A Friend's Result

There's a friend of mine who has been enormously, enormously supportive of me through the whole process of having a positive diagnosis who wanted to test, not having tested for a very long time, so, of course, I didn't think twice about offering to go with him to the clinic. It has, however, been a really, really interesting thought process for me because the friend in question is someone to whom I feel immensely connected, so rather than just being a matter of holding his hand in the waiting room and making him laugh, it's sparked off some thoughts that I hadn't expected.

He came to stay with me the night before the test and it was heart-wrenching to see the fear and uncertainty he was experiencing, not at the horrific prospect of a positive result, but at the thought of the period of adjustment, the transition to becoming, in his words, "One of them." That was something that has been on my mind for a while, the sense that there should be some feeling of discordance between me and people who do not share my serostatus, but also that I should have some sense of kinship with other people who have the virus, as though the thing in our blood and our brains carries some kind of family tree which becomes evident in our lifestyles, our thinking, our relationships. I don't like that thought at all.

I found myself saying to him, "If you are one of us..." which really made my head spin and perhaps was unnecessary to remind him that the thing he was so anxious about was the thing that I live with now and largely forget about (much as the clinic themselves forget to send me my results by email - STILL, but never mind) but I do understand totally his anxiety about the period of transition. Not in terms of seroconversion, the sweating at night, the weight loss, the symptoms of primary infection, but in terms of the knowledge that this thing is always hanging over you like a shadow. At least, that's how he was seeing it, that it's a spectre, it's something to always bear in mind, to think about disclosure, to think about the prospect of discrimination and the state's involvement in your life after a positive diagnosis.

It's been good to be reminded of the significance of the journey I have been on for the last few months, how far I've come from the tears and horror of the initial revelation to the kind of casual nonchalence there is about it now.

I'm not going to talk about the test itself, that's his business to talk about, not mine, but I will remember the assurance I felt that I was telling the truth when I sent him a SMS message saying, "You're in the other room getting your results right now, so I know you won't read this until later, but whatever the result, you'll always be my friend."

It's true. He has blue eyes, I have brown eyes. There's no sense of disassociation because of it and if his eyes became brown, I'd feel no deeper sense of kinship than I felt anyway. It is significant, but it doesn't matter, and I guess there's my lesson that I've learned from this.

It may be the end of the world, but some things are far more important.

World AIDS Yesterday

Well, two days ago, yes, but you may have noticed my conspicuous lack of comment on that date. If you've seen me around, you won't have seen me wearing a red ribbon and you won't have seen me at the fundraisers or vigils. Partly this is because I was never that involved with that whole process before diagnosis, so I'm not quite certain why it is that I should change over, but I'm aware that I kind of feel as though it's a bit stupid for me to be wearing a ribbon saying I'm AIDS aware, when clearly, I wasn't quite aware enough to stop me from catching it.

Maybe when I'm not sweating at night, maybe when my metabolism has calmed down, maybe when I feel like I can be responsible and adult about not placing other people are risks they may not realise or when I'm celibate and wrapped up in so much armour I will never bleed or even sneeze again, then I might feel like I can say I'm AIDS aware again. At the moment, sure, I can talk about reinfection, I can bore you to death about standard rates of CD4 degradation, I can sound very convincing when I tell you about relative risk levels and I can tell you again and again how it's not the death sentence it once was, but, really, I know nothing.

You don't ask a drug addict for diet advice, so why ask an HIV+ man for safe sex advice? Clearly I don't have a clue what I'm talking about, but perhaps the critical difference now is that I'm aware of how little I knew. I don't think I was quite a part of the generation who grew up thinking AIDS was something that only happened to old men who go to the King's Arms and that anyone positive is a skull-faced crystal zombie; I'd have always said I was more aware than that, but in the end I wasn't. I was so righteous about my knowledge of HIV prevention that I'd make a point of not serosorting and still having sex with someone knowing that they were positive just so I didn't look like I'm being prejudiced, but really, if you know someone's got measles, you don't kiss them, so why fuck positive guys?

