Joe's POZ Blog

I cannot decide what the biggest scourge is that comes from living with HIV? Not the major stuff, like real health issues, or resistance, I mean the side effects that can just total your day. I'm also not talking about side effects that present any real threat to your health, or that will kill you. However there have been a couple of days where I might have wished that I had died. At times, death just seems that it would be more agreeable than tolerating these added dimensions to my existence.

My particular demons are fatigue, nausea, and/or bowel problems. I often wonder, which is worse? Being waylaid by fatigue or to be tied to your sink or toilet? Would you rather spend your day, picking up your face from the payment, or strategically positioning yourself, at all times, in close proximity to a toilet? (Maybe a new use for GPS, perhaps?) But either way, is that any way to live?

Granted I am middle age, but I never remember being this tired. This isn't the tired where you think, "Gee I should take a nap", no, this is fatigue where you feel as if you are living in a fog. You sort of float through your day, about as sharp as a marble and you never feel as if you have awakened for the day. I just plod through some days, dragging my fatigue as if it were a ball and chain.

The nausea comes and goes, but it pays a visit at least 3 or 4 times each day. I've become very adept at gauging how to address it, but it still surprises me at times with how intense it can be. So I juggle the Compazine, yogurt, crackers, bread, Ginger Ale and/or Marinol and hope for the best. Sometimes they work; many times they do not.

The bowel problems have been with me, ever since I started meds, 18 years ago. It never ceases to amaze me, how disgusting some bodily functions can be and I see no need to share any of those horrors with you. I know most of you can fill in the blanks. Suffice it to say that long ago, I had taken to carrying a change of clothes, just in case; I call it my "surprise" kit. Need I say more?

So how do you balance these demons? How do you regain your life, even if for a couple of hours, to get something done? How do you adapt to these changes in plans that many times, come day after day? Sometimes, I am afraid, not too well, other times, not well at all.

I was scheduled to have a busy day today, but when I got up, I felt like a truck had hit me. While I had enough sleep, if you call waking every couple of hours, sleep, I still feel like death warmed over. I drag myself from bed and BAM!, the first wave of nausea hits, almost sending me running to the sink. I steady myself and prepare to start my day. Bending over to put on shorts, however, takes on a new dimension. I always forget that I take blood pressure meds and they make me light-headed when I bend over. So for a couple of seconds I get a head rush and become very dizzy and I sit down. Once it passes, I arise slowly and continue dressing, BAM! BAM! two more waves of nausea hit me and I start cramping. I have not even been out of bed for 3 minutes and I realize that today is going to be an "AIDS" day.

An "AIDS" day is a term that I think all positive people can relate to. Granted you might call it something else, but you know what I mean when I use the term. It's like we have special terms to describe living with HIV, a short hand if you will. When I tell friends that I am having an "AIDS" day, no further words need to be said. I wish I could use the term in public, to excuse myself at times, when I have bolted from a store to find the nearest toilet. It just seems more polite to tell someone I am having an "AIDS" day, rather than I need to run because of my explosive diarrhea. The last term, just does not have the same ring to it.

So I continue my day, I eat a yogurt and my stomach seems to react favorably. But then the cramping starts. Funny thing about my body, but I seem to mimic my dogs; what goes in one end, immediately initiates something coming out of the other end. Yogurt in and something must depart. How sad that the cramping and waves of nausea, that accompany the departure, make me wonder which part of my body should be hanging over which receptacle. Many times I feel the need to straddle both.

So this is how my day begins. I take a Compazine and wait for a while, hoping I can eat something else. But soon my cramping makes other plans for me. For the next few hours I teeter between by fatigue, my nausea and irritable bowels. Any plans I had for the day, or at least the next few hours, have been aborted. Although I am used to it and most people who know me, know of my status, so rescheduling is never a problem. But I hate having such little control over my body, for extended periods. But this is not the first "AIDS" day and it certainly will not be the last.

I often wish there was a way for me to share these days, with those negative folks, who think that living with HIV is some kind of cakewalk. Imagine the prevention message that would make! Alas, not today. I will be spending the next few hours at home, where I need to be, not where I want to be. It seems my body has other plans right now. So I am once again forced to adjust to this virus and its ravages. Sometimes I just wonder how much more of this living hell I can take. Yet, I always plod on and tomorrow is another day, with new possibilities. But I still resent the intrusion and loss of control over my own life.

How I hate "AIDS" days!