Tuesday 25 October 2011

Wine, tights and spasms

So it is now 20 days until the Big A (alemtuzumab) treatment and I am trying to meet up with as many people as I can because after the treatment I'm going to have to lay pretty low for about six weeks in order to avoid catching any bugs. (Although none of the people I'm saying my temporary farewells to know that saying au revoir is what I'm doing.)

To be honest, I've been avoiding social situations for a while now. Once upon a time, I was out every weekend. People were used to seeing me turning up to work on a Monday, bleary eyed, fuzzy headed and gushing about what an amazing weekend I'd had. Invites to parties were always accepted and few needed to say it was going to be a boozy affair because that was taken as a given.

But then my old friend MS started to make its appearance felt. A glass of wine and suddenly my hand would start to spasm painfully. Clawed and with a mind of its own, the pain would spread up my arm until it hit my shoulder blade.

At home, it was ok - I didn't need to hide it from my husband. But out and about? Well that was a different story.

A couple of times, I found sitting on my hand was the only way to cope with it. A few minutes later and the spasm would pass.

But even though it was just a few minutes, my night was ruined because that few moments reminded me that I have MS.

That I have this vile and hideous disease that I can't control; that I can't do anything about; that makes me stop dreaming and instead makes me wonder how disabled I'm going to get? When will I end up in a wheelchair? When will people stop looking at me like me?

And so the self-pity and the anger sets in.

Once, I was at a wedding and had donned some very attractive 'hold my belly in tights'. I went for a toilet break and there was a queue. Finally it was my turn, so in I went, spent a penny and then attempted to pull up the 15 denier nude tights without laddering them and manoeuvring my post-baby belly back into the fat-busting panel. I won't lie... the situation was tense! More so because there was now some desperate-for-the-loo fellow guest hammering on the door begging for me to hurry up. And as if by magic, with my hand halfway down my tights, MS decided to strike and my arm spasm returned.
I was now trapped in that cubical with a woman desperate to get in outside and me on the inside desperate to get my hand out of its spasm (and my tights). In the end, I gave up. Sat down on the toilet lid and waited for normality to return before pulling up my tights and wiping my eyes from the tears that had suddenly escaped.

So, that's why I've been avoiding social situations because there's only so much sitting on my hand in a night I can take. It's not because I don't like going out anymore. It's not because I don't like getting giggly over a few glasses of wine anymore. It's not because I've turned into a stuck up snob.

It's because I can't show the world that I'm out of control when MS comes out to play. I can't show the world yet and I'm not sure if I ever can.

That's why I'm pinning my hopes - all my hopes - on the Big A and praying that it works.

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