No-one has yet turned me down for my status when I've told them of it, and most of the time they turn out to be positive too, but I'm not sure that's the happy miracle I hope it is, but I wonder if it just means that sooner or later, I'm going to infect someone, cost the state about £1m in a lifetime of medical costs and be accountable for someone going through the strange re-evaluatory period I'm just coming out of when I know I'm emotionally tough. And, even though I know it's not my fault entirely, I still dread the thought I might have unknowingly passed it on in the past before my diagnosis.

It's not in the forefront of my mind nearly as much as this blog suggests, though, bear in mind that a single-issue blog is always going to give a skewed perspective on the person behind the issue. There's still so many other things that worry me more, make me happy, engage my mind, but for the sake of exploring the issue, it's what I talk about on here, rather than tell you about what I've had for breakfast, but perhaps once I've been to the dietician, I might just have to start doing that, too.

All Good Things

No, I'm not about to die or anything, just that, well, I broke up with my partner of five years last week. I suppose it was something that's been brewing for a while, but I do find myself wondering to what extent the current period of self-analysis is a result of the diagnosis, whereby knowing that life won't last forever, suddenly I become a whole lot more demanding about the type of life I want.

Obviously, this throws up some more challenges and issues for me, but I don't think that many of them are actually in any way related to my diagnosis. Sure, there's a guy who I've had sex with a couple of times, so thought it wise to bring it up in case it looked like things would go any further and, of course, his status is the same as mine, he goes to the same clinic, sees the same doctor sometimes and we sat and had a pleasant chat over coffee about his adventures with HIV and mine.

It's funny how, three months ago, when I was asked, "How would you react to a positive result?" the actual answer would be that I would reflect on my position in life, make several moves to improve my way of living, I'd lose weight, get fit, negotiate a pay rise with my employers, make a start on writing with intent to publish, take a chance on ending a relationship and start to live on my own and actually feel far more in control of my life than I have in years.

Who'd have thought it?

Follow-up appointment

I had another appointment at the clinic yesterday to pick up the results of my CD4 count and to do the fasting blood test. It's funny how you don't mind missing breakfast if it's just that you're busy but all I could think about on the train there was just how hungry I was feeling. I'm hoping that my results won't be too worrying, since getting told my cholesterol was more likely to kill me than my HIV status, I've been rather more careful about what I eat.

Actually, the eating thing was something the doctor and I talked about and she had some really reassuring advice to give me. Since diagnosis, I have lost about 7 or 8 kilos in weight that I've not put back on. I've really worried that this might be because of the virus and she explained that since it seems to have levelled out, then it's probably not something to worry about, but definitely something to keep an eye on. Apparently, when you seroconvert, the action of the virus on your body causes your body to burn calories more quickly, that your metabolism speeds up, which is why, for instance, I still sweat quite a lot at night or sometimes for no apparent reason, that my core temperature seems slightly higher than normal, that I don't get so cold when it's cold, that kind of thing.

However, the weight loss isn't likely to be because of the physical effect of the virus nearly as much as it's going to have been that since diagnosis I've suddenly had a wake-up call about lifestyle things, that I've been eating sensibly out of Cholesterol-Fear and out of a sense that I have to defend my health much more vigourously than before. I've been going to the gym regularly and changed my routine around to be much more focussed on weights rather than cardio and yet I didn't seem to put much weight on, kind of forgetting that doing an hour of weights and five minutes of cardio probably burns as many calories as half an hour of cardio and half an hour of weights, although, if truth be told, I'm spending much longer in the gym, too.

Hearing all this from her, that the changes in my body are not from the virus itself, at least not directly, was an enormous relief - I'd felt that the change in my shape since diagnosis was an unwelcome reminder of being positive, that you could see it in my face that I've lost weight, that I keep my facial hair a bit longer to try to make sure I don't look so thin, that the six-pack that now seems to be burgeoning in my midriff is testament to my work in the gym, not that I'm about to waste away to nothingness. I did mention to her that I've considered taking a course of steroids to make me bigger, but she seemed to think it's more important that I try living with the knowledge that my athletic figure is because I'm getting good results, rather than that I'm dying, so I think I'll give my liver a break and not put myself through that, maybe spending the money instead on a few Personal Trainer sessions.

