December 13, 2003

• Another Fog Blog

  
  

  In a comment to a recent blog of mine, my sweetie said it was, “chaotic and all over the place, just like real life,” or something to that effect.  That sort of communication seems to be all I’m capable of, currently.  As I lay in bed this morning, wishing I could get back to sleep and fearing–no, make that “knowing, but not wanting to admit”–that sleep wasn’t coming back, and without the energy and coordination to roll out of bed, yet hurting too bad to stay there, I thought I should probably blog about it, even if I was doomed from the start to make a hash of it.  (And, I might as well point out that painfully run-on sentence, because sure as anything Greyfox will tell me about it anyway and if I edit out every little awkwardness and error I notice, I’ll never get this thing done.)

  
  

  Comments from readers who themselves have fibromyalgia, or whose friends do, gives me lots of food for thought, blog fodder.  In particular, Sarah‘s feedback has stuck in my mind.  She expresses herself so well, and has recently made some discoveries in the course of her illness that it interested me to learn were the illness, had a name, when I started reading about other women’s experiences in the online fibro forums a few years ago. 

  
  

  Sarah mentioned, if I recall correctly, that her ribs hurt from breathing.  Yep, they call that particular symptom costochondralgia, so now when you peruse one of those loong symptom lists and come across that word, you know what it means.  The intercostal muscles are that meat you find between rib bones, that area is just loaded with connective tissue and it is in the connective tissue, the fibers in fibromyalgia, that our pains erupt.  Many medical doctors have misdiagnosed costochondralgia as heart disease and treated it as such.  I took nitroglycerine for it for years before some other doctor said my EKG was normal.  It wasn’t until years after that, that I finally diagnosed myself with ME/CFIDS.

  
  

  It is so much easier to say “fibro”, isn’t it, than myalgic encephalitis / chronic fatigue immunodysfunction syndrome?  It’s surely much easier to type.  And what kind of acronym is meckfids, anyway?  …or maybe it’s messfids–yeah, that fits.  But fibromyalgia is a nineteenth century word, something I suppose some doctor liked better than “rheumatism”, which is what most folk called it before that.  “The rheumatiz,” as they called it in my family, runs in my family.  Rheumatologists are the specialists who treat it.  That’s kinda ironic, since my dictionary says “rheum” is a “watery discharge” from the nose and eyes.  Ironic because one of the signs of this damned disease is that the discharges thicken, become less watery, and our eyes get blurry, our noses congest on whichever side we tend to sleep on, our chests congest too.

  
  

  “…whichever side we tend to sleep on,” should read, “to lie on,” I guess.  Sleep is part of the problem.  Correlation does not imply causation, but in this case it appears that the disorder causes disrupted sleeping patterns and a lack of sleep contributes to a cluster of other symptoms.  My tendency has always been, when I can’t sleep, to get up and do things, anything, to make the time pass more quickly than it does if I just lie there.  It is a tendency I’m trying to transcend, but it is damned difficult when lying there in bed is so painful.

  
  

  Sometimes I need to get moving, to “warm up” those muscles and take the pressure off the hips and shoulders, just so I don’t turn into a blubbering puddle of tears.  For several weeks now, I’ve had numerous periods when I’ve been awake for 24 or more hours, slept somewhere between two and five hours and then got up for another round-the-clock PS2 marathon.  That’s only because the game controller is more ergonomic than, say, a book or a Rubik’s cube or a jigsaw puzzle, all forms of pastime that I’ve resorted to since childhood, to handle the needs of a racing brain in a body that won’t go as I order it to.  After over half a century of this, I’ve found that for me electronic gaming combines mental challenge with physical ease better than anything else.

  
  

  That the disease runs in families does not mean it is genetic.  There may or may not be a genetic predisposition to it.  No gene carrying it has been identified yet.  Someone drew a tentative inferrence from my blogging that I’d had this thing all my life, and asked an implied question.  I guess I have had it all my life, maybe.  I have been sick all my life, with immune dysfunctions that had caused my earliest pediatricians to pronounce a poor prognosis for me.  They said I wouldn’t live to grow up, and anyone who sees the hours I spend at the PlayStation would probably say they were right.  But I’ve grown old if not up, despite their prognosis.

