Managing Fatigue is Often No Small Part of Living with HIV

God, I’m Tired
Managing fatigue is often no small part of living with HIV
by John Francis Leonard

I don’t have a lot of complaints, but I have a few. I haven’t suffered from too many side effects from HIV, but there is one that’s been particularly tricky as I age—and that’s fatigue. I’m exhausted all the time. It’s been a particular challenge lately as I keep the same writing schedule and work increased hours at my part-time job. I used to run a large and growing business and, after that, ran a department for a major medical center—a fifty, sixty-hour work week was normal for me. On top of that, I ran a household for myself and my partner and kept a busy social schedule. Now, just running a register in a grocery store in four-hour shifts is exhausting. How did I ever do it all?

Of course I’ve asked my doctor about this constantly—one thing that has helped is bi-weekly testosterone injections. It seems due to the HIV and earlier abuse of steroids for bodybuilding that my body doesn’t produce the hormone in the amounts it should. He says that the rest is normal for a person of my age who’s a survivor of over fifteen years. Also at play, he reminds me, are the many other meds I take to deal with bipolar disorder.

So that’s it, I need to just accept this? I guess I’d better. I thought that working out regularly would help me feel more energetic, but it simply makes me more tired. I still do it because the benefits far outweigh that, but if I’m waiting to feel some burst of energy—well it’s a bust. Sleep helps, of course, and I get a lot of it, well over eight hours on most days. I love to write in the predawn hours (it’s 2 a.m. right now). I do my best thinking when the rest of the world is asleep. So I go to bed quite early and am up by two on the days I write and lay back down for a nap by 8 or 9. It’s an odd schedule, but it works for me. All in all I get plenty of sleep, so much that I sometimes feel guilty about it, but I shouldn’t. It allows me to do all the things I want like write for this magazine and other sources, work out, and work the hours I need to at my part-time job. That job is very tiring, but I do enjoy it and love its flexibility. I can work eight hours a week normally and come in additional hours when I need the money. I’ve doubled the eight for about a month now, and it’s been tricky, but I get the same feeling of accomplishment that I do from working out. Plus when one writes for a living, any opportunity to get out of one’s head for a few hours and work with people is wonderful.

So, I’m very lucky, but, God, I’m tired! I recently put my foot in my mouth talking to a dear friend and mentor about this, and it gave me a bit of perspective. A&U’s talented writer and senior editor, Hank Trout, has written often about the many health struggles he’s had as a man in his sixties who was diagnosed back in 1989. I guess I was thinking that he’d know what I’m talking about when I began a long harangue about my depleted energy when we were talking on the phone one day. What Hank did was express incredulity that someone who could still get to the gym and work out would be bitching so much. He hadn’t been able to do that in decades. It reminded me quickly, as I’m sure it was meant to, of how lucky I am. When I thought of all the challenges Hank has faced in the recent past as far as his health is concerned, I cringe that I could complain so much about this one thing. Yes, my fatigue is a challenge, but it could be worse. My Irish grandmother used to say that no matter how bad you think you got it, someone’s got it worse. Also that someone might be handling it with much more alacrity and aplomb!

So I’ll continue to adjust and adapt. Continue to take even better care of myself and my health. If I’m ever feeling sorry for myself, I only need to count my blessings and think of the alternatives. Hey, it could be worse!

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for fifteen years. His fiction has been published in the ImageOutWrite literary journal and he is a literary critic for Lambda Literary. Follow him on Twitter @JohnFrancisleo2.