford it! <br />
 <br />
Anyway I ended up really upset and neurotic and totally self-destructed again, because of this agrument and the fact that I couldn't simply relax and sleep around when my baby sleeps. When I get overtired I am impossible. So I ended up dragging Steve down and doing his head in- my WORST FEAR- simply because. I ended up wishing I'd not had my baby again. I must admit I was impossible! It all just got too much for me again!<br />
 <br />
What I learnt from yesterday is that I must learn to adapt and relax totally when Marcus sleeps, and also if I need extra back-up a few mornings a week then I must arrange it. So I think I may have to take charge there and employ my old home-help to makes me salads, huge soups and if necessary feed Marcus if I need to sleep and Steve is taking calls or nipping out!  <br />
 <br />
The whole running the business from my house now I find a huge adjustment, but I'll have to learn to switch off and let Steve get on with it, turn the phone off etc., be more normal and flexible. Stressing out and winding myselef up only makes me 1000 X worse, and my legs are a load stiffer today already. Steve is just so fit and strong  had such high standards that it is impossible to keep up with him. I have limits and he is making me feel as though they are my faunlt right now (but after my performance yesterday he does have a point. <br />
 <br />
It scares me that I am the main problem, it's me, but I need to give myself a chance to adjust to these huge lifestyle changes and work out what is realistic. Last night I though Steve was going to end up leaving me I wound him up so much just trying to work out a plan for how things were going to work, and also beating myself up. We did shifts again last night though and I did sleep better. It is all just such hard-work, though not to Steve! The best thing Steve said yesterday was Marcus comes first now, and you come second, and I am so happy that this is the way he feels, because that is the way it should be! Whatever happens Marcus will be loved and cared for and that is the main thing.<br />
 <br />
So onwards we go with this journey in life. Everyone reassures me that this is the toughest time and the totally disrupted nights won't last forever, and that I will adjust and cope, so I'm just taking things a day at a time and believing them!</p>

<p><img alt="sylviefeedsmarcus2.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylviefeedsmarcus2.jpg" width="338" height="450" /></p>

<p>Thanks for all you support, greeting, love and presents sent for Marcus. My brother printed them off and gave them to me in hospital and they really helped...though I never intended to make so many of you cry tears of joy!!!</p>

<p>All the best</p>

<p>Hugs & Smiles</p>

<p>Sylvie x</p>]]>

</content>
</entry>
<entry>
<title>My well kept secret</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2005/09/my_well_kept_secret.html" />
<modified>2007-05-15T22:07:31Z</modified>
<issued>2005-09-14T17:00:22Z</issued>
<id>tag:www.healthdiaries.com,2005:/ms/sylvie//70.3664</id>
<created>2005-09-14T17:00:22Z</created>
<summary type="text/plain">Well, it&apos;s about time I confessed as to what has really been going on with me this year. I&apos;ve been keeping a secret ever since just before I did my hang glide. A couple of weeks before I went flying,...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>Well, it's about time I confessed as to what has really been going on with me this year. I've been keeping a secret ever since just before I did my hang glide. A couple of weeks before I went flying, the penny suddenly dropped, and I realised that I was pregnant!<br />
 <br />
As I have lived for some 16 years thinking that I am unable to have children, this came as a mighty shock.  Getting pregnant wasn't really the problem, but bringing a baby to term could be, as I have a gyny condition which means that my womb is half the usual size (I only have one uterine horn). They call this a bicornate uterus, which essentially means that the womb instead of forming into one whole one, well, it hasn't fused correctly so there are two half sized ones!<br />
 <br />
In my case the left hand half womb didn't fuse properly with the vagina and as a result my periods collected up on this side when I was a young girl as the blood could not get out, hence causing extreme pain (contractions, I can only assume a bit like giving birth, only that is probably worse!). </p>

<p><img alt="gynyoriginalwombsetup.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/gynyoriginalwombsetup.jpg" width="300" height="250" /></p>

<p>The doctors operated and tried to correct this problem, but sadly the problem reoccurred as my body healed up the outlet they made. It was a pretty traumatic ordeal to go through as a young girl. </p>

<p><img alt="gynyrepair.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/gynyrepair.jpg" width="300" height="148" /></p>

<p>In the end they opened me up and took away the left womb and fallopian tube (as this was knackered anyway, from blood trying to surge back through it and escape out into my stomach!).</p>

<p><img alt="gynyhalfwomb.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/gynyhalfwomb.jpg" width="300" height="263" /></p>

<p> <br />
So although in theory getting pregnant shouldn't have been a problem, when you think that I have one fallopian tube, have had major sugary, I am irregular with my periods, I have been up against it with ms now for along time, and I was trying not to get pregnant (though obviously not well enough!), it is quite a remarkable thing to have happened! (but as Steve says that's nature for you, that is why there are 5 billion of us on the planet, and we should never under-estimate nature!)<br />
 <br />
I was relieved, in a way, to know what was wrong with me, because I had been feeling very weird, very tired, hormonal (like permanent PMS- poor Steve), and not myself at all. I was wondering if I was going mad if I'm honest! But the thought of pregnancy, well I have no greater fear in life, nor is their any greater journey into the unknown for anyone never mind myself with my complications.</p>

<p>It's not just ms that complicates things with me, the difficulties I live with, the bladder problems, the fatigue, the leg spasms, the lack of mobility...my limits, but also this gynaecological condition, all the risks involved, no one knowing what will happen or whether that baby will make it and be ok. </p>

<p>And ms is a stress-related condition so did I really want to put myself through all that? Also, as a result of the trauma with the operations in my youth, and the psychological scarring, the way it affected my view of myself as a real woman. All this lead to my belief that I could never have children and was therefore not worthy of loving. And then the onset and aggressive nature of the ms, the remarkable way I have managed to stabilise the ms, and salvage my life, well the result of all this trauma is that it has left me with a baby phobia even if by some miracle I did end up with a little one! <br />
 <br />
It is as if I got ms to learn about self-respect and real, true UNCONDITIONAL LOVE, through meeting Steve. He got involved with me without conditions or expectations. At last I was free to be loved just the way I was, with the disability, health problems, risk of getting worse. The last thing I was expected to do what to produce children for him. </p>

<p>What I did do, however, was set him up in business on the internet selling his mobility scooters (that is how we met, he sells and repairs them for a living), only to see the business take off and bring him great success (and rightly deserved, now that is what I call pay-back for unconditional love!). </p>

<p>Oh yes, the fates have shone on us in the last 7 years we have been together. Yes, I have difficulties, and ms is very trying still, but I have stabilised the MS to a good degree, and have improved enough to lead an life of independence once again (though different, with mobility scooter, wheelchair, walker and stairlift etc). </p>

<p>I have good days and bad, but I now live in a lovely house which Steve and I bought together, and it even has a palm tree in the garden. I have all I could wish for on the doorstep, the shops, the healthy living centre (the swimming pool, the Gym), the supermarket, and even the tram to take me to town or wherever I want to go. I have been to the Florida Keys for 6 years running now, escaping the terrible Winters...to spend up to a couple of months in paradise in the sunshine and exercising and enjoying the pool. </p>

<p>I have been to Disney World twice, and Busch Gardens once. I have toured around Nevada, Utah and Arizona in a Campervan, for two weeks, visiting Las Vegas, the Grande Canyon, Petrified Forest, Shelley Canyon, Monument Valley, Delicate Arch, Goblin Valley, Capital Reef and Bryce Canyon. Yes, it was tough and a real challenging but yes I did it! </p>

<p>I have even toured South America for two weeks in November 2004, visiting Rio de Janeira, sitting on Copacabana beach, driving all the way up to Corcovada, to see the huge statue of Jesus up on the hill, then taking the cable car up onto Sugarloaf mountain, to see further fantastic views of Rio! </p>

<p>We then flew to Peru, visited the Capital Lima (smog city), Cusco with all the poverty and lack of oxygen, due to the altitude, made the huge train journey to Machu Picchu, where I was carried around all day by a strong little Peruvian gentleman called Frank. Then onto Iguassu, to experience the magnificence of the wondrous Iguassu Falls (it the debilitating humidity of the heat there, but oh the RELIEF from the spray of the Falls!). It is a difficult life still, but oh the blessings! I view myself as truly lucky. If this were it, then how could I complain?<br />
 <br />
And yet, somehow, though I often know not how, I seem to survive the trails and knock-backs with ms, somehow I seem to bounce back and life has gone on and on. It is tiring but I am so thankful that I am still here, alive and kicking! </p>

<p>Our latest plans were for another trip to South America, this time to visit Angel Falls, Easter Island and to take a cruise to the Galapagos Islands, another challenging trip, but to see such places, what a dream come true! But I kept telling Steve to hang on and await my late period, before he booked this trip, a period that never came (I had missed one but with my anti-candida diet, with it being so low in fat and sugar, well I thought nothing of it!).<br />
 <br />
The week before the day I was supposed to do the hang glide, I went to the doctors, and had a bit of a breakdown. "I've got ms, I don't know how I survive, I've got half a womb, I'm pretty sure I'm pregnant, I can't handle any of this, and I can't do a test just yet because the whole of Sheffield has just read in the paper about my plans to fly like a bird, and do this charity hang glide! at the weekend!". I explained to the doctor!</p>

<p>As "I know my body" I told him that, at the most I would be 4 weeks pregnant, so he agreed to let me wait to the weekend and get my hang glide over with before I had it confirmed. But he did ask me when my last period was and I could tell he was thinking that I could well be further on than I thought I was, and therefore it was vital to come back sooner rather than later, the very next week, if I didn't get my period before then!<br />
 <br />
The day of my hang glide came and the weather conditions were no good at all (I was gutted!), so instead I went to the supermarket to get a pregnancy test (of course they had run out so Steve had to get one whilst out and about later). I realised it was only fair to Steve to find out one way or the other! I didn't really need the test though, because I had been feeling sick and the day before had had a sudden and urgent craving for sausages, bacon, baked beans and chips, which is so unlike me, but my body needed to fat, and the demand could not be denied!!! </p>

<p>I did the test, left it on the bath, called the airfield in the vain hope of an evening hang glide, was told that the weather was no good, went back to the bath, picked up the kit knowing my life could be about to change forever, and looked at the result. There was a faint cross, so I went downstairs and told Steve I was "half pregnant", which quickly worked out meant that I was pregnant. Steve was a lot more matter of fact that me, well 'you're pregnant then' he said, put the test on the bookshelf and carried on watching TV.<br />
 <br />
I went back to the doctors later that week and we were given a referral to the Early Pregnancy Assessment Unit. I was spotting (breakthrough bleed) all that week too and felt really achy, so I wasn't even sure that I would remain pregnant for much longer anyway. I tried to protect Steve from getting to excited as I didn't want him to be disappointed, but he reassured me that he was fine either way, whatever happened!<br />
 <br />
We saw a nurse, notes were taken, and again the date of my last period was noted. I was still sure it was very early days, because I know my body! I felt awful because I was trying to manage my bladder so it was full for a scan, but with me, when you have GOTTA GO , you have GOTTA GO. I just kept thinking I can't even manage my bladder, never mind have a baby. I really did not want to be there at all. This could not be happening to me!<br />
 <br />
As it was early on in pregnancy it turned out that I needed my bladder empty for the scan as it was to be an internal one, and then I'm thinking, oh God, it won't empty on demand either, but it was OK (I worry too much, which only makes my bladder worse anyway!). </p>

<p>The lady doing the scan said, as it was early on, we may not be able to see anything yet, but the next minute she has turned the monitor around and there was a tiny foetus, in the shape of a tiny baby (about 1 cm in size), with a strong heart beat and everything! We were both amazed and shocked. I was about 8 and a half weeks pregnant already!<br />
 <br />
The lady gave us a print out of the baby and said not to look at it until we left the Unit, "as not all couples have such good news". Steve being Steve was thinking "what good news...I've just found out I'm not going on holiday" and I appreciated the irony! Good news is all relative in a place like that! We certainly had mixed emotions. It was an amazing thing to see, but also a very scary thing for both of us too.</p>

<p><img alt="ourbaby_smaller.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/ourbaby_smaller.jpg" width="400" height="320" /></p>

<p>Scan at 8.5 weeks</p>

<p>Steve was sure, from that moment on, that the baby was going to make it and started yelling "Mum, Mum" at me whenever he came in the door. For me that was way to soon but he just had an (irrational) gut feeling that it was meant to be. I wish I could have felt that confident.I just kept thinking we have a long way to go yet but I consoled myself that even if I did lose the baby, we would always have had that experience of seeing our tiny little one on that monitor. </p>

