fatigue - Enemy of Entropy

The NaBloPoMo prompt for today:
How do you feel when you return home at the end of the day?

I’m not sure I should have answered this one, as I doubt that my answer will be in sync with the intent of the question. I don’t leave home every day to go to work, or leave home every day, period.

However, when I do leave home, how I feel when I return depends on many factors. How did I feel before leaving? How long was I gone, and how much physical, intellectual, and emotional energy did I have to expend while I was out? Did I have to deal with anything unexpected, good or bad? How many people was I around? Were they strangers or people known to me? Did I encounter them all at once, or in small groups of one or two at a time? Was Sam with me as a buffer? fHow’s my blood sugar? Am I well hydrated? What was the weather like? Did I remember to take my regular medications? What about taking breakthrough pain medication, anxiety medication, or a muscle relaxant before I found myself in a state where they wouldn’t work very well? Did I use my scooter if there was much walking? How noisy was the environment? Was it drafty, or overly hot or cold? Did I have to drive? Was I out to do something I wanted to do, or was I doing something I had to do?

Frequently, I’m so dog-tired that I can barely drag myself in the door. I have actually fallen asleep sitting in the car, in the driver’s seat, more than once. (There are plenty of reasons that I do not drive much any more.) Dealing with the security system seems an intellectual challenge designed for Einstein. I’m easily confused and my memory is beyond poor. Even if I am dehydrated or I need to eat, I’m too tired to be interested in food or even water. If I was out for too long, or if it was a particularly stressful period, I get a fever and my body reacts as if I’m in shock. I feel like I’m freezing, no matter what the actual temperature around me is, and I start shaking badly.

So that’s how I feel most days when I return home at the end of the day, if I’ve had to leave home. I think that should go a long way towards explaining why I’m such a homebody these days! I am fortunate in that I have Sam, Katie, and others in my life, so I am able to have a fulfilling life without being very adventurous.

Some of the comments are pretty old by now, but there are certain themes that come back, over and over again. I’ve decided to answer them once, and that’s it.

ME and FMS are not “lifestyle” diseases. Researchers have found genetic, neurological and cardiological anomalies, so get off that blame-the-victim bullshit. We know better. We’ve done the diet and exercise dance. We’ve tried air-cleaners and removing toxins and natural cleansers and vitamins and health foods, and while some of them are nicer than the alternatives, they cannot cure chronic fatigue syndrome or fibromyalgia because they are not part of the cause.

While we’re at it, no, alien abductions don’t cause FMS, either. I know you’re laughing, but there really is site out there that makes such claims. No, I won’t link to it. It’s bad enough that it exists!

“Chronic Fatigue Syndrome” is a totally inadequate name for a disorder whose sufferers experience far, far, more than a little tiredness. That’s why we have a new and better name for CFS, as of January 2007: ME/CFS, or myalgic encephalopathy/chronic fatigue syndrome. The disease has been known as ME all along in the rest of the world, although sometimes the acronym was used for myalgic encephalomyelitis. Personally, I preferred one of the other suggestions, chronic neuroendocrineimmune dysfunction syndrome (CNDS), but I wasn’t on the committee.

I would happily rename fibromyalgia “you don’t want to be me” or “betrayal by entire body, taking your mind with it,” but I don’t think anybody is suggesting that it be renamed. The name just doesn’t seem adequate to its impact, though it’s a little better than some of the older names, like “rheumatism.”

To others who have said “prevention is better than cure.” Well, yes, and “a stitch in time saves 9.” Yup. I’ve got plenty of aphorisms, too. Tell me, pray, how one “prevents” disorders whose origin is unclear? As I said above, researchers have identified genetic anomalies. We have fairly good evidence that fibromyalgia, at least, has a genetic component. We’ve got brain scans showing that fibromites’ brains react differently to painful stimuli, and other tests showing that our spinal fluid has much higher levels of a neuropeptide involved in transmitting pain impulses than non-fibromites.

With that in mind, how would you go about “preventing” fibromyalgia? Advising us not to breed? Many of us have already done so by the time we’re diagnosed—and, of course, that can’t help us when we’ve already got the disease. We can use our own diagnoses as warnings that our own children may have a susceptibility to fibromyalgia, but what then? Smother them in cotton batting, to keep them from experience any stressors in life that might set off the FMS bomb in their genes?

Being fat doesn’t cause ME or FMS, either, although it’s common to gain weight after developing either disorder. I don’t know anyone who is able to maintain the level of activity he or she did before falling ill, and many of the drugs used to treat the symptoms of these disorders cause weight gain. Losing weight is even more difficult for us than for other people. Telling us that we’d feel better if we lost weight is not helpful in the least. I’ve never once heard of anyone who was “cured” of FMS or ME because he or she lost weight—and if it were happening, I would know it, because I pay a lot of attention to these things.

Even if I thought weight loss offered a “cure,” or even amelioration of symptoms, I see no reason to discuss drugs like Xenical at any length. Any drug or procedure promising weight loss will has an easy time getting approved because of our society’s hatred of fat people. Fen-phen, anyone? “Oh, the drug will kill some patients, or leave them with permanent heart damage? Hell, it’s worth it if there’s a chance of losing weight!” The ~~weight-loss~~self-hatred industry has more than enough money and power to lube their way past any flimsy little regulations standing in their way.

Diet and sports and their relation to weight are another thing all together, and beyond the scope of this blog. I recommend you to peruse the worlds of the delightful Sandy Szwarc over at Junkfood Science, who does cover that topic, frequently, thoroughly, and well.