January 21, 2003

• Flare-Up

  
  

  Have you ever dreamt of doing something, and then thought that you had actually done it?  I did that yesterday.  I had a dream about blogging, and thought after I woke that I had done a blog telling about my latest fibromyalgia flare-up.  I realized before long that it was a dream, as I thought over some of the details of my dream-blog.  Too much graphic stuff, grafx I mean, not graphic descriptions, for which I’m semi-notorious.  I just don’t do that much anime in my blogs, so it had to be a dream….

  
  

  Even before I realized it was a dream, I wasn’t in any particular hurry to get online and read the comments.  When it’s an episode of the memoirs or a photo blog, I do rush to check the comments as soon as I can.  On these “health” blogs, sometimes I’d rather not read the comments.  Usually, you guys just don’t know what to say about all my ills and my pills.  The temptation, it seems, is to sympathize and that often comes off sounding like pity.  Some of my regular readers are my fibro-buddies, my companions in pain.  From them, there is empathy, true sympathy, but I find no satisfaction in that.  If anything, it hurts me more knowing that there are so many hurting people out there who understand my pain all too well.

  
  

  Last week I added a few items to my left module, including a link to a “chronic invisible illness awareness” website.  As much as I would love to be able to hide my illness, as much as I hate the very idea of defining myself by my illness, the fact is that the illness has defined much of my life.  I hate that.  It’s not just that I don’t want to be handicapped.  I want to be seen and accepted as a whole person, able and capable.  I’ve worked extra hard at developing compensatory skills that would allow me to function at a higher level despite the illness.  I turned my unemployability into an asset of self-reliance.  To that extent, I’ve been successful.

  
  

  However, there are still times when all that work and preparation fall apart.  When a bad flare-up hits me, my level of function drops dramatically.  At least, as of about three years ago, I no longer whimper and snivel with pain and run for the painkillers.  I’ve known the painswitch technique for close to two decades, but for the longest time when the pain was at its worst I would forget to use the technique to neutralize it.  Brain fog and forgetfulness go along with the other sensorimotor deficits of this damned disease.   The greatest hidden blessing in the severe exacerbation I experienced three years ago was the opportunity to practice the painswitch until it became reflexive.  Now I don’t have to remember to use it.  My unconscious mind takes care of that… which is great since my conscious mind has to depend on a flawed and dysfunctioning nervous system.  Wherever the “unconscious” gets its power, it’s a reliable Source.

  
  

  Three or four days ago, when this latest flare hit me, I’d had an ordinary day.  There was no extraordinary stress, no strenuous activity, I didn’t get chilled, overheated, fatigued… nothing I could identify as a trigger.  So it came as a shock when I started to get up to get a glass of water that evening, and couldn’t walk.  I rose partially from the seated position, flopped back, struggled to my feet again, and shuffled (the “Igor” syndrome:  *drool* “Maaster…Maaster….”) to the kitchen, dragging one foot behind me.  I had begun to get used to coordination, long easy strides, grip strength… “normal” function, in other words.  There was some emotional pain added to the myalgias that night as it was brought home forcibly to me that I’m still a sickie.

  
  

  This one was a bad one.  I stumbled and fumbled through the fog, struggling to remember to eat right and take my meds.  I made a few sad and stupid attempts to write.  I was even nuts enough to get the new camera out, take some pics, install the software… and fail dismally to get the pictures saved to my computer.  I’ll have to get back to that sometime.  I had been putting off the paperwork of paying a few bills and so I had to do that chore in my impaired state.  I fervently hope I got it right.  I spent a lot of time at the PlayStation, going mindlessly through one of my oldest and least demanding games, just killing time.  I’ll be getting back to that as soon as I’m done here.

  
  

  In addition to the usual pains, this time I had one I’ve experienced only rarely before:  vulvodynia, the dreaded VV as it’s usually abbreviated on the fibro forums.  It’s a tearing pain in, around and through the crotch, and I thank all the gods that I have the power to make that pain go away.  But nothing takes the stiffness and incoordination away.  Even without pain, this crap is plenty bad enough.  This time my eyes were also involved, with the “sticky tears” phenomenon, the blurring, difficulty focusing, and pain behind my eyes.  My balance was off, I was dizzy and dopey (which might have been okay if I’d been doped up, but is just distressing and inconvenient when there’s no euphoria to accompany it).

  
  

  Anyway, troops, it’s a better day today.  I’m still not one hundred percent… I wonder how 100% would feel… never been there.  The worst is past.  I’m back.  Watch out, world. 

  
  

   

  • 2:50 pm
  • 16 Comments