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 

Hope of deliverance

Continuing my string of hospital visits - four in 10 days, it’s some kind of personal record – I’ve recently had an eye clinic appointment.

This one was to discuss the optic neuritis damage/recovery from my relapse in January.

I’ve hated this relapse. It’s not like I have ones I love, let’s be honest, but this one has been a truly depressing one.

Eyesight is a particularly terrifying one for me: I’m already quite short-sighted, I have posterior vitreous detachments in both eyes and there’s a family history of glaucoma. The cards do not feel stacked in my favour.

I have also failed to find an eyepatch which at once says cutting edge chic and devil-may-care. Although my lovely work colleague did buy me a red lacy boudoir-esque one which may yet come in useful if I’m ever invited to a certain kind of niche party.

The results of this one showed that in the past 10 months I’ve gone from not even being able to see the board on which the eyechart is mounted, to being able to read the third line from the bottom.

My colour vision doesn’t have quite such happy news though – I couldn’t make out any numbers on the colour blindness chart in January and it’s still a struggle to discern half of them. This I knew as I’m aware my left eye sees the world in watercolour not acrylic, but it’s still a bit sad to have it medically proven by the surprisingly old fashioned flip book.

But I’m going to remain doggedly positive as I still have the potential of two more months of recovery, having been told ON can take up to 12 months to recover, if not longer. I cling to the longer.

What astonishes me though (apart from the body’s ability to recover in the relapsing phase of MS) is the time discrepancy between the damage occurring and the subsequent recovery time.

First relapse: 30 minutes for left hand side to be knocked out, six months for recovery.

Biggest relapse: 40 minutes for speech and all motor control down right hand side to go, 16 months for recovery.

Optic neuritis: 60 minutes for vision to go, 10 months (and counting) for recovery.

I say recovery, it’s actually never been 100 per cent, but it’s been okay and to a level I can live with, but good heavens why must it take so long?

Be patient is a mantra you learn to live by when you have MS. Be patient and keep hope.

So that’s what I’m doing for my eye. I will wait and hope and wait and hope until the time shows that recovery will be incomplete. And then maybe I’ll just wait and hope a bit more.

:: Hope of deliverance by Paul McCartney

Ac-cent-tchu-ate the positive

I had an interesting chat with my MS nurse earlier this year.

I’ve had a few of these, but in this particular one we were discussing upgrading my medication.

Background: It took me 10 years to agree to drugs (although when I was first diagnosed, we were still in the watch-and-wait era) but I finally had such a doozie of a motor relapse just after I started my new job that I agreed to Avonex. Twenty months later and another relapse shows Avonex is not working, so it’s onto either Gilenya or Tecfidera. I have yet to decide which side effects I fancy.

This latest relapse took the bulk of my colour and normal vision in my left eye and, because it’s my eyes, remains my scariest relapse yet. I initially panicked then cried a bit and then bought an eyepatch, carried on working and braced myself to wait and hope for recovery – if ultimately only partial.

I thought I’d done quite well with accepting my situation, until my nurse suggested to me that I might be in denial.

Oh.

Initially I agreed – she’s the expert and would know better than me.

But then I did a bit of proper thinking about that particular relapse, and to be honest, a bit more about MS in general than I usually do. And these are my thoughts – bit jumbled but let’s try:

It’s possible there are bits of me that might still be in denial, even after all this time, but I’m not sure that’s the full picture.

Some of my response is simply wanting to appreciate the moments when I’m ‘well’ - or at least the well I’m at now rather than the well I was pre-MS almost 13 years ago.

Some of it is that I’ve just considered myself to be quite lucky with my relapses and recoveries – recovery has never been 100 per cent, but it’s been enough - so I just try my very best to remain as optimistic as possible while also being very mindful to not take those recoveries for granted.

I think when there has been the degree of recovery I’ve experienced – or maybe it would be better described as the ‘degree of recovery that I am very grateful for’ (perhaps not the same thing as an impressive medical recovery) then I don’t like to dwell too much on what might or might not happen.

And I know that bits of me will never recover but I’ve just got so used to the parts that don’t work that I’m mainly just happy with those that do.

So if this is denial, then I guess I’ll take it.

If it’s acceptance, I’ll take it.

If it’s the power of positive thinking, I’ll take it.

Although that very phrase makes my entire body want to cringe.

:: Ac-cent-tchu-ate the positive by Bing Crosby