Tag Archives: life

Out of Kilter

rouletteLife is odd.

We click along in our own unique cogs, ensuring each cog fits the next one so we have  perfectly functioning life.

My cog clicks in with The Teenager’s, and my house and my work. And the kitten. And when it runs smoothly, it’s great.

The thing is, my cog seems to be out of kilter right now, jarring with each of the other ones, and it’s creating havoc.

It started small, inconspicuous, a couple of years ago. My speech went out of kilter. MS. Then my walking. MS. Then my brain. MS. The cogs clogged up, lol.

I think, ever since my diagnosis, I’ve been striving to get all these cogs working properly again. Some have, and we muddle along and it’s great. It’s a bit like oiling the daily machinery of life.

Yet, there’s one cog, possibly the largest one, which refuses to shift back into place. I feel somehow disconnected, rolling around like a ball on a roulette table, never quite finding my own space until the last minute.

I guess I haven’t quite ‘clicked’ back in to place. I used to be (I think, anyway) a great mother. I used to be a worthy colleague. I used to have ¬†boyfriend. I used to have opportunities and possibilities.

And now? I’m that little ball, trundling along the wheel, trying to find out where I fit in.

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The Many Faces of MS

duckAfter our interminable wait in MS Limboland, after our diagnosis, after our anguish of coming to terms with MS, just how do we show our MS to the world?

I’m only wondering as I’ve gone from one extreme to the other in the space of a month.

Four weeks ago I was catapulted back to square one, with the worst symptoms I’ve had since the very beginning of MS. I was rigid with panic, terrified as to what it could mean for me and The Teenager.

I was pretty much unable to function at all. In the last few days though, I’m suddenly on much more of an even keel.

It goes without saying , my despised eternal enemies – foot drop, heat-intolerance, fatigue, not-working hands are still here and no doubt always will be.

Who’s idea was it to buy the kitten two ‘fun play-tunnels’? She probably has more fun watching me trip over them than running through the pesky things and batting the tied-on plastic balls at each ends. She strategically shifts their locations around the room, so when I come back from work, she sits back and waits for the hilarity to begin before rushing to her food bowl and looking at me with huge, pleading eyes

So if I’m confused by this rapid turnaround of symptoms, how do we explain this to other people? And how do we come to terms with the fact that it might not last. Or maybe it might. For a while longer. Or maybe not.

I’m sure my friends and family are realising that I’m just not the same person they used to know. One day I’m fine. The next I’m not. Essentially, MS is always, always at the forefront, no matter how well it’s behaving itself. I try to shove it down, squash it into submission but it’s forever seeping through the seams of my life, colouring everything it touches.

I think it’s got to the point that whenever I meet up with someone, the first thing we have to do is establish where I am on the MS-Scale. After that, what should I do? Brush it under the carpet? Dismiss the hateful symptoms with a wry laugh? Or bore them rigid with dark fears?

There is no easy answer. I worry that ‘what’s she banging on about (again), she looks fine‘ is lingering in their minds; I run a house, I’m raising a Teenager single-handedly, I’m taking a Master’s, I work. I can’t be that bad?

I wish people could see the network of mechanisms behind the scenes – the forward-planning, the endless lists, the time-management. It’s exhausting. I’m like one of those ducks – calm on the surface, gliding along, but with little flappy feet frantically pedalling, unseen.

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MS Replies…

MS repliesDear Stumbling,

Thank you for your kind and thought-provoking letter (see, I do read your blog, so ner ner ner ner ner, as you so eloquently put it). I think it’s time we had a little chat, don’t you? Mind the step and pull up a chair.

Look, between you and me, I know I wasn’t invited. I’m never exactly welcomed with open arms. I mean, really?

But let’s get a few things straight. Who told you life was going to be easy? You can’t turn the clock back and I’m here to stay, so you may as well get used to me hanging around, whether you like it or not (harsh but true).

Which leads me neatly to my next point. Sure, I’m pretty nasty. I mess up your body and put your brain in a blender. But I’ve been kind to you too. Don’t laugh – without me, would you really appreciate life so much more than you used to? Would you really make the most of every day? I don’t think so. You were quite happily trucking along, making plans, blah blah blah, without a care in the world. Life. Is. Not. That. Simple.

See? I helped you change your life, didn’t I? Yes, I know you lost everything, but we’ll run through that, shall we? Career? If your employer was going to treat you like that, they weren’t worth it anyway. Ditto partner. He scarpered at the first sign of trouble. I saved you the pain at a future date. And stop worrying about finding someone new. Find yourself first, then think about it. So in a strange kind of way, I simply hastened the process of clearing your life out, didn’t I?

And I really do think you should thank me for that. Sure, I prod you and push you over. And? I see you laughing at it now. You turned it round. You used to trip and curse every single time. Now you shrug it off. Life is all about adapting, every single day. Nothing stays the same. And if that’s the only thing I can teach you, then I’m happy.

You’re doing ok. You faced up to me (and to be frank, you’re a teeny bit scary when you do that). I think you are much more powerful than before, despite feeling weaker. Have a think about it.

Anyway, I’ll leave you with that. And please, no more pity parties. Yawn.

Yours forever,

MS

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