Losing my mind

One of the less recognised effects of MS (or I suspect any chronic illness) is the loss of confidence you experience as a person with the disease.

This week, chatting with a friend, has really made me really think about the insidious nature of lost confidence as a symptom.

When I was diagnosed at the age of 27, I was working as a journalist; knocking on doors, covering court cases, writing to daily deadlines, getting chased up streets - all the kind of stuff you may imagine. And some you might not.

Fifteen years later, as my cognitive symptoms have increased so has my confidence been gradually eroded.

Struggling with names, places, words, connections and directions are now part of my daily life. I no longer think quickly - or often coherently. I find writing far easier than speech.

These processing issues are, I'm sure, are horribly familiar to others 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 the competence of my former self.

Cognitive difficulties do create a silent panic. What am I saying? Why can't I think clearly? What impression am I giving?

There are some good and sensible tips on how to deal with memory and thinking problems.

But to some extent I feel these rely on having the confidence to ask for help in the first place. When you're already plagued by a confidence deficit, that's not very easy to do.

I'm struggling at the moment to see how I could realistically ask for more time to respond in a work meeting without:
a) appearing foolish or ill-prepared, or
b) having to explain how MS affects me to a sea of blank faces that I may not have met before, who don't really understand and who just want to whip through the agenda because they're on a hectic timescale of fifteen other meetings.

Don't have the confidence to ask for help - so you don't get the help you need for confidence.

It's a depressing Catch-22.

I'm not sure I've found the answer. The only thing I can think of to do is return to the mindset of my reporting days where I conjured up some sort of uber-confident version of myself who could drive off somewhere unfamiliar with an A-Z held up against the steering wheel, knock on unknown doors and ask a series of difficult questions.

It was never the real me. It was a carefully constructed work version I used to strong-arm myself into facing challenging situations.
I really did have to fake it to make it.

I don't know if this is the healthiest way to do it, but it might be the shorthand way to confidence. And - as a former reporter - I'm all for the shorthand.

:: Losing my mind by Liza Minelli

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