CD4 Count: 85

I should have been really traumatised, but I don't think I am. Yesterday, I was out shopping with my sister and trying on some very bad things she thought it would be funny to dress me up in, got out into the street and had a voicemail asking me to phone the results line of the clinic when they opened because my results were, he said, "Awkward".

Trying on shorts in Nike Town until they started playing music about how good it is to shoot gay people didn't really serve to distract me from the nagging thought that I really should be concerned about this, knowing that it means a result below 200, so she and I went for vodka and orange (yin and yang in action there) in Soho with a friend of mine. Had a wonderful evening, got home happy and went to bed with a smile on my face, completely forgetting I'd thought perhaps it would be a good idea to take Valium to help me sleep.

Woke up coughing through the night, convinced myself I had pneumonia, had some Cherry Tunes, then convinced myself I had TB because the phlegm I coughed up was red. Laughed at myself a little bit, then fell back to sleep.

Got up this morning a little too early, decided to make a compliation CD rather than take Valium, kept making myself wonder if I was overcompensating by sticking Nine Inch Nails in the middle of camp songs to send in return for a compilation CD I received before Christmas.

Phoned the results line just after nine. My CD4 Count was 85 and my Viral Load about 57,000, which just makes very little sense. I was in the clinic by ten to have the blood test redone. Had a funny chat with the nurse about how veins sometimes jump out of the way when the needle goes in, which mine did, so we had this sort of strange moment where I'm trying to wiggle my arm so some blood actually came out.

Left me giggling in the waiting room until my doctor came through. Oddly enough, despite having phoned a friend of mine on the way to the clinic for reassurance about drugs and stuff and sent a couple of worried text messages, by the time I went in to see him, I didn't feel worried at all. He said that it was a very odd result, not just for the low CD4 count, but also that my viral load was lower than the last result and that the CD4 percentage was 51% of all my T-helper cells. I got a little lesson in why HIV jargon stopped talking about T-cells and moved to CD4 counts, which was interesting, but perhaps not the focal point of our discussion.

It may well be an oddity, but I suspect my CD4 count is low anyway, just by extrapolation from what it was before. I said as much to the doctor and said I was surprised I hadn't spent the previous evening worrying about the phone call and convincing myself I was about to die. He patted my big blue file and said, "You know, with this, you're going to live forever?"

It was good to hear it. He went on to say that about five times in a row, just in different ways, so suddenly the thought that the virus had been playing Hungry Hungry Hippos with my immune system didn't seem such a threat any more. I do not have any opportunistic infections, I don't have any AIDS-defining illnesses and if I can run up the stairs to the clinic without getting short of breath after walking there then I'm guessing I'm in reasonably good health and my panic about my tonsils and thus thinking I am in the last stages of every archaic and slightly quaint illness in the world isn't really likely to be based on anything but slightly indulgent hypotheses.

Nevertheless, I'm on the same antibiotics I used to have as a kid, but this time they're not banana flavoured, sadly. I'm to take them until I hear back about my results next Thursday, then either I stop taking them or I come in to the clinic for a big talk about combination therapy. It's a bit soon, but I always did rush into things.

Proximity and Distance

Wonderful, long conversations with my family over Christmas have left me thoughtful at the moment, particularly around one issue. My mother said that sometimes she has to check herself because she forgets that other people haven't had the life experiences she's had, so things she discloses quite casually are shocking and confusing to other people she meets. Now, I think that the people who know me would agree that it's fair to say some of the life experiences I've had place me pretty far outside of mainstream experience.

I was sat in a pub last night with my ex-boyfriend, listening to him talking about how he didn't think much of spending Christmas Eve up all night having sex with a stranger on disinhibitory drugs and, well, all the other things about his re-invented life now he's free to go in the direction he's wanting to head that I won't go into here out of respect for his privacy.

It makes me look at guys I see in pubs, in the street, in cafes and online and wonder whether or not they and I could really relate any more in any meaningful way. My mother says my nose has changed shape over the last couple of years and attributes it to drugs and I think she may be right.

My thinking now is along the lines of whether or not I can turn back along the road I've travelled the last few years, the strange choices, the extreme situations, the experiences I've had, or not. Can I get to a point where, when people ask, my deciding factor in fancying a man is whether or not he'd be a threat to me in a fight (most aren't, and I think I say it for drama), whether I can break the cycle of meaningless but diverting casual sex with strangers, the deliberate choices to look for people as fucked up as I wonder I might have become?

Within the relationship I had, I think he and I both used one another for collusion with our drug use and high-risk behaviour. I'd think I was okay because I never got as wasted as he did, he'd think it was fine to get wasted because he never sought out people for violent sex.

I do think the diagnosis has some part to play in it, leaving me without much sense of fear, but I've never really worried for my life, so I can't pin it on that, but the sense of shame and poisonousness that accompanies a diagnosis does leave me with the feeling that there's a distance between me and people who are negative. Either that I pose a threat to them or that they just won't understand my experiences. Or, worse, they'll remind me of the space I could have occupied if my life hadn't taken off in the strange trajectory it has.