<p>I still didn't really believe that I was pregnant (not sure that I even do now!) and definitely didn't believe that I could bring this baby to term, but I did not feel it was for me to decide. Though idealistic, we both felt that we should give it a chance and leave it all to fate, my future health and well-being included!<br />
 <br />
10 days after my originally planned hand glide date, I was given the thumbs up to GO FLYING. It was still early days with the pregnancy (about 9 weeks) so although it was a bit naughty of me, I just kept it all a secret from the world and did it! Thankfully the morning sickness happened had decided to give me a break that particular day, and the FLIGHT WAS AMAZING! I was so relieved too to have got it over with before it was too late!<br />
 <br />
Since then I have taken the pregnancy day by day and from week to week. After the first trimester the morning sickness settled down and if anything I have been a bit better on my legs and with the MS (that is usual with ms). </p>

<p>I didn't tell my parents until I was almost 12 weeks, partly because I wanted to protect them in case I lost the baby, but mainly because I was just trying to get my head around it myself, and I was scared they would bring the realities of it home to me. I had already had one abortion (which nearly destroyed me) and could not bear to have another one- even if the price to pay was to be my life! <br />
 <br />
But when I did tell them I was surprised, because although my Dad was shocked at first (and has since come around, especially now he knows Steve and I have done Wills - just as a safety net), my Mum was supportive straight away. She immediately got the feeling that this was meant to be, which was a big relief to me. A lot has changed over the years and she sees all that I have done and achieved overcoming and living with ms, as training for this next chapter, and she has a great deal of faith in Steve. I clearly should not have underestimated her. My Dad is very proud of me too, and now that he has got over the unexpectedness of the news (my Mum knew that I was about to say something very big as only Mum's can know), he too, though protective is being very supportive!</p>

<p>The 12 week scan was pretty amazing, seeing the fully formed little baby (who waved at Steve, he swears it did!), as was the 20 week scans, seeing the tiny hand with tiny fingers and everything. </p>

<p><img alt="ourbaby2_smaller.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/ourbaby2_smaller.jpg" width="400" height="293" /></p>

<p>Scan at 11.5 weeks</p>

<p>After this scan, however, having been told all was well at this stage, it was quite tough to be told by the Doctor, who had only just read my gynaecological history, that no one could really predict how long my womb would hold the baby for and what the outcome would be. In fact the doctor was asking me what the consultant had said back when I was a young girl. That wasn't very reassuring at all. </p>

<p>From 20 weeks I was scanned more regularly, every 3 or so weeks, because 20 to 30 weeks were the most crucial time for me and the baby. If the baby had come earlier than 20 weeks, there was nothing they could have done, I would have miscarried and the baby would not have survived, so there was little point in more regular scans. From 20 to 30 weeks, though premature, babies can survive (well from 24 weeks onwards anyway and the further you get the better the chances and the less risk to the babies health of course!). From 30 weeks babies have a good chance of surviving and being healthy and from 32 weeks onwards, to quote the Doctors words although the baby still needs care "the baby is home and dry" (although they still need special care). <br />
 <br />
At 20 weeks though 32 weeks seemed a long way off! In fact the whole pregnancy to date has gone very slowly for me. At 20 weeks we had the scan and then went off for a weeks holiday in Berlin, which we thoroughly enjoyed!<br />
 <br />
Since then I have been also given two internal cervix scans, one at 21 weeks and another at 24 weeks, and this time the consultant was very encouraging. He checked the length of the cervix, as any shortening can indicate a weakness in women with my condition but thankfully mine was all normal length with both scans (and therefore normal strength we can assume) so after that he did not need to see me again! In fact the last thing he said to me, is don't worry too much about there being enough room for the baby to grow, and though the baby may come early don't assume it will be premature!</p>

<p><img alt="ourbaby4_smaller.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/ourbaby4_smaller.jpg" width="400" height="280" /></p>

<p>Scan at 23.5 weeks<br />
 <br />
My latest scan was last week, and 29 and a half weeks and all appeared to be well. The babies head was about 7 cms with a circumference of 27 cms, femur (thigh) bone length is nearly 6cms and an estimated weight of about 3lbs!<br />
 <br />
I didn't really feel the baby move until I was about 25 weeks pregnant (I kept joking I must be an insensitive Mum) but now he flutters away in my tummy a good amount which is reassuring! Thankfully he doesn't kick me too violently yet, though he does seem to think my bladder is a great football! We have not confirmed the sex, but we have a strong feeling the baby is a boy! </p>

<p>My bladder has gone from bad to worse which I expected (I had to come off the medication to calm my overactive bladder down as soon as I realised I was pregnant and now there is a baby sat on it!), but thankfully, it is still manageable (just!). Since this last scan last week, which revealed that the baby is still breach, I have really realised that I do have 3lbs or so of baby in my stomach, and it is a scary realisation and a daunting one, especially when I also cannot know how long this baby will stay in my tummy for. I can feel the bulk of the head, and sometimes it has been right up against my ribs on the right had side (my womb is on the right and as a result so is the bulk of the baby!) and has caused me some discomfort. But thankfully the baby does move around so it's not been in that position all the time, and it is OK I think! </p>

<p>I was thinking, Christ, if it's causing problems now, what will happen later when it gets bigger and bigger, and part of me worries about that, part of me is fatalistic, and part of me realises that this may be pretty normal! I try not to worry but there are just so many unknowns and it is very daunting! </p>

<p>Also the realisation now that the chances are good that I am having a baby that is really hitting me and triggering a lot of anxiety about the birth or c-section, and how on earth we will cope as parents to a newborn baby- never mind worry about him being healthy and preferably well-behaved (babies can vary so much and the horror stories about babies crying constantly 24 hours a day do not help!).<br />
 <br />
I have been experiencing a lot of leg spasms of late, and my right arm twitches sometimes too. It's an overall kind of restlessness and as you can imagine, it can prevent me sleeping, and then fight or flight sets in, and before I know it I am in a real state of worry as to how on earth I will cope with my upcoming future. I just feel so fragile and vulnerable. </p>

<p>My Chi machine and massaging the tight band of muscles in my spine do help alleviate the spasms but what I really want is cannabis or some medication, which of course I can't have! The more anxious I am and the more I get stressed about everything, the worse it all becomes of course, so I am trying to avoid that whole vicious cycle. </p>

<p>I can't avoid the reality, however, that I do have problems, limitations and all this is really happening to me and it is going to be tough beyond words. This will be the biggest test of all to date. I don't know if I can remain stable with ms, and that is a very frightening prospect. <br />
 <br />
I have managed by the grace of God to salvage my life from the claws of ms, but have ended up with a life which I live by many rules, namely a good amount of rest and self-care, a healthy diet, the avoidance or management of stress, drinking plenty of fluids daily so as the avoid UTI's (Urinary Tract Infections), and therefore staying close to a toilet and managing my bladder urgency! I live on the whole within these comfort zones and manage pretty well. Break these rules and who knows what will happen. </p>

<p>I do spend a lot of time feeling pretty ill and fatigued anyway, even with good amounts of sleep, that is just a reality that many people with ms live with.  I feel like a different, and very anxious and dysfunctional person at times. I can feel so fragmented (and it's usually a bug or UTI that triggers it!). It's not the true me at all and it is very unsettling. At these times it is easy to let the anxiety take over, the panic, to feel bad about myself, to get stressed out at the slightest thing, and it isn't any fun at all. You just have to ride the storm with faith that THIS TOO SHALL PASS!</p>

<p>Coping with a baby at such times, is a mind-blowing prospect to be honest, but I do know of single parents with ms who have to get on a do it all, no matter how they feel, and I have nothing but sheer respect for them- families often have to pull together too. I have a good man as a partner and a supportive family so once again I count my blessings! <br />
 <br />
Also babies disrupts all these routines which (I believe) give me the stability and functionality that I do have. Remove the routines, the rules, and ms may well progress! The prospect of getting worse, or bugs or UTI's, of fatigue, bladder problems and feeling like crap most of the time is not one I look forward to. </p>

<p>I will have to work out a way to make this work so that I remain well and functional enough to be a good Mum and partner to Steve. I have realised that I do have health limitations and beating myself up about them is not going to help. They are not my fault! </p>

<p>I don't know why I am still here, or why this baby is happening, but it is! Dealing with my actual baby phobia is another matter as well. Babies do terrify me as I know so little about them and the disruption that a baby can cause, well, to me it is life threatening. I am just hoping that I will bond with my baby and that there may be a lot of pluses to this experience that I am not able to expect or imagine (because of my past). </p>

<p>Right now, of course I care about my baby and want it to be ok, healthy and happy, but in a way it still feels very foreign to me. It is still all very surreal and unreal!<br />
 <br />
We have started going to parentcraft classes, and have now attended two of the three sessions. The first covered the 3 stages of labour and the second breast and bottle feeding (expressing and sterilising etc.) which have made it all seem a bit more real. </p>

<p>But part of me wonders what I am doing at such a class. After all my bump is so neat, I'm not big at all compared to all the other women there, so once again, I wonder if this is real (I'm very good an denial!)? </p>

<p>I think it is partly because I'm so slim anyway, and also because of my healthy diet (nutritionally this baby must be the best fed in Sheffield, at least I seem to have done that right), because I don't use pregnancy as an excuse to eat exactly what I like! They may call them cravings but I think half the time this is a excuse, my cravings settled down around 12 weeks when the morning sickness subsided! </p>

<p>My recent cravings, have, I believe been more a yearning for comfort foods than anything else! I think this is probably a common feeling with any expectant Mum as the birth draws closer (and in my case could be at anytime!). Anyway, Steve just tells me not to complain that I am the most beautiful woman at the class! </p>

<p>He is funny! That reminds me, at the first class we went into the wrong room, and ended up in the class for twins and triplets, only Steve thought they said it was the room for strippers which everyone chuckled about. He then understood what the class was for and commented "Oh, so you have to have tow or three to come in here them, that means, then he put hands between legs and shuffled out of the room with his head down...saying we've only got one, that means we're not good enough! I'll try harder next time, making everyone laugh again. </p>

<p>Also at our first scan, in what Steve dubbed the "room of doom", as everyone was so quiet and solemn in there, there was a program on the TV blaring away, and it was Trisha. She was talking to a naked man, and she asked him why he was naked? He replied there was nothing sexual about it, he just like to be naked. To which Steve commented loudly "Yeah, I said that two months a go and we're in here now"...so breaking the ice and making everyone burst out laughing!</p>

<p>And so to Steve, well, he is my rock! Though also daunted and scared by the prospect of parenthood, he is ready to be a hands on Dad, and to do whatever it takes. He is being so caring especially of recently (which have been tough for me), he is very faithful, and he says if he can't look after me and that tiny baby then NO ONE CAN! </p>

<p>The one thing that came be said about Steve, is that when the chips are down, whether he wants to or not, HE ALWAYS COMES WITH THE GOODS! If the baby is anything like him, I know I will love it. <br />
 <br />
He will be a great Dad (a reason we could not intervene- he wanted to be the best Dad- and intervening would have made him the worse Dad- that said it all to me- we were at a low point when we had this discussion.) </p>

<p>Steve has always had a sense that he's have a baby around the age of 50 anyway (he could have told me!) and he's 49 now so for him the timing is ideal, if he was going to have one, not that he was fussed either way. He'd still be happy to settle for a life with me,world travel, long holidays in the sun and his gorgeous six classic cars (maybe he can still have all this and a child?)<br />
 <br />
My gut has always told me that this baby had a real chance too if I'm honest...but again that belief is not rational (and irrational beliefs can lead you up the garden path!)- but it's my head that has ruled it all out, and has thought (and still thinks) negatively, though I am trying my best to change my mind-set. </p>

<p>After all this baby had it's Daddy's genes (strong genes) and it is surviving and dare I say thriving against the odds- just like it's Mum! I am a living walking miracle already and mustn't forget that. The last 7 years of being relatively stable with ms have been a real bonus and I am so, so blessed!<br />
 <br />
Steve's priority is my welfare, especially after the birth or c-section (they will take it as it comes with the labour. I will see an anaesthetist in a couple of weeks). He doesn't want me to get stressed and worn out, so he is even prepared to hire a nanny if that is what we require (thank goodness we are financially secure enough to have options thanks to the grace of the universe and fate smiling on our teamwork in business!). </p>

<p>Obviously he will have to move in here (no more bachelor flat for the first few months at least) but even the fact that we do have two houses could be a blessing in a way. Because of all the uncertainties with this pregnancy we have not yet bought anything for the baby (I don't want to tempt fate!). All I have is one tiny nappy and one tiny hat from the free Mothercare baby pack! </p>

<p>So in a way we are unprepared, but Steve is the type of person who will get on with it all when the time is right. We have just converted the garage into another room to give us more space downstairs, a proper dining room, and whatever else we need (a baby changing area, a playroom), and this was something we had not got around to until now, but Steve has ensured it has all happened this Summer.<br />
 <br />
Just this week though, because I have felt so anxious and ill at times, I have realised that I am being unrealistic to expect myself to cope as any normal Mum would. After all I have hauled myself back from a life of 20 hours care a week, to suddenly expect not only to manage myself, cooking, self-care- which I can do now- but also care for a tiny person 24/7 too. That is probably unrealistic and will just make me ill, so we have to find a way to make this work between us!<br />
 <br />
The truth is that I may not be able to do all that most Mum's can do and that makes me realise the enormity of my decision, in leaving the outcome of the pregnancy to fate. I truly feel that I am laying my life on the line here- and in a way it was a most unloving thing to ask myself to put myself through, wasn't it? </p>

