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Pill Diary: Weeks 10-12

Fri 28 Jan 2005 In: HIV

Weeks 10-12 of the observations of a HIV positive man going onto a standard 'combination therapy' pill regime to boost the immune system and repress the virus. I must start with an apology for not forwarding the final three weeks' observations from my diary earlier but I burned out on a number of pill-related aspects of my day to day life and needed to take stock before preparing the final entries. Burnout is an insidious thing, it saps energy and willpower and focus, and over the holiday period I've had to come to terms with some realisations about my life on HIV medication (remembering that this is not my first combination). Firstly, I realised how mentally and physically tired I've become over the past two and a bit months as my body has tried to accommodate the pills. My long-valued stamina for extended days of concentrated work, driving, or anything requiring sustained focus for more than, say, 4 or 5 hours, is pretty much shot. In a few weeks I have to drive from Auckland to Wellington and can only commit to that trip because I will have a passenger who can assist with driving. I have to live within limitations which are not natural to my nature. Secondly, I'm sick, sick, sick of pills... storing them, counting them, taking them, thinking about them, forgetting them, reacting to them, the monthly trip to the hospital pharmacy to pick them up, the colour of them, their taste, the way they rattle in the bottles when I set them out for the day. I'm sick of the way the pills requiring refrigeration confront me every time I open the fridge and the ones stored at room temperature confront me every time I pass the sideboard. I can't hide them away because the chance of forgetting about them is too great. They have not become an effortless, automatic, unintrusive part of day to day life as I assumed they would. They're in my face and I'm trying to get used to that. Thirdly, specific to making my diary observations public, I am sick of thinking about HIV and pills and side effects and long-term prognoses. Once a week or so I have had to review in fairly minute and sometimes shuddering detail what the pills have meant to my day to day life. Dealing with the processes and side-effects was bad enough, reliving them in fine detail as I culled down my notes was almost a bridge too far. Now I really want to somehow ring-fence the whole pill thing, isolate it from the rest of my daily life and only think about it when I have to. Such as for 30 seconds morning, midday and evening or around the time of the 3-monthly blood tests to check for effectiveness. Or when the side-effects intrude more than normal. And fourthly, I have developed a complex relationship with my side-effects. In the last few weeks they have settled down into what looks likely to be a standard state for however long this combination lasts me. The diahroea is continuous but manageable and doesn't sneak up with as much ferocity now, but 8-10 trips to the toilet each day is about standard. The cement taste in the mouth just appears once a week or so, the numbness and super-sensitivity have all but disappeared, though the tinitus remains constant and irritating. I can joke about the shits now, I just accept explosive floods of watery shit as normal for me and the other minor side-effects I can live with. Along with the daily pill routine the side effect are a constant reminder of HIV's presence inside me and my body's chemically-assisted fight against it. The complexity in my mind comes from knowing the pills are likely to be helping me keep the disease under control (good thing) and yet they are a constant reminder that tucked away in my body is a virus that replicates at a phenomenal rate, mutates in the blink of an eye and will eventually contribute to my death (bad thing). When I'm tired and feeling grim I think of the bad aspects, when the sun's shining and I have energy I appreciate the good aspects. It's a yo-yo kind of thing. I know I can live with this combination now, though there were times when I had to very seriously consider dropping it. If I am honest with myself I know that the last few months of side-effects and disruption to my life have worn me down and I now have very little resilience left to keep strictly to the regime. It's as though my reserve of willpower is considerably deleted and I'm not sure how to top it up again for those days - and I still have them - when I can hardly bear to swallow the bloody things, or when my memory seems to ‘conveniently' forget. I'm writing this report a few days after having 6 containers of blood taken for the first tests to find out whether this combination of chemicals is working for me. I suspect it is working but I won't know for sure until I meet with my specialist for a review in two week's time. I've agreed to do two more brief reports from my diary, one just after that test results consultation and one about three months beyond that when the next tests will be due. Wish me luck! John Stone; - 28th January 2005    

Credit: John Stone;

First published: Friday, 28th January 2005 - 12:00pm

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