I don't do things by half-measures, I never have, so I suppose it's hard to imagine a life where I live within mainstream parameters. My appearance, my body indicate my decisions to move outside of the norm, my behaviour confirms this. Realising that a week ago I was seriously considering starting a course of steroids in the new year has made me think about why I can't just accept that going to the gym as often as I do has left me in fantastic shape and must help with my health, whereas steroids might change my appearance, but not make much difference to my strength, but a big difference to my health.

I'm kind of obsessed with experience and novelty, not with sustainable self-development. The thought of doing the same things for a protracted period actually frightens me in a way I'm sure a psychiatrist would seize upon, but I've lived the fifth gear lifestyle for a few years now and I'm sure it's time I realised that that's getting boring too and the only ways out of it are either to walk away or to push myself harder, pedal to the floor until I wrap myself around a tree or something.

I'm not like other people, but that doesn't mean everything I do has to go further than anyone I know. The thought of simple things, like breakfast with a lover, of someone washing my hair, seem slightly hard to imagine sometimes. Talking to people online, guys I thought attractive or interesting, it was nigh-impossible to find someone who wasn't spending Christmas Day on cocaine.

I wonder what's going on with gay men, or people in general, that there's this overwhelming self-destruct going on. Is it body-crisis about HIV that so many of us are on Steroids? Is it the way we've been brought up to equate our sexuality with death and entropy that there's such a high percentage of nightclub casualties, crystal zombies. Do we all really believe that we're the walking dead?

I may be the walking dead, I may carry the seeds of entropy within me, but I think I'm reaching a point where I've got to make some kind of decision about which way I walk. Turning back, it's a pillar of salt, running forward and it's yet more fire-walking to endure.

Happy Christmas, Mum - I have AIDS!

Well, not quite, but I do feel a certain amount of guilt for disclosing to my mother this close to Christmas, but she could tell something was wrong and I was low and tired, so I yielded when she insisted I tell her what's up. I hope, I really hope it's not going to turn out to be the wrong choice and that the family will be supportive and understanding, which seems to be the case so far, but I'll probably have to spend some time with them explaining exactly what an HIV diagnosis actually means in practical, experiential terms. When I have a home internet connection, I'll be able to devote more time to this blog and to putting in things like that, to help explain what it's meant, but in the meantime, this blog remains the record of what HIV has meant so far.

Trust No-One

I guess this weekend has been a very effective lesson in trust and insight. It's not possible to survive diagnosis, breaking from a long-term relationship and moving to live alone as well as "being there" for a lot of people around me without there being some kind of kick-back sooner or later. I guess this weekend's been that lesson. Don't trust people you don't know, and, to be honest, don't trust people you do know, when it comes to your health. Well-meaning friends who have bad advice for when you're too anxious to sleep may do more harm than good and, in the end, what's needed is a bit more honesty about the situation I've been in for the last few months.

As a result, talking to my family has begun, which is daunting and I've asked for a psychology referral at the clinic to start dealing with the issues I've had around fear and guilt to do with the diagnosis. It's a hard step to take, as is talking to my family about it, but I know they're both taking me in the right direction, which is away from the sense of shame that this virus fills you with.

Breathe in. Breathe out. Relax.

Within three years, it's very likely I would have an AIDS-defining illness, given the high viral load and plummeting CD4 count that I have, but as yet, I don't have any evidence of opportunistic infections, so there's no urgent need to be concerned about it.

Yes, my metabolism is elevated to the degree that it's going to be difficult for me to regain the weight I lost and I have to get my sheets washed with annoying regularity, but in the end I'm well at the moment and that's the thing to bear in mind. Sure, if this trajectory continues, I'll have to have the talk about combination therapy in the new year, but that's something to deal with as and when it comes up. Not really a great deal that I can do about that kind of thing either way.

One thing about being single again is that I can more comfortably disclose my status, which is something I had been wanting to do, but my then-partner was anxious about the effect it would have on the people around me, or that I would have to spend too much time dealing with their grief for my death, perhaps 40 years before it becomes likely.

What actually seems to happen, though, is that my friends deal with it just fine, make fun of me about it, or say that they're in the same boat, so there's no drama to suddenly contend with. The people about whom I do worry with this is my family. I am hoping to find the courage to tell my father when I visit him next week, and somehow I really do have to tell my mother, but I know it will be difficult for them both to take in as something that isn't the death sentence I'd grown up knowing it to be. I suppose it's like coming out as gay all over again, but we're a close family and it would be ridiculous to deny them access to knowledge of a major part of my life, particularly if it's something I want to become politically involved in at some point, but I know it will be hard to let them know.

