If there is one thing that gets to me about being HIV, a condition which I’ve otherwise learned to accept and adapt to, it’s that I’m tired of being tired. My common sense approaches to it, like taking naps in the afternoon or going to bed earlier, do in fact help, even if they don’t eliminate the condition. It’s a constant in my life, though. I can’t even remember a time since my diagnosis in 1993 when I haven’t been tired.
Of course aging hasn’t helped
I had a cold this week. Not a huge cold that used up multiple boxes of Kleenex, anti-cold pills and sore throat lozenges, but a cold nevertheless. Usually I’m curious how my immune system will function and I do all (or most of) the right things to help it - rest, drink fluids, take Cold FX perhaps. This time I decided to soldier on, not even getting more than the usual amount of rest. Besides, I had a couple of things I really didn’t want to miss out on – a trip Tuesday to see Billy Elliot in Toronto, a volunteer speak thing in Peterborough the day after, an all-candidates meeting sometime else, that kind of thing.
Coming home from the Peterborough gig, though, I couldn’t believe how tired I was. I hate driving while I’m that tired. It scares me. Sometimes I stop and get a strong coffee on the road, but there’s nowhere like that on the way home. In any event, I got home OK and promptly crashed. Clearly my body was telling me to rest, even though by that time my cold was much improved. But the next day I was barely functioning either. I spent much of the afternoon asleep, and was still tired when I woke up. (That’s a classic symptom of HIV-related fatigue, I’ve learned.)
All of which made me think about how being tired has been a constant in my life, ever since I was diagnosed. In fact at times, it has been a key basis for my disability claim. There have been complications that have come and gone that have significantly bolstered the claim, it's true, and there certainly are now, with my neuropathy and all, but I’ve always mentioned tiredness as one of the primary reasons I would find it difficult to work.
That’s not to say I don’t have a busy life, even though most of it is not particularly ambulatory. And there are days here and there which resemble work days, like those conferences I attend which have unforgiving 9-5 agendas, sometimes capped by evening events, which I always thought were way too challenging for most HIVers, but which we all attempt to navigate anyway. (It usually results in crashing after a day or two of that and a period of several days to recover.)
Anyway, tiredness or fatigue associated with HIV is not something I’ve really investigated. It always seems to be a given in my life with HIV, and besides, my area of expertise has never been medical issues or treatment issues; I tend to stay clear of them. When I do research which wanders in to those kinds of topics, it’s usually curiosity rather than researching ways to fix things. Anything medical I leave to my doctor. It’s far from the perfect care model, I know, but I always have done things that way.
So it was probably curiosity this week that drove me to find out more about HIV and fatigue. First some resources, I can recommend. CATIE, my first line of enquiry whenever I get curious about what ails me, talks about fatigue here. You’ll note that fatigue can be caused by the infection itself, a side effect of some of the common drugs we take, or a symptom of underlying conditions, particularly anaemia.
Another reliable resource, The Body, has a very comprehensive section on HIV-related fatigue. It’s here . Turns out that it’s extremely common in HIVers. The Body says “many providers believe that fatigue is one of the most prevalent -- yet under-reported, under-recognized, and under-treated -- aspects of HIV disease. Several studies suggest that MOST people with HIV/AIDS experience fatigue at some point during their illness, with estimates ranging from less than 50% to more than 80%." Not just under-reported and under-treated, it seems to me, but a symptom that’s seldom discussed in any substantive way. It’s just THERE.
I can't help but think that tiredness comes from dealing with pain too. In my case, the peripheral neuropathy I suffer from in my feet is definitely of the debilitating kind.
The Body says that there are a lot of factors which cause fatigue. “Among these are anaemia, hormonal imbalances (especially low levels of the male hormone testosterone and adrenal hormones), depression and anxiety, poor nutrition, insufficient or poor quality sleep, lack of physical activity, and medication side effects.” (I can check off a few of those.) It also says that there is no one course of treatment and in fact it largely goes untreated.
There’s even a website devoted entirely to HIV-related fatigue. It’s here and it includes a handy little quiz to determine whether you have HIV-related fatigue. I didn’t take it, but falling asleep while taking the questionnaire scores extra points, I imagine.