(Let me be your) Teddy Bear

We're back at Butlin's!

Hurrah for:

• the familiarity that prevents the cog fog
• the catering that helps the fatigue
• the AMAZING new swimming pool that eases pain and stiffness
• the family time 
• Billy Bear

:: (Let me be your) Teddy Bear by Elvis Presley

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.

:: Metal Mickey by Suede

Waterfall

We spent our half term at Butlin’s.

Ooh, it’s technicolour mayhem, but we love it. For my daughter, it’s great, it feels safe and is full-on entertainment with a week of mummy and daddy agreeing to pretty much everything she wants to do.

For my husband it’s great as he gets to eat huge breakfasts every day and see Billy Bear on a regular basis. He’s a big fan of cuddly toys that speak – we have quite a few in the house. As I suspect our daughter starts to become too old to be the excuse for his cast of voice characters, Billy gives him an outlet.*

For me Butlin’s is great as we’ve been a few times so the whole process is massively familiar thereby lessening cog fog worries and if I’m well enough, I can swim at any time I want to.

I’m at my happiest in the water. Alright, I can’t feel the temperature until the water hits my chest, but this is a plus because even the cold local pool feels like Barbados from bra level down.

So we swam every day and did, indeed, have a splashing time.

I even had the energy to go on the slides including the slightly insane Space Bowl which shoots you down an enclosed green tube and into what can best be described as a gigantic goldfish bowl which you circle in an ungainly fashion before being ejected at frighteningly high speed into a plunge pool.

Fortunately, being short sighted, I had to take my glasses off to go on the ride and therefore avoided seeing the faces of the spectators when I pitched half-laughing, half-shrieking sideways into the blue. I was a lycra-clad chlorine triumph.

But it took me the whole four days of swimming pool going to pluck up the courage to go on the Space Bowl.

It wasn’t the inability to see things clearly (myopia + optic neuritis have made me used to that), nor was it the warning signs stating “this ride is not recommended for people with medical conditions.”

It was more the belief that I could still be the person that could do that kind of thing; that I didn’t have to be limited – for the time being at least – by my physical or emotional state.

It was also a nod to my own longed-for signs of recovery, a weird little waterfall feeling in my head.

The first time it happened I was petrified, my entire head felt like cold water was coursing endlessly through it and I was sure another relapse was happening.

I was told once that the feeling signifies nerve pathways coming back to life. I don’t know if this is true, but my head waterfall only tends to happen during recovery so I might continue to believe it.

So cheers to the Space Bowl for making me happy. And cheers to the waterfall, long may it run.

:: Waterfall by The Stone Roses

*Although he has started to refer to Billy Bear as Champagne Billy for reasons best known to himself. It’s entirely possible that in my husband’s head, Billy Bear has a trust fund and plays polo.