Still, there's good news. My cholesterol level means I am going to have a lower risk of heart problems, contrary to previous advice and my dentist tells me there's no evidence whatsoever of opportunistic infection in my mouth, so there's nothing to worry about just yet. Also, I don't have CMV or toxoplasmosis in my system, like 50% of the population, so that's two fewer things to worry about.

Telling friends I'm cool with, if they're friends, they'll be okay with it. Telling work just isn't going to happen, because I'm freelance, so it would be very easy for people to decide not to book me rather than blatantly discriminate against me. I'm not actually protected by the change in law, except against my direct employer and that's me, so that's not really going to help a great deal, but I suppose it will help some other people.

I've told a few people recently, though, a guy who I have messed around with a few times and felt guilty for not disclosing now tells me he's in a serodiscordant relationship so serostatus isn't an issue. I think anyone who uses words like serodiscordant is probably good to know. I told another friend, who is a scientist, who then told me he can give me heaps of advice if I do start therapy, another friend just looked sad for me, but that's also allowed. I'm not a sci-fi superhero for the virus I carry within me, it's still not a good thing to be, so yes, sadness is an appropriate reaction when being told someone is positive.

But I can only be sad for myself for so long. After sadness comes defiance, resignation and anger, but all in good time. I have plenty.

Think It Through

It's not the end of the world, I know that, it's just a bit of a jolt. My friend still loves me, my friends at large still care. It certainly makes some sense of the overactive metabolism, the weight loss, the night sweats I've had since diagnosis. I've got a dentist's appointment tomorrow, where I'll ask her to look for any evidence of opportunistic infection in my mouth and if there is any, I'll go to the doctor I like the most out of the ones at the clinic and say to her not to worry about confirming the result, but start talking medication.

I Am Disabled

Previously, people who are HIV positive were not protected by the Disability Discrimination Act on the grounds that the virus in and of itself didn't constitute an illness or disability that prevented a person from carrying out normal everyday tasks, but once someone was ill as a result of the infection, then yes, they could say that they were disabled by their illness, but while they were well, their employers could fire them for being positive, could deny them promotions and spit at them in the street on the way to work, as well as any other humiliating treatment they felt like dishing out to us vile positive people because, hey, we're so dirty and it's our fault.

Well, it looks like the DDA has finally gained some concept of the notion of the Social Model of Disability, whereby it's not that the person with a disability has a problem, it's that society fails to provide what is needed by those people. For instance, wheelchair users aren't disabled by their legs, but by the lack of adaptations for their wheelchairs. In a similar way, finally, HIV positive people are disabled not by the virus that resides in their blood and their brain, but by the shocking stigma branded upon them by "Them" - those people who don't have this little parasite.

I think this will make disclosure in the workplace more possible, since it also means that disclosure is bound by the same confidentiality requirements as the disclosure of other disabling conditions.

I do wonder, then, if this now means that HIV+ people will be able to claim Disability Living Allowance, because that uses similar terms to define disability. It might be worth attempting to claim, since it's an entitlement that isn't dependant on financial circumstances or on inability to work. However, it's very much based on ability to carry out day-to-day tasks, so I don't think that's a winner, unless they also shift more towards a social model.

Fuck.

After having done my research and thought that I would have a few years before I had to even think about getting medical intervention, my doctor just phoned me to let me know my results. My CD4 count is half that it was at my first test and my viral load is more than 3 times what it was. The viral load change isn't significant, but when CD4 attrition is usually about 40 points in a year, to go from around 520 to 280 within 4 months doesn't bode well at all for me. I'll get retested in the new year to confirm, but it does mean a very harsh decision for me to make about state intervention in my life and what that means for my prognosis.

And there was me telling my beloved friend none of it mattered. Suddenly I'm the one frightened and uncertain and he's the one heading home contentedly and I'm still so certain there's no difference between us? Fuck.

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.

Round Two

Well, seemingly I spoke too soon about sex with other positive guys being less complicated and wound up in the clinic getting antibiotic jabs. I guess that's just another indication that nothing's changed. I also picked up my new viral load count, but they lost my CD4 count. I did jokingly ask the doctor if that meant I had a CD4 count of zero, but they took the blood again. It seems I've spent the main part of the last few months with tracklines on my arms from one blood test or another. My viral load is now 41,000 or something, which rather throws my hopes that I was such a recent infection that my viral load was going to get lower.

I didn't really want to think about it at the time, but it could be an anomalous result because, as the doctor said, I had a concurrent infection. It's slightly daunting to think that every time I get ill, it will be with a concurrent infection. Just another reminder that I carry a spreadable disease.

I guess that's the rub with HIV. There's all the drama and the novelty of the initial infection, then there's just this gnawing constant because it will never go away. Any infection from now until the day I die remains a concurrent infection. That's a deeply unpleasant thought, although one to keep in perspective. Having a lower viral load isn't some kind of contest, there's no moral weight attached to being less infectious. It's not like there's some correlation between your numbers and the circle of hell to which you will descend.

