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

This is hardcore

As they do for so many things, the French have a phrase for it.

And in this case, the phrase is ‘la petite mort’ which quite literally means the little death.

Interestingly, in modern usage it also refers to the sensation of orgasm. But that interpretation is not going to be the subject of this post, I am not late night Channel 4.

Sexual references aside, it can be used when an undesired thing has happened to a person and the experience has affected them so much that "a part of them dies inside.”

And I've been contemplating my own MS-related petite morts recently. It’s been a cheery time.

It’s hard to rank the little deaths because how does, say, loss of speech compare to loss of spontaneity? Or loss of potential stack up against loss of memory? Or loss of sight versus loss of confidence?

Perhaps we need an MS Fight Club to sort it out. (The first rule of MS Fight Club is… oh hang on, I’ll remember it in a minute, it’s in there somewhere.)

Anyway, it’s whiled away a few moments and I’ve decided that I can’t rank them, but I can report them.

• Loss of confidence – a bit of a slow creeper this. When I was diagnosed at 27 I was a journalist, knocking on doors, covering court cases, writing to daily deadlines, getting chased up streets - all the kind of stuff you may imagine, but I was nice with it. Honest. Over the following 13 years, as my cognitive symptoms increased, my confidence has been gradually eroded. Struggling with names, places, words, connections and directions is horribly familiar to people with MS - as is the subsequent questioning of your own capabilities. Most of the time I can't work out which way to turn the front door key and stand stranded on the doorstep, simply marvelling at my competent former self.

• Loss of vision – gah. Three bouts of optic neuritis have left me with damaged sight and colour vision. There are many, many frightening problems in MS, for me visual issues are very near the top.

• Loss of motor control – it all went down my right hand side during a relapse in December 2013 and didn't return for 16 very long months. I couldn’t manage simple tasks without a fight – doing up buttons, writing, chopping veg, plaiting my daughter’s hair, texting or applying eyeliner in any kind of acceptable fashion. Fortunately for my communication needs, there is voice activated text. But, as I discovered during one memorably sweary exchange, it asterisks out the naughty words.
Bl**dy useless when trying to give full vent to the bu***ry bo****ks relapse.

• Loss of direction – not just literally (although I’ve given up being able to take in journey instructions) but employment-wise. I work, but it’s not at a really high level. It's hard to see how working part-time between periods of sick leave will lead to huge responsibility. Bye-bye security, bye-bye potential, hello enforced working life rethink.

So these are some of my MS losses, and as with all deaths, there has to be a grieving process to allow us to survive change. Each relapse brings its own petite morts and its own need for grief. 

We lose, we grieve, we lose, we grieve - in a progressive disease it’s one way street. 

Gain acceptance of the last loss, start grieving the next. 

Again and again and again.

Plus ça change, as the French would say.

:: This is hardcore by Pulp