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Can’t stand up for falling down

Martin profile 4.jpgMSer, Blogger and Influencer Martin Baum discusses his hidden symptoms on World MS Day

This year’s theme for World MS Day is recognising invisible symptoms.  This is quite appropriate, given all those inconveniences we have to endure;  fatigue, bladder, bowel, sensitivity, pain, clumsiness, slurry speech, vision, memory - dear God, will it never end?  Well, no, actually, that’s the crazy mixed up world of Multiple Sclerosis (MS).

After navigating these symptoms for almost 40 years I've learned to live with the cards I've been dealt. If I’m tired, I rest. If my speech slurs, I involve myself with as little conversation as possible and so on. For every problem, there’s a solution, as my late father used to say.

These days I think I cope although I might manage a whole lot better if it wasn’t for the unpredictability of my balance and motor skills. The feeling of knowing I want to walk forward, only to find myself going in the opposite direction is a weird one.  It doesn’t happen often but enough, I reckon, to get on Britain’s Got Talent doing a moonwalk dance routine.

Interestingly, social functions, such as a wedding - are guaranteed to bring out the worst in my ineptitude.  Perhaps it’s the overwhelming sense of the occasion. Yes, it might be the bride’s big day, but when standing next to my wife, I begin to wildly windmill my arms desperately trying to steady myself it causes some embarrassment.

I don’t drink. Not because of a conflict with the medication I’m on but because I’ve never seen the point.  However, given the circumstances of being at a do where alcohol is in copious supply, it’s pointless trying to argue my sobriety. That’s when I feel vulnerable; episodes I cannot control, muddling my words, sometimes quite incoherently. And then overhearing comments from other guests that I’m already “four sheets to the wind”.

Yet I do not - and will not - allow this invisibility of circumstance make life any harder for me than it is.  MS has many different symptoms and let’s be honest, it sucks to be at the receiving end of something so rotten and yet, with all sincerity, I won’t allow myself to be a victim.  To be that man.  Because to be perfectly frank, however bad it is for me, I know it could be a whole lot worse.  I could be in a wheelchair, as so many others are.  But not me, so I’m grateful for that.

My mantra is to live life and not MS.  In other words, I own my multiple sclerosis; it does not own me, which is why World MS Day is so important to me.  The more ‘They’ learn then the less I’m presumed to be the local drunk.   I know I am worth so much more and come World MS Day maybe others will too.

You can read more of Martin’s MS experiences over on his blog, visit www.martinbaum.co.uk.