Thursday 7 November 2013

corrections and clarifications

Lesson 1 - IRONY doesn't really work online. Certainly not in 160 characters.
When I posted last time that the Internet can be an amazing thing, I didn't mean it without qualifications. I think it would've been better if I'd said "an awesome and terrifying thing".

Yes, the social media stuff is amazingly positive, and the fact that the means of production are within everyone's grasp means that people don't need to feel as isolated as they otherwise might.

However, this also means that... the means of production are within everyone's grasp. So basically anyone anywhere can say anything that comes to mind. Without any credentials whatsoever.

I'd hate to think that anyone (least of all the divine Ms. CrankyPants) thought I was sneering at people for following an unconventional diet. If it works for you, go forth and be healthful.

As I said, when I was first diagnosed my neurologist told me to avoid the internet, and I think he was right to say this up to a point. Too many miracle cures and horror stories and shysters.

And God knows, since diagnosis I've tried everything from the sublime (CBT) to the borderline-ridiculous (Reiki).

At the point of diagnosis, we're all really vulnerable. We sucker for the miracle cures, because we all want one - it's only natural to need to believe that one day this is all going to go away!

Anyway, the folks at Shift.MS picked up on my post and pointed me in the direction of this document from the MS Society - "I’ve got nothing to lose by trying it: Weighing up claims about cures and treatments for medical conditions" - it's a really good read, perhaps a bit (necessarily) cautious but good nonetheless.

MS is such an ephemeral condition. A common complaint from PwMS in online communities is that "regular people just don't understand".

And while that might be true, I don't think we've ever really been able to come up with a watertight definition, mostly because no two people get it the same. My main list of symptoms would be:
  • sometimes I get physically and mentally exhausted. But often I'm ok.
  • sometimes I can barely move my legs. But sometimes I'm ok.
  • sometimes a whole new symptom might rear up to bite me on the ass. But not often enough to be gut-wrenchingly terrifying.
  • sometimes I'm terrified of the future. But mostly I'm ok.
And I've heard (and *whispers it* said) the line about "I have MS but it doesn't have me".

(I'm not proud)

This is a nice idea but you know what? Sometimes MS has my ARSE on a platter - and there's not a damn thing that I can do about it - regardless of any amount of Scrappy Doo-esque bluster. So save it.

I have MS but... ooh actually, I'll just have a lie down for a bit...

It's hard to get a handle on MS and I've never been able to describe (for example) fatigue in any way that makes sense or that doesn't invite the listener to say, "oooh, I know, I get tired too".

(and don't get me started in the bloody Spoon Theory)
My point is, if we can't explain our condition, how can we possibly expect the people around us to GET IT without pointing them towards a THIRTY-SIX page document, no matter how well put together?

The online community is comfortable and comforting because the vagueness and fuzziness is shared. There's enough commonality so that we can say that we get it.

But if we only ever talk to ourselves we're doomed to basically eat our own tails. And that's not massively healthy or helpful or proactive.