More about ME . . .

 

 . . . Most of which regular blog readers will have seen before. 

Mrs Redboots posted a link in the forum last night, to a blog post by a friend of hers who also has ME: 

http://dawnknits.livejournal.com/13423.html?view=40559#t40559

Much worse than mine.  As I keep saying, mine is a mild case.  I know what she’s talking about though—I had eighteen months on the sofa when I first went down with acute ME after two years of regularly recurring glandular fever, which is a very common lead-in.  But then I started finding things that worked for me, and I started being able to get up off the sofa occasionally.*  And oh, glory, how I know about things like avoiding your kind supportive neighbours because you haven’t got the energy to chat.  You get horribly selfish with a disease like ME—or you may do—because suddenly you have so much less livable life at all, and you can’t bear to waste what little is left to you.  I’m a cranky introvert anyway—even in my pre-ME days social stuff was tiring, even when I enjoyed it.  Now?  . . . Don’t even ask.  It’s hard to be a nice person when you have a chronic freller. 

            I want to put in a word on the well-meaning but clueless world’s behalf however.  Dawn mentions acquaintances saying jovially that they’d like a ride in her stair lift, that it looks like fun.  Well, I’d snarl too, because I’m not good at being patronised, and of course you wouldn’t be using a stair lift if you didn’t frelling have to.  But . . . there’s another thing that happens, and sometimes I recognise it when it does:  the person who puts their foot in it may be trying to include, or re-include, you into the human race.  Oh, a stair lift, oh, okay, no big deal, it looks like fun.  From your angle it is a big deal.  From their angle, they may be trying to say that it isn’t—in the way that counts.  They’re trying, clumsily, to close the gap between you:  to say that the important thing is that you’re both human beings. 

            I get something like this kind of a lot when I am so unfortunate as to have to try to share a meal with someone.  Uggh.  I’m dairy intolerant, chemical sensitive, and on the rheumatism diet,** and when my digestion is in a bad mood (and it is more than it isn’t) I avoid gluten too.  You’ll have to take my word for it that at home, with my organic grocery boxes coming twice a week, it’s not that big a deal.***   Out in the real world . . . I am hell to feed, and I rarely enjoy the attempt.  Which leaves me, sometimes, reluctantly having conversations with people who stare at me, trying not to let their mouths drop open at the idea of not being able to eat pizza or brownies or milk in their coffee† and after a dumbstruck silence they’ll say something like, Oh.  Yeah.  Um.  My sister-in-law is allergic to spinach.  So we can’t have spinach quiche when she comes to dinner.  At which point you have a choice:  you can kill them.  Or you can recognise they’re trying.  They’re trying to close the gap between you.

            Uggh.  Of course, you’d rather there wasn’t the gap. ††

            Slightly similar, in that it’s a perspective thing, is something from the article I posted the link to last night, that I was going to mention and then, because I had so many other things to moan about, I didn’t get around to.   Someone told the journalist anonymously that a GP at her clinic had suggested that she take up meditation as therapy.  I may be reading this wrong, but my impression is that she—and the journalist—felt that the GP was telling her it was all in her mind.  But . . . it sounds like a good idea to me.  It’s well known (isn’t it?) that a regular discipline of meditation has enormous physical benefits—as well as calming and centring your butterfly mind.  ME is a real disease—we’re not whiny self-absorbed victims who only need to get a grip—but mind and body are one critter.  Any disease is a disease of the body and the mind.  Let’s not forget that, in our necessary attempts to get the respect—and the research—that we need.††† 

* * *

* In my case chiefly vitamins, homeopathy and Bowen massage.  I had a friend with fibromyalgia^ who sent me to her doctor.  For which I am still, twelve years later, grateful, since he took me seriously—and started me on vitamins.   The very first thing that made a difference to my pain and energy levels was magnesium supplements.  This won’t be part of everyone’s answer but it was the first thing that gave me some hope that there was something that I could do—that there was a way to alleviate some of the worst symptoms.  And I remember the terrifying shock of that first small improvement—the shock of hope.  This was also years before the NHS had been dragged, kicking and screaming, into recognising ME as a real disease.  My friend’s nice doctor was private, and I couldn’t afford him after the first few visits—and my NHS doctor ‘didn’t believe in ME’. 

^ Speaking of neuro-immuno-whatsits as syndromes:  fibro is another one.  I read up on fibro too because the overlap with ME is considerable, and the boundaries of both are fuzzy.  

** No tomatoes, potatoes, eggplant, peppers, or (weirdly) mushrooms, except Shiitake.  They’re all nightshades, except the mushrooms, but mushrooms are still on the list.  Dairy is on the list for some people—turns out it is for me too, but I was already off it for other reasons.  But I gave up my once/twice a year ice cream blow outs when they started giving me severe joint pain.  Feh. 

*** Peter is mostly pretty tactful about eating the stuff I really miss, like toast, or ice cream, when I’m not around.  This is not a household rule, however, nor is the ice cream hidden at the back of the freezer or the bread in a cupboard I never look in.  I don’t want any more walls around me than I absolutely have to have, even when they’re for my benefit. 

† I’m violently allergic to coffee.  Just by the way. 

†† Personally I do have a lot of trouble with the ‘you don’t look sick!’ thing—which I also get kind of a lot, because I don’t (usually).  This presses my buttons so hard that I can’t tell if this is another clumsy effort to close the gap between me and the healthy moron who just uttered those words, or whether they are telling me I’m malingering.  And I guess that as I’m at the high-functioning end people have trouble with my issue about driving:  driving is exhausting because of that constant, split-second awareness you must maintain behind the wheel, and that healthy people don’t even notice they’re squandering.  I have to kind of crank myself up for it—and I can do it, but it costs.  So I do it as little as possible.

            I suspect that my fury about the enforced-exercise so-called ‘treatment’ is partly fuelled by the fact that morons who know or recognise me as someone who is ‘naturally’ physically active seem to think that it would suit me—that I just need a little prod toward pulling myself together again.  This is not an attempt to close the gap.  This is being a flaming asshole.  The irony is that—see:  Lack of Slack Syndrome—that you do need to keep as physically fit as your illness allows because it makes good days as good as you’re capable of and it’s a fragile but crucial buffer on bad days.  Normal healthy people can do their twenty minutes’ exercise three times a week and then go for a fifteen-mile hike on the weekends.  I can’t.  I do a couple of hours a day, every bloody day, with attendant hellhounds—and some days we cover seven or eight miles.  Sometimes we cover one.  Sometimes we keep going a clip (rather to hellhounds’ annoyance.  They like mooching).  Sometimes we sit down a lot—or, lately, with the drought rivering past our knees, lean.  I try not to force myself a micro-millimetre past what my body is willing to do that day—but I try not to do much less than a micro-millimetre of what it’ll bear either. 

††† And one of these days I will take a deeeeep breath and write about depression.  Do I know about depression?  I sure do.  Speaking of uggh.  Very, very big uggh.