Kiss Goodbye to MS 2011

As it’s MS week (internationally it appears) Sass has asked me to write about life with MS.  (And to keep it under 1000 words, she knows her Mummy well…)

Let me introduce myself – my name is Louise and I was diagnosed with MS (the “relapsing remitting kind”) in 2005.  I live in Berkshire UK, just west of London.

I was diagnosed in 2005 at the age of 44 which is rather ancient, it’s a disease that usually strikes much younger people though looking back I had some weird stuff happening from my late 20s that was put down to other reasons.

It all started for me on a day in October 2004 when I had had one of those busy days – a long day at work and playing taxi to the teenagers, I also had my Dad staying with us so we had lots of days out and a trip to France planned.  I remember sitting at the dining room table chatting with my Dad enjoying a glass of red and a wedge of brie when I developed a really nasty headache and the side of my face went completely numb. (Like when you go to the dentist)  I delegated the rest of evening to husband and went off to bed.  The next morning headache was gone but face was still numb.

Now I generally like to give things a chance to fix themselves so chose to ignore my dead face and we all set off for Disneyland Paris.  A week later when my face was still dead I figured a trip to the GP was in order.  He ummmed & ahhhed decided it was a virus (that’s doctor speak for “I haven’t a clue) and told me to come back in a week if it didn’t get better.  I went back at the end of the week as by this time I had lost all the feeling in my left arm.

GP then figured a Neurologist visit and a set of MRI brain photos was a priority.  (Thank God – or actually my employer for private health insurance!)  Over the next few months of MRI scans, lumbar puncture, ultrasounds, heart monitors etc –they were searching for everything and anything.  (They discovered an interesting heart condition but that’s another story for another time).   By this point my face had sort of come good, never did get the feeling back in my left hand and I started falling over without the benefit of alcohol!  I was officially awarded the MS badge in July of 2005 – I can’t honestly say I was devastated by the news, the first MRI report suggested a brain tumour in a place they couldn’t go to, so ending up a bit disabled to me was way better than the alternative.

So that’s the history……I need to say now that everyone’s MS is different, it’s a complex beast.  I am lucky, it mostly just snaps at my heels – every now and again it lets me know it could take charge.  My Neurologist said to me that if I took to the sofa I would become “very ill very quickly” so my strategy has been to keep moving so it can’t catch up with me.  The “positive attitude” approach sounds trite but has worked for me!

I have had some disabling relapses – I lost the sight in my right eye (it can attack the optic nerve) for 9 months.  My left eye is “lazy” so that left me unable to read or drive.  I switched to audio books, and was chauffeured wherever I needed to go.  (I did miss being able to drift around indulging my favourite hobby – shopping unsupervised).  One eye specialist said it would never get better, another said it would.  My Neurologist said it was highly unusually for sight to return after such a time period – he says I am “complicated” I guess there are worse things to be.

How I live with MS is mostly in sheer denial!

• I refuse to worry about stuff that won’t happen (1 in four of us end up in a wheelchair, that means 3 in 4 of us won’t!)

• I don’t put off doing anything….. just in case…….  When my sight returned I bought my dream car, just in case I lose my sight again – better to have loved & lost…You can’t drive my gorgeous Jag convertible with the top down without smiling (no matter how much your legs are aching!)

• I work full time in a job I love – I am a management trainer and travel the UK, I haven’t taken a sick day since February 2007 (and that was for flu!)  When I am not travelling I work from my sofa which helps with energy levels.

• Hot weather turns me to mush so we don’t go to hot places in summer.

• My hands don’t work but that means I am officially banned from the washing up – it’s an ill wind….

• I don’t really dance anymore – I tend to fall over and get too hot….  unless it’s Dancing Queen of course then all bets are off!

• I am on medication that modifies my immune system.  There are new drugs on the horizon which are looking promising some of them tablets which will be way better than having to inject.

Some folk with the relapsing remitting kind have periods with no symptoms – I have stuff going on all the time – bits of me will be numb/in spasm /stiff & achy – but as long as my sense of humour is the last thing to go I will be just fine.

Thanks for reading my story – I know there are thousands with MS that are worse off than I am – we need to keep researching for more effective treatments and maybe one day – a cure

And if I ever end up in that wheelchair…….I am rolling straight to Jimmy Choo to buy the most fantastic shoes I never have to walk in!!

And Sass – under 1000 words!  (not including this sentence!)