In Lieu of News

340

Seems I'm not yet off the CD4 rollercoaster. Results line again this morning, nice little chat to a doctor there, not sure who it was, I don't think I've spoken to her before. The result came back as 340 or somewhere in that region, which means that we can safely discount the result of 85. The doctor I spoke to said that over Christmas they had some trouble with their testing equipment, so the slight panic was for nothing. Nevertheless, even discounting that result, it's still annoying that there's no real steady result that I can look at. The doctor said that fluctuations like this happen for everyone, irrespective of their HIV status, plus I know that over-sleeping can knock your CD4 count, or at least that's what the internet told me, so I suppose we can attribute the 90 point fall to that.

A friend who has been positive for a while said that this kind of fluctuation is common in the early stages, but I can't really see the literature to support it, just that it takes a while to establish a trend in CD4 count, rather than try to extrapolate from a limited number of results, which is what I've probably been guilty of trying to do. In the end, CD4 count and such like don't actually matter nearly as much as how I feel and while, yeah, there's bound to be a downward trend, it's only really an issue if I'm actually getting ill more often than I used to, which certainly isn't the case so far.

So long as it's over 200, there really isn't an issue, and even then, there's not that much of an issue anyway. If I didn't take drugs, I'd start to get ill at some point, sure, but the drugs are there. It's not as though I would consider taking them lightly, but there's not really another option, and once the side-effects are something you have a handle on, then you're cool. I guess it's a question of trusting the system on one hand and taking responsibility for your own health at the same time. I'm probably going to the gym a little too often at the moment, might try to cut back to three fixed mornings a week instead of five, which is excessive, but probably to do with my urge to "be healthy" in the wake of diagnosis.

Still, I'm sure a sudden rekindling of an interest in alternative health is probably a better response than the "Fuck it, I'm dying anyway" approach I've seen in a lot of people, and I've been guilty of edging a bit too close to sometimes, too.

340, 430, you say tomato. I say I'm healthy and not worried.

Disclosure

Talked to my father yesterday about my status. Was very difficult to tell him to his face, with my mother it was electronically and she told my sister, so I didn't have to see the look in his eyes as he tried to deal with the shock without looking too shocked. It was difficult and I found myself talking at a hundred miles an hour to make sure the whole thing seemed ever so breezy and that it was nothing to worry about.

That he knows is a good thing, but I think I'll feel better once I know he's taken the information in and been able to process it a little bit. Don't know why, but I didn't give him this blog's address just yet, but I will in time. Through his partner, I can get lots of acupuncture, which is meant to be really beneficial, but the main thing is for me to try to make sure my father is okay. It can't be easy for him to hear about my status and I'm five months ahead in processing that information now, it's probably healthy for me to be reminded that it's not all good news and pride about how much I go to the gym at the moment, but that it's still not something to be happy about.

En Hiver

A friend of mine called me an HIVer last night. I'm either part of a hive or I'm a French Winter. I'll take the latter, please. I wonder what other terms I can find to talk about pozzies, plague dogs or whatever "us" people united by a formerly terminal illness.

Got my CD4 count back, it's rocketed up to 435 and my Viral Load is 58,000, so the pharmaceutical industry can kiss £15k per annum goodbye for a little while yet. Was interesting thinking that perhaps I should go on the drugs so I felt like I was "doing something" about the virus, but actually, the 85 count and my ridiculous good health and humour throughout made me think perhaps I should stop worrying about any of it and just see the funny side of it all, the vaguely risible panic over numbers, rather than looking at my overall health, which is superlative.

I think another factor has to be my disclosure to my mother and my sister. Makes me wonder if I could get an extra 200-300 points for telling my dad, too, then I'm sure all would be well in the world once more. I really need to arrange that.

It's funny how much the CD4 count mirrors your own mental state - looking at the results (apart from the blip result of 85) you can see the progression of my acceptance of my new status - initial ignorance, then sinking with angst and now coming back up again on the other side of getting used to it, like some perverse mood chart.

