August 25, 2011

Due to the exigencies* . . .


. . . of hellhound digestion I haven’t had anything like enough sleep in three or four nights—last night further exacerbated** by the . . . er . . . exploits of Pooka.  Gabriel, true to his word, rang me first-office-thing this morning, which was only about four hours since the last time I’d gone back to bed, and the first time I’d gone to bed wasn’t that long ago either.***

            I had just enough time to take hounds for a hurtle . . . well, stagger . . . among the raindrops† before Gabriel turned up in full archangel regalia.††  Meanwhile, Pooka, having crashed last night with a charge of about 60%, had self-immolated to red line brink of destruction when I plugged her in this morning just to see if anything had happened overnight.  Yes.  Apparently we were here as on a darkling plain, swept with confused alarms of struggle and flight, where ignorant armies clash by night.  Gah.  She started demanding to talk to iTunes and I said, not till Gabriel gets here, sweetie. 

            The good news?  I have a functioning imp of horror—I mean, iPhone, again.  The bad news?  Not everything came back.  Settings have disappeared.  Texts and phone messages have disappeared.  I won’t know if any aps have disappeared, I suppose, till I look for them and they’re not there.  I know they should still be in the back-up on the laptop—but the laptop has one or two interesting new issues too and Outlook has eaten half my address book again.  Gabriel has no idea why whatever it was that happened, happened.††  But he couldn’t do all the diagnostics he might’ve because the broadband at the cottage is the pony and trap version of Warp Seven.  And the pony is lame.  We spent the hours waiting for stuff to load (or to refuse to load) discussing important world events‡ and the weirdness of being as dependent on all this inexplicable technology as most of us are these days‡‡—you may not have the book you want, but at least you know how to use the book you have:  Open.  Turn pages.  And said pages are unlikely to drop out overnight, or the ink suddenly to turn invisible. 

            I think I’ll spare you the description of tonight’s handbell session. . . .             

* * *

* There are other ‘ex’s that would apply here.  But maybe not in a family blog. 

** Speaking of ex- words. 

*** This is of course very bad for anyone but it’s seriously surplus to requirements for those of us with chronic ratbaggery in our lives like ME.  I tend to go the dizzy-and-hallucinating route.  If you hold up three fingers I’ll say ‘five hellhounds’.  No, make that ‘five hellhounds—eeeeep.’ 

            But speaking of ME, several of you tweeted or emailed me links to your papers’ reports on this story.   This is from the Guardian/Observer:   And since the link, for some reason, doesn’t give you much of a clue, the headline reads:     Chronic fatigue syndrome researchers face death threats from militants:  scientists are subjected to a campaign of abuse and violence.  And I’m all, What?  This is from last weekend, and I meant to blog about it, but I’ve been too . . . ahem . . . tired.  But . . . what?  We ME-ers have enough problems juggling our lives with our energy levels, I would say that a useless vendetta is a damn poor choice for limited resources—and furthermore ::gross oversimplification alert:: projecting rage and frustration at what’s happening to you on the people who, very possibly bumblingly and wrong-headedly, are looking for answers shows at best a lack of self-awareness . . . and ::soapbox alert:: there is never any excuse for abusive behaviour.^ 

             I’m less than a fan of most of what gets called the scientific method, and don’t get me started on standard medicine.  Remember that I got my ME diagnosis several years before the NHS finally, reluctantly, and with much audible foot dragging and dissention in the ranks, declared that ME/CFS was a real ailment and we weren’t all just malingerers who should pull ourselves together and stop whining.  I received a lot of patronising and/or dismissive advice from several NHS clowns before I stopped wasting my time listening.  But I still am, or would be, grateful for any crumbs of evidence or diagnosis that the lab coats may throw us.  Where I do get extremely testy is when some blinkered swanker starts declaring This is what you MUST do.  If you do it you will be CURED and if you don’t do it it’s because you are a whining malingerer.  Oh yes and if you do it and you’re worse it’s your fault.  Thanks ever so.  I’ve ranted to you before about the gradated exercise treatment plan—apparently it does help some people.  But it’s far from the master strategy it was originally presented as—and I learned early on in my life with ME that the very worst thing I personally could do is force myself to do something when my body is saying ‘no’.  That’s the absolute bottom line—listen to your own body—and the fastest way for anyone, medical expert or average neighbourhood blowhard, to alienate me is to assume they know more about what’s wrong with me than I do—or that my practical experience is irrelevant. 

            That said . . . what the sad nutters in this article appear to be objecting to is the suggestion that there is a psychological element to ME.  Pardon me, but duh.  Of course there frelling is.  We’re all one critter, you know?  Mind and body.  You can’t separate them, and you shouldn’t try.  I’ve ranted about this before too.  I can perhaps guess where some of these people are coming from—anyone in the UK, for example, whose diagnosis is over about eight years old had to live through the whining-malingerer era—and perhaps a bit like making same-sex marriages/civil unions legal hasn’t made everyone think they’re a good idea, making ME/CFS an official medical diagnosis hasn’t made everyone stop thinking we’re whining malingerers.  But there’s always rubbish and frustration in your life somewhere.  Someone with ME merely has a label for some of it.

           But easy for me to say, perhaps.  I am mostly functional, more or less, and you learn to negotiate the sudden-collapse tightrope if you have to.  Some of it is that I’ve figured out what works for me, and I adhere to this with a deathlike grip.  Some of it is just that I have a mild case—or anyway that what kept me on the sofa for eighteen months was amenable to being moved on into a mild case.  A lot of people aren’t so lucky:  @radmilibrarian on Twitter sent me this link: 

           I admire people like him and Laura Hillenbrand enormously:   they’re on the sharp end of the ME spectrum.  But they still have lives. 

^ ‘One man wrote he was having pleasure imagining that he was watching me drown.  He sent that every day for month.’  Um.  A trained professional scientist who doesn’t know about the ‘block sender’ button on her email programme does not fill me with confidence for the results of her work. 

† Drought?  There was a drought?   I love southern England.  It’s so boring.  No earthquakes or hurricanes either.  I hope. 

†† Flaming sword.  Jeans.  Pockets full of gadgets.  He has an Android. 

††† Next time, don’t upgrade, he said.            

‡ I introduced him to Treasures of Montezuma.  He introduced me to Death Worm. 

‡‡ He claims to remember life before computers.  I don’t think he’s old enough.


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