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Message 13 of 17 Previous Next

Jerry--wanted to reply at least on the sympathy side if not the medical side! I've been fighting Epstein-Barr, CFS and Fibromyalgia for the greater part of my life, much undiagnosed, of course, until recently. I live with contant/pervasive joint and muscle pain. Muscle weakness hits after only minimal effort; I am also susceptible to bronchitis/laryngitis, sinusitis (more or less chronic now), strep throat and a blood circulation problem, mostly in my legs, that interferes on a daily basis with mobility and stamina. Oh, yes. And edging toward diabetes. So I feel I understand your problems. My doctors, also, over the years, have been half-hearted. One did track the fibromyalgia down, but could do little but diagnose. By others, I've been burdened with many untrue labels: I've been called OBSESSIVE-COMPULSIVE (only because I began recording my medical history and researching connections, in an effort to improve my health--this was seen as a fixation on record keeping, not as taking responsibility for my own health!) Of course, the term DEPRESSION has been invoked as nauseum. Usually, I was told I was depressed (no one ever thought to ASK if I was; they just assumed so because fatigue and depression are expected to go hand in hand. But I've never been depressed in my life, unless you want to define ordinary human frustration and lack of progress as "depression," which I don't.) I also heard, of course, labels like HYPOCHONDRIAC, IN DENIAL, WON'T FOLLOW DOCTOR'S ORDERS (I wouldn't agree to attend a pain-management clinic since I'd already been handling pain very effectively for 30 years; I would have to have been bussed 40 miles away to the event at state expense. Who benefits from that????) At some point I had to ask: OK--am I lying to myself about my health? Am I just complaining? Am I just "seeking reassurance"? Do I really like being sick and fear being well? When I looked at my history, I could honestly answer NO. My problems are physical, not mental: endometriosis, blood circulation, chronic staph infections, severe and rapid fatigue after minimal physical effort; "pretzled" joints that lock up quickly and hurt for hours or days, as though I'd been beaten up by 3 tough guys; and lab-confirmed absence of that good bacteria needed to properly metabolize food. Such problems are not conjured up merely by thinking sad thoughts. So, my one big point to you is that you still have, no matter HOW badly your body is feeling, to define yourself as a healthy PERSON. I mean, YOU don't have to be sick, inside your head or heart or mind, even if your body hurts like the devil or prevents you from doing what everyone around you can do. I believe a very sad state of things exists with doctors who deal with CFS/fibromyalgia patients right now, and that is that these doctors do not want such problems to be real, because it means rethinking how they will work with such patients. We are not fun to work with (as we all know--offering pervasive and chronic difficulties which are not clearly related to each other or derived from each other) and we don't fit into doctor's insistent demands that patients be seen for no more than 20 minutes at each appointment. So we get the brunt end of THEIR frustration at not being able to solve OUR problems with a snap of their fingers. This makes them look bad, so they have to try to make us look irresponsible or uncooperative or not really ill at all in order to prove to themselves that they are not at fault when we "complain" of no progress. I've finally learned to toss that all aside, stay sane and healthy (and goal-oriented) in my mind, and just work on the next task, whether professionally or medically or personally. Yes, it's a roller-coaster ride, and yes, our lives are not as much within our control as we want them to be. But the challenge is: did we respond to this unasked-for debilitating set of problems by becoming MORE of a person, more sensitive to other people, more aware of medical information, more patient with people who just don't get it, more intellectually and spiritually and culturally alive, more everything--than if we'd been perfectly healthy and perhaps never learned to be aware of the realities some people have to face? I don't want this bundle of problems--but I've got it. Given that, I think it's a lot more fun to spit in the face of fate and say "But I still have the freedom to choose whether to be happy and as productive as my limitations allow." If it comes down to the most selfish of the reasons I could name for wanting to fight back, it would be that I don't want the most insensitive and closed-minded of the doctors I've seen to win the day. And ANY move I make to stay in control of my life, even if the only control I have is control over my attitudes, is a right hearty smack in the face to his kind of smug condescension and unwillingness to help. ... You and your fellow e-mailers have already helped me, because hemochromatosis has never been raised in my case, and I'm going to have it checked out now to see if it might be a factor. We do know, with probably 99% certainty, that my history was aggravated by dental problems, starting with rheumatic fever when I was five, which damaged the enamel on my teeth and left my jaws and sinuses wide open to invasion, and then by years and years of increasing dental fillings (because my teeth were so soft and cavity-prone), which appear to have steadily leached, slightly but continually, directly into my oral tissues and bloodstream, very likely interrupting oxygen utilization and messing about with metabolism. It took until 1993 for the patterns to begin to show up clearly enough to be recognized as a true threat to my health, and another two years to get all the amalgams out, but the damage already done is substantial, and there may be no improvement on that front. Still, I'm confident in recommending my personal approach of being enthusiastic about life as a matter of personal choice (without ANY regard for whatever attitude someone who doesn't suffer from your same symptoms or make any attempt to understand them thinks you should feel). Taking on each day as an adventure instead of a burden makes an enormous difference, not just in your spirits, but in how clearly you can think about what needs to be done next. I hope my enthusiasms have been of at least a little use to you. In my weariest moments, I like to remember that "enthusiasm" comes from the Greek "en-theos" which means "to be possessed by God." It helps to think that someone who really IS omniscient is well-aware of what I am going through and, unlike some doctors I've not had the pleasure of, doesn't see my suffering (to whatever extent I really have suffered) as either feigned or trivial. Best of luck to you, and, if you don't have any energy left for anything else, track down some really great reading, listen to some really powerful, uplifting classical music (try Mahler's Resurrection Symphony or Smetana's Die Moldau) and THINK about them when you get too tired to do anything else. You are being made tired by PHYSICAL abnormalities. NOBODY has the right to make you tired by MENTAL abnormalities unless you give in to the confusion and poor response to your needs being made by the medical community today. Good luck and better days ahead for all of us! I wish you well.


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