A mixtape for multiple sclerosis

A mixtape for multiple sclerosis
Showing posts with label tombola. Show all posts
Showing posts with label tombola. Show all posts

Tuesday, 14 February 2017

The boxer

I’m celebrating Valentine's Day with a faintly embarrassing outpouring of affection, and here it is: I love my body.

There, I’ve said it. I do.

Don’t misunderstand me: I don’t stand in front of the mirror every morning and evening talking outloud to it and affirming its loveliness, I am British for goodness sake.

I’m also not saying it’s picture perfect even in the kindest of subdued lighting. But on the whole, I think it’s great.

And the reason I think it’s great, the reason I don’t hate it despite all the limitations it has or has the potential to have, is this: my body is not letting me down. A disease is letting me down.

In my mind, they are two very, very different things.

I see my body as an increasingly knackered team member that is still managing to turn out for my side.
In the words of those irritating Prescott botherers Chumbawumba, it’s got knocked down, but it gets up again.

Because even if, as the widely held theory suggests, MS is an auto-immune disease and my body is attacking itself, then I still prefer to think it’s simply a bit bewildered rather than just plain mean.

It can’t help the random spasms, it can’t help the skewed temperature sensations, it can’t help the stabbing face pain and it can’t help the thoughts-in-a-spin-cycle.
It is not my body’s fault.

And while it fails and falters, it also tries its very, very hardest to help.

So far, it’s managed to heal claw its way back from a number of pretty hefty relapses. Alright, it may never have been a 100 per cent recovery and alright, it might hold part of the damage back and unleash it again when I’m too tired/too cold/have a virus/sat in a hot bath for too long.

But generally, it’s on my side and it’s fighting very hard to stay there.

However, I am fully aware that this state of affairs is subject to change and at some point, my body is likely to stop healing quite as well as it has done to date.

There’s only a certain amount of times myelin can repair to an acceptable level before the damage really starts to hit and more significant and permanent disability develops. 

So far I have been lucky, I have repaired to a reasonable degree. Even if each relapse has left a lingering mucky footprint on my balance, pain, sensation, cognition or vision.

I don't know how much longer this ability to mostly repair will last. And honestly, it's best not to dwell.

So while it’s sometimes been on the losing side in the skirmishes, while it can’t always make me completely better, I would officially like to thank my body for repeatedly lacing up its gloves and stepping into the ring.





Monday, 28 November 2016

Metal Mickey

*Hums in irritating fashion* It’s beginning to look a lot like Christmas, everywhere you go.

Or it is if that everywhere is my daughter’s school and you’ve just been to the festive fair. If you did, you’d have seen hubby and me in our nylon nightmare reindeer jumpers looking slightly panicked while manning the bottle tombola.

We like doing the bottle tombola, it’s busy and fun and excellent for spotting (and trying hard not to judge) the people who make one too many return visits.

It’s also really interesting to see what gets donated under the guise of ‘bottle’ – this year we had everything from a large bottle of Famous Grouse to a small one of Peppa Pig bubble bath.

People had been very generous and we had an army of bottles, homemade chutneys, jams and bath stuff lined up in logical regimented rows ordered from lowest number to highest. 

I’d spent the day before with other parents sticking the winning numbers (ends in a 0 or 5 you know) to the winning bottles and folding up endless, endless amounts of losing tickets.

When it came to the pressure of the day, I could cope with the maths (50p a go, 3 for £1) and managed to match almost all the bottles to the correct tickets, but like a washing machine and socks, some went inexplicably astray.

Fortunately we have planned for this and stashed some spares under the table so no one went home disappointed (apart from possibly the person who had a clearly unwanted bottle of Worcester Sauce resplendent with a few month's worth of dust. But that’s the exciting lottery of a tombola.)

So we survived, and hopefully raised lots of cash for the school, but good grief I then genuinely couldn’t think for the entire rest of the day.

One of the most frustrating things I find about MS is its stealth-like ability to whip the cognitive rug from under your feet. Or speech. Or thought processes.

If I’ve overdone it (either physically, emotionally or brainpower-wise) my ability to think or speak coherently utterly deserts me. I feel like the lumbering metal figure of Tik-Tok, Dorothy’s wind-up guardian in the really quite disturbing land of Oz.

When Tik-Tok’s clockwork springs run down, he becomes frozen or mute or, for one memorable moment in The Road to Oz, continues to speak but utters absolute gibberish.

And this was a pretty accurate representation of me after the bottle bonanza – but without any of the joy of having actually drunk any of the alcoholic-based donations.

Tik-Tok is unable to wind himself and can stay mute, immobile and useless for hours, days, months or years on end. How familiar that sounds.

This time, fortunately, an afternoon and evening of rest helped rejuvenate my springs. But as the disease progresses my inner Tik-Tok continues to wind me up.