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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Tuesday, December 11, 2012

Remissions and Flares

In days gone by, when I became sick with CFIDS/ME/CFS, fibromyalgia, myofascial pain, migraines, insomnia, restless leg syndrome and seemingly everything but the the Ebola virus, no one spoke of flares nor relapses. Instead, it was all talk of remission.  And boy, did I ever feel like a failure!  I mean, did I really have to get sick with an illness which was "invisible," as they call it these days?  Did I really need to come down with an illness no one had ever heard of?   And the real pain in the patootie was that it most often felt as  if of those who had heard of CFIDS and fibro (etc., etc., blah blah blah!) almost no one believed it was real, layman and doctor alike.

I was different from the few people I'd met who did have fibrositis - as fibromyalgia was called in the earliest days - and the "Yuppie Flu" - as CFIDS was disparagingly called.  I didn't fit into any clear-cut pattern.  These were the patterns that were being observed by some mighty astute people - and I mean absolutely no sarcasm when I say "astute."  I really was one lucky gal with some of the doctors who treated me.  Yes, I had a whole bunch of "winners" (sarcasm here) but I also found some great ones as well.  

And everything was a puzzle.  Patterns were being dissected and sought by the "good guys."  And there was one pattern back in the day which was perhaps even bigger than "post-exertional malaise" is today:  it was "gets remissions."  (Hard to believe that one, ay?)  Doctors who HAD heard of CFIDS and/or fibro somehow weren't sure I met whatever criteria were available back then, especially since I'd never had the "infamous" remission.  And then just to make things that much juicier, no one seemed to think that I fit yet another pattern: I just kept getting worse with each passing year.  Instead, one was to stay stable.  Miserable, yes, but on whatever keel you found yourself once you first became ill.  And then, the final blow that is near and dear to all of us females: I recall that I was a bit plump when too many were thin back then.

But I fought all the stereotypes and in a sense I won, though who would want to win this prize, I'm not quite sure.  Certainly not me, ever!

My point?   Back in the day, after dealing with all of this CFIDS and fibro "nonsense," which had gone undiagnosed for entirely too many years, I finally entered the ranks of CFIDS and fibromyalgia by going into a spontaneous remission.

Oh, those were the glory days.  Looking back they were such heady days.  Even then I realized how lucky I was.  

I was so convinced that I was finally cured and I just had to fly.  After all, even a good friend of mine whose husband DID indeed recover from CFIDS, though she did not, assured me that I was cured.  I was so convinced that I even went back to school and decided to start over again in some ways.  I now wanted to change directions and work my way towards an advanced degree in psychology, a major I had seriously considered while in college the first time.  I'd chickened out the first time around for the silliest of reasons: fear. Psychology was the "in" thing back in the early '70's and the course that weeded out the wheat from the chaff was the very dreaded statistics course.  I was just too unsure of myself as a young student and thought that I'd never be able to pass that obstacle.  Since I loved literature, I chose that route.  But I'd always loved psychology: why else would one want to analyze characters in fiction, no?

It was precisely because I had chickened out of the statistics course that as soon as I became convinced that I'd been cured - or at least was in a great remission - that I thought I would face my demons and go for it.  I realized that life was way too short.  Cliché, I know, but how true.  

And so, I'd lost weight and looked ten years younger because I was no longer in almost-off-the-charts pain.  I took a couple of courses and though I had to study harder than most, that didn't surprise me.  I'd always had to study harder because I'd always been riddled by test anxiety.  However, now I worried that as a "mature student" I would be at a disadvantage, especially since the "mature person going back to school" was still a rather new concept at the time.  Instead I aced my exams.  My professor in the two courses I first took said she'd never seen anyone score 100% in objective tests multiple times - plus get the extra credit.  Headiness indeed!

I finally decided to take the dreaded statistics course.  OMG!  Sometimes I marvel at my stupidity!  I thought it would be such a smart move to just take the one course during the summer - not realizing how accelerated a summer semester would be!  Somehow, I muddled through it - often by waking up hubs in the wee hours with questions that I couldn't resolve alone.  And though the final exam took me five hours - I not only got the highest grade, but also managed to throw the curve off by such a high number that the professor used the next highest score as the curve by which to assign grades.  I thought I was on my way!  Nothing could stop me now, thought I!  (Smug little thing that I was!)

And then the remission was over.  Seemingly overnight, I was back to the way things had been, but about 500 times worse.  Over the years I've seen theories come and go and they will continue to do so.  

And yet how times have changed!

  • Mature students are commonplace now.
  • People talk about flares, which last a few days or weeks.  Little is said about remissions these days.  Except for that summer in the 'mid to late '80's, I've been in a constant flare since I came down with the flu back in  '75, each year becoming progressively sicker.  I have "good" days and "bad" days, but they are always horrid days.
  • The medical profession expected us to get better because they felt everything was psychological.  
OK: halt!  I must stop here and backtrack.  I once had a heated debate with one professor, who did not know me as me, but knew who I was. We live in a small town and everyone seems to know everyone or OF everyone. He found me in the cafeteria one day and plopped himself down.  He then proceeded to lecture me (why me pray tell? what did I ever do to HIM?).  According to this some-sort-of science-not-psychology professor, I had an imaginary illness and used the fact that I was suddenly in school, acing exams, while a mom of three and working for my hubs part time, as proof that whatever I had had was all psychological, if not psychiatric.  He even used my weight loss against me as proof of what self-esteem can do to "cure" one of those "made up" illnesses.  OK: off of rant and onward.

Yes, indeed, I thought I'd never have to be in the "yuppie flu" category again:
  • I was on a roll, getting better every day, happier than I'd been in well over a decade, and the remission lasted for one spring semester and one summer semester - about 5 months, in all, if I'm not mistaken.
  • I immediately came out of remission.  There was almost no warning.
  • The old psychologist from the cafeteria ran into me one day at the local supermarket and made up some mumbo-jumbo that as a student I suddenly wasn't getting the attention I hoped for, so I became sick once more for attention.
There are easier ways to attract attention.  A PhD would have been nicer - and much easier.

Today, seeing how psychology and psychiatry are both trying to muscle in by throwing us back into the psychiatric wastebasket, I have to wonder: how much has really changed?

As always, I hope everyone's feeling their best, only better.  Ciao and paka.

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