A mixtape for multiple sclerosis

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





Friday, 13 January 2017

Mr Brightside

Perspective. Comparisons. Sliding scales.

They’re all interesting phrases when applied to the way you view things – wealth, achievements, career, family, life. Illness.

Like a number of chronic diseases, the perceived seriousness of MS sits on shifting sands depending on who you speak to.

Perhaps you’ve dealt with reactions from people at the oh-it’s-not-so-bad end of the scale. They’ve seen someone being amazing on the Paralympics with it. Or know a friend’s mum who has had it for 25 years and still doesn’t need a walking stick. Perhaps they know someone who works fulltime and goes to the gym every other day?

On the other hand, perhaps they’re at the other end of the scale and they’ve got a pretty bleak outlook for you. Maybe they’ve cared for someone with the primary progressive form? Watched someone deteriorate before their eyes? Seen someone in the end stages of MS?

It’s entirely possible you’ve dealt with these – and many opinions in between – from the medical community.

During the summer I saw a gp I don’t normally see. He asked how I was generally and we had a general chat about MS and recent research.

He concluded by saying it would be good for his newly-diagnosed patients to see me still working and with a family.

Because really, for you, it’s just an inconvenience,” he finished. With a reassuring smile, believing he’d said the right thing.

And, if I take a deep breath to calm down and think about that proclamation, then to some degree he was right. I’m currently not hugely debilitated. I still work, drive and most of the time I appear to function like everyone else.

To a gp, who is bound to come across far more aggressive cases, he may well believe he could describe my MS as ‘an inconvenience’ and there’s a little bit of me that sort of accepts that.

But to me an inconvenience means a flat tyre or the radiators needing bleeding or running out of teabags.

It does not mean slipping down the workforce ladder because I know I couldn’t manage it or missing most of the things healthy people take for granted or making the painful decision to not extend our family.

None of these things would I describe as ‘an inconvenience.’

So while I do recognise that I am somewhere in the middle of the health-death track bar, I think we would all like recognition of our own personal scales and a bit more consideration of what might actually count as our inconvenience.