June 23, 2006

MS and Motherhood

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.

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.


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!


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!

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.


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!

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.

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.


Scan at 11.5 weeks

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!

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.

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.

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!


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!

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!

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!

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?


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!

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.

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.

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.

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!


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.

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.

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!

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.

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.

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.


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!

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!


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.


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!


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!


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.


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.


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!


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.


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.

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).


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!


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!


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.


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!


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!


Posted by Sylvie on June 23, 2006 4:18 AM


Another amazing chapter in your "Life After MS." It's a joy to see the happiness that has come from the challenges and struggles.

Thank you for giving others a real perspective and true inspiration.

God bless and xoxo....

What you have written is exactly what I needed being frustrated with the birth of my son Christopher. I thought I was the only MS mother and was alone in the struggle of picking him and all the other thngs. I know that I haven't been through as much as you have, but just knowing that it is still a blessing to be a mother even in the MS stuggle gives me hope that I will be able to do it. Thank you so much and I hope that God will continue to bless you and give you the strength that you need to continue, regardless of the MS.


I've just read your diary and it's moved me to tears. As a mum to two wonderful children I can't begin to imagine how you must be feeling - your bravery is really to be admired. I'd love to interview you as an inspiration to others (I'm a journalist). Would you mind speaking to me about your experiences for an article? Your little boy is truly beautiful.
Best regards,
Fiona Terry

Thanks PFI, Stephenie and Fiona,

Stephenie you are not alone!

Fiona, I'd be happy to talk to you. Drop me an email! I have not got your email so hope you get this! My email is:
webpage: www.livingwithms.co.uk/ms

Sylvie x

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