Ironically, I got through a load of NAM guides about medication this morning from THT, which I won't really need to look at for a little while yet, I'm hoping. I also asked them for some guidance booklets to send to my mother so she's got some materials about the virus and what it means for someone to be infected (and infectious) these days. The THT helpline have actually been very good both times I've called them, friendly, concerned enough to ask if I'm okay, then nice enough to back off when I say I'm okay and get on with the business of sending me lots of information.

I also called the Gateway Clinic which offers Chinese medicine, acupuncture and such like, and if you're positive, you bypass the waiting list, so I self-referred there and will be heading along there in a couple of weeks for a consultation meeting with them to see what kind of things they might be able to do for me. Also phoned The Lighthouse but they sounded a bit more focused on benefits advice and such like, which I'm not sure I really see the need for when there surely must be very few HIV+ people who are actually incapacitated by the illness, but still, maybe I'll stick my nose in there one day just to see what's on offer. The woman on the phone said something about helping people get into college and such like. I didn't realise being HIV+ took away your literacy, so apologies now if my blog makes less sense as it goes on.

The Compass Centre that THT recommended to me offers activity breaks out of London, but only for African people with HIV. I want to know who will give me free holidays for being a minority group in the area I'm living in (it's predominantly black and portuguese round here).

So, if I can't get free drugs that will cripple the economy if everyone gets infected, then I could do with some other free stuff instead, just because it might be funny. I'm already signed up so Elton John pays for me to get Positive Nation sent through to me.

Oh, and I'd really rather THT didn't send you stuff stamped with lots of Private And Confidential marks all over it, they might as well send it with a stamp saying, "The Recipient Of This Information Is Hiding Something!" I live alone, they can put, "You Have AIDS" on it if they want.

I don't think I'll be asking for The Food Chain to deliver my meals. They'd probably send me to MacDonalds instead.

Becoming HIV Plus!

Just been looking back over the posts I've made to this journal and it's surprising how much my thinking has changed in so few little notes. The lost despair in face of the advice given by the doctors, the confusion. To me, it all adds up to something that my best friend told me when he had his test.

The hard part isn't living with HIV, but adapting to it.

It's true, being diagnosed HIV+ thrusts you, against your will, into a whirlwind of identity politics of which you were only ever peripherally aware in the past. Sure, I had friends who were positive, but never seen someone go through the process of becoming an HIV+ person. I suppose in some ways it's a similar experience to coming out, in as much as you find something out about yourself, then you have to adapt to how people view other people who do or want or have the same thing as you and also how you relate to other people who seem to be in the same position as you.

I'm not going to pretend the medical stuff isn't easy to get your head around, but there's a time of trying to learn how to trust what it is you're being told by doctors and health advisors that it really isn't all that scary in the end, that the drugs and the intervention they have now mean that it's really only a chronic condition to be monitored, rather than a terminal illness to be feared and avoided at all costs. That takes a little while to sink in, when everything you'd heard in the past was that to become HIV+ was such a bad thing you should go to any lengths to stay negative.

It's the transition that is the hard thing.

Now, I may have had few enough CD4 cells at the last count that I could give them all cute names, like a friend of mine suggested, but I think I'll just see how tha comes out next time. If it jumps up past 200 again I'm not playing that game. I'd call them all the same name anyway. Mine.

The biggest shift is in the thinking, as I said, the identity politics into which you're thrust. Suddenly you're in yet another minority group, you've got another flag to wave, another label to add to your CV or your gaydar profile, another reason to feel that life owes you. To be fair, though, I can sort of understand why people who aren't infected find it hard to get the experience of being HIV+ when all the promotional material tells you it is such a bad thing, then when you're HIV+, you're given a whole other literature that tells you it ain't so bad after all.

Prejudice is going to be the ongoing battle that will bug me more than the uncertainties about health. The sense that there's an increased amount of legislation pushing for HIV+ people to always disclose their status to any sexual partner, irrespective of what risks they take together, that people still don't know how safe it is to be near to you, that they feel they should tiptoe around you emotionally rather than just say what's on their mind. It could all get rather annoying.

Just as annoying, though, can be the flipside, the temptation to end up in some kind of AIDS ghetto, hanging out with other HIV+ people all the time and doing the whole HIV thing to death (excuse the pun).