September 23, 2004

• Phases and Stages

  So, my friends, are you doing anything special to observe National Invisible Chronic Illness Awareness Week?

  No?  Well, that’s okay.  Unless you happen to have one of
  those invisible chronic illnesses, or you love someone who does,
  where’s the attraction?

  I have good reason to observe the “Awareness Week”, and I have been
  doing so.  I’ve been observing myself, increasing my awareness of
  my illness, and reflecting on the course it is taking.

  During the early stages of ME/CFIDS, before I had a reliable diagnosis,
  my mother took me to many doctors.  For me, the syndrome began in
  infancy or early childhood and first manifested with severity in
  elementary school.  Symptoms came up one, two, or three at a time
  and would receive one or several diagnoses and various treatments, some
  of which relieved symptoms and had nasty side-effects.  Some
  didn’t relieve the symptoms at all, but caused interesting new ones and
  brought on new drugs to fix the new symptoms.  Perhaps the best
  drugs of all, in retrospect, were the ones that had no effect at all.

  During that stage of the illness, my major reaction to it was
  fear.  There was some self-pity involved, too:  “Why
  me?”  I had not yet really started wondering what was going on in
  my body, because I believed the doctors and accepted their words for my
  condition.

  After I was married, when I had access to military doctors and
  hospitals, I went through some tough times trying to convince a bunch
  of doctors that I was physically ill.  They thought the shortness
  of breath, fatigue, and other symptoms were all in my head until an
  allergist heard about my case  (in a morbidity and mortality meeting during one of my stays in a psych ward) and did some tests.  That got me out of the loony bin that time, and I’ve never been back in one since.

  The next phase of my life was characterized by fewer doctor visits and
  more self-medication.  I discovered that methamphetamine made me
  feel and perform like a normal person — until its effects wore
  off.  Then I learned what depression was like.  I decided
  that the debilitating effects of the disease (which was still at that
  time just a disparate set of symptoms with a bunch of different names
  and no umbrella diagnosis) were preferable to the toxic effects of
  speed and the legal repercussions of street drugs in general.

  About thirty years ago, when I was about thirty years old, some
  irresponsible prescription writing by a Doctor Feelgood sent me into
  seizures, precipitating the worst exacerbation of my disease to
  date.  That event also began a period of about a decade and a half
  that I avoided doctors and studied natural healing.  I learned a
  lot, and eventually came up with the “fibromyalgia” diagnosis, then the
  next time I was in the local health clinic, my provider there agreed
  with my diagnosis.  After I got internet access, I expanded and
  updated my diagnosis to myalgic encephalomyelopathy / chronic fatigue
  immunodysfunction syndrome, the terminology preferred in the
  international medical community, over  the U.S. CDC’s “fibro”.

  One of the best things about this disease, perhaps the only positive
  thing besides the fact that it’s not necessarily fatal, is that the
  symptoms come and go.  I have good times and bad times.  When
  I was relying on medical help, that was a problem.  It made the
  doctors think I was faking and malingering.  I mean, sick people
  are supposed to stay sick, or either die or get well, not get well and
  then get sick again, eh?  But now that I’m more self-reliant, I
  appreciate the remissions and use them to have a more nearly normal
  life for a while.  I get things done.

  Things still have to get done, even when the remission is over and
  relapse comes on.  In earlier phases of my life, I’d stumble
  around in a fog with little awareness of how impaired I was.  That
  got me into lots of messes.  It’s not so bad now that I’ve learned
  to recognize the fog and minimize the messes.  Until recently, I
  wasn’t very good at pacing myself either.  I’d go full-speed until
  the fatigue hit.  It felt like running into a wall. 
  Poleaxed, I’d go down in flames.  How’s that for a mixture of
  metaphors?  Anyhow, maybe you get my drift.  I used to behave
  during my brief remissions as if they were lasting cures.  Now I
  know better, and now I use my available energy sensibly and sparingly,
  doing the most important things first, and then when the work is done,
  if I still can, I dance.

  Today is the third Thursday in a row that I haven’t made my regular
  trip into town.  I’ve stayed here at home for three weeks, not
  because I was too sick to drive down the valley, but because I knew
  that if I went I’d be too sick when I got home to get the work done
  that needed to be done here.  I’m putting first things first,
  something I’ve learned in my 12-step groups.  It has been rainy
  for a week or so, and I’ve been concentrating on indoor work. 
  This morning, the sun is at this moment burning through the fog, and I
  can see blue sky.  After I post this, Doug and I will go up the
  ladder to the roof and clean the creosote accumulation out of the
  stovepipe.  For this:  for the security of knowing that we
  won’t have to put out any stack fires for a few months, I weaseled out
  of driving the rehab van.

  In a perfect world, or even in this one if I were a perfect person, I’d
  be able to do both and I wouldn’t have to deal with feelings of failure
  and inadequacy.   But this is the real world, and I’m the
  real me.  I’m relatively adequate, doing better now than I have
  during some phases of my life.  I just got another reason to feel
  okay about staying home today.  George the wood guy called to say
  he’d deliver our firewood today, if I was going to be here.  On a
  “normal” Thursday, I’d be gone or preparing to go, and Doug would be
  asleep.  We might have missed the call, delayed the delivery, and
  could have run out of wood.  Life is good.
  

  • 2:16 pm
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