I know, intellectually, that it's a minor fluctuation in the scores, and likely one to do with the concurrent infection I had at the time, but I can't help but shake the feeling that, oh, God, it's double what it was. I'm twice as infectious as I was when I was diagnosed.

I suppose it would pay to keep that in mind when I start to get complacent or whenever anyone thinks to convince me of the merits of barebacking.

The Blue File

Well, I've been back to the clinic, had some more blood taken. I had a virus (another virus) at the time so I wonder if that will have dented my CD4 count when I pick the results up in a couple of weeks. Sitting in the clinic waiting room, I found myself thinking about my HIV status for the first time in a couple of weeks. To be honest, it doesn't play on my mind nearly as much now that the initial novelty or horror of it has worn off and there's still bills to pay, still work to do, still people to see.

After sitting there for a few minutes, I noticed that my file was a thick, blue, ring-bound file, whereas most of the other people there had thin, brown paper files. Clearly, the thick files are for HIV+ patients and I did kind of have a little bit of a sad, yearning moment there for the time when my file was a thin, brown paper file. It's probably not really brilliant in terms of disclosure that there is this differentiation, because after my initial sadness at being the only blue file case while I was waiting, a few other guys came in and after fifteen minutes of watching people going in to see doctors, nurses and health advisors, I knew the HIV status of all the people waiting there that day.

I talked to the doctor, who was very friendly and reassuring, mainly just to check in with them to know that I'm okay, which I am on the whole. It's still a learning curve, and I'm realising now that it's not some scythe hanging over me, it's not some black mark on my forehead, seared in my skin. The stuff in the papers about how HAART resistance is increasing and how HIV resides in the brain is hard to take, partly because of the way the papers talk about HIV infected people as some kind of "Other" which has a strange impact on how I feel I fit into society if I am suddenly some invisibly different and dangerous chameleon.

I also talked to the doctor about my moles, she's going to write me a referral letter to the dermatologist at the hospital to talk about options. I'm currently of the thinking that I'd like rid of every last one of them, but I don't think they would recognise that as a clinical need.

I've stopped thinking that every time someone doesn't text me back, say they're up for a shag when we used to shag or they don't reply on gaydar that it's because I'm positive and they hate me for it. Of course, that's only the people who I know now know, though, and that's not a pool of people I would like to see increased. The people who know, on the whole, it is on a need to know basis, that they're either likely to come into contact with me sexually, my blood, or that they are the people I turned to in what I thought was my darkest hour of recent months. I'm okay with those people knowing, and I really do appreciate the support and love I've been given during that time, but, for instance, one guy who knows doesn't seem to talk to me so much, I wonder if that's just that we've drifted apart and another guy I am less keen on spending time with than I was when I told him. I'm not so anxious that I think I need to keep him on-side in case he goes out and tells everyone. "So what?" would be the key response, I think.

Run Down

I've thought much less about being positive this week, which I think is a healthy sign. Had sex with one guy this week who was positive which was so different to the experience the week before, not just in terms of different men having different bodies and different personalities, but in terms of the anxiety just not being present. Perhaps I should still be anxious about re-infection, but the evidence doesn't seem to be there for any indication that having different strains of HIV makes any difference to your prognosis. Nevertheless, until this year, they didn't think fucking someone without a condom was high risk and look at where I am now as a result of that ignorance.

In any case, I don't think that by any measure the psychological impact of reinfection would be anything like infection in the first place. I know that it's starting to sound like serosorting, but I'm not going to analyse it to that point if I can avoid it. It's just as likely that I was more relaxed this week because I'd processed all the guilt and shame that went with the guy's concerns the week before. I'm pretty sure it's largely that, because the guy who I said had freaked out has been sending me friendly texts and stuff and not mentioning it again, so it probably was more of an issue for me rather than him.

You know how they say in safe sex stuff about how people tend to assume people have the same HIV status as themselves? I'm kind of worried I'm starting to do that. Whenever a friend says they have a cold or anything, I assume it's because they're positive. This is something I'd really like to nip in the bud, and it's probably another projection of my own anxieties about my status onto other people.

Bleeding Moles

While having sex with a guy I'd met through the web last week, he caught a mole on my back and I told him my status, which then initiated a huge panic about whether or not I'd exposed him to the virus. I felt an enormous surge of guilt that I'd not said from the beginning or that I'd not just gone with positive guys like I had considered before. Looking back on the experience, though, I think that rather than prompting me to go all out and tell everyone I meet that I am infected and thus infectious, that I'll stop telling people. This may sound callous and dangerous, but I will tell people instead that my status isn't known, that I haven't tested for a long time so can't say I'm sure about my status. In addition I will take extra cautious about making sure I don't expose other people to risk of transmission.

