May 18, 2008

Surviving ms and living my life!

It’s another 9 months on since I last updated my blog and this is due to having too many things to do, too little energy and coming down with too many colds and bugs, which wipe me out. It is scary as it is making ms worse but I am doing everything I can to try to boost my immune system and the rest I have to leave in the hands of fate!


Our beautiful boy!

Shortly after my last update I had an accident on my mobility scooter in town (trying to dash to Argos to buys Marcus a really cool Shaun the Sheep, which bleats and vibrates. I had Marcus on my lap and I took a curb/slope at the wrong angle in my haste and next minute I found I had turned the scooter over and broken my right thumb. Marcus was shaken but otherwise fine (as my right arm holds him pretty tight), and soon recovered after being fed Kelly babies and hugged by a nice lady. Every one was brilliant! A nurse passing by told me my thumb was broken (I was in shock at denial!) and an ambulance was called which Marcus thought was very exciting. My mobility scooter was taken to Shopmobility (thanks Shopmob!) and I ended up at the Northern General hospital with no mobility to speak of, and only my left arm, which is my shaky arm working to cope with Marcus. Thank God for nurses and the fact he is very cute. Steve had been called (thankfully he was on his mobile for once!) and came to the hospital to rescue me, well take Marcus of my one semi-functional hand anyway! After waiting ages and X-rays and my arm being put in a cast, many hours later I was allowed home. It was shocking to realise how dependent I had become on my right hand/arm to function.


Marcus with Shaun the Sheep, he took some getting but was worth it as he bleats when you press is nose and vibrates when you pull his tail!

I did manage a trip to town, however, a few days later to Argos to buy a Shaun the Sheep (pictured above), though it was scary on my scooter even without Marcus. I have become a far more careful and cautious scooter driver!

The day after this I had an operation to set the thumb back into a better position as it was a nasty fracture. That was on the Wednesday and on the Sunday we flew out to Florida as arranged thank goodness!!!

Steve was amazing in how he coped with both me and Marcus, as I wasn’t much use in terms of helping to care for Marcus at that time and I needed looking after myself. I could have stayed in England until my cast came off as I couldn’t swim anyway, but Steve didn’t want that bless him!


Marcus shocked!

Better to be poorly in the sunshine he reckoned and he was right. We went in the second week of October and it was way too hot over there to swim at that time anyway, so I didn’t miss out on swimming too much.


A beautiful pelican in the Florida Keys.

I depended on the air-conditioning for the first few weeks in order to survive, as it was very humid and you couldn’t go out for long. But I enjoyed my morning walks, well ‘scoots’ with Marcus around Venture Out, getting a good daily dose of vitamin D from the sunshine and just knocking about the Keys with my boys as it is paradise over there.


Marcus and myself outside our home in Venture Out in the Florida Keys. Marcus in his (rechargable battery-operated) car which we got from the Salvation Army for a few $'s.


An Osprey flying onto it's nest in the Florida Keys

Not coming down with colds and bugs like we do in England, was a break in itself believe me! As soon as my cast came off (5 weeks after the operation) I started swimming and though it wiped me out, it was very good for me!


Marcus and Daddy at Fantasy Fest, Keu west, Florida.

Life over there is a lot easier with Steve being around all the time and without coming down with all the nasty bugs, colds and viruses.


Marcus kissing birds in the local bar where there was a good band on, in which our good friend John North a Florida Keys builder plays!!


We enjoyed time with our baby boy, good healthy home-cooked meals, cable TV (Steve especially!), swimming, shopping, Key West (and Fantasy Fest!) and generally unwinding (especially for Steve) and getting better!


Marcus with 6 year old Taylor, who he calls' Baby', the girl next door who he fell in love with in the Florida Keys.

My good school-friend Jacqui Wilmshurst came out to visit us in the Keys for a week and we had a great time with her.


Marcus feeding Jacqui a 'SpongeBob' ice-cream

Marcus enjoyed meeting Santa in K-Mart.


