We’ve got several HIV epidemics going on, and one group is being brushed under the carpet – we’re the inconvenient past: the people damaged by early HIV drugs
I had a new meeting with the “worker for people with long term conditions” today. Let’s just say it left me with a bad taste in my mouth…
I ended up with a badly designed THT Cymru leaflet (someone needs lessons on aspect ratio for graphics as well as placing of text within text boxes, not to mention colour balance – and I’m just an amateur) with the worker’s email and phone number scribbled on it. Very professional. A good proportion of the leaflet talked about how Community Service Volunteers helped and were welcomed. The office I was at had already said that they didn’t have a tradition of using volunteers. What was I there for?
A lecture, an expansion of the relevant bits of the leaflet as they may be relevant to me, which is not much. Basically of all the services offered in the leaflet the only one that might be relevant was transport to the HIV clinic, which frankly is a bit of a kick in the gut. I was a biker: I could go anywhere: part of my therapy for that is learning to “cripplethink” – it’s unlikely my ankle will ever heal so I’ve got to get used to the pain and tiredness of getting somewhere in two hours instead of twenty minutes. Mabon (my bike) and I had a lot of fun, so much so that a character in my mucky (let’s be honest: totally pornographic – so much so that I doubt I’ll find a British publisher) novel is named after him.
I asked a number of what I thought were pertinent questions, like the re-boot of the support groups here: yes, but only initially inviting those registered with the one clinic. I know full well that people from this area go as far as England for treatment: I’ve even considered going back to Southmead in Bristol myself. A friend of a friend who lives further west that man goes to Hereford. The problem with Wales is that the few general hospitals we have are around the borders, and it’s only them who offer HIV services. A friend had a dose of genital thrush which his GP didn’t feel able to diagnose (hell I know when I’m thrushed up with just a look) and so waited in itchy, painful stress before the GU clinic were able to tell him (three weeks later) what I could have told him over the phone and confirmed in person. (As a person with diabetes I consider myself pretty expert in in genital thrush – don’t worry: I don’t do it when I’ve got it. It’s too painful!)
I hear some experienced and/or astute readers asking themselves “This theme again?” The truth is that we’ve got several HIV epidemics going on..
First are the newsworthy twenty somethings who are madly chasing the bug, intentionally or not. On the sites I frequent they’re more concerned about how to have natural sex while avoiding the HIV. My advice remains the same: make sure you can trust him (insofar as you can trust any man… me bitter? Never!) Guys who have regular check-ups are far less to be unwittingly HIV+ and far less likely to have other STIs. Gold star, lads! The guys who leave it a long time between check-ups are statistically far more likely to have picked something up between check-ups. Syphilis, gonorrhoea etc are bloody painful as well as reducing immunity (as a gay man who knows his classics, Syphilis is such a wonderful name) and the longer you leave it between check-ups, the more likely you are to pick up an STI, one of which may be HIV. Test frequently!
Next up are the people who caught onto the last wave of antivirals and made full, or nearly full recoveries. We still had scary moments and people still died (we didn’t know about abacavir and HLA-B*5701, for example). We’d pretty much worked out drug regimes involving opportunistic infection, it didn’t stop our wonderful Dr Sarah walking into John’s room one day, after a particularly rough week to ask “how do you feel now we’re not poisoning you?” Sarah was a love – wherever she is, if you know her, tell her Steve with the rottweilers sends his love and thanks.
We are the wrinklies – I count myself as one, before you object. I earned my grey hair hair and wrinkles and am proud of them – they tell the story f my life with my little passenger just as surely as my tattoos do. For some of us HIV has been a recent infection, for others, like me, it’s been there for more years than I care to remember. Either way, while we have a pretty good idea what HIV does in young bodies, we just don’t know what it does to our ageing bodies. All those years ago we never thought there’d be a need for ‘HIV geriatrics’ as a speciality and all of a sudden the kids have got these oldies messing up their “of course you can be totally healthy with HIV” messages. We’re getting the standard diseases of old age along with effects from the early drugs.
I’m going to name drop (and I remember when she was a shop girl in Athena, even if she is now one of the most powerful women working in HIV – mae’n ddrwg gen i, cariad!): returning from National Long Term Survivors weekend I was warming myself in the underpass between the platforms of Cardiff station. Suddenly a big figure like the beginning of Killing of Sister George (my sight is hopeless) was bearing down on me. We hadn’t seen each other for twenty or more years and babbled like it was only yesterday. She’s been having trouble with her knee and suspected arthritis, while I talked about my diabetes “Ah the diseases of old age…” she said
“No” I said. “High dose ritonavir, ddI and d4t”
She looked me in the eye and said “yep, that’ll do it.” Honest to a fault our Lisa. I really sincerely wish she wasn’t leaving THT, but I recognise the need to move on.
But there’s your third epidemic: those of us who got a bit messed up by the drugs. I’m not seeking sympathy: yes we were doing it for those who didn’t need the drugs yet, but we were also doing it to stay alive. Double blind trials meant you had a 50/50 chance of getting the real thing as well as increased monitoring.
I’ll admit my vulnerabilities: most obviously I need a walking stick to get about unfamiliar places. My body’s a lot older than my head, thanks to the chemical castration of early ritonavir.
After bereavement I live in an area where neither of us had lived, but was ill on arrival I’m not a gay scene fan (can’t stand all that loud music, and besides you should see the taxi fare from Swansea if you don’t score!), and so am, apart from all too brief bursts of activity, almost totally isolated. I can’t even walk as far as the nearest (straight) pub: I have no problem phoning for a taxi, but doesn’t a taxi to the pub look a little tacky? And besides, I’d far rather walk into a bar with a man than by myself.
Virtual life (which is what I live, spending on average 23 hours and 59 minutes alone each day) isn’t all it’s cracked up to be. I’d love to talk more, but it’s getting late, 2am infact (I wish I had someone to nag me to bed) and I may miss a delivery slot for my groceries…
Steve (@rottiesteve on twitter)