As I said before, I don't think I want to start choosing partners on the basis of their serostatus because that feels unnecessarily leper colony and distinctly punitive, something I want to avoid quite keenly. I am, however, going to start looking into getting moles and skin tags removed because they do present a risk of bleeding during encounters with other people and, as such, I should really try to minimise that risk. It means telling my GP, which I'm not keen on doing right now, but I might wait until I've had my next clinic appointment with a doctor there who can tell me if that's a sensible precaution to take.

The idea that I'm even considering having parts of my body removed as a result of this infection is something that repulses me, but the annoyance of them being caught and the risk that poses to other people bothers me more, I think.

Serosorting and the Trouble with Numbers

Okay, so the safety in numbers approach really isn't working out so well. I'd thought that by making HIV a mathematical problem that could be dealt with in terms of prognosis and flowcharts would make it all make more sense - or any sense at all, if I'm honest - but I'm realising the dangers that come with it. First of all, it's perverse knowing the CD4 counts of loads of my friends and swallowing the sad knot in my throat when one guy was complaining that his count dropped by 40 since his last test. His lower result is still twice mine. If I continue using CD4 count and Viral Load as measures for health then I know I will go insane, if there's not already a danger of me heading that way anyway. There'll always be people with more, always people with less. I need to step back from that and actually look at the non-numeric side of it and stop feeling like I'm counting the grains in the hourglass. I'm healthy. Hell, I'm in damn good shape right now, if nightclub attention is any measure of bodily health.

One thing I'm noticing in myself though, probably a manifestation of toxicity anxiety, is that I'm really wary of sex with guys whose HIV status I don't know. Actually, that's not entirely it, I'm cruising guys and in my mind I'm making judgements about their HIV status without any basis in fact - looking for Antiretroviral side-effects, lipodystrophy and such like on the grounds that I couldn't bear the thought of infecting someone. Not that I'm planning on barebacking, even if there's no evidence to substantiate the dogma about re-infection making you more HIV+ than you were before, somehow, but just because it's a done deal.

I recognise, though, that serosorting without knowing for sure that someone is positive presents a real danger. If, say, I have it in my mind from someone's behaviour that they're probably positive, say, from comments they make that I interpret in a certain way, or if they push their arse against my cock without mentioning condoms, then I'm much more prone, particularly if I'm drunk or high or just depressed, to fuck without condoms. This would be a bad idea for several reasons.

If I'm assuming people are positive, I may well be wrong in my judgement, their comments could have been about something else, or their pressing themselves against me could be an incitement to fuck but with the assumption that I'm negative, or with them placing the responsibility for safe sex with the guy fucking.

If it's the other way around and they're fucking me, it might be that they don't think you're likely to catch HIV from being a top, because literature says the danger is from getting fucked without a condom, rather than pointing out that it works both ways, so they'll assume that I know they're negative and think it's fine that they fuck me.

Unprotected sex is just that and it's not like both being positive makes you immune to other infections or problems - I think that people assume that because HIV is demonised so much it's the worst case scenario, so fuck it, what is there to lose, you're already positive. The mathematics of how having the clap messes with your CD4 count aside, a dripping cock and green stains in your calvins really don't make for a good way of life.

Of course, the biggest and most important factor making me think I should not get into barebacking is, well, the shit-cock thing. I'm not sure I'd suck someone's cock straight after they've been barebacking someone - scat really isn't my scene - and getting shit on your cock is not really something likely to inspire passion in anyone.

So, for now, it's another trip to the clinic to pick up a carrier bag full of condoms, I think, and stop getting tempted by the supposedly increased intimacy of barebacking and think seriously about the clap and shitcock as good reasons to play safe as much as not wanting to transmit HIV.

Inverted Pride

Hm. My partner's viral load is much, much lower than mine. I know what the mathematics of that implies in terms of our relative positions on graphs and such like, but I don't want to dwell on it. Instead, I'll just have to remain extra cautious because of just how infectious I am in comparison.

While I'm not going to start saying being infectious is either cool or the end of the world, what I am going to say is that I'm realising now that the worst things about being HIV positive are nothing to do with your health. Aside from the countries you'd stop someone from visiting if you infected them, you're costing the state a phenomenal amount of money in terms of health care once combination therapy begins and you're forcing someone to live with what must be the most stigmatised illness of our era. Having HIV to many people still seems like being a leper. There's an enormous pressure to disclose verbally your HIV status so people (who, "assume everyone's positive" apparently) know for sure that a mistake means risking seroconversion - what am I meant to do, turn up at a sex party ringing a bell to let everyone know that I'm the fuckup who caught this thing and I'm the fuckup who can give them this Peter Pan disease where you'll never grow old...

I'd like to see a profile somewhere on gaydar that doesn't say, "Positive in body and mind," or "HIV+ and if you've got a problem with that, it's your problem," or whatever. Why aren't there profiles that say, "I'm HIV+ and I fucking hate being positive - I really, honestly wish I did not have this condition and it's phenomenally depressing to know how dangerous I am."

I'm not happy or sorted about being infected with HIV. The thought that something has wormed its way into my bloodstream, into my brain, and is slowly shutting down my defenses against illness is a horrible, stomach-churning thought.

