Enjoy the silence

Things it might be wise not to say to a person with MS.*
Think of it as a handy cut-out-and-keep guide.

Haven't you seen the news? There’s a cure!
No, no there isn’t. There are disease-modifying therapies that we can inject, swallow or be infused with that MAY reduce the likelihood of relapses but they are not a cure because a) they don’t stop all relapses and b) they do not repair old damage. There is, however, positive new research and new breakthroughs which may lead to new treatments – but these take a long time to become available to patients as they have to get through in-depth medical trials and licencing approval.

How come your new drugs aren’t making you better?
Because sadly that’s not how they work. They don't repair previous damage, they don't stop all relapses, they are disease modifiers that MAY cut relapse rates but they bring with them a whole range of really quite significant side effects which can actually make us feel more poorly.

So why don’t you just try a different medication, one that doesn’t cause side effects?

Erm, because there aren’t any.

Maybe you should try cutting out *random foodstuff*?

Obviously good diet and exercise is important, I’m not denying this; it’s more the disdainful/evangelical/judgemental proclamations over my choices based on reading one headline - and the assumption that I can’t research and find this stuff out myself as, you know, the actual person with the actual disease.

Maybe you should try adding in *random foodstuff*?

See above

Should you be drinking?

Please leave now. And order me a double on your way out.

Are they only keeping you in your job because you’re disabled?

While I can’t deny this hasn’t crossed my mind I would just like you to have a little think about what effect that question might have on someone.

I knew someone who had MS and they died from it.

Now why would anyone want to hear about that?

Oh yes, I’m tired too

Gaaaaaaaaaaaaaaaaaaaaaaahh.

:: Song – Enjoy the silence by Depeche Mode

*All of these have been said to me.

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