Fatigue & HIV
I was probably infected around the age of 8. I got shingles before my diagnosis at 11, and had a few health problems because of my weakened immune system. I don’t remember being tired or fatigued until after I was told I was HIV positive and started to face the realities of living with HIV socially, as well as dealing with the heavy thoughts of confronting my own mortality.
When I started speaking about HIV at 20, I explained away my shoddy attendance record in junior high and high school by telling myself I just skipped out because I could. Because my parents or the attendance police at school were powerless to stand in my way by playing the “too sick for school card”. But, in retrospect, a lot of those days I was just too tired to get out of bed; a lot of those mornings, it’s safe to say I was depressed, and the thought of getting and going to school to pretend to be normal placed a distant second to being able to sleep in, wake in a house all by myself and have a good afternoon tug in the privacy of my own home.
As a guy in my mid-thirties, I look back and notice that, as I was starting to come to terms with life as a positoid even though I hadn’t gone public- around the age of 18, there was a physical fatigue that had less to do with the emotional/psychological side of things. For instance, instead of going to see a band I loved in concert, I opted to stay back. Late night drives to a donut shop held little appeal, and winter-time sledding only conjured up the thought of walking back up the hill, and not the joy of sliding down.
I doubt that was just the natural effects of getting older, since I was 19 at the time. And at 19, I’d probably had an untreated virus- HIV- in my system for at least a decade.
Today, I blame my meds on my recurring bouts of fatigue. But that’s not fair to the virus itself, which necessitates the need for a constant defense system that includes not only pills, but a stress-free lifestyle that includes a decent amount of rest. When I did my recent tour with Synthetic Division, I actually Mapquested the whole route, keeping how many hours of sleep I’d get each night at the top of the priorities list.
I look back on those early days of fatigue, and I acknowledge now that I had a rough first year after my diagnosis. I’m proud that with each year, I got a little more comfortable with the fact that I’d live the rest of my life with HIV. The fatigue continued to dog me, as it does to this day, and I’m proud that I recognize my need for rest and balance it with my desire to be a good, active partner in my relationship (from holding conversations to holding hands) and a contributing member of society.
The way I deal with fatigue now? I don’t beat myself up over it. I rest when I need to, and I make a proactive decision to test my stamina when hours become days, and days turn into weeks of sloth. Psychologically, I’m as comfortable as I can be with the fact that I’m HIV positive; the emotional exhaustion surrounding my status comes more from the fact that I’m an HIV educator. And even with the stamina of a World Cup soccer player I’d still be unable to do everything I want to in terms of raising awareness about this epidemic.
Plus, over the years, I’ve learned to love the nap, even if it is required a mere three hours after a full night’s sleep. I don’t get embarrassed, I don’t let it hurt my pride, and nothing feels better than having a partner who sends me off to sleep with a smile.
I wonder how many of those early, post-diagnosis naps were filled with dreams of one day awakening to this reality.
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