My partner shrugs and says there's nothing he can do about it so he's not going to worry about it, but I can't help but feel I need to grieve for this and that I need to feel entitled to the sense of anger, resentment, frustration and loss that I am experiencing without that sounding like I'm a failure.

Testing positive has had a profoundly damaging effect on my self-esteem which, like that of most gay men, is very tied to my feelings about my body and the consequences of that have spilled out into my friendships and my relationship. I don't feel I can spend considerable time with people who don't know my HIV status and feel that I am honest, I don't feel I can go out and fuck around without feeling like we should all stand in a circle holding hands and singing, "Ring, a-ring of roses..." together until we all fall down.

It's painful to think that there might be people who I have infected. I can only hope that if I have unknowingly passed it on, then those men are better-equipped than I am to cope with the emotional cancer that accompanies it all.

Perspective

Been doing a little reading this morning because the dustmen woke me up at six ("Hey! Stop with all the noise! Can't you see I'm HIV positive? Haven't suffered enough?") so I've managed to depress myself a little bit by looking through aidsnet and ticking my way through their list of countries with restrictions on travel for HIV positive people.

In typical British style, the information for visitors to the UK is contradictory. You will or you won't be tested and if you're positive you will or you won't be deported. However, given that most new cases of HIV in the UK are immigrants, allegedly (although I admit this could be racist nonsense), I'm guessing that whatever controls there are aren't that thoroughly enforced. America, though, are shitty about you trying to get in carrying HIV medication and have had a blanket ban on foreign visitors with HIV entering the country for something like twenty years. More to the point, they stamp your passport with something that declares your HIV status, not something you'd be wanting to have, unless you want bugchaser trophies.

How badly do I want to travel to countries that ban people from entering on the grounds of their HIV status, I wonder. Of course, until I start on medication, it is a simple matter to lie and tick a box on a form that perhaps I shouldn't knowingly tick. They're unlikely to fork out on expensive testing to check if anyone's lying.

Speaking of prognosis, I just found a very interesting article on aidsmap.co.uk about what CD4 count results mean. It's interesting that uninfected women have an average CD4 count 111 points higher than uninfected men and that smokers tend to have a higher CD4 count, too. Maybe it's an argument in favour of taking up the cancer sticks again.

My CD4 count at the initial test was 527. Since the normal range for people without HIV is from 400-1600, I'd assumed this was quite low, but aidsmap tells me that in a US study of people brought into an intensive care unit, the average count was 510. Compared to people with really nasty health problems requiring intensive care, I win by 17 points. I suppose that's a good thing? However, I've got to bear in mind that CD4 count fluctuates all over the shop, so what needs to be looked at is the overarching trend, which may take a year to discover if it's only every three months that it's checked.

They say that the average rate of deterioration of the CD4 count is about 40 a year and each fall of 100 points roughly doubles the chances of upgrading to first class and having "Full-blown!" AIDS. A CD4 count of below 200 is considered the danger zone, so that's when you usually get put into business class and get all the expensive drugs and can't go to America any more, but they'll start talking about it when you hit 350 or so, depending on how healthy you've been, the rate of decline and such like.

However, rate of decline is meant to follow your viral load - 10,000 is low, 100,000 is high. No wonder I scared my friend shitless when I said mine was something like 250,000 because I forgot how many digits were in it. It's 26,351, so it's on the lowish side of things. I can't seem to find the average viral load in people with HIV but it also seems subject to odd fluctuations depending on age, gender and ethnicity, so perhaps I need to look into that some more. Regardless, assuming a 40 point decline in CD4 count per year, that would give me about four and a half years before we talk about combination therapy and about eight years before I'm at 200 and will be forcefed drugs.

Thinking about it, though, the numbers and figures aren't a good guide to what could happen, what interests me really is the social and cultural prognosis, as well as the prospect of better treatments. They say sodium valproate can force the body to release dormant virus cells which can thus help eradicate them - interesting possibility, perhaps I should ask my friend's bipolar boyfriend about that, should we ever meet. They say crocodile blood could cure us and give us all peculiar regenerative powers. Interesting, huh? Sounds like we could go from blotchy zombies to superheroes pretty damn quickly, eh?

I wonder how attitudes will have changed by the time I actually could do with some intervention rather than monitoring? If they introduce ID cards, will they ask for medical information to be stored on those? With the current shift here in the UK towards the kind of police state that I'm sure should be led by a camp Sith in a cheap cloak, with fewer people gaining increasing power in the country, I do worry about the possibilities that this might imply for the socio-cultural prognosis for this country on all kinds of issues which impact on people from minority groups, so the fewer places that have a list saying I'm a gay boy with the plague the better, I say, until the revolution comes!

