Sunday, 14 September 2014

A year down ...

It's hard to believe but this time last year I was just about to embark on my Copaxone journey.
It was one I faced with trepidation but also filled with hope.
Having already tried Rebif and Avonex I was very aware that Copaxone was sort of my last throw of the dice, and felt as though I really was putting all of my eggs in one basket.
Having to inject every night was always something I worried about but 12 months later I can honestly say it doesn't bother me anywhere near as much as I expected.
Yes, I still avoid my legs (they bruise too easily and the pain isn't great either!) and while I use my arms because it helps with rotating my injection sites, I still wince every time the needle pierces my skin.
Generally each injection is over within ten seconds.
I've even been known to take it with me to a restaurant, nip to the toilets and inject quickly before anyone even notices I've gone.
After all this time I still have days were I forget to take it, despite my alarm buzzing at 7.30pm. 
Sometimes it's the day after before the injection site annoys me, as they can get incredibly itchy. Which isn't a great look at work as I surreptitiously try to scratch my stomach.
Talking of my stomach, it's my favourite place to inject. I'm (un)lucky enough to still have some baby weight lingering on my middle and as a result I hardy feel the needle going in.
I desperately want to lose my 'mum tum' but when my diet gets side-tracked I always console myself with the knowledge that my injections will at least not hurt so much.
But on the whole I've got used to it. 
I've probably only missed about 5 or 6 doses in a whole year so by my calculation that's 360 injections. Each one loaded with a medication I honestly believe is working for me.
I have no major side effects, especially compared to Rebif which left me groggy for half the week. 
Crucially I have had no significant relapse in the last year.
Don't get me wrong, I've had some exacerbation of old symptoms, and the fatigue and pain are things I am unlikely to ever live without. 
But NO relapses is a milestone to be celebrated. I'll take that. 

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!

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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 fiancé, 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. 

Friday, 25 April 2014

Stop and enjoy the moment

This blog is so desperately unloved that I'm going to pledge to write at least once a week for the next ten weeks ... the lack of posts over the last few months are very simple to explain - Charlotte and Lucy! I honestly never get two minutes. I knew two kids would be hard work but my goodness it's ten times harder than I expected! 


Having Lucy has definitely been one of my best decisions in life. She is a ray of sunshine and her big sister adores her. I worried before I had her that Charlotte might be jealous, but that definitely hasn't been the case. If anything she is over protective. 

MS wise things have been quiet and that also accounts for my lack of updates. I always live life to the max when I'm well and that often means that I burn myself out during the day and then when night-time and my regular blogging time arrives, I'm fit for nothing. I don't regret that for one minute. MS is so unpredictable that I always grab the good days with both hands and treasure them. 

I've loved being well for Lucy's start in life, there's nothing better than being able to bath your own baby, to skip around the garden with your children, to organise and run a home without any major help. They are all things many take for granted but over the last ten months I have found myself stopping and taking in the joy around me, stamping the memories into my mind and being grateful for the chance the enjoy them. 

There have been days when I've begged for just half an hour of peace, but I always stop myself from feeling sorry for myself and remembered that my children will not be young for long and I may not always be well to enjoy them. 

That said, I'm currently sitting in an airport, on my way to MS Life - a conference organised by the MS Society - and I'll be away for three whole days. It's going to be busy as I'm also squeezing in a visit to an old uni friend who I haven't seen in years, as well as meeting my nephew William for the first time - and I'm truly relishing the thought of not being woken at 6.30am for a few mornings! I'm giving a talk at the conference about Pregnancy and MS so I'm slightly nervous but looking forward to telling others with MS that having a family is very much a possibility. I'll post my speech here next week so anybody who doesn't catch me there can read it here.

Until next week ... look after yourself, be kind to others and live life as if today is your last. As always, I appreciate your comments and I'm on twitter too - @catdoran