August 23, 2005

• OMG… don’t look!

  I’ve not only got bedhead, I’ve got pillowface.

  I’ve mentioned that Koji spends most nights curled up by my feet. 
  Or, at least that’s the way he begins the nights.  Often I wake to
  find him stretched out beside me with his snoot in my face.

  This morning it wasn’t just Koji and me.  Fat old Muffin was curled up on the other side of the bed, too. 
  I was still half asleep, but  I thought it was worth documenting,
  so I got Doug’s attention and he came with the camera.

  The commotion disturbed Koji, so he moved up and curled up on Muffin’s
  pillow, crowding her over against the wall..  As Muff was getting
  ready to leave in a huff, little orange Nemo decided she wanted to be
  where all the action was.  The next move was me shoving Koji off
  the covers so I could get up.

  ---

  Yesterday’s blog with the ME/CFIDS symptomlist
  turned out to be very beneficial to me.  I wasn’t in any shape
  yesterday to read the whole thing.  I just skimmed it, then read
  it fully this morning.  I got some reassurance from it, as well as
  some further confirmation that I’ve had this disorder most of my life
  even though I still haven’t been officially diagnosed by a real
  MD.  My healthcare provider, a physician’s assistant, agreed with
  my self-diagnosis after I took her an armful of stuff to read, but she
  is still calling it “fibromyalgia” because that’s listed on her little
  checklist and ME/CFIDS isn’t.  Damn CDC and NIH, anyway!

  The reassurance I derived from it was from finding several symptoms
  that I have, which I hadn’t known were associated with the same old
  familiar syndrome.  It is oddly reassuring to know that I’m
  afflicted (I like that word, Mike,
  thanks.  Too many of my fellow-afflictees call themselves
  “sufferers” and too many other sources call us “victims.”) not with
  several different and new disorders, but just the same old one I’ve had
  most if not all of my life.  I’m also inclined to take some
  consolation from the thought that one doctor’s long-ago diagnosis of
  lupus might have been wrong and that I’m not simply in remission from
  that, waiting for it to kick in again and kill me.  With a pack of
  dogs chasing you, there is some comfort in thinking at least it’s not a
  wolf.

  Where I found the latest bit of support for my theory that it has been
  undiagnosed and misdiagnosed through my whole life was largely just in
  that many of those symptoms have been present as long as I can
  remember.  But one thing in particular that came as news to me was
  the part where it said that in the early stages we tend to sleep more
  than is normal, and then later on to have insomnia.  That
  fits. 

  I slept through the late nineteen-fifties and early ‘sixties.  As
  a child, I had needed more sleep than most kids and was very hard to
  awaken unless I’d gotten 11 or 12 hours of sleep.  I never got
  that kind of sleep on school days because my parents couldn’t get me to
  bed before seven PM.  I declared it unfair, when my friends had
  bedtimes of 9:00.  When not in school, I’d be up late and sleep
  most of the day. 

  Later, when I worked at regular jobs, I preferred night shifts. 
  I’d sleep from around 2 or 3 AM to 3 or 4 PM except when I was holding
  down two jobs.  Then I’d use three alarm clocks and a clock radio
  to get me up, and I’d sleep on my days off.  In the 1970s, when I
  started sleeping a lot less, it was like I’d been given more life
  time.  I took to insomnia like a kid to candy.  There was so
  much to do, and so little time, not sleeping felt like a blessing until
  the zombie-like effects of sleep deprivation kicked in in the late
  1980s.  Now, I usually awaken several times, but I try to go back
  to sleep and get a total of at least six hours before I crawl out of
  bed.  That diminishes the symptoms some.

  ---

   Okay, dingus6 wanted the
  Tallulah story.  I wish I could tell it in her voice and from her
  memories.  I remember Tallulah from radio when I was a kid. 
  Her voice was husky and sultry and her laugh so suggestive it sent
  chills up my spine.  She was, to me then, the ultimate
  sophisticate.

  Augustus
  John, the painter, was a fairly interesting character, too.  He’d
  gone to art school but his work was neither distinguished nor
  successful until after a diving accident in which he received a head
  injury.

  That changed his life and his personality.  He did some traveling,
  grew a beard and changed his style as an artist.  He went from
  reserved to flamboyant.

  I don’t recall where I found this photo of Tallulah with John, but it
  intrigued me and still does.  He looks like a wild man, and she
  seems uncharacteristically subdued, even maybe intimidated by
  him.  I would love to have been a fly on the wall during her
  sittings, as he painted her.

  The
  time was 1930 and Tallulah was a stage actress in her late
  twenties.  Later in her life, this portrait was said to have been
  her most prized possession.  It now resides in the Smithsonian’s National Portrait Gallery .

  For more pictures of Tallulah, plus memorable quotes and more, visit this fansite .
   

  • 9:27 pm
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