Marcus's excitenent at seeing Santa!

I tried Acupuncture with Dr Becky because I’ve always wanted to try it. The first session had an effect as I felt awful afterwards and was even sick, so acupuncture definitely has an effect! I had 5 sessions in total and I can’t say I noticed it having much of a good effect (I am a challewnging case) but there is definitely something to it!


Marcus and Daddy with a large Fantasy Fest necklace on!

In December, Tigga flew out to the Florida Keys with her gorgeous boyfriend, Ben, and they looked after Marcus while Steve and I went on a wonderful trip around Mexico, a belated Honeymoon trip!

Mexico was wonderful. We went to Cancun, chichen itza (Mayan pyramids), Teotihuacan (astek pyramids), Mexico City and Acapulco.


Steve and I on Cancun beach where the breakers were amazing!


Chicken Itza




The Cliff-divers (nutters, and I thought I was mad!) at Acupulco! - look closely and spot the ccliff-diver diving off the cliff!

For once it wasn’t a trip with a mad schedule and many flights, thank goodness! We enjoyed lovely hotels, beautiful beaches at Cancun and Acapulco and it was the perfect Honeymoon. We enjoyed the beauty and serenity of the ancient pyramids and we took at tour around Mexico City ending up at the zoo, which we visited as it was free to get in! At Acapulco we saw the famous cliff divers as well! I then went for a massage on the beach, which was heavenly and then I got my hair-braided which made me feel very cool!


We got back to the Florida Keys late on December the 22nd and the next day when we got up we went to the pool in Venture Out to see our baby boy, Marcus, who was playing happily there with his Tigga and his Ben. The year before he had cried when he saw him again and panicked that Daddy was leaving again, but this time he simply said ‘Hello’. He had had too much fun with Tigga and Ben to have noticed we’d gone really. He’d only knocked on our bedroom door twice while we were gone and that was just to play! I had felt a lot more relaxed about leaving him this year too. As Steve said to Marcus, ‘Did you like your new Mum and Dad?’. ‘There’re a bit younger and faster that the old ones aren’t they!’.

Marcus got over his water phobia in the Florida Keys, so much so that he even waded into the sea on occasion with us!


Marcus with his Daddy and his Tigga in the sea at Key West beach

On Xmas day we went to Bahia Hondo beach. Tigga was missing Ben as he had flown back to Sheffield for Xmas with his family (how loyal is that!) but apart from Ben being missing we had a great day. It doesn’t really feel like Xmas though in all that sunshine (not that I expect any sympathy!).


Bahia Honda beach

On New Year’s Eve Tigga and I went parasailing, which was great fun and totally possible in spite of my disability! . You didn’t really need your legs as I was carried onto the boat by two strong instructors and then carried onto the parasailing chair, strapped into harness/seat and then we were off and away! It was a bit daunting when the balloon we were strapped to at the back of the boat rose up into the air but exciting too.


Up and up we rose, laughing and screaming a little. The view of the beach and the sea was beautiful. I did feel as though I might fall out of the harness because my legs did tip a bit more forward than Tigga’s due to my disability, but I knew in my rational mind that I was well strapped in and that this could not possibly happen, so I tried to relax and enjoy the ride. Tigga was there taking her arms off the straps and waving them around, far more daring than me. I only did that for a second or two!

And then they decided on the boat to lower the balloon down and dunk us in the water. It was a little cold and we screamed but quite refreshing on the whole as it was a warm sunny day, New Year’s Eve as it happens!

Then up we rose into the sky again and enjoyed the rest of the glide! I was so glad that I did it. It was an experience not to be missed and good value for $40. Tigga was lucky enough to have a second go because one of the instructors fancied her, but once was more than enough for me!


So you don’t need legs that work in order the parasail and I would recommend it to anyone disabled or otherwise. It is safe, great fun, and a bit scary but not too scary! Having myself done skydiving, abseiling and hand-gliding I do know scary but when it comes to challenging my disability and adventure’s I always say yes!

