Russell
Fleet
ALIVE AND KICKING
HARD-NOSED CHANGE OF HAART
In August I will celebrate 15 years of living with an HIV diagnosis. Not what
I expected, I can tell you. I mean the 15 years, not the celebrating - that’s
a given from the man who, in his day, brought you the ‘somebody sneezed’
party and the ‘day with a y in it’ party. (Yes, Buffy fans, I
know, but it’s such a good line.)
This long term diagnosis thing is something that really began to hit me last
year, when I was invited to speak on the subject at a health promotion conference.
I hadn’t really put myself in that category at that point; although
my maths is good enough to know that 13 years (as it was then) is a long time
to be diagnosed. I suppose that might well have been due to a small but pervasive
feeling that I still might not last that much longer. And oddly, it’s
only now that I don’t feel that way, that I am in a position to realise
that I did back then. Don’t get me wrong, everyone who knew my situation
thought I was handling it all splendidly. I looked the epitome of a ‘catflu
warrior’, determined not to be brought low by the virus and its associations,
adamant that I would succumb neither to opportunistic infection nor depression.
The Unsinkable Brenda de Bolde, that was me...
So what changed? Well, depression for one thing. Hit me really bad last August.
I sort of freaked out at work. In a team meeting I made a fairly acerbic comment
about something and raised my voice a notch. Hardly the bombing of Fallujah,
but for my colleagues, who were used to seeing a funny, placid, easygoing
sort of me, it was like a bolt out of the blue. I got signed off for a month
on my manager’s recommendation (and with his support) - and started
a course of antidepressants. They worked wonders and I’m back at work,
having been on shorter hours and under the guidance of the occupational health
department.
But the big change was that I switched my combo about two months ago. I’d
been on at my catflu doc about a once-a-day combo for the last two years,
as my adherence to a twice-a-day combo was working out at roughly 50 per cent.
In a feat of mathematical dexterity I figured that, as I could manage to get
it down my neck once a day, on a once-a-day combo my adherence would shoot
up to 100 per cent without me having to try too hard. The delay was due to
waiting on resistance testing. Given my frankly atrocious adherence and a
history of bizarre drug trials in the early 90s I was sure there would be
some drug resistance in my virus, it was merely a case of finding out what
kind. We made several attempts at analysis but these always came back ‘insufficient
genetic material available for amplification’. Bugger only knows how,
when my viral load had reached 60,000 after one impromptu drug holiday lasting
four weeks. But finally, at the end of January, the result came back. No resistance
mutations of any kind - whatsoever. I nearly fell off the chair. How could
that be possible? With my record on adherence, never mind the drug trials,
how could I possibly be sensitive to all drugs in all classes? But I am, and
I feel like the dog in the Royal Bank of Scotland insurance ad, “that’s
more than lucky”.
So now the long term diagnosed thing has really landed with me, not because
I’ve been diagnosed for a long time, but because I’m going to
be diagnosed for an even longer time - as opposed to dead. And that’s
what I really needed to move on. The question I face now is: what do I do
with all this future that now looks so much more certain that it did before?
Well, get the adherence right for a start. And it’s been 100 per cent
so far. I’m not wasting this golden opportunity. The other thing is
to chronicle the process, to let people know that it is a process, not an
end in itself. I’m not perfect - my adherence record speaks to that
- but I’m here and I have something to contribute. The human condition
is one of imperfection, and that’s true for all of us. In accepting
that about ourselves, and showing compassion for ourselves in the face of
it, perhaps we can move on to showing compassion for others.
