The edge of glory

MS: *brightly* Hiiiiiya

Me: *reading* Oh, hi.

MS: *looks smug, puffs chest out* Hiiiiiiiiiiiiiiiiya.

Me: *reluctantly putting down book*  You looked pleased with yourself.

MS: Yes, I’m in the news!

Me: What have you done now?

MS: There’s no need to be like that.

Me: I think you’ll find there’s every need. So go on then, what’s happened?

MS: Well, it’s very exciting - it’s all about me! Some clever research boffins think they’ve finally found a cause for meeeeeeee!

Me: Oh yes? And have they also found any actual point to you? Other than being an attention-seeking diva, obviously?

MS: Ooooh, unnecessary.

Me: Totally necessary. So go on then *rolls eyes* what’s the cause?

MS: Well, it’s something super sciencey, but basically they’re saying there’s too much of one type of protein in your brain that’s causing miscommunication between your calcium supply and your mitochondria...

Me: My what now?

MS: Durrr. Mi-to-chon-dri-a, it’s the energy-creating powerhouse bit of a cell.

Me: Oh, yeah, right, I knew that.

MS: Course you did. Well, anyway, this miscommunication with the calcium supply triggers the mitochondria into misbehaving which in turn causes toxicity for brain cells in people with MS.

Me: Erm, hang on, did you just term all your disability-causing crapness as ‘misbehaving’?

MS: Well, that’s what it says here, and as you know, I’ve always liked to think of myself as the very spirit of misbehaviour. A little bit cheeky, a little bit naughty *winks to camera*

Me: Please don’t do that.

MS: Sorry.   *under breath*  Not sorry.

Me: Aha, so - and please excuse my cynicism here - putting aside all the previous miracle breakthroughs that we’ve heard about will this one actually lead to a cure?

MS: Well, and this is the rather worrying bit for me, I’ll admit. What they’re saying is that because they reckon they’ve finally found the cause, which as you know, has been the subject of mystery and disagreement for many years, it could now pave the way for targeted and pioneering new treatments.

Me: Oooh, so you could finally be gone then?

MS: Guess so. Bit sad actually.   *Pauses*   Right, well, not much more to say here, I’ll be off. Bye then.

Me: Wait, what? You’re actually leaving? Now?

MS: Ha ha. Fooled ya. Just because they think they’ve found a cause, doesn’t mean they’ve actually found a cure yet does it?

Me: Oh, well no, I suppose not.

MS: No, you suppose not correctly. So until then I thought I’d just lurk around a bit. Silently. Waiting. Like the ever-present threat I am.

Me: Yes, thought so. *sighs, picks book up again* Guess it’s back to as we were then. 

MS: *smirks* Yes, as we were.

Me: *whispers* But hopefully not for much longer. You tiresome little twunt.

:: The edge of glory by Lady Gaga

Lily, Rosemary and the Jack of Hearts

When you become a metaphorical card-carrying member of the multiple sclerosis community, you can celebrate this news by carrying an actual, literal card.

This handy little orange plastic jobbie explains that a person has MS, reassures panicked bystanders that it’s not infectious, and details why the holder might need help fast:

It is intended to be produced if you need the loo urgently, are at risk of falling or cannot see or speak clearly and is - assuming the person being presented with the card is helpful - a useful thing to have.

But from this card-carrying member’s point of view, the orange card I would far rather have had on diagnosis is this one:

Not because I am some sort of top-hat shaped recidivist, but because if you’re given one crappy incurable disease, surely you should automatically have a free pass from any other sort of health calamity.

Seems only fair.

But sadly, in our own faulty deck of chance cards, this is not necessarily the case. Something neatly outlined in *panic warning* this particularly scary article linking an MS diagnosis with higher risks of other nasties.

It’s not just the big illness risks either, there’s a whole list of other complaints that exist as part of some sort of bad MS knock-on joke and for which I firmly believe we should get a whole pack of get out of jail free cards.

Things like muscle atrophy due to long periods of relapse inactivity, dental problems due to stiffness, weakness or muscle spasms affecting the ability to brush or floss properly, weight gain because of difficulty moving around or poor nutrition due to limited energy or a reduced income.

Not all of these things - larger or lesser - happen to everyone with MS. And of course, some can be balanced with help, information and support. 

But such piece-meal construction of a healthy life makes for a pretty precarious paper structure.

And, like any house of cards, it only takes one light breeze for them all to come tumbling down.

:: Lily, Rosemary and the Jack of Hearts by Bob Dylan

- The MS Assistance card is available here.

We are the village green preservation society

We're enjoying the Easter break and have just eaten our entire body weight in scones, cream and jam in a quintessentially English tea-room.
It made me feel I was living in this gem of a song.

Back to the MS-ey stuff next week.


:: We are the village green preservation society by Kate Rusby.
(I do love The Kinks, who wrote this one, but Kate's pronunciation of Donald Duck can't be beaten.)

Stop

After last week's kicking, I decided that I'd have to reign in the activity a bit.

A decision unfortunately aided by my daughter who finally succumbed to the sickness bug which has been haunting her classroom like a dyspeptic spewing spook since November.

This was particularly sad as she woke up vomiting on the one day of the school year that they had a class trip.

Completely rubbish for her - no coach singing and classmate fun; instead a day on the settee with handy bucket and mummy running to and fro with towels, glasses of water and cuddly toys.

By Friday evening the unpleasant bug had, well, bugged off and we were left in the post-sickroom uniforms of pyjamas and blankets.

Aha, thought I, perhaps this is a sensible if slightly wiffy sign. A sign that maybe we should just continue the lockdown and do absolutely NOTHING all weekend.

So that (apart from changing pyjamas, because, you know, yeuch) is what we did.

And it was totally and utterly delightful. We stayed in bedclothes, we relaxed and between hubby and I we read aloud the third Harry Potter book to our recovering daughter who loves a bit of magic.

It made me wonder why we don't do this more often.

The answers of course, are simple: 1) we usually have something booked in almost every weekend, 2) I feel guilty if I stop, 3) the food shopping still needs to be done, 4) I feel guilty if I stop, 4) the house still needs cleaning, 5) I feel guilty if I stop.

Hmmm, perhaps I need to have a little think about that guilt issue.

I'd be the first person telling a friend that it doesn't matter if the washing up doesn't get done or the lawn isn't weeded - you are allowed to just let things go for a weekend. But never easy when we try and apply that sage advice to ourselves is it?

I'm also aware that quite often I'm forced to stop, so having the choice to stop seemed a little bit self-indulgent.

But, do you know what, it was absolutely the best thing for all of us. We had a really, really lovely family time just sitting and reading, laughing, being together and pretending to conjure up a Patronus.*

Maybe stopping for a bit will actually gave us all a little bit of a protective charm for the week ahead. I do hope so. It certainly gave us a magical weekend.

:: Stop by Sam Brown 

*For those not in the know, a Patronus is a silvery-white guardian which is a protective magical concentration of happiness and hope. Man, I wish Harry Potter was real. 

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