Monday, 28 April 2014

My MS Life speech about Pregnancy and MS

On Saturday I had the privilege of speaking at the MS Society's biggest information conference for people with MS - MS Life in Manchester. It was a very positive experience and one which I hoped would allieve some of the fears others with MS might have about having children after a diagnosis. I've had some lovely feedback since so here's the speech for anyone who wasn't there. At the conference I then answered some questions so if you have any please do ask away!


I know we're here to talk about pregnancy and MS but I think it might help if I gave some of my background too. I was diagnosed five years ago, just weeks before I turned 27.
My boyfriend had proposed six months earlier and, now my fiancĂ©, together were planning our wedding which was organised for a year later. 
I knew about MS. In my job as a journalist I had covered MS Week countless times and met many people affected by it. But it wasn't on my radar.
I had been feeling out of sorts, collapsed a few times, ran to the bathroom at every opportunity ... But I never thought they were all linked. 
So it was a huge shock to be diagnosed but I also felt a strange sense of relief because at least now I could get help and there was a label for my problems.
That first year I spent time coming to terms with the diagnosis, I told my family and friends and got strength from their support. I constantly told anyone who would listen that MS would not get the better of me.
My wedding was a welcome distraction. There was too much to do to be worried about MS. But then just weeks before the big day, in between my hen do and final dress fittings, I had an appointment with the neurologist.
He was fairly blunt. My MRI had shown a significant increase in lesions, starting a Disease Modifying Therapy was not an option but instead something I needed to start immediately.
Then he declared, but if you want kids you can't be on DMDs while trying to conceive or during the pregnancy. 
Basically we had a choice, babies or DMDs.
Our wedding was four weeks away. Our whole lives ahead of us. And we wanted a family. The question now was when? 
My husband and I didn't rush home to read the information or go on the MS Society forums, instead we made the decision based on what we wanted to do, just like any other couple.
I didn't want MS to cloud our judgement.
Thankfully, it didn't and on our return from our honeymoon in the Far East I was already pregnant.
Charlotte was born in November 2010 and her sister Lucy was born in July last year.
It's sometimes hard to believe that five years after that diagnosis I am a wife and a mum of two. Having my girls will always be the best decision I have ever made.

But I would be lying if I said MS didn't impact on my life or my pregnancies and labours.
Generally people with MS are told that you can feel much better during pregnancy, with the chance of relapse increasing after the birth. 
With Charlotte I didn't relapse during pregnancy but I had had some sensory issues in the run-up to my wedding and they got slightly worse rather than better, but I learnt to live with them. 
My labour was fairly straightforward and I was able to give birth naturally.
I had a support team in the form of my husband, mum and extended family. That's essential, but I would say that to any new mum not just a mum with MS.
But I did have a mild relapse in those early months, my legs constantly felt heavy, and the pain in my feet made them very sore to walk on.
And the DMDs loomed in my mind - just four months after having Charlotte I started Rebif.
In 2012 I had two relapses in quick succession and they worried me like they hadn't before. I wanted more children and I worried that if I left it too long then relapses may start to impact on my life too much and I would put off having any more. 
So my husband and I decided to try for baby number two.
And on Charlotte's second birthday I was delighted to tell our family that our second was on the way. Lucy's pregnancy went well. I felt great MS wise and it was merely the normal pregnancy aches and pains that bothered me, tiredness, sickness, nausea, sciatica. 
Again my labour went ok. Unfortunately I had to have an emergency c-section but that had nothing to do with MS. My midwives knew I had it but it wasn't a major concern as I was on my feet and had no mobility issues.
Lucy is now almost 10 months old and I have been back on a DMD, this time Copaxone, since last October. I haven't had a significant relapse since 2012 and medication is keeping the nerve pain at bay and controlling my bladder issues. 

People ask if it was a difficult decision to have my children knowing I had MS, and honestly, the answer is no. Yes, I know that MS is unpredictable and I do not know what lies ahead, but does anybody think ahead when they have a family? Of course not, you live for the here and now. I'm biased but my girls are amazing, and I cannot imagine my life without them. There are days when it's tough going and two under the age of four is hard work. But that's the case for every mum, not just me. 

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