<p>Some of my problems are with myself, in facing MY MYSELF AND MY GREATEST FEARS, but some of the limitations are real and tough! Working out what is real and what is a fear and what my limits really are, however, it a big challenge, and there is only one way to find out what the future now holds...and that is to face this uncertain future which I have now created! <br />
 <br />
For me simply running away from all my fears, however, wasn't really an option. Had we intervened I think I would have lost the Will to live anyway because I couldn't just pretend that conception never happened. It would have always been there...all the unknowns I am now facing. Without a doubt, this involves the biggest leap of faith in my life yet. When they said in the paper that Sylvie was going over the edge (with her hang glide) they were not wrong!<br />
 <br />
In an ideal world or course we'll all live happily ever after but, as we all know, this world is far from ideal, the future is unknown and in reality anything could happen. It may be that I am destined to have this baby but that it will make me worse and I will die (not that I believe this will happen) but in this scenario I would have no regrets. I've already done so much more that I ever envisaged 7 years a go. Death doesn't scare me. It's life that is the scary prospect for me now! </p>

<p>Getting worse with ms and being ill and feeling like crap- that is what scares me far more than death- and also becoming an unhappy and horrible person to be around. I don't want to be like that. I want to be a good Mum and a loving partner to Steve, or I'd rather not be there at all. To me that is a far worse scenario than death. If I died Steve would look after the baby, move on with his life and be OK-and that is what I'd want! <br />
 <br />
But I have a feeling the next chapter is for me to experience and live through too. So we have to work out a way to ensure that our future will work for all of us! </p>

<p>In my dreams this will be prove to be the best thing we ever did though right now that is really hard to envisage! I still cannot yet get my head around having a healthy baby, knowing it is healthy will be a huge relief in itself. Maybe I wasn't listening in school when they taught us about the birds and the bees because I can't understand how my body can be creating a tiny little human being that will call us Mummy and Daddy! (it is a remarkable thing anyway but for me it was those operations as a young girl that left me with a very strong belief that for me this was just not possible!). <br />
 <br />
So that just about says it all about what has happened so far this year! Up until the last couple of weeks, with the anxiety, leg spasms and discomfort, really the pregnancy has gone like clockwork and (morning sickness apart) has been a breeze, so once again I feel very lucky.</p>

<p><img alt="sylvie30weeks.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylvie30weeks.jpg" width="300" height="416" /></p>

<p>Me now at 30 weeks with my tidy bump!</p>

<p>Officially I am due to have the baby on November the 19th, but with my uterus, well, anything could happen. Maybe I will be totally wrong and that a c-section may not be necessary, maybe a natural birth may be possible, maybe I can avoid an epidural, though this is hard to envisage (I am worrying about incontinence and fatigue -and understandably- but will have to trust the doctors). </p>

<p>Still I seem to have been wrong about pretty much everything else in how this pregnancy was going to pan out, including the date of conception, so you never know do you! So much for little Miss "I know my body"!!! Steve never misses a chance to wind me up about that and remind me of the fact that I have been wrong every step of the way so far! So maybe I'd do better to remember what he says, NEVER TO UNDERESTIMATE NATURE!<br />
 <br />
Anyway, for now I am now focused on the next hurdle and surmounting it, which is to get to the 24th of September (32 weeks). I will have another scan around this time and we'll see how baby is doing and take it from there. Ideally I want to get to 36 weeks - 24th of October- before having the baby - but as with everything this year, it is all in the lap of the Gods, so wish me luck. I think I may need it. </p>

<p>I am also focused on trying to use self-hypnosis to control my anxiety (though I don't seem to be very good at this) as well as positive affirmations, but it is very hard to succeed at times. I've been living in the present all the way through this pregnancy, but suddenly the future is creeping up on me and I need to be as prepared as I can be without making myself worse with the worries of it all. Denial can be a good thing but you can't live your life in denial forever- that is partly why I am talking about it all now on my online diary- because I'm at the stage now where I at long last feel that this is real. </p>

<p>This is without a doubt the biggest and scariest journey into the unknown I have ever taken- AS YOU CAN SEE, I TRULY AM DOING THE IMPOSSIBLE NOW IN MORE WAYS THAN ONE-, so please think of me and pray for a positive outcome for all 3 of us!</p>

<p><img alt="bearhugs.gif" src="http://www.healthdiaries.com/ms/sylvie/archives/bearhugs.gif" width="168" height="102" /></p>

<p>All the best<br />
Hugs & Smiles<br />
 <br />
Sylvie x</p>

<p>26/9/05 - Update-</p>

<p>Well the 32 week scan went fine. All seems to be well. This is a milestone because, although babies born after 32 weeks are still premies, they aren't up against the battle and health risks earlier arrivals are!</p>

<p>My baby is slightly below average in size, but still within normal range!</p>

<p>Because I wasn't feeling the baby move as much they put a belt around me to hold a sensor on my tummy after the scan so we could hear the heartbeat and any movements are picked up! (they call this a trace).</p>

<p>Reassuringly the baby is moving fine, I just don't always feel it.</p>

<p>We saw it moving on the scan too...wriggling about and it actually had hiccoughs...but I didn't feel it at that time, just shortly after I did, in fact my whole tummy with jumping about! (some good kicks or punches going on in there!)....typical I tell them it's not moving much and then it does a jig!!!</p>

<p>They are to monitor me week to week now though, as from 32 weeks onwards a lot can happen in a week!!!</p>

<p>The only problem I have is that I had nitrites in the urine sample, so probably a UTI. They are sending if off! I knew I had one, and had been feeling quite wobbly and ill for a reason, but it's just what SEPTEMBER does to me!</p>

<p>They would want me to take anti-biotics of course if it is, because it is standard procedure, and UTI's can trigger premature labour...but I'd prefer to do it my way, because I knew I had one anyway, and drinking loads and having cranberries work well for me!</p>

<p>What I really won't want is to start on that vicious cycle of anti-biotics and recurrent UTI's at this stage (because it is the season, my immune system gets low at this time of year so anti-biotics won't necessarily fix the problem) because realistically I may need them later, say after a c-section or birth (may well have in-dwelling catheter etc.) and although one lot would be fine, several would be a disaster.</p>

<p>In the past I have had recurrent UTI's at this time of year, and used <br />
several courses of anti-biotics, and ended up landed in hospital with a relapse and then had steroids. Now, that has to be avoided...</p>

<p>So I'm drinking loads to try to clear this. It's not as bad as last week anyway, and what they did not know then, by being unaware, well they didn't concern themselves about it, so I wasn't forced into anti-biotics etc (not that anyone is being forced yet but they may want me to later in the week)....and I've not gone into premature labour or anything!</p>

<p>So with any luck I'll avoid anti-biotics at this stage, and once the weather settles (well by November) my immune system should recover anyway, so less UTI's and less wobbliness, and less leg spasms... it is all linked!!!</p>

<p>The baby had come this far, so the baby will be fine as long as I rest and treat this by drinking loads. That can be my job right now!</p>

<p>I also saw the anestetist today and he was very nice. From the point of view of pain-relief I am classed as normal, because ms doesn't really affect what you can be given, but it was reassuring to discuss the options and what may happen.</p>

<p>As the baby is still breech, I may well just get booked in for a c-section towards the end of the pregnancy, should it go that far without premature labour! </p>

<p>In a strange way I think that may be simplest, but there is no <br />
rulebook so we'll just take this as it comes...a natural and relatively short birth would be a dream!</p>

<p>Sylvie x</p>

<p>27/9/05 - Update -</p>

<p>Course after just one day of drinking loads yesterday, with Cranberry from  Nature's Best, Grapefruit Seed Extract, and garlic...and I feel brill today!</p>

<p>Still drinking lots though as it's rough time of year for me with my low immune system...which is being even more suppressed than usual by pregnancy hormones!!! It's complex immunology though isn't it, because, technically speaking, a depressed immune system should make me less likely to relapse, but in my case, any bug or UTI, can trigger ms progression, and makes me feel like I am dieing! </p>

<p>How to explain MY BODY AND MY EXPERIENCES TO NHS DOCTORS THOUGH, I do not know? It's just not textbook is it? But in my experience the frequent use of anti-biotics triggers ms relapse- probably through candida and leaky gut- but they will just label me 'alternative', paranoid and crazy!!!</p>

<p>29/9/05 - Update -</p>

<p>Resisting the anti-biotics for E.Coli infection in waterworks found on Monday seems to have worked...as I've clearing it myself...urine sample took to hosp this pm was clear- YEAH!</p>

<p>My formula was cranberry powder from Natures Best, 2 litres + water a day, 15 drops of Grapefruit Seed Extract (GFSE- Citrical) twice a day, and lots of raw garlic (usually on avocado on rice cakes or with apple)....pretty yucky but hey it worked!</p>

<p>I always get E. Coli and reckon is stems from the bowel (gets across) or gut (via leaky gut syndrome).</p>

<p>I am trying to avoid anti-biotics because I may well need then after <br />
birth/c-section, and will take them then if necessary...but not when it's mild, my temp is not up and I feel well!!!</p>

<p>Too many courses of anti-biotics tends to, in my experience, lead to gut flora imbalance, and leaves to door wide open to ms progression...just a theory, may be wrong! So I'd rather avoid going down this path...which seems to have landed me in hosp in the past and then on steroids!</p>

<p>The best thing about today is that I think that if samples show up <br />
infections again before I have this baby (which is likely as so prone in the autumn for some reason)- though I will continue to drink loads to try to prevent them- then the doctors will TRUST ME AND MY WAY TO CLEAR THEM so there will be less pressure to take the anti-biotics time after time which could lead me down a dangerous path...for me (I believe, like I say, could just be me and my paranoia about these drugs...gotta keep an open mind- but for now that is my reality based on my experiences over the years!).</p>

<p>Of course, if I was relapsing and had a temperature I'd be the first to demand immediate treament with anti-biotics! They save many, many lives!</p>

<p>Sylvie x</p>

<p>3/10/05 - Update -</p>

<p>Hi Guys,</p>

<p>Another check up, another trace (monitor on tummy and heartbeat and <br />
movements monitored for some 15 mins- you have to press a buttom when you feel tha baby move!), and we are at 33 weeks now and all appears to be well!</p>

<p>I've been feeling brilliant since last Wednesday, then today (after a rough night, a bit of leakage from bladder, and worry that it might be amniotic fliud!) I have felt really crap! </p>

<p>This I may have overdone things at the weekend what with feeling so well! I did go to the Gym 4 days in a row before today- opps!- but it is so tempting to get carried away when you feel good, isn't it!</p>

<p>There was no obvious UTI today- though they are sending the sample off to make absolutely sure.</p>

<p>I blame the weather, suddenly it has gone from quite warm, to very cold again today! These sudden termperature changes really mess my immune system up and confuse my bladder. The baby pressure could also have triggered the incontinence episode (they checked fluid around baby and it is fine!).</p>

<p>I talked at length with the midwife who looks after lady's with <br />
disabilities or special needs, and that was helpful. They will try to get me into a specially adapted room on my own on the ward after the baby has arrived. This midwife also said to talk to the Doctor next week, as if I requested a caesarean then I'd probably just get one.</p>

<p>As the baby is breech this may be the likely scenario anyway, when you bear in mind my ms problems, and the strange angle of my cervix and womb, pointing up off to the right and the fact that the baby is growing well and may well run out of space to turn around with my half sized womb.</p>

<p>What I want to avoid is hours of labour, then being met with complications and then having to have a c-section anyway!</p>

<p>For me it's not so much the pain of labour, as the fatigue, stress and worry. I want what is SAFEST FOR MY BABY! So will talk to consultant next week when she is back (I had a nurse under another doctor in charge today!).</p>

<p>The baby still seems to have choice as to where it sits, but I can't see this pregnancy going to term. I'm wishing I have more fat on me now to pad me out, as this head digging in my ribs can get very uncomfortable, but I guess as long as the baby is ok (i.e.in enough fluid to keep it safe, padded and protected) that is the all important thing (I worry too much). </p>

<p>Discomfort I can do as I am a tough cookie and the 3rd Trimester in pregnancy can be most uncomfortable!</p>

<p>My Dad came with me to the scan today to share in the experience and he was very impressed with the care and very interested in the technology. They had no such scan and monitoring machines back when my Mum was pregnant with me and my brother!</p>

<p>The scan lady was kind enough to do me a scan print out as well! I find them rather surreal, makes baby look like an alien in a way, but amazing never the less (the further on you get in pregnancy the harder it is to read the scans!).</p>