After this we enjoyed seeing the sunset at Mallory Square off Duval Street in Key West.


Mallory Square sunset at Key West.

The we spent new year with friends on our sun-deck at the front of our new florida room, which we’ve had built onto our Unit! There were fireworks a plenty going off all around and it was great fun! Even Marcus stayed up past midnight!

On January the 4th we took a trip up to Orlando, Disneyworld, via the Everglades, where we experienced another magical sunset.


Tigga and Marcus with an aligator!

We spent a few days up there and on the first day we swam with the Manatees, up at Crystal River, in the wild. This was an awesome experience! Manatees are beautiful, gentle, massive creatures, the elephants of the sea, and snorkeling with them and seeing them up close underwater was simply amazing!


Photo of a Manatee in the wild im Crystal River where we snorkelled with them!

Marcus stayed on the boat with a life-jacket on while we snorkeled. You had to be careful not to bump into a sleeping manatees when snorkeling as they were like huge rocks under the water, in the shape of a great big 2nd world war bomb! It was a wicked experience to swim with the gentle giants.

As if this experience wasn’ enough, that evening we spent at the Epcot Centre, where there are restaurants a plenty from many different countries of the world all around a lake. We ended up having fish and chips sat outside the English pub (in which the sign for the toilets says ‘Restrooms’ by the way! The firework display on the lake has to be seen to be believed. With a massive, lit-up, rolling globe and magnificent fireworks, it is just something else, an amazing experience, and Tigga’s jaw just dropped open when it all started! Marcus loved it too. Hekept exclaiming ‘works..ooooooooohhhhhhh’.

We spent the day after in sea-world stroking the string-rays (another very friendly sea creature, though thankfully they had had their stings removed so perfectly safe as well!), and feeding the dolphins and seeing the dolphin and killer whale display (and being splashed my Shamu the largest killer whale!).


Tigga feeding a dolphin.


Seaworld Manatees.

We also went on the incredible hulk roller coaster, to my horror and Tigga’s joy! (I had to go on it so Tigga didn’t have to queue up but to be honest I wanted to anyway, but I didn’t go on twice like Tigga the crazy girl!).


This photo says it all about my life! It's excruciating at times but I always do it and am living life to the full!

Tigga also had her hair-braided like mine! Marcus loved seeing all the fish, the dolphins, the manatees and even the sharks! His greatest joy, however, was when he saw a squirrel, which he calls ’Yeyow!’. He loves 'Yeyow' off Ice-Age you see, so to see a real life one was just beyond exciting!


Marcus with a 'Yeyow!' (Sqirrel) at Seaworld!

The next day we went to Universal Studios and enjoyed various shows as well as the Disney-characters parade and the laser and firework display on the lake at dusk, which was fantastic! Tigga even met her namesake, Tigger in the parade, but only to find he was an imposter, as he had a brown nose, and all good Tigger fans know that his nose is pink!


Marcus shaking hands with Winnie the Pooh!


Tigga with a brown-nosed Tigger (an imposter!)

The nest day we flew back from Orlando to Manchester, back to a very cold and rainy Sheffield!

In 2008 I have been focused on trying to build up my immune system, and so far not very successfully in spite of all my efforts, but I AM DETERMINED TO RIDE THROUGH THE STORM OF BUGS AND COLDS AND SURVIVE WITHOUT MS GETTING ANY WORSE!

I am now taking the drug Low Dose Naltrexone once again, which boosts the immune system so should help me! I Am also having regular Reflexology, which too should help and I love it anyway (thanks Cecile!), as well as Colonic Irrigation, which should also help! Finally I am having wheat-grass powder mixed in water daily along with a teaspoon of vitamin C powder, and I eat raw chopped garlic regularly (with avocado on rice cakes or gluten-free crackers).

