Monday, January 5, 2009

My two most disabling symptoms

I look fine to most people, and since The Worst Illness Ever is called chronic FATIGUE syndrome, people assume the worst of this illness is being tired. It’s not

My most disabling symptom is dysautonomia, a big word for a dysfunction of the autonomic (outside of voluntary control) nervous system. It’s one of those things that regulates heart rate and blood pressure, among many other things. Mine gets mixed up. When I stand up, the blood pressure doesn’t accommodate to keep a steady supply of blood going to the head. As a result, standing is problematic. Sometimes I’m fine standing for 10 – 15 minutes, other times I have to stop in 5, while still other times I’m amazed to find myself doing things for 30 or 40 minutes. It’s truly a crap shoot: I never know which way the dice will fall. It makes it hard to plan anything more complicated than taking a shower.

When I was at my worst in the fall of 2007, even sitting was triggering the kind of dysfunctional accommodation known as POTS, postural orthostatic tachycardia syndrome, where the body tries to increase the blood pressure by increasing the flow of stress hormones to raise heart rate. What happens is that the pulse goes up, my heart starts pounding loudly (ba boom, ba boom) but the blood pressure still goes down. When I lie down, I hear my heart echoing in my head (ba boom, ba boom), and almost I want to scream in frustration.

In the distant past I could alleviate this reaction by doing upside down yoga poses (bridge, legs up the wall, shoulder stand, head stand), usually reversing the dysfunctional reaction after an hour or two, and then having to stay off my feet for 2-3 more hours. Now yoga doesn’t make much difference, but doing about 15-20 minutes of weight training—no more--does seems to help. If I get a bad reaction, weight lifting or a yoga pose that requires quite a bit of muscular exertion (like a back bend) reduces the severity of the reaction.

My second most disabling symptom is an inability to do aerobic exercise. I miss walking or biking outside, but when I tried to get back to it a year after my relapse, I came down with respiratory infections the next day. After this happened about 15 times, I saw the pattern (duh!).

It makes sense to me only because high cortisol (a stress hormone released in exercise) suppresses the immune system. It’s another sign the autonomic nervous system is not regulating properly, and the stress hormones are going bonkers. Staci Stevens has argued that nearly everything we do repetitively requires some modicum of aerobic activity, like talking, walking, thinking. I find that after an hour or two of talking to friends, or being pushed around a museum in a wheelchair, I feel odd, as if my brain is depleted of what it needs to function properly. I feel sleepy. I start yawning. I can’t concentrate. My eyes don’t focus. I often have to take a long nap. It’s a disabling symptom because it keeps me fairly isolated and close to home. I used to be an active professional, traveling to Rome and Paris and New York several times a year. Fortunately I live in a small town where I can get to a friend’s or a restaurant in 5 minutes with almost no hassle.

(NB: I wrote this post just before Christmas, 2008 but was unable to post from my Mom's)

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