<p>You can pick out the facial features: eyes, nose, mouth, chin, looking at scan sideways starting on the right...and there's also a tiny hand! Awwwwwww!</p>

<p><img alt="ourbaby_33weeks_smaller.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/ourbaby_33weeks_smaller.jpg" width="400" height="300" /></p>

<p>Scan at 33 weeks</p>

<p>Take care<br />
Hugs & Smiles</p>

<p>Sylvie x </p>

<p>6/10/05 - Update -</p>

<p>Hi Guys,</p>

<p>What is it about this time of year and Urinary Tract Infections. Some of you have had bad ones. I guess I'm lucky in that the E. Coli one I have is low-level, so no symptoms, no ms worsening, and no temperature...just the pain of having to drink and pee loads.</p>

<p>Though the urine sample that I handed in at the hospital on Monday was clear of Nitrites from the stick test, because I was feeling so rotten that day, they had it sent off just to check it...</p>

<p>And it came back showing the E. Coli bug in it. No surprise there really, as whenever a sample is sent of there is usually something in it (usually E. Coli) especially at this time of year.</p>

<p>The Doctor is happy for me to stay off the anti-biotics as I'm not feeling terribly ill (just a little under the weather)...for now anyway, as long as I continue to drink lots and call them if it gets worse or if I get a temperature...but it really pisses me off, not just having to drink so much with my terrible bladder (with baby sat on it making it worse and worse now). It is a bind...WHAT IS WRONG WITH ME???</p>

<p>I've just tried to get hold of my Neurologist to see if she'll do blood tests to see what my neutrophile count is, because I feel as though my immune system is terribly low (making me prone to all sorts, it has been at this time of year before, but I've not been pregnant before, so it is a bit more serious now, not just about me!).</p>

<p>I'm also going to pay for a gut permeability test, to see if my gut is leaking. Knowing that it isn't will be important, as this means the source of the UTI isn't stemming from my gut. If it is leaky then at least I know what I can do to heal it and try to fix the problem.</p>

<p>But it could all just be low immunity (ironic when you thing ms is thought to be an overactive immune system!)....or bladder retention which is getting worse as I can't gently press on bladder now to aid it emptying, because there is baby in there and I have to be really careful. At night I am waking and wanting to go as I have bladder spasms as usual, but I can't pee so sleep is getting more and more disrupted. Self-catheterising won't help as, although this empties the bladder, it causes further bladder pain after a short while, and I can't keep irritating and exacerbating the bladder like this. At other times I wake with real bladder urgency and it's hard to sit up now with my tummy, I have to turn onto my side and sit up and sometimes I start to leak a bit before I manage to get onto the commode by my bed!!!</p>

<p>Or it could be cross-contamination from the colon/bowel, as I am having trouble with constipation (alleviated only by the odd enema) and terrible wind right now, which again causes bladder pain and disrupted sleep!</p>

<p>Oh the joys of MS & pregnancy, huh!!! What a combination!</p>

<p>And yet, this is the easy bit really...the calm before the storm!</p>

<p>Sometimes I wonder what on earth have I done! I feel totally irresponsible, but you can't control all that life throws at you, there are so many unknowns and variables...you just have to follow your heart and get on with it! </p>

<p>Whatever the trouble is making me prone to UTI's in general, it is scary, because of the implications for my longer-term future. Having to drink and wee so much makes me feel like my life is a joke in a way. I just WANT TO BE FREE! If I fail to drink as much goodness knows what will happen with my health and the MS! And yet I don't feel as though I can live like this forever! Oh, dear, I am feeling sorry for myself today aren't I!</p>

<p>Bottom line is that I am very lucky to still be here, alive and kicking! It's just still very tough at times, isn't it, and it does get you down! </p>

<p>Sylvie x</p>

<p>Update 12/10/05</p>

<p>Hi Guys,</p>

<p>Well I'm 34 weeks and 4 days now...</p>

<p>All seemed to be well today though amniotic fluid levels are a bit below average, and the baby is still breech.</p>

<p>They think it is unlikely to turn so want to bring me to 38 weeks if possible, and if it's still breech then give me a caesarean.</p>

<p>Sounds like a reasonable plan to me.</p>

<p>They took some blood to test my neutrophile count on my request anyway, and I have a Neuro appointment next week! I also had another injection of anti-bodies due to my blood being Rhy -ve.</p>

<p>Though urine sample passed stick test, they are sending it off because it is likely I still have this E.Coli infection...would explain the way I've been feeling, so the pressure in then on to take the conventional treatments of anti-biotics...quite a dimlemma for me.</p>

<p>If it is the UTI making me feel like this then I do need to clear it up. But I don't want to start on that vicious cycle of taking anti-biotics when it's not really necessary, and ending up with the exact same UTI back again after finishing th course...then needing more and more. The time to take them would be before giving birth/ceasarean...so I'm as strong as possible for that event! </p>

<p>But it is all too easy to get fixated on this being the cause of why I am feeling under the weather...and that in itself triggers the whole anxiety cycle I'm living with. what if the real problem is simply my anxiety?</p>

<p>I feel caught between conventional and alterative medicine at times and neither necessarily have the answers to my difficulties! </p>

<p>Can't imagine going through that feeling so run down!</p>

<p>Sylvie x</p>

<p>Update 19/10/05<br />
 <br />
Hi Guys,<br />
 <br />
Well I've been having a rough week with bladder incontinence, and I've not been 100% sure that the leakage is urine, though I have been pretty sure it is. My body is just under a lot of strain now.<br />
 <br />
What is ironic is that the hospital never phoned me last Friday so that urine sample must have been clear from E. Coli. I think some bacteria got across from my bowel though today, in spite of my best efforts to avoid this, because I've been getting bladder pain and a bit of cystitis this afternoon,so I'm back to treating myself as if I need to flush some E.Coli bacteria out (the urine sample I gave in this afternoon at my anti-natal appointment passed the stick test though, so no obvious infection there). <br />
 <br />
Last night I woke to found there was liquid in the dry-nites nappy I was wearing...which I assume meant that I'd weed but without waking up as per usual. It is rare that this would happen but with the baby sat on my bladder, it wouldn't have come as a great surprise.<br />
 <br />
Today I was my Neurologist and have an anti-natal check-up afterwards.<br />
 <br />
My Neurologist seems pretty happy with what I am doing, and has faith that I will be ok and cope well. So that was good to know. She's always there if I need her.<br />
 <br />
At anti-natal the trace went fine, but from the scan it appears that the babies growth is slowing down and the amniotic fluid levels are even lower (so maybe I have been leaking?). I also get the feeling that it's pretty tight in there for the baby now.<br />
 <br />
So the decision has been made to perform a caesarean next Thursday, October the 27th, as the feeling is that the baby is probably running out of space and would be safer out than in. That will be a close to 37 weeks, which they think is pretty good going.<br />
 <br />
So suddenly it is all happening and all very shocking! I'll have steroids to help the babies development on Monday, and have another check up then. Then on Wednesday afternoon I will see the anaesthetist and I'm booked in for the c-section early on Thursday morning. I'll be the 2nd one of the day at around 9am though obviously I'll have to get there earlier, or I may even stay in the night before.<br />
 <br />
So anyway, that is the plan, but really anything could happen even before now and then. I did notice a tiny bit of blood in my urine in the hospital and I told then but they weren't too concerned. I am still somewhat in shock trying to take on all this news and feel even more sick than I have been doing (this was due to a late resurgence of morning sickness and some anxiety of course- quite natural at this stage!)<br />
 <br />
I am very scared. It is all seeming mighty real now and there is no turning back. I just want the baby to arrive safe and well and be ok! I'd also like to be pretty well myself, make a good recovery and cope with Motherhood, but all that remains to be seen. It's going to be hard the next chapter whatever happens, but at least everyone else have faith in me!<br />
 <br />
Well that's all for now.<br />
 <br />
My job now is to try to rest, relax and prepare for the big event. </p>

<p>Wish me luck!</p>

<p>Take care<br />
Hugs & Smiles<br />
 <br />
Sylvie x</p>]]>

</content>
</entry>
<entry>
<title>Achieving my hang gliding dream</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2005/09/achieving_my_hang_gliding_dream.html" />
<modified>2005-12-01T11:44:37Z</modified>
<issued>2005-09-12T13:00:13Z</issued>
<id>tag:www.healthdiaries.com,2005:/ms/sylvie//70.3659</id>
<created>2005-09-12T13:00:13Z</created>
<summary type="text/plain">On the evening of Wednesday the 13th of April, 2005, I achieved my hang gliding dream! At last the weather was perfect with very little wind so we went for it!!! At 7 pm I had a chat with Stewart...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>On the evening of Wednesday the 13th of April, 2005, I achieved my hang gliding dream! At last the weather was perfect with very little wind so we went for it!!!<br />
 <br />
At 7 pm I had a chat with Stewart Bond, my instructor at the Icarus School of Hang Gliding ( <a href="http://www.fun2fly.co.uk">www.fun2fly.co.uk</a> ).<br />
 <br />
<img alt="huddersfieldinternational.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/huddersfieldinternational.jpg" width="500" height="375" /><br />
 <br />
Then, next minute, I was getting kitted up! First I had to put on a lovely warm body suit, and then fit my way into the harness, which is a very snug fit....you have to make sure your head and limbs fit through all the right holes. It was quite daunting. By the end I felt like the Michellin man!<br />
 <br />
<img alt="sylviestewart.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylviestewart.jpg" width="500" height="375" /><br />
 <br />
Next, after a quick briefing, we travelled by car across the airfield to the hang glide.</p>

<p><img alt="sylviestewartreadytogo.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylviestewartreadytogo.jpg" width="500" height="375" /><br />
 <br />
<img alt="sylviegetsin.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylviegetsin.jpg" width="600" height="800" /><br />
 <br />
Getting into that way not easy either, and then I hung there a bit like a fish on hook- but the good news it that I felt very secure! They decided to tie my legs together too for extra security (My partner Steve called this altitude bondage!!!).<br />
 <br />
<img alt="sylviehangsready.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylviehangsready.jpg" width="375" height="500" /><br />
 <br />
Most people manage to cross them and keep them crossed but it was a safer bet for me to do it this way. Even paraplegics can hang glide you know. In that case their legs are simply tied to those of the instructor!<br />
 <br />
<img alt="sylviesmilingallset.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylviesmilingallset.jpg" width="700" height="525" /><br />
 <br />
Stewart took up his position in the harness and I put on some warm gloves. Stewart was hanging just below me and I was instructed to put my right arm around his back and hold onto his shoulder strap, and my left hand was to hold onto his wrist. Stewart then realised that, in order for him to be able to press the remote control button to activate the camera located on the far left wing of the hang glide, he was going to have to sacrifice his gloves!!! The brave man!<br />
 <br />
<img alt="sylvieinstructed.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylvieinstructed.jpg" width="500" height="375" /><br />
 <br />
The hang glide was attached to a microlight plane by a cord and the plan was that this small plane was to tow us up to the height we were aiming for (2620 ft) and then release us.<br />
 <br />
Next minute we were off and within seconds we lifted off the ground. The strange thing was that it felt so natural. I wasn't nervous. I just enjoyed the thrill of it as we rose higher and higher. <br />
 <br />
The views of Huddersfield and the countryside surrounding it, the tiny airfield, the tiny fields, the spots that were cows, sheep and trees, were spectacular! I could not stop grinning and chatting to Stewart over the loud humming of the microlight. I was also surprised by how smooth the flight was. We were very lucky with the low winds that evening!<br />
 <br />
As we rose higher and higher it did get colder and colder (particularly my feet) but that did not bother me, the views were so glorious! I did try to cover Stewart's left hand with my gloved hand to protect him from the chill up there, and this did help him a little- but he took the cold like a man!<br />
 <br />
Then, after a signal from the mircrolight pilot, indicating we had reached our target of 2 620ft, I ducked my head, as the chord attaching us to the plane was released...and then there was complete silence. It was so peaceful! We were just flying through the air like a bird! The experience was like a dream!<br />
 <br />
<img alt="sylviefliestomoon.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/sylviefliestomoon.jpg" width="500" height="375" /><br />
 <br />
Stewart wanted to then take a few still shots of us using the remote, but unfortunately, when we turned to look towards the camera, we found that the wind had blown it off course, so it was no longer pointed at us. So poor Stewart had frozen his hands for nothing. I think they call that sods law. I didn't mind too much because I knew I'd remember this experience and the views for the rest of my life! The streetlights were now just coming on in Huddersfield as it was getting to dusk and it was most picturesque!<br />
 <br />
Next, Stewart asked me if I'd like to try steering the hang glide. To do this you had to push on the bar, either on the left hand side to go left or on the right hand side to go right.<br />
I had a go but my attempt was pretty feeble. As I was above Stewart steering required that I apply even more pressure to the bar. I steered a little and it was fun to try anyway!<br />
 <br />
Then I agreed with Stewart that we should do some acrobatics. This involved pushing the bar forward and then we were plunged into a freefall dive and we swirled about at angles of up to 90 degree! Though very disorienting (I was convinced we had gone upside-down several times!) I enjoyed this totally mad experience. Some people would hate it but I loved it. It was very surreal.<br />
 <br />
In doing these stunt we lost a lot of height very quickly and before I knew it the ground was getting closer and closer. Stewart steered us beautifully towards and onto the runway and told me to look up as we touched down, as the ground would rush up upon us. I looked up, held my breath and we landed perfectly safely and smoothly but I'm glad I took his advice because the speed the ground came upon us was very daunting. Looking down would have been very unwise!<br />
 <br />
<img alt="landingindark.jpg" src="http://www.healthdiaries.com/ms/sylvie/archives/landingindark.jpg" width="500" height="375" /><br />
 <br />
Everyone could see just how much I'd enjoyed the experience of hang gliding and everyone congratulated me! Steward then dismounted and I was left hanging there, whilst folk made a few jokes about their work being done and how they were off to the pub. But then they took pity on me and released me.<br />
 <br />
My mobility was much improved thanks to the cold and I felt confident about stepping over the bar to get out (I'd had help lifting them in getting in). However my legs did not want to lift and we then all realised that they were still tied together. We all ahead a good laugh about that.<br />
 <br />
I was untied (fun this altitude bondage!) and given a hand back to the car and back to the cabin. I was on a total high and could not stop smiling. The hang gliding experience had lasted around 20 mins in flying time and had exceeded all my expectations!<br />
 <br />
I would recommend it to anyone!<br />
 <br />
Thanks to all who sponsored me!<br />
<a href="http://www.justgiving.com/sylvieshangglide ">www.justgiving.com/sylvieshangglide</a><br />
 <br />
love<br />
 <br />
Sylvie x</p>]]>

