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.