I’m now 4 days through the weeklong Jelly Bean Challenge. Taking 4 ‘pills’ per day (I’m on Protocol 1) has been very illuminating – but illuminating not so much in terms of HIV and ARV medications, which I’d like to think I knew a fair bit about already. Rather, it’s been surprisingly effective in showing me just how unstructured my days tend to be, and therefore how lucky I am to live without any chronic illness which really demands a routine and stability. For example, when I began the challenge, I planned to follow a schedule where I take two of my drugs, Atazanavir and Ritonavir, with my dinner every evening. However, I subsequently realised that I very rarely eat dinner at the same time day after day – for the last 4 days, for example, I ate around 11pm, 6pm, 9pm, and 7pm. The irregularity of my eating patterns made me wonder whether it is more important for me to take my drugs with food or to take them at the same time everyday, even if I don’t have anything to eat at that moment — does anyone know the answer?
The other big realisation I’ve had over the week so far is how difficult it would be to keep a diagnosis of HIV a secret, and still live an apparently ‘normal’ life. I came to this realisation on the first day of the challenge, which happened to coincide with Thanksgiving. Thinking about how I would have handled being HIV+ and taking a complex regime of medication while staying with all of my relatives (which effectively means no privacy or space) would have bordered on the impossible without disclosing my status. My side effects for that day – nausea, dry mouth, and stomach pain – also made the prospect of eating a big Thanksgiving meal less than appetizing. This is perhaps another lesson to be learned about what it might be like to live with HIV: in some ways, perhaps it would not be the day-to-day chores of coping with taking medications and addressing side effects that would be most difficult aspect of a life lived with HIV. Rather, I am inclined to think that what might be most frustrating would be when your memories of the big events – the holidays that only come once a year, like Thanksgiving – become hijacked by unpleasant side effects over which you have no control.
So this year, I was certainly personally very thankful that I am not HIV-positive — but also very thankful that we now have drugs with the potential to extend the lives of those who are positive, and save the lives of those at risk! http://stopaidscampaign.org/campaign/end-to-aids/
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