</content>
</entry>
<entry>
<title>Sylvie&apos;s charity hang glide!!!</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2005/03/sylvies_charity_hang_glide.html" />
<modified>2005-12-01T11:44:23Z</modified>
<issued>2005-03-09T21:47:02Z</issued>
<id>tag:www.healthdiaries.com,2005:/ms/sylvie//70.2475</id>
<created>2005-03-09T21:47:02Z</created>
<summary type="text/plain">As most of you know I am always up to something crazy to raise money for my favourite MS Charity, The MSRC. Well this year, on Sunday the 3rd of April 2005, I&apos;m doing a tandem hang glide!!! Not only...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>As most of you know I am always up to something crazy to raise money for my favourite MS Charity, <a href="http://www.msrc.co.uk">The MSRC</a>.</p>

<p>Well this year, on Sunday the 3rd of April 2005, I'm doing a tandem hang glide!!! Not only that, for my own personal marathon challenge we will attempt to reach a height of 2620 feet (the equivalent to the 26.2 miles ran in a marathon)!</p>

<p>!!!-YIKES-!!!</p>

<p>It is going to be quite a RIDE, and yes, I am nervous!!! I've been reassured I don't need my legs much, but have also been advised not to eat much breakfast as it can get pretty gusty up there!</p>

<p>If you want to suppost me you can sponsor me by visiting my online fundraising page: <a href="http://www.justgiving.com/sylvieshangglide">www.justgiving.com/sylvieshangglide</a></p>

<p>Wish me luck! Hopefully I'll be letting you know how I get on!</p>

<p>Sylvie </p>]]>

</content>
</entry>
<entry>
<title>Re-adjusting my priorities and re-focusing on my health</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2005/02/readjusting_my_priorities_and_refocusing_on_my_health.html" />
<modified>2005-12-01T11:44:06Z</modified>
<issued>2005-02-01T16:26:50Z</issued>
<id>tag:www.healthdiaries.com,2005:/ms/sylvie//70.1806</id>
<created>2005-02-01T16:26:50Z</created>
<summary type="text/plain">There has been a shift since the start of the year. I have come to realise just how much I am struggling in my life, just how harsh I am being with myself, and just how little I am living...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>There has been a shift since the start of the year. I have come to realise just how much I am struggling in my life, just how harsh I am being with myself, and just how little I am living in the present. It's like a constant balancing act and it is not a good way to live.</p>

<p>I see now that I have become overconfident and fallen right into that "thinking I'm OK again" trap, pushing way too hard, lapsing with my  diet a little bit here and there, thinking I can get away with it because I have felt so much more normal again...and all that eventually takes its toll. I am forever thinking about the things I ought to be doing, rather than enjoying the things that really matter, friends, family, people, quality time. </p>

<p>I am now feeling a lot more relaxed about everything, and even though I do  have to make a living, work is not going to come at the price of my health. Also I am not going to SACRIFICE myself in giving to and helping others anymore. What kind of a message am I giving to others if I do this? </p>

<p>For me it will not be a case of opting out, but more of TRUELY getting the balance right, enjoying silence a lot more, enjoying MUSIC (I never took the time before- and it is so marvellous- brings me back to my centre and back to my heart), and watching less TV.</p>

<p>I am also thinking of doing a sponsored week of total retreat into silence and meditation with no computer, no TV, not phone, a little bit of music, and a very simple largely raw food diet. How exciting and scary will that be!</p>

<p>The saddest thing that I realised, is that I have become so swept away with projects, work, business...I had forgotten the reason it all developed in the first place...my interest, passion and following my heart...it's swept me back into the real world and I am not well enough for that yet really. </p>

<p>I do enjoy the challenge of running the stairlift and scooter businesses as well as working for the MSRC and building the odd webpage, and I am very determined to succeed (so far it's gone pretty well) by doing my best, but really, after having done that, it's not up to me is it. The universe decides ultimately on so many matters so there is no point in worrying or losing you head. I am learning to let  it all go...there is no hurry, deadlines or pressure. It's me who is setting the hurdles so high. Even at the Gym I am not pushing so hard now just enjoying what I can manage to do, and some days that is quite a lot. </p>

<p>I'm also attemping to cut back on social engagements or demands a bit. I had  started to view everything as an ordeal and I have now decided to, either  say No, or go for it and LIVE IT FULLY, not go along with a plan but not really want to. It is hard though because I seem to attract so many people and yet part of me just wants to withdraw and only talk to family and keep life simple...for some time at least.</p>

<p>This year I am being a saint with my diet and have started a detox programme with herbal supplments from <a href="http://www.renewlife.com">Renew Life</a>. I am appreciating simple food so much more! In fact I am appreciated everything in life so much more and just seeing everything is a much simpler light with a heart filled with gratitude. </p>

<p>The Tsunami disaster makes us all realise just how precious everything is and how lucky we are to have a home, food, mod cons, nice things and friends and  family.</p>

<p>I am already feeling some benefits from my detox supplements and diet. I am able to balance better, which makes life less of a struggle, and I am able to walk a little better. At the moment I am having a weeks break from supplements but next week will really get down to the nitty gritty and tackle candida and parasites with an even stricter anti-candida diet. I will be taking Paragone from Renew Life. I really am focused this year. I have put off doing these detoxes and diet for long enough. I really do feel I have nothing to lose by trying, because I can do this. I have the dsicipline and determination. Struggling and feeling rubbish has motivated me enough to do whatever it takes once again.</p>

<p>My philosophy at the moment is not to rush any decisions, and be more...rather than try to  work out the best way forward. Hopefully this will I will intuitively do what feels and is right for me. It is easy to overanalysis sometimes, and especially easy to throw money away needlessly at therapies which may or may not do some good. My feeling at the moment is that I'd rather just spend time listening to music or being still. </p>

<p>The Universe has pointed me down this Path three times so it has to be worth exploring, and it is actually cheaper to get on and treat <br />
myself rather than pay for tests to try to find out for definite what is going on- testing is not fool-proof anyway. If I improve I will get my answer this way anyway, won't I, and if not, well, I can rest easy in the knowledge that I have tried my best!</p>

<p>There are many people out there who all claim to have the answer to my ms but that doesn't make sense to me anymore. I think the best thing I can do start listening to my body again. I want to take the time to try to find all the answers to my health issues from within and it really does not matter how long it takes, I love my life! I feel so, so happy at times...I feel almost bad to feel so happy when others are suffering so much in other parts of the world...but I am just so grateful for all that I have and the life that I lead. It is a remarkable one! </p>

<p>Business is going well and I am free to work at my own pace which is great. Others are not so lucky. I feel confident that my health and mobility will improve, but even if it does not, I still want to take this challenging detox path, and rebalance my life through a much more peaceful and centred existance- just for my own peace of mind and happiness. I'll keep you posted as to how I get on!</p>

<p>Sylvie x</p>]]>

</content>
</entry>
<entry>
<title>My Roller Coaster Trip of a Lifetime!</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2005/01/my_roller_coaster_trip_of_a_lifetime.html" />
<modified>2005-12-01T11:44:06Z</modified>
<issued>2005-01-28T12:57:55Z</issued>
<id>tag:www.healthdiaries.com,2005:/ms/sylvie//70.1739</id>
<created>2005-01-28T12:57:55Z</created>
<summary type="text/plain">Had I know what I&apos;d be taking on with this trip, before I departed, I doubt that I&apos;d have dared do it. However, when you have already embarked on a ride with a schedule from hell, then there really is...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>Had I know what I'd be taking on with this trip, before I departed, I doubt that I'd have dared do it. However, when you have already embarked on a ride with a schedule from hell, then there really is NO going back!</p>

<p>When my partner Steve asked me if I'd like to go to Rio de Janeiro In Brazil, my response was immediate, "Yes, let’s do it". The next minute we were booked on a trip not just to Rio, but also on a 4 night tour of Machu Picchu in Peru, and a 2 night tour around Iguassu Falls in Brazil, and finally back to Rio. My first task was to research, which vaccinations I'd need for these travels in South America. I was very relieved to discover that I didn't not need to take Malaria tablets. However, the Yellow Fever vaccination was mandatory in order to get back into Brazil after visiting Peru, and Hepatitis A and Typhoid were recommended also. I decided to have all three jabs because you can contract Hep A and Typhoid from food, (tap) water and ice, and they are pretty nasty illnesses. I didn't want to take the risk of getting them. I had the Yellow-fever vaccination (£35) one week, and the Hep A and Typhoid in one jab (Free) the following week, and although I felt a bit rough on the days after, I sailed through this rather well.</p>

<p>Before the trip we spent 3 weeks in the Florida Keys, as we do every Autumn, then flew on from Miami to Rio de Janeiro, where we met up with my brother, Matthew (or Sir Stan Ghost on the MSRC Message Board) (it is always good to have back up!). Although it was an 8 hour overnight flight, I am quite used to long flights nowadays, and it passed pretty quickly and I handled it well. I made sure my seat was just a few rows from the toilet, even though this meant walking all the way to the back of the plane. My experience of flying in general is a very good one. The air staff are always very helpful, they let you board first before the crowds, and I order a special vegan meal (the closest I can get to best bet food).</p>

<p>Upon arrival in Rio the first things we had to negotiate was the touting taxi-drivers at the airport. As soon as they see a wheelchair and a mobility scooter they try to ‘up’ the fare for the journey. However, we weren't having any of this. We found a decent taxi-driver, negotiated the fare to Copacabana beach before we got in, then Steve set about fitting all our luggage into the estate car (they don't call him ‘Stack 'em in Steve’ for nothing!).</p>

<p>We then got our first glimpses of Rio! First a church standing alone on a hill like a siren attracting tourists not ships to see it's hidden treasures. Within minutes we are plunged into a completely different world, our minds bouncing from wonder to fear mixed with curiosity as we travel by shanty towns perched on hill tops all stacked on top of one another.</p>

<p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/shantyinrio.jpg" /></p><p align="left">

<p>Through the tunnel and onto a world of complete contrast, filled with riches and beauty, with colossal mountains, sharp and high, reaching to the sky with crystal water lakes in between. Finally onto Copacobana beach with it's mighty breakers, crashing onto the shores, as they have done for thousands of years, assaulting paradise, relentlessly turning rock into sand, with the texture of soft brown sugar. Amongst the exploding waves, spray and rip tides, sugarloaf mountain rises up majestically in the clouds like a mighty God in search of heaven. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/copawaves.jpg" /></p><p align="left"></p>

<p>Upon arrival at our Hotel we experienced a few teething problems, such as a small step at the entrance, and a lift too small to fit my mobility scooter in. However, though tired and a little bit overwhelmed, even I knew that these difficulties were not insurmountable. Adaptation is the name of the game! I used by wheelchair in the lift, leaving my mobility scooter in a locked room downstairs, and my strong men, helped lift my scooter up the little step. We were paying £30 a night per room at this hotel. The slightly more posh and more expensive hotels, costing around £60 per room, appeared to have better facilities to cater for disabled Guests.</p>