Since coming back to England the new child-care arrangements have worked out really well (now that Tigga is away studying nursing at Leeds Uni, and working ridiculous hours on her placement!

A local Mum, Geraldine, Mother to two year old twins, Kashala (a girl) and Ky-mani (a boy) has Marcus two days a week and they allgo to the local baby groups. This is ideal as if I go, I’m the one most likely to pick up the colds and bugs, so this way I don’t have to go and Marcus still gets all the social benefits of going and is in contact with the bugs and colds so this helps him build up his immune system so when he starts nursery properly, when he is 3, it won’t be so bad. He also has a good routine with Geraldine, mealtimes with good healthy home-cooked food, sat around the table with the twins, and he has bonded with them well, so it is a lot like having siblings, (no bad thing for an only child!).


Marcus with his playmates the twins

Routine can be somewhat lacking at home, because of my special diet but I have learnt to LET GO a lot of how I feel things should be done. Because we don’t live in a ideal world, and yet Marcus is fine, happy, loved and a lucky little boy. He is a bit of a grazer when eating but this is quite normal for a two year old, and he does know what he is doing. He won’t over-eat any treats such as cake, chocolate or sweets. I don’t think most two year olds are designed to eat large meals and the food Marcus eats is good food, apple, pear, grated carrot, weetabix, naan bread, fruit loaf, strawberries, yogurt cheese and bread and butter with honey, amongst other things!

I am very diet aware and my diet is quite restricted and I don’t want to pass food paranoia on to Marcus. He eats everything in moderation and is starting to eat more now.

Potty training I’ve had to let go and we are waiting until Marcus indicates to us that he is ready (by pointing at the potty). It is frustrating because I know he is ready and could do it, now that he is 2 and a half, but I can’t actually do it myself, due to my disability. So we are encouraging him but it’snot really happenig just let.


Marcus wearing a wolly hat st Grandma and Grandads where he spends 1 day a week!

I believe that if the worst things in Marcus’s life are watching a little too much Television than he possibly should, and being a little slower than most with the toilet training, then so be it. There are far worse things in life. And he learns a vast amount for kiddies tv anyway. When he says something new, I often wonder where he learnt that new phrase and then I hear it on one of his videos, and realize!

His absolute favourite at the moment is Noddy, and his other favourites are Barney, Bob the Builder, Sean the Sheep, the Fimbles and Kipper the dog. He still likes the Teletubbies too though. He can countto10 (though he often forgets 6) and loves the alphabet too (we have many magnetic letters and numbers on the fridge, as well as alphabet and numbers jigsaws at Grandma and Grandad’s, which is very quick at doing now!).


Marcus with his jigsaws

Marcus is really starting to put words together now too, and he said his first sentence the other morning as well ‘I want to open the door!’ (and he really did want to!).

Recently we celebrated my Grandad's 80th Birthday, which was quite an occasion! We joined Dad at his church and then Steve cooked a lovelymeal, a ricenoodlestif-fry for us all up at my parent's house!


My Dad has had a difficult year because his leg blew up to three times it's usual size just before Xmas and he was in hospital. It has been a long-haulin getting back on his feet and recovering his mobility, but though he has had to give up driving he can now walk to thelocalshops and back! He is more forgetful and confused nowadays but it is simply old-age and he is doing well relatively (and it is all relative in my world!)

Great-Grandad (my Mum's father) is 97 and doing well. He lives alone still ad is very with it. He is doing amazingly well!

Most recently I have been to see a mercury-free dentist and had my one tiny mercury filling removed. I am most impressed by this dentist, Alan Moffatt, as he definitely seems to know what he is talking about. From kineasiololgy muscle testing he things that I have somehow got mercury in my brain, so I am now taking chorella to try to detoxify this (but it’s not easy once it is in the brain). I need the chorella to cross the blood-brain barrier in order to get it to remove the mercury but I don’t want anything else to cross it (that is why I take grape seed extract to strengthen it!). . He has also put me on two tinctures, one of which is for some bacteria and the other to strengthen the immune system, which he found (no surprise there) to be week. So this is my latest plan to improve my health. I don’t know how real it is but I have nothing to lose by trying!