  
  

  The earliest identifiable symptoms besides the crazy immune system that had me delirious with fever from measles, mumps, and chicken pox several times each (to the frank incredulity of some of my doctors), were “growing pains”.  (BTW and just FYI, my final episode of “childhood disease” was my third episode of chicken pox at age nineteen, caught from my daughter Angie.  By then I guess my body was getting the hang of that thang.)  When I started complaining to Mama that I hurt all over around the same time I started to school, she said it was just growing pains, “everyone” got them, it was normal, and I had to go to school, anyway.  Maybe in my mother’s family, in her experience, “everyone” did get growing pains, but they are peculiar enough to have made most of the diagnostic symptom lists I’ve seen. 

  
  

  One of the times when I was reading one of those lists online, a sad thought hit me.  Doug had had growing pains, too.  Then I consoled myself that most of the diagnosed cases of ME are in women.  Then I recalled that most of the diagnosed cases of depression are in women, and when you discount the post-partum variety, it’s pretty clear that men get depressed about as much as women do.  They just don’t tell their doctors, usually.  Then I started encountering some men on the forums, and then Doug and Greyfox and my ex, Charley all seemed clearly to possess the symptoms.  Greyfox recognizes this is what is making his life so much harder than it once was, Doug’s denial is beginning to crack, and Charley prefers to attribute all his symptoms to a spinal injury from the 1960s.

  
  

  Many people can trace their first identifiable symptoms to the aftermath of some accident, but not everyone.  That fourth-grade year that I spent mostly in bed came after my mother hit a sandy patch on a curve on a country road in Kansas in our ’48 Chevy coupe, flipped it end-over-end and rolled three times into a wheat field.  They didn’t have seat belts in ’48 Chevvies.  We were both banged up, but recovered.  That was summertime.  That winter when the miseries hit me, we didn’t make a connection.  I don’t know for sure that there is a connection, but that story is a lot like other stories I’ve heard and read.

  
  

  Sarah also mentioned exercise.  She said we can’t just lie there like vegies, but whatever we do we pay for in pain, to paraphrase freely.  Apparently, the perceived need for exercise, though, is all in the mind.  One interesting little factoid turned up in some Australian research on CFS, chronic fatigue syndrome:  our muscles don’t atrophy from inactivity.  That’s because even when we are immobile, our muscles are active, sending their chaotic weak electrical signals around at random.  That probably accounts, also, for some of the unexpected things our bodies do when we are in motion, like going south when we’re headed west, or flinging something clear across the room when we only wanted to pick it up.  One woman on a forum said she never picks up her grandchildren.  She sits down first and lets someone put the babies in her lap.  Wise gramma, that one, and fortunate babies.

  
  

  If anyone read that reference to CFS and thought, “but I thought we were talking about fibromyalgia,” remember, it is not fibromyalgia.  That label is on its way out just like the rheumatiz.  Three recent international symposia on the disease have declared that the better name for this disorder is ME/CFIDS.  Not everyone exhibits all the symptoms all the time, but the overwhelming majority of us, at one time or another, exhibit symptoms of myalgic pain in connective tissue, chronic fatigue, and immune dysfunction.  I first heard of the connection of the immune system stuff with the rest of it from my dentist, as he read my new patient form and noticed that I’d had lupus, in remission for decades.  After he looked at my dental X-rays, he pointed out the autoimmune tooth resorption that has been plaguing me throughout my adulthood, and said it was all part of a pattern with the lupus.

  
  

  Here I sit, in a body that at this moment is eating its own teeth.  Impaired neurological function makes any physical or mental task extra challenging.  I waste days playing games because at least if I mess them up there are no harsh consequences.  That’s the psychological cost of this disease for me:  I’ve grown hesitant to plow through in these foggy flareups and risk messing things up.  Long years of painful experience leave me this way, and I don’t like myself very much for giving in to such fears.  I’m sick and tired of cleaning up the messes I tend to make when I get sick and tired.  As I lay there this morning, trying to talk myself into giving up on sleep for yet another day and crawling out of bed, I did some soul searching.  If this disorder has injured me spiritually, I don’t see it.  Physically and mentally it gets me down sometimes.  I’m grateful that it’s only sometimes, and I’ll take that as a sign I’m still okay in spirit.

  • 5:05 pm
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