Since I was working in the area, I popped along to the clinic to make a few appointments rather than waste ages on the phone. While I was there cheerfully appointing myself for blood tests, dieticians and the secret code-word "Medical" tests I realised that the guy next to me was this really sweet guy who I'd talked to one night about films and things and we'd said we'd do DVD nights and stuff some time. He was sniffing a lot and avoided eye contact, then the receptionist who was dealing with him was saying, "Oh, yes, we need to set you up with anumber because this is your first Medical Appointment." So yeah, I guess it does happen to other people I know, and not just people who I've known who've had it for ages and ages.

It's odd, it's not so long since I was that man, awkwardly not knowing how to say it's not a sexual health screen I'm booking in for, then they told me to ask for a "Medical appointment" rather than say, "No, I'm positive, I need a check-up for that." Now, I'm breezing up to the counter, my clinic number stored in my mind, booking myself in.

Am I really that okay with it already? I guess so, although I had low points over the weekend, they might have been coming anyway. Perhaps it's self-preservation that has made it all seem like a glib anecdote, that has turned it into a thing of numbers and figures rather than reflecting on just how poisonous I have become. It was certainly self-preservation that kept me from turning to the guy next to me, giving him a huge hug and taking him for coffee.

I think it's been really useful for me to have people who I've told about this who can talk to me about their perceptions and their experiences, but I'm still aware that I really should be exceptionally careful about how many people I have told. The temptation is, of course, to be bolshy and up-front about it, to tell the world, to blog elsewhere about it, to have a t-shirt made that says "breakfast PEP Included." in some kind of move to force it so hard into other people's faces that I can say, "I DO NOT HAVE A PROBLEM WITH THIS!" so loudly that it's bound to be very obvious indeed that I really do have quite a profound problem with it.

A friend of mine who seems to know a bizarre amount about immunology and HIV for someone with an arts job said a few things that left me wondering about where I got it from, but as another friend said, how would knowing that actually change things? Would I find the man who infected me and do what, casually mention that he's murdered me? Beat him up to give me some perverse sense of retribution? No, there's nothing to be gained through that kind of knowledge or retaliation. I'm not retaliatory, although I suppose if I could pin it down to a specific mistake or moment, then I could feasibly make sure that person knows their status because I can't imagine anything more frightening than the thought that I could have infected people during the period between my infection and my diagnosis.

I remember talking to a man who burst into tears rather than have sex with me, telling me he'd just found out he was positive and told me about his daughter, his girlfriend and just how incredibly frightened he was about how, in his mind, he just saw himself totally as a toxin, as a biological weapon. It's funny, but since diagnosis, I've sort of perversely liked how toxic I am. Someone pulls a knife on you in the street, you bleed on them. You win. Other people's fear of what your very nature has become is quite empowering.

Is that such an awful thing to say? In some ways, I really like that I'm positive now. I like that my body contains enough of the virus to strike terror into people. Without condoms in a sauna, I'm a suicide bomber and we all know how romantic a notion that would be. I feel much less of an urge to top myself, to cut myself, to smoke, to take too much drugs. What's the point in making subtle moves to hurt myself or to bring my death forward when my body's taking care of that in a very real sense.

Don't worry, I'm not going to start barebacking or seeding anyone any time soon, I think the responsibility for inflicting something like this onto someone else is something for which I would not like to have just now. It's just the notion that I could. Deadly force. Becoming the medusa. It's power.

Playing Doctors And Nurses

I had my first medical appointment last week. In the end, like with most things on this front so far, it was a period of anxious anticipation followed by vague disappointment and confusion after the appointment at what any of it actually means in practical terms. In essence, I found out nothing that I hadn't inferred from the blood test results that had been given to me the week before. I have slightly high cholesterol, my liver was a tiny bit strained, probably from having had a drink the day before or something like that, so that's nothing to worry about, my CD4 count is 527 and my viral load is something like 26351, again quite okay. I don't carry toxoplasmosis or CMV, which again makes for a good prognosis.

So yeah, I'm okay, I've got to talk to a dietician and I've got to have an appointment again in three months and other than that, life goes on as normal, unless somehow I can vampire kiss a crocodile some time soon.

Enough Looking Back

I'm sure the back story is something you can guess. I've had a couple of weeks of agitation since my diagnosis, I've received my CD4 count and Viral Load results, which would indicate that I'm only relatively recently infected, so we need to test regularly to see where my baseline figures lie. I've told a few of my friends, been enormously supported by them and my lover, regretted telling only one person who was upset by it. I've learned an awful lot from my friends, I've had sex and done SM and managed not to feel too guilty or poisonous while doing it or afterwards, although I did wonder if I had deliberately thrown myself back into that pattern as a way of denying what had happened to me. Bleeding after being flogged was a strange, painful catharsis, and the man who did it to me was an angel and by the end of the evening I'd lost a lot of my fears, not only about the venom I carry in my system, but also I'd been able to examine my fear of my skin being broken, of letting go of my pride in public.

