Bell Ringing with ME
So I have my first practise quarter peal tomorrow, the first of what I hope is a series of practise quarter peals for those of us who want the extra time on a rope without the stress of trying to ‘get’ the quarter. . . .
And the ME* has knocked me down and poured a few avalanches over me and I’m now lying, bruised and twitching faintly . . . and thinking about the fact that that frelling first practise quarter tomorrow got commandeered for not merely Sunday evening service ring but for the retirement of one of our church’s important frock-wearing and service-taking people . . . which is EXACTLY what I was trying to avoid. I was doing a little sotto voce muttering about this last night—before the ME snuck in at 3am and nailed me to the bed—and everyone was saying soothingly, no, no, don’t worry about it, it’s fine that it’s only a practise quarter and if we don’t get it it’s not a problem. Yes but ‘not worrying’ is Not One of My Skills. If the ME were really going to say ‘look, quarter peals are a bad idea, this is why you stopped ringing them, remember? Dork,’ I wish it had said it sooner.**
There was another article about another frelling study about ME in the Guardian yesterday: http://www.guardian.co.uk/society/2011/feb/18/study-exercise-therapy-me-treatment which is pretty much the same mixture as before—which means pardon me while I go bang my avalanche-bruised head on a wall. I tell myself I should be glad they’re at least bothering to study it—I agree that there’s still a stigma that ‘it’s all in our heads’, that all we need to do *** is stop whining. Um. I don’t think that will fix anything, and in the meanwhile whining is one of my restricted pleasures. I’m not going to give it up.
But the reason I’m bothering to quote this article here is because as an outed and somewhat public sufferer of ME I feel a certain responsibility to protest when the standard crap starts circulating, in defense of anyone who hasn’t had it as long or has it worse than I do, and is more vulnerable to this kind of expert rot. This is one of the things I have against most doctors: you are not at your best when you’re ill and you’re not in a position of strength or wit to argue with some expert telling you what to do.
I still believe that what is presently called ME/CFS is going to turn out to be a syndrome or a range of diseases/conditions; I’d guess that there are viral/bacterial/genetic triggers and predispositions, but I doubt it’s ever going to be finally defined as this, this and this and not that, that and that. Is it real? You bet it is. The headache, the weird vision stuff, the aches and pains, the dizziness, the nausea, the brain fog—especially the brain fog—the unmistakeable awareness of notrightness—is unlike anything else. It’s not like ordinary headaches or ordinary aches and pains or ordinary stomach upsets or ordinary klutziness. Or ordinary brain fog. It’s the ME. You know. Believe me, you know. And—with reference to ‘all in your head’—it’s not all in my head, but it’s certainly in my head too. I’m a homeopath; we know that the mind and the body are one critter, and so the right kind of mental therapy is going to be helpful, just as the right kind of physical therapy will be. That shouldn’t be insulting; and it’s true.
Personally I have my doubts about CBT, cognitive behavioural therapy, which is the psychological therapy the study in this article was examining. I don’t much like things that only treat symptoms†; I don’t want a crutch for my bad leg if I can fix the leg. And I want to spend some time trying to fix the leg. If CBT works for you, that’s great, I’m a huge believer of what works††, but if it doesn’t work for you it doesn’t mean you failed, you know? It may mean it’s the wrong therapy.
But GET—graded exercise therapy—as recommended to ME sufferers makes me crazy. I have no doubt it works for some people; I’ve heard the stories, and it seems to have a habit of throwing out the occasional fabulous miracle cure—there’s another one in this article. But blood transfusions used to throw out miracle cures too, when they didn’t kill you, before the experts got the blood-type business sorted. I think GET is dangerous. GET basically makes you do a little more every day to GET’s schedule, not yours or anything individual to you—no matter how crummy you’re feeling. In my experience, and in the experience of the other ME withstanders††† I’ve spoken to personally, this is a recipe for disaster.‡ One of the (many) things that makes me testy is the New Age la-la aphorism that illness is good because it teaches you stuff. Yes. It teaches you that life can be crappy. I don’t think any of us needs chronic illness too to learn that. But my ME has, as sure as it will hail on the day of your first voice lesson with your new teacher, taught me to listen to my body. And my body (and my brain) has its good days and its bad days—on its own schedule. Not some frelling expert’s therapy’s schedule. When they’ve got a bit more of a clue what ME is, then maybe they’ll have a bit more of a clue of who GET can help. Meanwhile . . . I think it should have a big red warning sign on the package, and anyone asking my advice I’d say don’t do it.
