A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

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.


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