My boyfriend also tested positive. In some ways, it's a relief, because having different diagnoses would have made sex and the relationship so difficult, but at the same time, it's hard because it means one of us brought the illness into our relationship and, as such, we have to try to avoid thinking about where it came from, who fucked up, who infected whom, all that.I told the person who I'd had sex with who'd initiated the whole need to check and his reaction was also good. I'd worried he might blame me for putting him at risk, however infinitely small, but he was also a star. A few friends, a few lovers know now, but not my family. Not yet, anyway, although I've reason to think they may suspect.

Tch. I'd said I wouldn't dwell on the back story and there's me telling you all of this. Where's my head at now? I don't know, to be honest. For the main part, life continues as normal and I'm fit and healthy - as I should be when I go to the gym a lot and my CD4 count is 527, looking forward to going on holiday in a couple of weeks, slightly nervous about having my photo taken by a friend this weekend, looking at myself in the mirror too much, getting my hair cut.

In short, life is normal. About the only shift is that when I feel low, I have a hook to hang it on. I was out in a club on Sunday morning and couldn't get into the swing of it, so I started to people watch and noticed the number of people who appeared to be on antiretrovirals by the distribution of their body fat, or the number of people on roids or using drugs. Kind of disturbing to play those games, really.

I've got my first doctor's appointment at the clinic to talk through the results in some detail. I don't know what to expect, really, I'm assuming it will be somehting about which I'll get very nervous beforehand and then when it comes to it, the appointment itself will be pretty straightforward and practical. I'll keep you posted.

The Lottery No-One Wants To Win

A sinking feeling, just plain shock and confusion. Tears came quickly, then questions fell as quickly as the hot, frightened tears I cried. The Health Advisor talked to me, but all the while my mind was spinning with the horrific implications. Where did this come from? Who have I infected? Who would I have to tell? How long did I have? What did it mean?

I think that's the question that snagged. Inamongst the flashback rewind to everyone I'd had sex with in the last year came this weighty shadow of my own ignorance. What does being HIV+ actually mean now in 2005? My mind raced back through every cough, every sniff, every sleepless night, every time I woke up sweating next to my man. Were these signs that the end was nigh? Rationally, I knew it wasn't the death sentence it once was, that I wouldn't look like the living dead, that I wouldn't wither and die within months, but at the same time should I still think about getting a mortgage?

I felt dizzy and sick, such intense vertigo on a low, over-soft NHS chair, sat across from a stranger who'd just told me I now carry the world's most feared disease.He left me to make a phone call. I felt as though I'd just been convicted.

"Baby!"
"Habibi," I said, my voice dark. "I got my blood test results."
"...and?" his voice carried a tension.
"It's positive."
"Well, you had the antibiotic jab, there's nothing to be upset about."
"Honey, no. HIV."
"Oh."
"I tested positive."
"Darling, whatever happens - whatever happens - this changes nothing about how I feel about you. I love you so much."

I cried. He'd just made it all a thousand, thousand times worse. He agreed to come and pick me up from the clinic and we could travel home together. The health advisor returned to the room and talked about the practicalities of what happens now. I'd have to have quite a lot of blood taken to do a series of comprehensive tests, then visit him again in a week, I'd have to see a doctor to talk through what they actually mean and ask whatever questions I have on a medical side, then ultimately it's a waiting game. After a certain period of time I'd lose enough of my immune system that they would start me on medication, then from there it becomes a condition about as treatable as diabetes. A few tablets at fixed intervals and there it is, managed.

He was able to make it sound like an inconvenience rather than a death sentence, so I was starting to feel a little better about it all, right up to the point where he handed me a leaflet explaining viral load and CD4 count. In itself no problem, but across the top it said, "A guide to viral load and CD4 count for HIV positive men." All I could think was that I shouldn't be given something like this leaflet. There was something about seeing it written that gave much greater power to the words.I gave my blood, watched it filling little vacuum vials, thinking, "This is poison." The nurse and I made bitter jokes, laughter coming nervously to my throat. I didn't know the etiquette for situations like this, I didn't know the rules, the norms, what was expected, so I had nowhere to fall into a script I could just relax into and pretend everything made sense.

I met my man in the street and he held me close. I stood there, shivering my tears against his chest, ignoring the people who walked by us in the square outside that strange-looking church. He kissed my hair, my neck, promised me, promised me everything would be alright.The train home alternated between us pulling faces at each other like two-year olds and me bursting into tears. Once we got home, we spent the evening on the sofa, talking through what had been said to me, how he'd have to get the test, too, how we'd deal with his result, positive or negative. It was one of the hardest conversations we've ever had.

What This Is All About

"Please come in."His body language, his tone. The way he'd said my name then broken eye contact in the waiting room. I walked into the room, muttering, "Fuck" repeatedly on my way to the low chair that looked far more comfortable than it was to be sat there at that moment."We have your HIV result." I felt tears welling up in my eyes at the second of silence that followed.

"It's positive."