May 15, 2004

• So glad this isn’t A/V…

  If you could see and hear me, I wouldn’t be writing this.  I’d be
  over on the sofa distracting myself at the PS2.  It’s a bad
  day.  I’m sniveling, leaking tears, stopping occasionally to just
  hang my head or hold it up with both hands, elbows propped on the
  desk. 

  To get the apology for apologizing out of the way first:

  I know it’s okay to cry.  That doesn’t keep me from feeling bad
  when I do.  There’s the matter of early childhood
  programming.  My primary caregiver was a 6’5″ (male) self-styled
  Rugged Individualist whose response to tears and whining was,
  “Don’t.”  My tears don’t start to flow until the lump in my throat
  reaches critical mass and explodes.  And Daddy’s not my only
  reason for trying to contain my weeping.  If I let it get too out
  of control, it always triggers an asthma attack.  A couple of
  times it has triggered heart attacks.  Don’t need that.

  Quiet weeping doesn’t seem to hurt.  The hard part is keeping it
  at that level.  It tends to escalate just as some others of my
  behaviors that I’m trying to moderate.  Control freak?  Not
  me.  When it comes to control, I feel like a kid with her nose
  pressed against the window of the candy store… it would be sooo sweet
  to have some.  So, as I said, I’m glad I’m here alone and can
  express myself without embarrassing myself.

  I set myself up for this.  I thought I was getting better. 
  Thursday’s town trip was the first one since early last fall that I’ve
  not taken herbal stimulants to get myself up for it.  I usually
  take a capsule containing a mixture of ephedra, green tea extract and
  kola nut before I leave the house.  It keeps me breathing and
  helps keep the fatigue at bay.  On bad days, I take a second one
  four hours or so later, in town when I start to run down.  All
  winter, I’d been using way too much caffeine, too.  That’s bad for
  my heart and has been difficult to cut back on.

  But I”ve been doing it.  Since a few weeks ago when I decided I
  needed to take better care of myself and dropped back to only one trip
  to town a week instead of two or three, I’d been able to cut back to
  just a couple of cups of coffee in the morning and none in the
  afternoon.  Thursday, I didn’t take any herbal stims, and didn’t
  drink coffee at the meeting.  We had dinner right after the
  meeting–no coffee then, either.  After dinner, as I walked into
  the supermarket, my legs were burning from lactic acid and so were my
  eyes.  I fumbled and stumbled through the shopping and got Greyfox
  and his groceries dropped at his cabin.  I even made one stop
  along the road home for a sunset pic.  By the time I got here I
  felt I’d been poleaxed, whipped, wrung out.

  The only thing productive I did on Friday was blog three times. 
  One or at most two might have done the job, but three was what it took
  to get it done.  I nuked leftovers to eat and alternated between
  reading, playing on the PS2, and napping.  Daytime naps for me are
  as rare as blue moons:  not even once a year on average.  I
  thought I’d get rested up and feel better today.

  Today I feel worse.  I woke feeling hung over, fragile and brittle
  as if something would shatter if I wasn’t careful.  My head felt
  tender and I was so sure my skull had softened that I reached up and
  touched it to be sure.  Still hard to the touch, but the brain
  inside there knows better, knows for sure that any little bump could be
  the end of me.  Need I state explicitly that I don’t drink? 
  This was definitely not an alcohol hangover, though that’s how it
  felt.  I have not been drunk for eleven and a half years. 
  That time, in the early nineties, it took me a week of nightly drinks
  and about half a case of root beer as mixer, to finish off a quart of
  Bombay Sapphire–my last binge.  Before that, there was a binge of
  one night’s partying when I got out of prison in 1971, and then a night
  of drowning my sorrows after my baby was stillborn,  followed by
  over two decades of sobriety.  I do know what hangovers feel like,
  but have given myself no cause to have one now.

  I had been hatching a blog about differential diagnosis.  I’ve
  been reading a lot of stuff about ME/CFIDS and the international
  symposium that decided the CDC’s 1994 definition was inadequate and
  amended it.  I wanted to get it all clear in my own mind and felt
  that posting it would help me do that and might help someone else in
  the process.  I’d also gotten an email newsletter with a good
  article on the differential diagnosis of NPD, the manic phase of
  bipolar I, and Asperger’s syndrome.  Maybe it’s all too much for
  one blog.  Hell, today it’s all too much for me.

  Anyhow, in the midst of studying all that stuff and trying to digest it
  into something I could post, I got so frustrated I started to
  cry.  It did not help that earlier I’d finally gotten into the
  email account for KaiOaty’s site and found another bunch of requests
  for readings, some of them six months old.  That accomplishment is
  half-triumph and half-ridiculous.  I’d lost access to the email
  months ago and couldn’t remember enough to even go to the site where
  it’s based and go through the lost-log-in procedure.  Today, I
  finally remembered that I had a link to that inbox on a page somewhere
  that I could find and I went through the lost-log-in process there and
  found the link and found that the email box had filled up and started
  bouncing mail in January.  So this morning I dealt with a bunch of
  old email, apologising and playing catch-up.

  I think that remembering to take my meds is clearing my mental fog up
  some, but that’s not necessarily helping me much.  It’s making me
  realize how screwed up I’ve been all winter, and allowing me to
  remember a lot of stuff I’ve been neglecting.  It’s a lot like
  coming down off a long drug binge, or home from a long stay in the
  hospital–or jail:  life interrupted.  The relative mental
  clarity has given me the illusion of competence, of better
  health.  I don’t know what or even if anything can turn that
  illusion into the reality of a remission.  I do know that reading
  all those clinical definitions of my disease has depressed me. 
  Reading the long symptom lists, seeing where it says “one or more” or
  “two or more” of some long list of horrible things is sufficient for
  diagnosis, and realizing that I have every damned symptom on the list, somehow makes it worse.  I can’t explain.

  But wait, there’s more.  One of the reasons I’d started searching
  through the symptom lists and clinical definitions was because I’ve
  developed some new symptoms lately.  Occasionally I have a
  persistent tremor, not just in my hands, but also feet and head, all
  extremities.  Then there’s the sobbing.  It’s some kind of
  tremor or spasm of the diaphragm.  I take a deep breath and it
  turns into a shuddering sigh like what comes in the aftermath of a
  hysterical crying jag.  If that’s in the ME or CFS symptom lists,
  I’m not seeing it because I don’t have the medical jargon for it. 
  Old familiar symptoms are bad enough.  I really don’t like having
  new ones I can’t even name.  And I don’t have an expert consultant
  to consult, either.  I know more about ME/CFIDS than any of the
  providers at the local clinic.  I’ve been downloading and printing
  out info for the PA who prescribes for me, because she doesn’t have
  internet access.

  Well, shit… enough of this.  It’s not helping me any.  I
  should probably post it privately, but then there would be no chance of
  its ever helping anyone else–if there’s such a chance anyway.  I
  guess I’ll never know, so here goes.
  

  • 8:19 pm
  • 7 Comments