I’m currently 18 weeks pregnant and couldn’t be happier. Now I’m in my second trimester I feel better than I have in years!
However, I didn’t actually have the best start to my pregnancy due to quite a severe relapse of my MS. I wanted to share what happened as I felt quite alone during that time. After speaking to other women with MS and doing some Googling I found that most of them seemed to feel much better and/or stopped relapsing when they fell pregnant. This made me feel awful. I was obviously very happy for them but literally the day I fell pregnant, I relapsed.
If you have MS and you’re pregnant or thinking of starting a family, this blog post is here to give you hope, reassurance and comfort. I don’t want to scare you or make you have doubts. Even in the darkest times everything will be okay and you will come out the other side. I’m proof of that.
MS differs vastly from person to person, so it goes without saying that every pregnant woman with MS has a very different experience. So here is my experience during my first trimester…
My first trimester
Well, what a horrible (understatement) few months that was!
After my last blog post about Staying Positive with MS while I was having a relapse, the first I’d had in years, things took a turn for the worse and I had another, more extreme relapse. However, I also found out I was about 4 weeks pregnant! I’m pretty sure this is the definition of ‘bittersweet’.
Did conceiving cause the relapses? Like most things with MS we’ll never know for sure, but my consultant does think that this is the case. I came off my MS medication (Tecfidera) back in March so it had a few months to get out my system before we started trying for a baby. It seems that this then caused my immune system to drop and getting pregnant made it drop even further. Therefore my body saw an opportunity to start attacking itself (that’s what MS does) which resulted in the relapses.
Three weeks after my first relapse began I finally started to feel better and I was delighted! On Friday I was looking forward to heading back to work the following Monday, but on the Saturday something happened. I woke up and my right leg was completely dead and numb. It felt as if I’d been sleeping on a hard mattress and cut off the circulation, so I got up and walked around to try and get the feeling back. Instead of disappearing, this numbness gradually spread over both legs during the day. That night I tried to keep my chin up and got some much-needed sleep. On the Sunday morning I woke up and things had got even worse! I shared the following post on Instagram…
“I’m struggling to write this as my right hand is numb. Both legs are also numb and filled with constant pins and needles. The worst part is my abdomen, which is completely numb all over, as if I’ve had anaesthetic. So now I’m entering another week of rest and keeping everything crossed that my symptoms start to get better 🍀”
This extra week of rest turn into seven weeks signed off work. During this time I struggled to do anything, literally anything.
My daily routine
For weeks my daily routine would involve waking up and feeling horribly depressed that I had woken up and felt no different. I’d then lie in bed and watch morning TV (This Morning was a life saver) and contemplate trying to get up and get washed. At about 2pm I would finally crawl out of bed and run a bath as there was no way I could physically have a shower. I’d get in the bath and probably cry a bit. If it was a day I really had to wash my hair then I’d do this after putting it off for about an hour. Luckily we have a shower mixer tap on our bath, so I could wash it whilst in a sitting position. This was itself a huge challenge. If you can imagine trying to wash your hair with the thickest ski gloves on, that’s what it was like. Not to mention the crippling fatigue, weakness and other numbness in my body.
After this was done, I’d carefully pull myself out of the bath, put my PJs on and lie on the sofa watching a film until my husband would arrive home from work. Some days I had people come to visit me, which in a way I dreaded because I had no energy and looked and felt like crap. But the people who did come and see me were true friends and always left me with a full heart and feeling full of hope. So to all those wonderful friends and family, I honestly can’t thank you enough!
I’ve been through more than most in my life but this was definitely the worst and darkest time so far. This relapse was absolutely brutal and completely relentless. After weeks I was still no better and there wasn’t anything more my consultant could do to help. I was given a course of steroids for a week to try and speed up the recovery – these were cleared as safe to take by my MS consultant – but they didn’t seem to help me this time, like they have in the past. Rest was the only answer and all I could do was try and keep positive that I’d soon start to feel some improvement. I honestly couldn’t have got through that time if it wasn’t for the support from all my wonderful family and friends, and in particular my husband. Knowing I was pregnant, that there was a tiny baby rapidly growing inside me, against all the odds, was amazing but very surreal. I was almost too scared to believe that I was lucky enough to have fallen pregnant.
Looking back on my Instagram posts during this dark time still leaves me with a lump in my throat. I could burst out crying at the thought of what I went through. I know I have already started to try and block the memories of this time out of my mind so I knew it was important that I write down what happened so I can help others. I hate that MS did this to me and that it also affected my husband, family and friends. However, I feel stronger coming out the other side and I love my husband more than ever for looking after me with so much love and care.
Light at the end of the tunnel
I honestly wondered whether I would ever be able to type or write again. Whether I’d be able to touch and feel my husband’s hands, or even hold my baby when it arrived. Knowing I was pregnant kept me going but also made me very worried that my baby might be affected in some way. I since found out that none of what happened would affect him/her and I am now in my second trimester and baby is looking fine.
So if you are reading this and going through a relapse yourself, I know how you’re feeling. I won’t say “don’t worry” or “keep your chin up” because I don’t know how long it will take you to get better. All I will say is take each day/minute/second as it comes and just keep breathing. Allow your body to find the strength you never knew you had. You don’t have to do anything apart from keep your head above the water, even if it is only just, as you will survive this and you will get better. It might take weeks or months, and you might not get 100% better but you will get your life back. Let the people around you who love and care for you support you. Even if someone is a shoulder to cry on or you chat about something mundane for 20 minutes, these moments will all help you.
I’m still not fully recovered, I have some numbness in both hands and arms. When I look down I get an electric shock-like currents through my whole body, which makes me go numb for a minute or two. But I can cope with all of this and it will hopefully fade away completely in time. Now I’m just enjoying being pregnant and cannot wait until April when I’ll meet our precious little baby. The baby that together with its dad, gave me the strength to get through this dark time.