Week 8 of the edited diary entries of a HIV positive man going onto a standard 'combination therapy' pill regime to boost the immune system and repress the virus. Wednesday A fairly normal day today, at least in the context of pills and side-effects. I think I'm starting to re-define “normal.” I've gone through this before on other combinations, but the fairly extreme effects this drug combination is having on me, plus making diary entries, is focussing my mind somewhat. “Normal” now means no sex drive for 8 weeks, will it return? Normal now means tiredness and lack of stamina. Normal now means feeling like I'm at least 10 years older than I am. It means dealing with incontinence and irritating physical ailments. It means ‘pill time” is just as important a regulator in my daily life as ‘work time' or ‘bed time', etc. The upside is that “normal” means I am still alive and, side-effects aside, able to enjoy life for some time yet. Thursday Busy day at work, even though I'm only putting in about 3-4 hours during the day, meant I forgot my midday pills. Only realised when I emptied pants pockets for the wash this evening and found them still there. Damn. Friday 3 hours of good, focussed work, one hour of energy deficit grind and I was back home for a nap. Had hoped to go to a movie but just too bloody tired. The shits were bad all day today but less urgent. Was able to hold on 6 or 7 minutes till the end of a meeting before the dash to the toilet which is progress indeed. But my resistance to the pills is growing. Not a medical resistance but a psychological resistance. My resolve to take them on time every time is weakening and pill time is not “normalising” itself into my daily routine as much as i need. I finish a meal, look at the pills and immediately find something to do before swallowing them (sometimes 6 or even 7 at a time) like clearing the table or making a phone call or watching the end of a TV programme or.... anything but running a glass of water and swallowing back pill after pill after pill. Saturday Another "normal" day, just the big 6 side-effects which I can live with. Biggest problems are the shits and the afternoon energy crash which happens suddenly and unpredictably... it can be as early as 11am or as late as 5pm. Friends took me out for a 4 hour drive and laughingly noted they had chosen a route to include as many easily accessible public toilets as possible. Hmmmmm. Sunday Crap day, no energy, queasiness and cement taste most of the day. Managed to force down pills more or less on time with a few crackers and cheese. Unfortunately cheese is one of the main foods that causes the electric shock in the mouth effect... as soon as it hits the palate my whole mouth explodes with something close to, but not quite, pain and I have to freeze for up to 10 seconds until it passes or something readjusts. But cheese is also something which the anticipation of stimulates my appetite. Monday Is my belly swelling? I've been looking, or trying not to look at it, for a few days now. My weight is almost back to normal but either through lack of exercise or the dreaded crix-belly side effect of some HIV pills I think I'm getting a small fat gut. I'm not a vain person, never been a muscle mary, but this I don't, repeat: don't, want! I don't have the energy to do any sort of meaningful exercise, I'm still not eating as much as I should anyway and some of the pills have to be taken with food which has a high fat content to increase their effectiveness. It doesn't seem that I can win! Tuesday Missed another dose this morning by leaving the house before taking them and not being able to return from work until 5pm. HIV specialists say that if you have less than 85% compliance you might as well not be taking the pills. But in a few weeks I will be tested to see if they are working. In the meantime I must try harder to comply with the regime, to not prevaricate about taking them and to get more systematic in my daily routine so I take them reliably and on time. Hating them because of the side-effects doesn't help either. If I am honest with myself I do actually hate the bloody things. John Stone; GayNZ.com - 21st November 2004
Credit: John Stone; GayNZ.com
First published: Sunday, 21st November 2004 - 12:00pm