. . . Apparently I drizzle on longer when I feel like death and overdue taxes. And I’d better go to bed early. I haven’t told you I have three service rings tomorrow. But only one of them is a quarter peal.
* * *
* And anyone who emails me or Blogmom and wants to know what ME is will be instantly killed, okay?^ It’s in ‘about’ in this blog. ^^ You can also google it. It may not come top of the list on your screen the way it does on mine, but it’ll be there.
^ I suspect this comes under the heading of me being ‘crusty’. Yesterday’s email writer revealed herself on the forum last night to say somewhat plaintively that she also liked the footnotes, they were just a little . . . a little . . . uh. . . . to which blondviolinist offered this excellent advice, which, as she says, has come up from time to time before:
Two browser tabs: one for the main body of the blog post, one for the footnotes. It makes everything so much easier. I just click back and forth. (On especially footnotey days, I have been known to open up three browser tabs: one for the blog, one for the footnotes, and one for the footnotes on the footnotes.) I get hopelessly confused when I try to read the blog in only one browser window.
But I wanted to add that I really, really did not mean to be getting at HeiQ and I hope she didn’t think I was. I was using her comment as an excuse to do something else that comes up from time to time on this blog, which is remind everyone why it takes the particular shape that it does: this is the blog I can write. I’m glad it has fans (thank you thank you thank you!). It is fun, I don’t deny that—especially reading forum remarks after it’s all over—but it is also an immense amount of work. Immense enough that I try not to think about it. Immense enough that if I made it more like work by doing some dignified pulling-together and rewriting I couldn’t do it. And would stop trying in self-defense.
^^ But if the links are broken you are encouraged to tell Blogmom.
** HOW MANY TIMES DO YOU HAVE TO PUT YOUR HAND IN THE FIRE BEFORE YOU LEARN IT’S A BAD IDEA? —Several times, clearly. In fact, many times. I want to be able to ring quarters. I am a dork. We move on from here.
And I’m not quite as entirely insane as I look.^ I’ve been ringing something like two more years since I stopped ringing tower quarters. Ringing is therefore two more years’ worth of familiar which means the mere grabbing hold of a bell rope is two more years’ worth of Less Automatically Scary and Stress Making. And practise quarters—which are less scary and stress-making than proper, serious, going-for-it quarters—have fallen into disuse in this area, and I’m trying to fish them out of the back of the cupboard and dust them off as a concept. If practise quarters turn out still to be a few triathlons too far for me, I’ll try again in another couple of years . . . by which time I should be really good at organising the frellers, since I am in theory making this into a regular occasion for anyone who’s interested.
Meanwhile . . . I have a second (practise) quarter peal next Friday. Eeep. But Friday is six days away. I don’t have to worry about Friday yet.
I’m only on the treble tomorrow. I ought to be able to ring the treble on my head. Or, you know, lying down, if there were a way to persuade the ungleblarging rope not to catch round the bedposts.
^ Stop that giggling.
*** It’s the same sort of thinking that produces deathless wisdom like that all a lesbian needs is a good boffing from a bloke. I would like to offer the counter-generalisation that any remark that begins ‘All you/they need to do’ spoken in hearty manner is going to be bogus. And probably annoying as all hell.
† And, no, I haven’t ever had it myself. It wouldn’t be the right therapy for me. And I have been close to a few people who’ve done it, and I haven’t liked what I either saw or heard of their results and their experience.
†† Barring unacceptable side effects, and my standard for unacceptable is a lot more stringent than Big Pharma’s.
††† I’m tired of the word ‘sufferer’. It’s so pathetic.
‡ And the Guardian, bless its little leftward, open minded leanings, does quote Action for ME as saying that in their poll 34% of those surveyed said GET made them worse.
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