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.

6 comments:

Koshtoo said...

I've pretty much been stuck on the couch for the last few days, so tired and in pain. When I reached Scrappy Doo, I actually laughed out loud for the first time in days. I'm guessing that's the first time anyone has ever laughed when they saw Scrappy Doo. Thank you!

"I have MS but... ooh actually, I'll just have a lie down for a bit." sums up my experience with MS so far. I don't know how to get my family to understand that some days I feel like I can fight, and some days I can only nap.

stevedomino said...

hi - thanks a lot for the comment! Scrappy Doo is probably the most controversial figure in the Scooby Doo world so i'm glad he made you smile.

it has to be weird for our close family members to be on the outside - seeing someone who is "fighting the good fight" one day and going to bed early the next, like some kind of strange bi-polar narcoleptic - it must be hard to keep up!

cheers - feel better soon!

swisslet said...

My favourite scooby doo moment by far is in one of the animated movies, where someone goes "Ooh, look at that fishing trawler" and Fred, bless him , says "That's not a fishing trawler, it's a kelp dredger"
We all know someone like Fred, don't we?

I know you're hard on the spoon theory, and I've certainly never been tempted to get a spoon tattooed onto my body.... BUT... when the BBC featured a piece on it the other week, the comments underneath were HORRIFIC in their lack of humanity, even by the standard of comments underneath an article on a public messageboard. Just awful. (to be fair they were on both sides of the scale....

"When I had home healthcare coming to my house they would always ask me what my pain level was on the 1-10 scale...how can you rate pain on that scale when there are days it far surpasses a 10? And they never asked me what my energy level was and should have because many times my energy level was what controlled how much I could do. I have fibromyalgia and wish in could be cured!"

On a scale of 1-10, how much would you say you understood the concept of a scale from 1-10?

Or, even more irritating:

"Sounds like mind over matter to me. I suffered with depression once and was in a state of mind where I had convinced myself that I was tired all the time, but particularly after doing things I didn't look forward to doing. Once I passed through that phase however I realised that much of tiredness is 'self-inflicted' and you can talk yourself up to things quite easily and not be tired."

GAH!

Ms. CrankyPants said...

Some questions and comments:

1. What's the Spoon Theory?
2. Is Shift.Ms something you recommend joining (realizing this *could* be an awkward one to answer)?
3. I'm choosing to believe you DID NOT trumpet, "I have MS but it doesn't have me!"
4. Great post! I read the nothing-to-lose document and found it very interesting. The quite-possibly-useless-for-MS-but-definitely-healthful Swank Diet isn't really any more costly than a Regular Diet, so I'm not being swindled out of enormous sums of money (although I *did* buy the Swank Diet cookbook, which features alarming recipes such as Mayonnaise Date and Nut Cake. But also good ones).
5. NO, I'm not feeling at all defensive. Really. Really! I'm not. I'M NOT. Get off my back! [sulks]
6. Yeah on the tail eating. Not sure how to change that though, as who *really* cares about MS unless they are affected by it themselves (either by having it or loving someone who does)? Is that too cynical?
7. Thanks for the shout-out, as the kids say (5 years ago...).

stevedomino said...

Thanks for the comments!

SwissLet - the opinions you read kind of prove to me that the Spoon Theory doesn't really work - if it's not getting the idea across in a way that 'regular' people understand, what is it good for?

(insert soulful call-and-response here - and say it again!)

I talk more about my problem with it in my answers to Ms. CrankyPants below, just didn't want to repeat myself - but I must say, I love this:

On a scale of 1-10, how much would you say you understood the concept of a scale from 1-10?

Ms. CrankyPants - here are your answers!

1. What's the Spoon Theory?

A way of explaining fatigue and energy levels to "normals" - see it HERE. It's useful up to a point but could lead to a level of victim-hood and the promotion of an idea of people with chronic illness as being weak, complain-y and miserable. It basically comes off (to me) as something to hide behind. And as SwissLet points out in his comment above, it doesn't seem to communicate effectively to many people.

2. Is Shift.Ms something you recommend joining (realizing this *could* be an awkward one to answer)?

It's pretty good but like any of these forums, can lead to illness competitiveness, which is the sort of thing which gets draining to read. (They've made a couple of great films though which are very worth checking out. The second one - "Belong" - is particularly good.)

3. I'm choosing to believe you DID NOT trumpet, "I have MS but it doesn't have me!"

Bless you but I think I might have done it in the early days of this very blog! For SHAME.

4. Great post! I read the nothing-to-lose document and found it very interesting. The quite-possibly-useless-for-MS-but-definitely-healthful Swank Diet isn't really any more costly than a Regular Diet, so I'm not being swindled out of enormous sums of money (although I *did* buy the Swank Diet cookbook, which features alarming recipes such as Mayonnaise Date and Nut Cake. But also good ones).

I still wake up screaming about those images of TOFURKEY from your blog. But being more healthful is definitely a good thing so more power to you.

5. NO, I'm not feeling at all defensive. Really. Really! I'm not. I'M NOT. Get off my back! [sulks]

Talk about defensive, I read your comment on that original post ("may I suggest some soil?") as "eat shit, dickwad". Basically, you could read this post as a gigantic apology directly to you!

6. Yeah on the tail eating. Not sure how to change that though, as who *really* cares about MS unless they are affected by it themselves (either by having it or loving someone who does)? Is that too cynical?

I guess you're right but some of these sites can breed a certain amount of insularity. If we don't leave a space to let anybody in, why should they care?

7. Thanks for the shout-out, as the kids say (5 years ago...).

Word.

Ms. CrankyPants said...

I meant to reply 100 years ago, when you answered my questions, but then a bunch of shit happened. So the only thing I remember I was definitely going to say is that I laughed out loud at your answer to #7. Excellent.