<p>The next minute (by this time it was around 11am Rio time), I found myself crossing a hugely busy road and being carried onto Copacabana beach in the glorious sunshine. I crawled down to the sea and the breakers swept over me, causing me to scream out-loud in delight. This, along with the views, is a great tonic for jet-lag! Steve had a lot of fun bartering with a lad who was trying to sell us Copa- beach towels. It was amazing how humour can overcome any language barrier. After some 20 minutes of laughter we sealed the deal and bought one for $10 (US).</p>

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</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylviestevecopa2.jpg" /></p><br />
When on Copa beach you have to keep an eye on your valuables at all times. We were doing just fine with this until a sudden HUGE wave swept up and over all of us soaking us and all our things. In the ensuing chaos, a man, trying to be helpful moved my wheelchair back, which had our camera bag hung on the back of it, but he then left it unattended!!!</p>

<p>Everyone's attention was on salvaging wet towels and clothes, except, thankfully, my Steve‘s, being a former CCTV camera operator in Tesco. Realising that this was a perfect opportunity for any thief, he looked up towards the wheelchair and saw an unusual movement and sensed that something was wrong. "Where are the cameras?" he said, and within seconds ascertained that they were gone!</p>

<p>The next minute I saw Steve chasing up the beach after a drink-seller, the only person walking away from the scene at a quick pace. He caught up with him, opened his white drinks box, retrieved the camera bag (with cameras worth some $1000), and grabbed hold of the cowardly thief, who at this stage just wanted to leave the scene. With no policemen in sight, and frustrated at this, Steve opened his drink box again, took a bottle of water out for me, asked him how he liked it, and then smacked him one!</p>

<p>The thief hurriedly scurried away, tail between his legs, followed by a few Yorkshire accented expletives, advising him of what would happen if he returned. Steve turned around, walked back announcing to the world "At least I got a drink out of it", and someone said "Good punch".</p>

<p>I was in shock. It all happened so quickly, and I felt very grateful to my Steve, for saving the day like that! Since that day, Steve has become known as my own personal Mugger-basher!!!</p>

<p>That night we found a wonderful local cafe, called The Grill. I was concerned how on earth I was going to mange to stick to the Best Bet Diet on this trip, and had decided that it would probably not be possible, but this cafe was ideal. We ate there every night! There were salads, rice, fish, chicken, potato and fruit and well as plenty more dishes, pastas, meats and puddings. Ideal for me, and on average a good meal cost £2 (you paid by weight per 100gs). We even got free freshly squeezed orange juice with vouchers our hotel gave us. With this, the hotel buffet breakfasts, with a vast array of fruit on offer, and with a few carrots, apples, rice cakes and nuts to see me through the day, I managed to eat very well indeed.</p>

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<p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/tinynickibbmeal.jpg" /></p><p align="center"><br />
The next day was rainy (it was the rainy season) so we relaxed in the hotel and went out exploring a few shops. I found the begging on the streets heart-breaking, and we gave them a few Reais (5 Reais = £1) so they could at least get something to eat. The following day was brighter again so we found a lovely taxi-driver, called Antonio, who drove us all the way to Corcavardo, at the top of the mountain where the famous statue of Jesus is located. It was a very steep, bendy, hair-raising drive up there. Once we disembarked from the taxi. I needed the toilet urgently and was whizzed through the crowds very efficiently to the disabled toilet. After this I found myself being pushed onto two escalators with great ease, and complete safety, and then suddenly there I was staring at the hugest and most magnificent statue of Christ with his arms stretched out, over the backdrop of the most stunning views of mountainous Rio. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/jesus1.jpg" /></p><p align="left"></p>

<p>We then travelled onto Sugarloaf, where we took two cable cars to get to the top of this mountain. The views of Rio and Jesus on the hill (this time tiny) were awesome. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/hauntingrio.jpg" /></p><p align="left"></p><p align="left">There were a few steps at the entrance which I managed to climb on the way in, but otherwise the disabled access was very good here too. On the way down, I was too hot, tired and hydrated to manage the steps, but even before we asked for help, I found myself being carried down the steps in the wheelchair by some strong Brazilian men. Out trusty taxi-driver, Antonio, was patiently awaiting us, even though it has taken several hours to mount and dismount Sugarloaf. He took us back to the hotel and we paid him the £24 for the day which we had arranged with him, and gave him £6 extra. That worked out as £5 per hour, which may not sound a lot but it makes for a good living in Brazil. I still found it odd effectively be hiring your own personal chauffeur for the day.</p>

<p>The next day we rested again. I did not feel very well, but my brother reassured me that I had probably just got dehydrated the day before, and provided I ate and drank plenty all would be well. Steve soon learnt this mantra, which truly did reassure me, "Plenty to eat and drink and you'll be fine".</p>

<p>The next day we embarked on the most intense and insane travelling schedule I have taken on with ms to date. We got up at 5am and Antonio took us to the airport. We then flew with Air Varig (Brazilian Airways) to Lima, the capital of Peru, via Sao Paulo. The beautiful Air Stewardesses, especially Anna, were most helpful, and I started to fly with what my brother calls "Air Sylvie". If there were steps to climb on or off the Varig Aircrafts, and if I was too tired to manage them, I found myself carried down, surrounded by strong Peruvian men, as if I was Royalty. They certainly knew how to make my life easy and treat people with a disability very well. In Sao Paulo airport we were amazed to see massage chairs were set-up and I enjoyed a quick 15 minute massage for $10, which was very, very good indeed.</p>

</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylviemassage.jpg" /></p><p align="left">
In Lima we were met by a tour minibus, sent just for the 3 three of us, which handled our baggage, scooter and wheelchair, no problem. The first thing that strikes you about Lima is the smog, a mixture of smoke (pollution) and fog, a thin layer of cloud continually hanging over this Capital City. Due to the coastline being so narrow with a mountainous back-drop the cloud gets trapped and legend has it that it never rains here, and that some houses have even been left without roofs. On the way to the hotel we travelled by the coast and saw poverty-stricken Peruvians collecting rubbish off the dumps there to sell to make some kind of living, a shocking sight. To then arrive 10 minutes later at a very posh hotel was very disconcerting for me.

<p>After a rest, we ventured out and found another local cafe. We were met with helpful, friendly, smiling people, who could not help you enough. In spite of the language barrier we managed to figure out what we could order with much miming and laughter. Being somewhat nervous about what I ate, how the food was washed and prepared etc. I stuck with cooked fish, broccoli and rice, which was delicious.<br />
</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/percycafe.jpg" /></p></p>

<p>We also had our first taste of Inca Cola, a delightful Peruvian soda with a lime flavour. After this we visited a couple of shops. Little lads begging on the streets tore at my heart-strings. We gave them some change and they ran away delighted. By this time I was exhausted so we retired to the hotel . I collapsed in bed, my head buzzing with the events of the day and eventually fell asleep.</p>

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<p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/steveincacola.jpg" /></p>

<p>The next day involved another early start with breakfast at 7am, then onto the airport, where we took the short flight to Cusco. In contrast to Lima, Cusco had a healthy red glow about it, the statues, the buildings, and Mediterranean feel to the place. The weather changes very quickly here too. We arrived it was raining but by the time we emerged from the airport we were met with brilliant sunshine.</p>

<p>Steve disappears to check out a few craft-stalls and came back to our minibus moments later wearing the most wonderful leather Inca Peruvian hat (£6), adorned in many, many beautiful necklaces (Only $1 each) and followed by a whole bunch of craft sellers! We bought some Coco leaves to chew, which helps you to adjust to the high altitude (3 400m above sea level) and then set-off to our hotel.</p>

<p>Upon arrival at our hotel we were told to lie down for a few hours in our hotel rooms, drink plenty of Coco tea (available in reception), and chew on the Coco leaves.</p>

<p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylviecocoleaves.jpg" /></p>

<p>This we did throughout our stay here and though I know not how, I have to say that this did help with the altitude sickness. There were steps at the entrance to the hotel but by this stage I was used to getting around such minor obstacles. It just was not a problem especially as there were always plenty of people around ready, eager and willing to help us in anyway they could.</p>

<p>We went out to explore Cusco in the late afternoon (which was actually early evening, 3 hours later in Brazil, making for an even longer day). I was totally unprepared for the reception we were about to get upon exiting the hotel. We were literally mobbed by craft-sellers, pushing their wares in front of our noses, and begging us to buy things with pleading eyes. Being on my mobility scooter made it all the harder for me, as I was down on their level. Also they had never seen anything quite like a scooter before, and it was such a unsettling feeling to be viewed as such a rich and privileged person.</p>

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<p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylvieperugirls.jpg" /></p><p align="left">
We bought a lot of lovely things over the course of that evening. Inexpensive beautiful wares, finger puppets sold by little children, purses, wallets, rugs, Peruvian pipes music, gloves, alpaca jackets and cardigans, a fluffy Llama and an Inca chess set. We did almost all our Xmas shopping all in one go!!! Everything was very cheap and it was beautifully crafted stuff.

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A little lad called Mark Anthony, after selling me postcards, took on the role of body-guard and bag-carrier for us. He was well tipped by all of us very generously for his efforts and his honesty- (with so many bags it would have been easy to rob us).
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We travelled down the road away from the insanity, and after trying to lift my mobility scooter up and down many a pavement, decided it was far better for me to drive carefully on the road with all my minders! Further on we found a much quieter market, a real sanctuary for me.
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After managing several hours of shopping and giving small change to small children, the effects of the altitude, my exhaustion and that MIND-BLOWING NIGHT, took their toll. I scooted back to the hotel knowing that I had pushed my body way beyond my LIMITS, and my MIND had been blown way beyond OBLIVION. My head was spinning and my mind was racing. I packed what I would need for the next day, which was to be the most challenging day of my entire life to date.

<p>I lay down and tried to sleep but started to shake, maybe it was exhaustion, the altitude, anxiety and just being run-down, but what I was feeling reminded me too much of what happens when I get a UTI I was very scared. I knew that I had to be sure that I’d make the long trip to Machu Picchu the next day, so I choose to take my emergency supply of anti-biotics, which I always carry whilst abroad, to treat any such infection.</p>

<p>I am always very reluctant to take anti-biotics because of the effect they have on gut health, and the knock on effect this can have on MS, but in this case I felt that the “quick-fix” was necessary. It was impractical to drink vast quantities of water, and I had to ensure I was well enough to make this trip! Even if I had misdiagnosed the UTI, I felt it was better to play it safe than be sorry. After all I had started to self-catheterise on this trip, to give me some relief in managing my bladder, and some of the toilets I had to use to do this on this trip were to be far from ideal. At least this way I could do this procedure with greater peace of mind. Whatever was wrong with me I was in a mess and needed that security.</p>

<p>That night I had a touch of the runs and started with a cold too. However once I stopped shaking (and stopped panicking too no doubt) I may have slept a little.</p>

<p>At 4.30 am we awoke for breakfast (pretending it was 7.30am still on Brazilian time, helped us feel it was wasn‘t quite so early!). I was still too shaky to even manage to raise a cup to my mouth, but with much reassurance from my caring brother, I set-my mind determinedly on the task ahead, which started with ride to the train station, followed by a 4 and a half train journey to Machu Picchu. I don’t know whether it was the anti-biotics kicking in, the lowering in altitude going down to Machu Picchu (2,350 meters above sea level), or simply a strength from some higher power, but on the train journey I began to feel a bit better and stopped shaking. The mountainous countryside we travelled through was awesome and the journey passed pretty quickly. We then had to take a bus up into the mountains to reach our destination.</p>

<p>The first obstacle we were met with, however, was some steps and cobbled uneven ground. As it was a gloriously sunny day, I was also immobilised by the heat. </p><p align="left">None of this was helped by the fact that no plans had been made to help us at all, and the guide we were supposed to be booked with disappeared off into thin air. At this point I must admit wondering whether I’d bitten off more than we could chew with this trip. I felt like such a burden on Steve and Matthew. However, after a quick moan about the situation, Steve went off to try to get some help, and returned shortly with a strong little Peruvian man called Frank, who saved the day, by carrying me on his back all around Machu Picchu!!! Steve and Matthew handled the cameras and wheelchair, which we used on any flat paths, but whenever we were met with steps, which was often, I was carried by my saviour Frank!<br />
</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/machupicchusylvfrank.jpg" /></p><p align="left"><br />
Machu Picchu, discovered on 24th July, 1911, by an American Professor, Hiram Bingham, is a majestic, ancient ruin, hidden in the remote Andes, north-west of the city of Cusco. This 15th Century Inca citadel is arguably the outstanding highlight amongst both the natural and man-made wonders of the entire South American continent. This sacred City is built between two sharp peaks, in south the Machu Picchu (ancient or old mountain) and North the lower Huayna Picchu (young mountain), and hides the secrets of the Incas and their worship in temples, and ritual sacrifices.</p>