Marcus the Easter Bunny

Marcus is out right now with three 19 year old student nurses, as Tigga is back in Sheffield, his No.1 Babysitter, having finished her nursing placement at Leeds Uni (and they work student nurses so hard it is insane!), so he is a very lucky and socialized little boy! Tigga is still devoted to him and sees him every chance she gets.

When Geraldine goes on holiday, I am still spoilt with childcare options as a lady called Noor, whose sister used to live next door, does child-minding now and Marcus loves being with her. He has also been looked after my a final year English student, who lives close by, Amy, and he loves her and especially going to Western Park museum with her. I went there with my Mum, Grandma, and Marcus, last weekend and it is a brilliant museum for children. I especially liked to wooly rhino in there and Snowy the Polar Bear!

I don’t take Marcus to town now unless I am meeting someone there, like my good friend, Henry, who is now 12 and a half and very good at chasing Marcus! Since I broke my thumb, I have realized it is just too much for me to handle Marcus alone as he is so heavy now and he also finds it hilarious to run off, so I have to be very careful now. I only take him short-distances on my knee on my scooter now, to the local library, the local park or St Bart’s church, which I like to go to now on a Sunday morning with Marcus. It helps Steve for me to be out of the house for a while so he can clean up and cook dinner etc., and it helps me as Marcus is very well entertained at church, with toys and jigsaws and other kids, and I also get a bit of Physio, as there are some good bars at church for me to stand by and stretch and bend holding, and even walk using on a good day!

Physically I am worse as my left arm and hand have become very shaky, the vision in my left eye is a bit bleary, and my mobility is close to zero, but considering what I am up against, it is not too surprising and once all the bugs and colds subside, I am hoping I will improve once again. Anyway, I don’t complain (though I could), because I know what a good life I have, and how lucky I am, so I focus on that!

The other thing that is happening is that we are buying the house next door, as an investment and to rent out. It just feels right to do this and the opportunity has arisen so we are doing it. Sometimes I don’t know why it is right to do something, but I know it is right and the reason becomes apparent later. A good example would be moving to this place from a perfectly good council bungalow, and coming off benefits. But now with Marcus coming along I just thank God I did. By taking the plunge and paying my taxes, I now qualify for incapacity benefit should I need it, and this has enabled me to marry Steve. On income support for incapacity marriage would have meant I would have lost all my income support, as it is a means-tested benefit. But incapacity benefit is non-means tested so I’d get this irrespective of the amount Steve is earning. Really I need to look at getting sickness benefit again, as my self-employed income has dropped a lot and I’m working a lot less than 15 hours a week and my health is not good at all but I am still doing ok and very lucky!

Marcus has at long last really bonded with me, because we do lovely things together. I love it when he yells ‘Mummy!’ from the other room very loudly, commanding me to come and see him, though it can be very tiring! He is a beautiful and very bright little boy and he is at a beautiful age so we are enjoying him, though not always of course, because he is two and a half and forever testing the boundaries.


Marcus asleep on Scooby Doo!

He doesn’t get away with much, however, as Steve is very firm in laying down the boundaries, and I think this has helped us is escaping the ‘terrible twos’. I have re-named the ‘at times tiresome but otherwise terrific twos!

Posted by Sylvie on May 18, 2008 2:29 PM



That was quite a post and was good reading thanks.
Have a good day.

I hesitate to write, because I have only had M.s for a year.. but I feel I must.
I see you have a lot of determination, as my mother did have..but as you know determination alone, with M.S is not enough.
I have M.S too, It has pretty much dominated my life.. I know what an important role nutrition plays, after already beating another auto immune disease, (arthritis.)
Please feel free to add me on facebook^_^

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