Crash

After 13 years you'd really think I'd know better.

You'd think I'd know that if I try and do too many nice things, I will inevitably get a massive MS kick reminding me that I can't. Or at least I can't without incurring a penalty of some sort.

And so it was this weekend.

On Friday I had a girlie lunch, then after school I took my daughter swimming because that's the secret quiet time at our local pool when you get to ride the slides without a huge queue. 

This is also a top time to find a changing room per person rather than squeezing two slippy people into a chlorine infused cell and carefully co-ordinating putting pants on in a way which avoids elbows-in-face/knee-in-chin/disfiguring bra-twanging injuries.

It was great, daughter went down the big scary slide for the first time on her own AND jumped in the deep end. Very proud.

Then hubby and I went out for the evening to see our very talented musical friends do their very talented musical thing at a gig. We'd volunteered to help man the​ doors to take payment, email addresses and give out CDs.

(To be completely honest, I'd volunteered for this purely because I got to stamp peoples' hands with that exciting band name stampy thing that you get at gigs. I may have got a bit carried away with the stamper enthusiasm and imprinted the band name on one poor bloke so hard he split his pint, but never mind, because: stamper joy.)

Then on Saturday I took daughter/budding fashionista on a lengthy shopping trip which was surprisingly free of I-want-this-deeply-inappropriately-sloganed-t-shirt stress.*

Then Mother's Day (question: why the clocks going forwards and the loss of hour's sleep on this of all days?) was a very nice lunch and afternoon with mum and dad.

And the penalty for all this loveliness? The resultant crashes. By Friday night my speech had slurred and my legs had gone weak, by Saturday afternoon pain had flared up and by Sunday morning my left eye had become even more blurry than usual. Plus the boring, boring battle of exhaustion. Suffice to say work this week has been a bit of a struggle.

But this is the dilemma when you have a chronic illness – is the payback worth the pleasure?

The choice between knowing you'll feel like total crap afterwards but grabbing the opportunity to do it NOW because you may not be able to next time.

Yes, I am aware that I should be a bit sensible, measure out my spoons and just suck up the fact I'm missing out. And sometimes I do. 
But sometimes I just don't want to.

So this weekend I made my choice and I pushed my luck, so I will have to ride out the consequences. 

Because they are my friends, this is my family and she is my daughter.

And that is always worth it.

:: Crash by The Primitives 

*Although apparently not free of cringing. I was deemed embarrassing mummy when playing a lunchtime game of song title charades in a busy cafe. Jumping across a busy restaurant while trying to represent the song Leap of Faith is apparently not a cool thing for a grown woman to do. Who knew.

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 

Telling stories

It's a peculiar thing this plundering of my own back pages.

This seeking out of the stories that lie in the past 13 years and searching for helpful or positive or humorous or honest threads to stitch all the pieces together.

The patchwork notion of storytelling has been on my mind a lot lately, sparked partly by the more blogs I write and partly by my current reading material.

As absolutely no one has failed to notice, we're living in turbulent times and today, on International Women's Day, strikes are being carried out in 40 countries in an attempt to highlight women's power within global economies.

This movement was kick-started with the women's march carried out in the US the day after the recent presidential inauguration.

Hundreds of thousands of women and men took to the streets, many of them brandishing placards which quote from Margaret Atwood's The Handmaid's Tale. 

Margaret Atwood is one of my absolute favourite writers – if you've never read her, you really, really should* – and the current referencing of her work has lead me back to The Handmaid's Tale.

I was re-reading it on the train home yesterday, propped up by a scrum of commuters in the less-than-fragrant rush hour carriage, when I came across this potent little sentence: “If it's only a story, it becomes less frightening.”

If you've ever read The Handmaid's Tale you'll know this is not necessarily true, but the whole notion of the 'story' and the process, power and possession of the narrative is one of the key themes of the novel.

It is also one of the key themes in our own lives – what are the stories of our selves? And, as the quote posits, if they are less than palatable, does the telling of them really make them less frightening?

Maybe. Storytelling is as old as speech itself and over time the healing power of it has become recognised in the field of narrative psychology and is a central tool in addiction and trauma recovery.

Being able to reclaim a story through painting or talking or writing is integral to rebuilding, reconstructing and recovering a sense of self.

So with this in mind, I am writing.

If my speech once slurred when I was trying to run training on alcohol misuse, if my spasms kick the cats off the bed or if my Tecfidera-induced hot flashes cause random stripping, they do at least make an entertaining mass of stories.

And they are my stories. And I am in control of the telling. 
Because in the end, as the great Margaret herself said, "A word after a word after a word is power.”

:: Telling stories by Tracy Chapman 

*At-a-glance quotes from Margaret Atwood, but really, I recommend shutting yourself away now with a blanket and one of her novels. Your soul will thank you.

I know enough

I went to an MS support group recently. 

This is something of a rare occurrence for me. In fact there have been very few attendances at any sort of group in the past 13 years. I have a problem with commitment. (Don't mention this to my husband.)

My first meeting was shortly after diagnosis, when I heard a lot from physios about the wide range of suitable exercise programmes and walking aids.

Some time later I attended a fatigue management course where a dietitian reeled off staggering amounts of detail about recommended foods, their benefits and how to prepare them.

Then it was two information days in a hall full of medical professionals brimming over with insights into upcoming medical trials, new research and the latest drugs.

Now, while I'm a fan of information, these events made me wonder whether I actually know enough to manage my MS in the most data-dense, evidence-based way possible.

So, a couple of weeks ago and silently pondering this gap, I finally attended that support meeting with a friend who reassured me that it was a friendly and positive group.

And it was, so that was nice. But one of the most surprising things I realised was that by virtue of having lived with it for so long, I'm now one of the people who gets asked for MS-ey information.

It came up as I was chatting to a lovely lady who'd been recently diagnosed. After a couple of minutes, the 'how long have you had it?' question was asked.* 

When I said, her immediate reaction was “How have you coped for 13 years?”

Ah.

And here I would love to say that I was thoughtful, philosophical, informed and full of helpful peer-reviewed facts.

But to be honest, my advice (keep a sense of humour, listen to yourself, have a G&T, be a bit stubborn) may not have been entirely measured. Or strictly medical.

However, it made me realise that actually that is how I’ve coped and maybe my 13 years of scramble could be helpful to someone.

So no, I don’t always know the finer details of the latest drugs (although I do try and keep up with the research, I don’t follow the Swank diet nor do I have five dedicated core strength yoga sessions a week. 

But within a disease as vast, variable and vicious as MS, I’ve gradually found my own ways to cope. 

There are no perfect answers; but there are lived experiences – and maybe, just maybe, when it comes to them, I do know enough.

:: I know enough by theaudience

*In MS circles, this is the equivalent of the university freshers week ice-breaker of 'which A-levels did you do?' Although with less cheap alcohol and even less chance of an ill-advised bunk-up a few hours later.