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.