<p>It is hard to comprehend how they could live in such a beautiful place and yet kill their chosen victims, cutting their hearts out, in the belief that this would appease the Gods, they worshipped, the sun and the moon. Now what is sacred about that? </p><p align="left"><br />
</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/machupicchusteve.jpg" /></p><p align="left"><br />
To actually be visiting these well preserved ruins was totally UNREAL to me. Llamas grazed on the grass and popped their heads through the stone doorways. The sun shone down, giving us glorious views, with mist hanging around the vast, and unusually shaped mountains. Though the heat was debilitating I simply coped. There was too much to see and take in not too.</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/llama.jpg" /></p><p>As soon as we made our way back to the Lodge at the entrance, the clouds rolled in and it began to rain. We then enjoyed a magnificent buffet in the Lodge, though at such altitude our appetites were quelled, before taking the bus back down the mountain. A young Peruvian lad dressed in costume played the pipes and drum, and sang on the way back down, and was rewarded with tips.</p>

<p>At the train station many more crafts were on sale. I bought a beautiful Machu Pichhu rug there. On the long train journey back to Cusco, we were entertained by the staff dressing and dancing in Peruvian costumes, and then modelling quality clothing, which they later tried to sell to us. This was fun. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/perucostumetrain.jpg" /></p><p></p><p>Once back in Cusco, we returned straight to the hotel and retired. That was one HUGE DAY IN THE LIFE OF SYLVIE BROWN, BUT I F****** DID IT!!!</p><p>The next day we had a lay-in, well relatively, as we had breakfast at 7am! We then flew back to Lima that morning. I was so happy to be able to breath easier again, even if it was SMOG! Later on that day we explored Lima, and did more shopping. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/stevelimastreets.jpg" /></p><p></p><p>We found an Indian Market, and Steve spotted the most beautiful Peruvian Poncho, which I tried on. It really was lovely, and when the lady put the fluffy hat on me too, Steve decided that I looked so fabulous that he bought it for me immediately (it was only £18). I wore in scooting back to the hotel and I will never forget the way everyone stared at me. Some men whistled too. I think it was the combination of the Poncho, and me on my mobility scooter. One policeman even took out his whistle, blew it, saluted and then waved me by! </p><p>Sylvie the Peruvian Princess had been born!!! The smile on my face was a picture!</p><p></p><br />
<p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/ponchosylvsteve.jpg" /></p><p align="left"></p>

<p>After a rest we went back to our favourite local cafe. My appetite had suddenly returned with a vengeance and I swear that the broccoli, fish and potatoes I had that night, were cooked to perfection and made in heaven! I will never forget this simple but delicious meal! The boys were a bit more adventurous and had a Barby!</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/limabbq.jpg" /></p><p align="left"><br />
Early the day we were on the road again taking an early afternoon flight via Sao Paulo again, back in Brazil again and on down to Iguassu Falls. As we lost 3 hours, by the time we arrived at our unbelievably posh hotel, and settled in in was 2am local time. We slept like logs and somewhat reluctantly emerged bleary eyed at 8am for breakfast.</p>

<p>We were driven over the Argentinean border, and could not help but notice how far less friendly and smiley the feel of the place was compared to Brazil and Peru. Our Guide explained that this was what this Spanish people were like. In fact for many years they considered themselves to be superior to the rest of South America, and not a third world country, which made the economic errors made by the government, which wiped out their economy even harder to swallow. The skeletons of unfinished hotels are a testimony to this. Now you have got a 3rd world country with a chip of it’s shoulders. As you arrive at the border, there is a big sign declaring that “The Maldines (Falklands) belong to Argentina”. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/falklandssign.jpg" /></p><p align="left"><br />
We arrived at the entrance to Iguassu Falls, and found our way onto a little open-air train with disabled friendly little carriages. We were lucky with the weather again. It was gloriously sunny, but incredibly hot (36 degrees Celcius). I felt like I was dieing with the humidity, exhaustion and the cold I had developed. How was I going to get through this day?</p>

<p>I was transferred to a three wheeled, heavy-duty wheelchair and then found myself being pushed for 1 KM along a bumpy metal bridge which was to take us right up to the Falls. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylviechairiguassu.jpg" /></p><p align="left">As we got close I shut my eyes, was wheeled right up to a railing, I stood up, and the on the count of three opened my eyes.</p>

<p>The view rendered me totally speechless. I stared in disbelief at the hugest and magnificent of waterfalls. Then suddenly, without warning, the wind blew over our way and the spray from the Falls and drenched us- the RELIEF from the heat was indescribable. Everyone was screaming!</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylvieiguassurelief.jpg" /></p><p align="center">This was the most AMAZING MOMENT OF MY LIFE TO DATE!!! </p><p align="left">Without the hell of the humidity I could never have experienced the HEAVEN in that moment, which I will never forget. It encapsulats the essence what this whole trip was like for me, in that the impact, intensity, magic of the HIGHS I experienced, were only magnified and strengthened by the LOWS, the difficulties, challenges, illness, and pain I had to go through in order to gain them. In an instant my exhaustion and fatigue was gone and even my cold felt insignificant.</p>

<p>We travelled onto different vantage points to view the Falls just as glorious but in different ways. In the afternoon we ate in a local Arabic cafe. Once again the humidity was killing me. I took of my dress in the toilets, soaked it under the tap and then put it on again, to gain some relief. Finally we took a helicopter flight right over the Falls. Though only a 12 min flight (for about £30), it was worth it for the incredible views of the whole of the vast, powerful, wondrous, Iguassu Falls. We got some money shots that day!</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/iguassu4.jpg" /></p><p align="left"><br />
Back at the hotel around teatime, after a 20 min powernap, we went out into the sunshine to enjoy the large swimming pool filled with “health-giving” thermal waters. Much to our amazement, here we met a fellow Sheffield Wednesday fan, with his Brazilian wife, thanks to the Wednesday shorts Matthew was wearing that day!</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/shefwedfanspool.jpg" /></p><p align="left"></p>

<p>I finished the BEST DAY OF MY LIFE, with a luxurious, 1 -hour, full-body massage, which was a real treat that I richly deserved. It cost just £10. I floated back to my room, wearing my posh, white, hotel bathrobe, feeling very pampered, rich and privileged, a surreal feeling, and went to bed. I awoke the next morning totally refreshed and actually ready for breakfast for once!</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylviehotelbathrobe.jpg" /></p><p align="left"></p>

<p>Before we flew back to Rio that day, we visited Iguassu Falls, this time from the Brazilian side, which is, believe me, just as beautiful. Though a mistier day, the sights to behold were still magnificent. The final vantage point took us right up close to the Falls. As you watched the Falls close up nature only goes and improves on. You see swallows fly directly through the spray to their nests on the rocks behind, obviously a safe-haven from predators (and with plenty to drink too). Isn’t it wondrous how animals adapt to their surroundings.</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/iguassumattsylsteve.jpg" /></p><p align="left"></p>

<p>That afternoon we flew back to Rio, arriving in mid-afternoon, in time to catch a few more rays of sunshine on the beach, and to go for a quick swim. It was a relief to be back to more familiar surroundings, the hotel we now called home, and a place where there was good amounts of oxygen, little smog, and a more bearable humidity! Above all a place we could rest and relax and explore at a far slower pace for another 4 nights.</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/stevejesus.jpg" /></p><p align="left"></p><p align="center">Steve thinks he is Jesus!!!</p><p align="left">Steve and Matthew enjoyed the views of beautiful Brazilian women’s figures on the beach too! for the next few days! They have curves in all the right places (no doubt this has something to do with their diet, which contains lots of fruit and vegetables).</p>

<p>We took another flight in a helicopter the next day, this time close up to and around Jesus which was pretty scary. The views of Rio, Christ, Sugarloaf, Copa Beach and the mountains were fantastic.</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/copabeachairview.jpg" /></p><p align="left"><br />
I was very impressed with three disabled people in Rio. One was a limping chap selling Cokes and Water around the markets on the beach front. Steve bought a drink off him. This lad became Steve’s hero, and he impersonates his penetrating cries of “Coca, Agua” to this day.</p>

<p>The second one was the disabled man, selling fruit and veg, who seeing me on my mobility scooter waved me to stop and offered me a piece of pineapple to taste. I tried to give him a little bit of money and ended up buying a pineapple which was delicious.</p>

<p>The third once was a heavily disabled man sat on the streets, who could have no doubt made a reasonable got a reasonable living from begging. However, he did not. Instead he sat there doing drawings of fish to sell on the streets of Rio. Total respect!!! I bought one for £3 (15 Sols). That man had a smile on his face and was COURAGE PERSONIFIED.</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/disabledartist.jpg" /></p><p align="left"></p>

<p>There were sunny and cloudy times during the last few days, and one day, we were on the beach and saw storm-clouds rolling in before our eyes. It was an mesmerising sight. Then the next minute the storm was upon. It honked it down and everyone fled for cover!</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/copastormfront.jpg" /></p><p align="left"><br />
There was one final challenge for me to meet the night we left. After American Airlines kept us on the flight from 11 am till 4 am with no food or drink, they announced to us that the plane was in fact safe to fly and always had been, but they were out of time and the flight had been cancelled! So we all had to disembark after 5 hours on a plane having gone no where. American Airlines are usually very good, but in this case they handled the entire situation very badly. In a way all this was water of a ducks back to me by now, but I could have really done without the ordeal. By 6.30 am we were checked into another very posh hotel and we managed to get a few hours kip. We emerged around midday and spent rest of day by the pool in a daze but the sun was shining at least and they fed us very well. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylviehammock.jpg" /></p><p align="left">We flew out again that night, only this time we actually got off the ground and the whole flight slept like the dead!</p>

<p>I am now lucky enough to be spending another three weeks in the Florida Keys, a much needed rest after such a MONUMENTAL trip. How do I feel now having survived the trip? I have to admit the whole trip has caught up with me. The combination of the effects of having taken anti-biotics, and all the sweet fruit I ate at the hotel breakfast, have caused me to end up with thrush and have been feeling rather shaky, so I know that have some work to do in eliminating candida to re-establish my gut health to ensure stability with ms. But all that can be done, and I can live with these consequences. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylvstevehotelroof.jpg" /></p><p align="center">Babe on hotel roof. Who is that nutter behind me?</p>

<p>One of the best things bout this trip was the fact that took the focus of MS for once. I simply had no time to think or worry about it, I just got on with it, managed it and dealt with it. That was a real break from my usual way of thinking and living and I think that sometimes we all need to have that, BREAK SOME RULES, LIVE LIFE TO THE FULL, OVERCOME OBSTACLES and up to a point for a short time TO HELL WITH THE CONSEQUENCES.</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylviecopa4.jpg" /></p><p align="left"><br />
That is not to say that I didn’t have a plan as to how I could manage and cope even in the worst case scenarios. (I took anti-biotics, probiotics, vitamins, my pipinette pot, nappies, pads, catheters and mobility equipment with me. I make sure I’d had necessary vaccinations and a holiday insurance which covered me for MS). And things did go wrong but we adapted and coped. I took the anti-biotics. I used my mobility scooter far less and my wheelchair far more, when the charger popped in Peru. I threw a wobbly when I found I’d left my Pipinette pot in the Arabic cafe in Iguassu, but then I got over it, and we made a temporary one out of a plastic bottle. </p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/sylviestevesandcastle.jpg" /></p><p align="left"><br />
Of course you can’t plan for everything, however and a certain amount had to be left to FATE and FAITH. Taking this trip took real GUTS and DETERMINATION but in going on this have gained the most amazing memories, experiences, photos and video, to treasure for the rest of my life. On the day I die, I am sure that I will look and be glad I dared to take this TRIP OF A LIFETIME!</p><p align="center"><img src="http://www.fairprice-mobility-scooters.co.uk/photos/rottytinynickiexhaust.jpg" /></p><p align="left">Rotty the Rotweiler and tiny Nicki Money somewhat tired after the trip. This is how we felt too!!!</p><p align="left"></p><p></p><br />
</p>]]>

</content>
</entry>
<entry>
<title>My crazy Treadmill Marathon Challenge</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2004/07/my_crazy_treadmill_marathon_challenge.html" />
<modified>2005-12-01T11:43:55Z</modified>
<issued>2004-07-03T22:27:51Z</issued>
<id>tag:www.healthdiaries.com,2004:/ms/sylvie//70.1190</id>
<created>2004-07-03T22:27:51Z</created>
<summary type="text/plain">I started going to the newly opened Gym close by a few months a go. I&apos;m so lucky because I live close to this Healthy Living centre, which is a project that is developing and has some brilliant services to...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>I started going to the newly opened Gym close by a few months a go. I'm so lucky because I live close to this Healthy Living centre, which is a project that is developing and has some brilliant services to offer me, the pool, the Aquagym, and the actual GYM! </p>

<p><img src="http://www.healthdiaries.com/aquasylvie.jpg" /> </p>

<p>Sylvie on the Aquagym </p>

<p>Even better than this, I got referred to the Healthy Living Centre by my G.P., so that I can go whenever I like for a whole 6 months for free (so no excuse!), and, even better than that, I am given one to one help in the Gym. It's like having a personal trainer! Wow! </p>

