Waking up is not a problem. Every day at 9 a.m., the sound of 30 or
so preschoolers screaming their Keds off blasts out of the open windows
of the daycare center below my apartment. It’s getting up
that’s the nightmare: My body feels like rubber. My mind’s in a total
fog. By the time I work up the energy to crawl out from between the
sheets, those rambunctious rugrats are practically sprouting body hair.
Considering all the HIV-related crises I’ve survived over the
years—KS, wasting, CMV—I never dreamed that common, everyday fatigue
would be the toughest one to overcome. What’s truly tiresome about my
tiredness is that I don’t know for sure what’s causing it: one, some or
all of the dozen meds I take? HIV itself? The fact that I’m over 40?
All of the above? These questions, in turn, raise more unsettling ones:
Is fatigue simply a part of “long-term survival”? As the beneficiary of
HAART therapy, should I just shut my mouth and be grateful that I’m
I know that sleeplessness is part of the problem: My usual nightcap
of five meds includes Sustiva, which often makes me hallucinate before
I drift off—my bedside radio once morphed into a dollhouse—and gives me
disruptive dreams. Another culprit could be the stress my meds put on
my liver, but a recent biopsy showed that, all things considered, it’s
holding up fine. My doctor thinks I “don’t have anything to get out of
bed for.” When he said that, I wanted to scream at him: “Staying
healthy and fighting AIDS is a full-time job!”
But I didn’t have the energy.
Here are some of the things I’ve tried in order to combat my
fatigue: Yoga. Vitamins. Vitamin B-12 mixed with testosterone shots.
Maintaining a positive attitude. Taking Percocet and OxyContin to
relieve painful neuropathy in my feet. Taking the antidepressant
Lexapro. Drinking coffee. Stopping coffee. Drinking tea. Switching to
green tea. Acupuncture. Injections of Procrit and Neupogen to build red
and white blood cells. Cutting out sugar. Napping. Taking a day off
from all doctors’ appointments. Going to the gym because “the more
energy you build, the more energy”…zzzzzz. Sorry! Drifted off there.
Easily the wackiest anti-fatigue tack I’ve taken was a visit to
“internationally recognized healer” Dr. Eric Pearl (he’s trained as a
chiropractor). I finagled an assignment to interview this handsome guru
at a New York hotel. When he ushered me into his suite overlooking the
city’s glittering harbor, my energy level perked up immediately! He
explained that he allows energy to move through him to the patient and
asked me to remain “childlike” and “open.” But as he spoke, my mind
wandered to a realization: I hadn’t come to see Dr. Pearl to relieve my
fatigue; I wanted him to rid me of AIDS. I’d never have to take my meds
Shortly after my sexy but not terribly productive encounter with Dr.
Pearl, I unexpectedly scored two weeks vacation at my acupuncturist’s
country house (now that’s alternative medicine!) And I had a
real rest. I breathed good, clean air and spent a lot of time just
sitting and staring at the sky. I confess that when I came home, my
fatigue hadn’t lessened. But on some deeper level, my batteries were
recharged. For the first time since my first major illness eight years
ago, I was able to remember who I was before I got sick, before AIDS
hit. And remembering all the dreams and plans I had got me going. Now,
when those high-pitched screams wake me up at 9 a.m., I remind myself
that fatigue’s a bitch—but I’m not going to wear myself out about it.