Changes

Had a bit of time to think about the last blog and realised that I’d forgotten one key loss.

This is what 13 years of cognitive decline will do to you. Tune in next time for another one that's suddenly come to me. (As long as I remember to write it down, obvs.)

Ah well, it’ll give me more space to witter on about it – and it is *imaginary drumroll* loss of certainty.

I realise for a lot of people with MS, this is immediately obvious – possibly thanks to an almighty felling relapse and a long time spent reading forums – but for me it took a bit longer to register.

When I was first diagnosed, I was still working as a newspaper reporter. My editor at the time was not known for his sympathy to anyone a little bit different.

It was not the environment in which to be a newly disabled woman.

But I am nothing if not stubborn – and a little self-obsessed – so I talked to him about writing a feature about my diagnosis on the basis that it a) had human interest, b) might help others and therefore position him as a caring-sharing type of guy and c) would make quite a hefty chunk of copy for the features page and stop the daily just-fill-the-page panic.

The feature was captioned by the sub editors (reporters don’t get to write their own headlines) and when I saw the printed version, there it was: “Learning to live with my uncertain future.”

At the time, I didn’t think too much about it. I was more concerned with checking that picture desk hadn’t chosen the least flattering picture of me. Just to note, this was a genuine concern, there were many.

But as I’ve ventured further down this bumpy road, I’ve realised how suitable the headline was.

And yes, I know none of us know exactly what the future holds and yes we could all get hit by the same bus tomorrow while in our collective clean underwear, but generally we can book a holiday a few months ahead and think on the balance of probabilities we’ll be okay.

Not so with MS. Oh no. Some days I’m hard pushed to tell you I’ll be okay at 3.30 when you’re asking the question at 3.25.

And this is the really key concept to get to grips with when you’re told you have MS.

Yes, there’s the fear, the endless medical appointments and the battle to keep positive when you just want to hit something. 

But over-riding all of this is the knowledge that MS could sideswipe you from nowhere at any point with any symptom causing any damage.

With zero warning, little mercy and absolutely no consideration for what you thought you had planned.

So yes, you wise subs, I am now certain about the uncertainty. 
Just goes to show that sometimes you can believe what you read in the papers.

:: Changes by David Bowie