Fatigue Is More Than Justing Being Tired
With close to 4 decades of living with HIV, I have seen a lot of ups and downs where my health is concerned. Thankfully, the major events have been kept to a minimum. I made it through the early pre-treatment days of my diagnosis and was running on fumes with less than 50 t-cells when HIV medications turned my health around.
Talk about a game changer.
When I started on ARVs I was in my early 20s. I had been diagnosed with HIV for over half my life. Stigma and trying to keep my secret were way more important than my actual health. I thought of AIDS as a sudden decline that might eventually come.
In typical Gen X fashion... I would deal with that when I had to. In some ways, being diagnosed young and oozing nonchalance had its advantages.
Looking back, I now understand how depression truly impacted me. Particularly during weeks-long stretches of absences from school. Some days, I just couldn't get out of bed. And I thanked my lucky stars that I had parents that didn't hold me to the same standards that my older brother had to live by. What, with his (thankfully!) good health and all.
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Skipping the role play
Some of wanting to stay home was not wanting to role play as a teenager who wasn't living with HIV. But, mostly, it was the fatigue.
I can't quite say what the ratio was between the psychological and physical manifestations. What I can say is that, whichever one came first on those difficult school mornings certainly triggered the other to join the party. I would go back to sleep to forget my problems and wake up to a reset of the day. I really credit my Mom for taking a long look into my eyes and asking if I really needed to stay home.
I would quietly answer with: "...Yeah." I can't imagine how heartbreaking that must have been... Going to work wondering if this was the beginning of a downward spiral.
"Rebounding" from fatigue
By the end of high school, I started to really notice the physical fatigue. One winter I was sledding down a big hill with friends. The next? It all just seemed so exhausting. Not worth it. I stayed inside and drank hot cocoa instead of schlepping through the snow. Sounds awesome at 48, but I was 18 at the time.
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Years of HIV progression was certainly the culprit. A turning point occurred in my early 20s, when I finally had no choice but to start on ARVs.
I had gotten so use to fatigue, being tired was normal. I was way more worried about the potential side effects of the HIV medications. Understandable, since I had been infected with HIV and hepatitis B and C through the use of my hemophilia medication.
At the time, I didn't understand the full scope of how much fatigue had affected me. When my health improved dramatically, thanks to HIV medications, my energy levels rebounded.
"Rebound" isn't the right word. It was more like a Globetrotter's steal and half-court 3-pointer.
The timing couldn't have been better. I had fallen in love with a sexual health educator, Gwenn, and things really took off when we decided to open up our relationship as a way to educate about HIV and condoms. We started traveling so much - it wouldn't have been possible with the low energy levels I had made do with before.
Keeping fatigue at arms length (when I can)
These days, I'm glad that I have a fatigue on my real-time radar. It comes and goes randomly, which can be frustrating. But I'm way better at recognizing the warning signs. I'm also being more proactive about things I can do, in the short and long-term, to help minimize fatigues impact.
I would be remiss if I didn't add this: I'm very lucky to have a partner in Gwenn, who often sees the warning signs before I can recognize them myself.
Healthy routines help keep fatigue at bay. And crashing for a nap doesn't feel like waving a white flag. It certainly use to. Not falling asleep in a negative headspace is a key to waking up with a clearer mind and a little more pep in the step.
If you have any fatigue life hacks you would like to share, please feel free to share them below. Hope this finds you well and, as always, thanks for reading.
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