Wednesday 30 May 2012

see the canyons broken by cloud...

It's World MS Day today.

World MS Day (WMSD) is the only global awareness raising campaign for Multiple Sclerosis (MS). Every year, the MS movement comes together to provide the public with information about MS and how it affects the lives of more than two million people around the world....including me.

WMSD was launched in 2009 with over 200 events in 67 countries and has continued to grow every year. Last year saw activities taking place in more than 73 countries worldwide. WMSD 2012 is built around the "1000 Faces of MS" concept, which puts people with MS at the heart of their campaign to raise awareness of MS and the challenges facing people who have it.

1000 Faces of MS was created to bring together stories, messages and support for people living with and affected by MS. It is an opportunity for people to tell their story, to share it with strangers, as well as friends, and to join the global movement of people working to raise awareness of the disease.

Well, I hope that in a small way, this blog has helped to raise your awareness of MS and what it means to at least one person who has it: me.

MS has changed my life.  I'm one of the 'lucky' ones: in the seven years since I first developed symptoms, it hasn't changed my life as much as it might have; as much as it does for other people.  But nonetheless my life has changed.  The most obvious change is that I have to inject myself in the muscle of my thigh once a week, the six monthly blood tests and the visits to the neurologist, but it's changed me in subtler ways too.  I try not to let it get into my head, but I can't help but think about it.  Every niggle, every ache, every stumble.... could that be the MS or is it just an normal niggle? a normal ache? a normal stumble?  There's just no way of knowing.  Am I just tired because of a busy weekend or too much exercise, or am I MS tired? It's the elephant in the room.  It never goes away and it's never entirely out of my head.

I'm fairly sure it's changed the way that people look at me too.  I've not really made a point of advertising that I have MS, but neither is it a secret, and when people find out, their preconceptions often come out.  Goodness, don't I look well?  The only other person I know with MS is in a wheelchair and you're doing really well.  That kind of thing.  Hopefully, knowing me and knowing that I also have MS helps to challenge people's preconceptions, but it's still not very nice to have a label.  I know we all have them, but that seems to be mine.  It doesn't define me - it will only do that if I let it - but it's there.

By being reasonably open about my own MS, I've also discovered that quite a few people I know at work either have MS themselves or have someone in their lives affected by the condition.  It's much more common than you'd imagine.  My people are everywhere!

Anyway.  I don't expect that World MS day will change your life, but if it helps anyone become more aware of the condition and what it means, or if it shows someone suffering that they're not alone, then that makes it all worthwhile, doesn't it?

And here's that link to that brilliant, moving video again. 

If you do nothing else, please spend a few minutes of your life watching this again and remembering that MS affects people in a thousand different ways, and affects each person differently... but underneath it all, we're all still just normal people trying to get on with our lives as best as we can.

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