The other thing we talked about was my anxiety that I might have inadvertantly infected my friend with whom I'd had sex and that had led to me going to get tested for all sorts of nasties just afterwards and I found he hadn't given me anything, but that I was positive. I'm really anxious that it's now three months, and although nothing high risk happened, no major body fluid transfer or anything but that there's any risk at all does play on my mind a hell of a lot.

Oh, yes, you may have noticed that I've not yet mentioned my CD4 count. Well, after the lab lost my last batch and I had to go in on a friday afternoon to get the test done again, apparently Friday afternoon is too late for the lab and they couldn't do anything with the sample because it was too old by the time they got it. I was livid, I'd taken time off work, losing money in order to take the test and again to pick up the results. Incredibly annoying that they then mismanaged my second set of bloods. The doctor, however, was brilliantly incandescant with fury and told the lab I was making a formal complaint and taking legal advice so if they screw up again, they will all be killed in a fireball or something like that.

We also had a brief chat about the whole thing of coming to the clinic at all, about how my politics are against state intervention in private life, so the thought that there will come a time when my life relies on the state for its continuation is something I find quite troubling, so she and I had a pretty revealing talk where she said, actually, CD4 count and Viral Load don't make an enormous difference to outcomes with HIV, saying that even if we take the science as it stands, there's at least four years before I have to even consider HAART so she said I'd be more than welcome to consider options like, after we've established the condition isn't rapidly degenerating, which we would have noticed by now, then I could just go in every 3 or 6 months to get them to take blood, then say I only want to get the results if there's a good reason for me to go in. Or, she said, I don't really have to come back at all if I don't want to, that there's unlikely to be any real need for medical intervention for my HIV status for another four years or so, so maybe only come back when I feel there's a problem rather than when they say I have to come in.

Ironically, I think the knowledge that she's so sympathetic to my beliefs makes me more inclined to keep going to the clinic. It's kind of odd now, that when I'm there, when no-one else is looking, doctors, nurses and health advisors that I've met before give me a smile or a wave hello, not wanting to single me out to the other patients in the waiting area by making it clear I'm a regular, despite my big blue file.

The doctor's agreed to email me the result for my CD4 count and the Viral Load they took again because the last one could have been elevated because of the concurrent infection I had. I'm always going to hate that phrase, incidentally, but it was my request to redo that test just because, I don't know, for someone against state and arbitrary authority, I'm actually pretty autistic when it comes to numbers and I like the comfort that things aren't getting rapidly worse.

So, let's hope I get an email in a fortnight from my doctor, rather than a panicked phone call, but I can't see any reason why I would get one of those when, it seems, I'm deservedly in really rather brilliantly good health.

Ironic, I get HIV, then I'm healthier than before.

Settling In

I wonder why I'm feeling an urge to think about other people I know with the virus and compare my angst about it to theirs, as though there's any kind of merit in saying that my infection has upset me any more or less than it has for other people I know. I mean, I have friends for whom it has become the centre of their life, where they make art around the idea of their infection and you can't talk to them for an hour without the topic being brought up one way or another. Equally, I have friends who I can't help but wonder are in denial because they're out doing all kinds of self-destructive things and perhaps are literally running themselves into the ground.

It's been three months, just one season that's shifted from late summer to a definite autumn and I think on the whole I am pleased with how my thoughts have mellowed on the whole issue of being infected. It might just be that now I'm talking about it less that it sits less on my mind, but it has become something of a joke between my partner and me. If, say, I have a headache, we blame the AIDS. If he stubs his toe, it's the AIDS.

It's not some sword of Damocles hovering over our heads, waiting to fall and slay us both, but it's the knowledge that at some point in the future, we're going to step out into the road and be hit by a bus. Until we're actually ill with this thing, it's hard to know what to do about it.