'DAYDREAMS
OF A DOSE DRIFTER'I have a terrible memory, so I was glad when the clinic gave me a little alarm with my first batch of meds. Only problem was, it never worked - at all. I asked for a replacement and that one went off at all times of the day and night except, of course, at the times I wanted it to. Undaunted, I requested another. That one worked just like the first: not at all. Like many of us going back to work after a long period of sickness, I can't afford a fancy programmable watch to provide me with these reminders.
My adherence is, to put it mildly, lousy - a fact that particularly depresses me after reading somewhere recently that even the fortunate ones with 95 per cent adherence can eventually expect to build up a significant amount of drug resistance.
My day never seems to be regular enough to offer the sort of inbuilt reminders that I need. And then there are the spontaneous nights out after work, when I don't have my pills with me. That's not possible, since some of them have be refrigerated. Do I go home and take them, or do I just relax and enjoy the evening? Unfortunately, the latter always holds sway. On a good night, I won't even get home, lucky me, so I miss two doses, or at least the morning dose gets taken very late.
Sometimes I just plain forget to take a dose. I work shifts and don't have lunch at the same time every day, so one week it's at 13.00hrs and another it's 14.00hrs. (I forgot to mention: all my doses have to be taken with food.)
My
point here is: What are the hospitals or anyone else involved in the HIV care
sector doing to help us with adherence, instead of dumping the drugs on us and
saying "Get on with it"? Do they think we all lead metronomic 2.4-children-Ford-Mondeo-in-the-drive
existences? Maybe some of us do, but I certainly don't and I need some help to
take my meds at the same time every day.
The fact that some of my drugs have to be kept chilled raises some interesting questions. How can I transport my drugs when I have to be out most of the day, ie at work? After I've taken them out of the fridge, how long will they remain effective, before throwing them away is just as effective as throwing them down my gullet?
I'm thinking of changing jobs. The new job will mean being out all day and coming home late in the evening. Do I take my morning dose with me, knowing that it will warm up, or do I take it early before I leave and take the second dose at the wrong time?
The bottom line as far as I'm concerned is, life doesn't allow adherence, unless you don't have much of a life. I find it all but impossible to take my meds at the same times every day - indeed I can't even remember the last time I took all three doses required for a single day at the correct times - it just doesn't happen and I can't believe I'm the only one.
So, anyone from the health service out there listening? Anyone know of any useful tricks for remembering the times, for transporting the stuff without trekking all over town without a cool-box banging against my knee all day? Anyone know where I can get a cheap programmable alarm? Sorry, please don't suggest the mobile phone - it has to be programmed each and every day and guess what? I always forget to do that too.