<p>It didn't take me long to get into using the exercise machines, and on the first day I even found myself walking at a slow pace on a treadmill. I could not believe it. </p>

<p>Now the MSRC (<a href="http://www.msrc.co.uk">www.msrc.co.uk</a>)have been encouraging everyone with MS to set themselves their own personal marathon challenges! Not everyone with MS has the ability to run 26.2 miles (or even without MS!). But rather than feel sorry for ourselves, the MSRC are saying DO 26.2 OF SOMETHING THAT YOU CAN DO, BUT THAT WILL BE A CHALLENGE TO YOU! <br />
You can read more about this idea by <a href="http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=890&amp;CFID=1091232&CFTOKEN=78913685">Clicking Here</a>. </p>

<p>So, of course, this got me thinking as to what I could do, to not only challenge and push myself, but also to raise much-needed funds for the MSRC. </p>

<p>I decided to attempt walking on a treadmill for 26.2 minutes, and preferably without a single break! </p>

<p>To be honest with you, I have no idea whether this was achievable. Bear in mind I only did 3 minutes on my first try! </p>

<p>So each week I tried to build up the time I could manage. I soon realised that I had set the speed too fast at 0.7 mph, and it was the equivalent of climbing Mount Everest trying to walk for 26.2 mins none-stop, so I had to compromise and slow it down just a little. </p>

<p>On my third attempt though, at the slightly slower speed, I achieved my dream of walking for the 26.2 minutes without a break, and it was an amazing feeling to see the 26.2 mins pass on the clock. It was a relief too, because by then, I'd managed to get over 1 200 in sponsorship!!! </p>

<p><img src="http://www.healthdiaries.com/sylvietreadmill.jpg" /> </p>

<p>Sylvie on the treadmill </p>

<p>That amount exceeded my wildest dreams, and I'd just like to thank everyone who sponsored me again. You helped me to get there, and the MSRC will put every penny to good use, believe me!&nbsp; </p>

<p>My grande total is no &pound;2 227.57! Now, that is what I call remarkable!</p>

<p>Till next time </p>

<p>Hugs &amp; Smiles </p>

<p>Sylvie x</p>]]>

</content>
</entry>
<entry>
<title>Life After MS</title>
<link rel="alternate" type="text/html" href="http://www.healthdiaries.com/ms/sylvie/archives/2004/06/life_after_ms.html" />
<modified>2005-12-01T11:43:55Z</modified>
<issued>2004-06-16T10:05:55Z</issued>
<id>tag:www.healthdiaries.com,2004:/ms/sylvie//70.1191</id>
<created>2004-06-16T10:05:55Z</created>
<summary type="text/plain">Reach for the Skies How Sylvie&apos;s skydive for MS changed her life and brought her love. Sylvia Brown, 32, started with symptoms of MS in 1994. Now 11 years later having discovered many ways of living with MS she now...</summary>
<author>
<name>Sylvie</name>
<url>sylvia.m.brown@blueyonder.co.uk</url>

</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.healthdiaries.com/ms/sylvie/">
<![CDATA[<p>Reach for the Skies<br />
   <br />
How Sylvie's skydive for MS changed her life and brought her love. </p>

<p>Sylvia Brown, 32, started with symptoms of MS in 1994. Now 11 years later having discovered many ways of living with MS she now runs GYMS (a Group for Young MSers) in Sheffield, in order to convey the message to people with MS that you don't have to be a Victim to this disease. Here is my Story: </p>

<p>When I was diagnosed with MS I was very frightened. I thought I would soon be confined to a wheelchair and that my life would be over. I tried my best to get on with my life but the MS was always there, progressing, and whispering to me, 'You are living on borrowed time you know! By 24 my mobility began to visibly deteriorate. I could no longer hide the MS, so I decided to tell the world by jumping out of an airplane at 13 000 ft! </p>

<p><img src="http://www.healthdiaries.com/skyd.jpg" /></p>

<p>Pic: Photo of Sylvie Skydiving!</p>

<p>My tandem skydive for MS made front page news and raised &pound;2000 for MS Charities. Everyone said I was really brave but to me brave was getting up in the morning and facing the world with MS! Looking back I see my tandem skydive as a turning point. I response I got from the people of Sheffield gave me the hope and courage to fight on. Six months after my jump however, finding myself wheelchair bound and in free-fall decline I knew that I had to start trying to Take Control of MS myself. </p>

<p>I logged onto the internet and talked with MSers from all over the world. It was wonderful, suddenly I was no longer alone! Immediately I started changing my life! I went to see a good Nutrition Consultant, and he started me on the MS Diet, based on white meat, fish, fruit and vegetables and vitamin supplements, in particular D3, to try to stabilise my progressive condition. I felt like I had nothing to lose by trying and only my life to gain. </p>

<p>Since this time 5 and a half years a go there have been good times and bad times with the MS but overall the MS has not progressed at all. I am gaining in strength and can even walk short distances. After a relapse I bounce back and recover naturally so although I still have MS, it is a lot more stable and I no longer live with the fear of MS. </p>

<p>As times goes by I am improving in my health, energy levels and functionality and though it is a long road to Recovery I am gradually achieving more and more and reclaiming more and more independance and reclaiming control over different aspects of my life again, hey I'm even planning my way back to work, through various opportunities working from home. Now that will be another real leap of faith! My tandem skydive has even lead me to finding my Mr. Right, well Mr wRight actually. </p>

<p>Through the skydive publicity I made friends with former pop-star from ABC, Stephen Singleton! Stephen really helped me get my life back on track by taking me swimming every week ever since! When I decided I wanted to purchase a mobility scooter he introduced me to his Uncle, Steve Wright, who runs 'Fair Price Mobility', and this lead to romance! </p>

<p><img src="http://www.healthdiaries.com/stevesylviesteve.jpg" /></p>

<p>Pic: Stephen Singleton (left) with Sylvie and Steve Wright (right), the Scooterman</p>

<p>Yes, I bought the scooter and got the scooter man too! We are a good team and I am really proud of Steve because he is a genuine, honest man who makes sure disabled people get a fair deal by refusing to make huge profits on the scooters he sells. He really looks after his Customers! </p>

<p><img src="http://www.healthdiaries.com/sylvieflyingpast.jpg" /></p>

<p>Pic: Sylvie flying by on her beloved mcooter</p>

<p>Fair Price Mobility:<br />
<a href="http://www.fairprice-mobility-scooters.co.uk ">http://www.fairprice-mobility-scooters.co.uk </a></p>

<p>The icing on the cake have been out trips out to the sunny Florida Keys with Steve, swimming with dolphins and this year I plan to try scuba diving, after all LIFE IS FOR LIVING! The sunshine is the best medicine for MS in the world! </p>

<p><img src="http://www.healthdiaries.com/sylviesteveforest.jpg" /></p>

<p>Pic: Steve & Sylvie in the Everglades, Florida.</p>

<p>Steve is a real man. He is also rather a nutter. He has three classic Cars, a 1959 Thunderbird. a 1958 Edsel and a 1960 Buick Electra Convertible, soon to be shipped to the UK. It is mad a great fun driving around in these cars and we can't wait for the Buick to arrive from the States </p>

<p><img src="http://www.healthdiaries.com/stevebirds.jpg" /></p>

<p>Pic: Steve with his two Birds!</p>

<p>You can see photos of Steve's Classic cars here:<br />
<a href="http://www.floridakeys-rentals.com/contact.htm">Steve's Classic Cars</a> </p>

<p>My Thoughts on MS & Diet</p>

<p>Without the MS Diet I dread to think what my life would have been like, had MS continued to progress at such a rate. There is overwhelming anecdotal evidence to show that your diet plays a crucial role in MS. Many people with MS like me, who radically change their diet see results. Your condition gradually improves. Many doctors have seen this for themselves. </p>

<p>When you study the epidemiology of MS it all adds up and even the scientific theory behind it is frighteningly plausible. I simply cannot believe that all this evidence can be so blatantly ignored. This Research Avenue has been neglected far too long and it is people like myself with MS who are paying the price! Doctors don't recommend diet for their MS patients because there is not enough scientific proof. </p>

<p>Nearly all the research on MS has been on expensive drugs that could net a good profit for the drug companies. There is no money to be made from research on diet So the MS Diet Group has launched a campaign to urge the government to take control of research into diet and MS. We see diet as a realistic, cheap and effective treatment for MS. It's our best hope for MS. </p>

<p>Details of the diet and research on which it is based can be found on the Group's website (<a href="http://www.ms-diet.net">http://www.ms-diet.net</a>). You can also read Dr. Ashton Embry's extensive and fastinating work in this field at www.direct-ms.org. I have also set up a petition in support of the Campaign to get vital Research carried out in the field of 'MS and Diet', which already has well over 500 signatures: <a href="http://www.thepetitionsite.com/takeaction/747307120">http://www.thepetitionsite.com/takeaction/747307120</a>  </p>

<p>My message to people with MS is there really is so much you can do to change your life and Help Yourself. The supplemented MS Diet is crucial, by changing your diet, alongside exercising, avoiding stress, laughing, loving or even leaping out of airplanes! I am living proof! You just have to be prepared to search and search, discover what works for you and make whatever lifestyle changes are necessary. Do whatever it takes and above all Never Give Up! </p>

<p>-----------------------------------------------------------------<br />
Another mad Venture</p>

<p>I recently achieved another ambition! I did an Abseil off the Bristol Hotel in Sheffield on the 21st of July 2002. It was Awesome and my disability didn't stop me. I raised &pound;1300 and the other five in the "Great Sheffield Abseil" Team raised at least another &pound;500. The event was organised through Skyline.</p>

<p><img src="http://www.healthdiaries.com/sylviebrown2.jpg" /></p>

<p>-----------------------------------------------------------------</p>

<p>Update: In 2003 I managed to complete my real-life Abseil! This was accomplishing my Goal of working for a living! This has been a massive leap of faith, and a goal I've been striving for for quite some time! I knew that I'd make it I just wasn't sure how or when! </p>

<p>Choosing to do this is certainly not the easy path. That would have been to stay on income support in the security of my little bungalow! But I wanted to move forward with my life in spite of the risks to my security and health. And when the time was right I knew I had to follow my heart and go for it!</p>

<p>But life was pushing me in that direction anyway. I'd put my partner Steve on the internet selling mobility scooters and the business had really taken off, surpassing all our expectations! I ended up doubling his sales. Now there is a lesson in the importance in not judging a book by it's cover! Many people think it is wonderful the way Steve has 'taken me on', and yet it in reality it is pretty wonderful for the both of us! Steve has never looked at our relationship in this way anyway and now he is reaping the rewards.</p>

<p>I've learnt html from scratch and gained various webdesign qualifications over the last few years, and now here I am now running two internet businesses and have a part-time job! I have successfully rented Steve's Unit in the Florida Keys out for him through the internet for most of the year. This year (2004). I have now launched a third business, a webpage selling Stairlifts:<br />
<a href="http://www.discount-stairlifts.co.uk ">http://www.discount-stairlifts.co.uk </a></p>

<p>However, what finally enabled me to take this leap of faith was moving into a lovely house, which Steve and I have bought together. We have set up the house so that I can manage independantly (stairlift, grab rails, scooter etc) and I am so happy here. The house is in the ideal location for me (just down the road from my bungalow) and we even have a palm tree in the garden (our mini florida!). Although it was a risk my heart told me that this way the right thing to do! And because we don't have a mortgage the goal of earning enough money to live of became achieveable.</p>

<p>So that is why, with the move I came off benefits. I am now self-employed and have a part-time job working on this webpage for the MSRC! My greatest problem is overdoing things. I tend to work too long on the computer and that does take it toll! But it is all so worthwhile. </p>

<p>When I look back it is sometimes hard to believe just how far I have come. I have gone from 20 hours care a week on income support for incapacity to total independance both physically and financially! It has taken me 6 years and fate has played a big role in how it all developed and became possible but at the end of the day I'm the one who made it all happen! </p>

<p>The crazy thing is I'm doing all this in spite of the fact that I do not have my full health. I do get very tired, have limited mobility and have to dash to the toilet a lot, but I'm not letting any of that stop me. My greatest lesson yet though is to really learn how to pace myself!</p>

<p>Thankfully though our Winter vacations in the Florida Keys keep getting longer and longer! This year we were over in the States for a full 8 weeks! The break, sunshine and daily swimming did me a power of good, and getting away gives you a good perspective on things!</p>

<p>This year we even went on a two week trip starting in Las Vegas and travelling  2 000 miles around the Grande Canyon and all it's neighbouring canyons in a Campervan! Although a challenge I wasn't nervous about this Venture at all and it turned out to be the trip of a lifetime! Now that was what I'd call living life to the full! I really am a very lucky lady!</p>

<p>Sylvie has written all about her experiences on her Webpage Life After MS: <a href="http://www.lifeafterms.com" target="_blank">http://www.lifeafterms.com</a></p>]]>

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