Going Gentle

Update

2008-05-27T10:38:00.002+01:00

So, there's news. I've not been brilliantly well lately - I've been off work for about three weeks so far, which kind of bites when you're freelance, but it's giving me the excuse to start a career change I've wanted for some time. I'm still not over the sinus problems; many rounds of antibiotics and it's just not shifted, so I'm on a raft of tablets every morning. So, when my result came back as CD4 at 365 and VL at 25,500 and my doctor said it might be time, I was inclined to agree with him. So, on June the eleventh, I will be going to the Start Clinic to get started on medication. As a bit of a precautionary measure, I've booked myself in to see a psychologist to talk through some of the issues I have about self-image and that feeling of being a risk to my boyfriend and the like as well as to talk through adjusting to being on medication.

I'm getting an enormous amount of support at the moment. My boyfriend is amazing, my friends are all wonderfully caring and I'm always really pleased with how kind the people at the clinic and also at acupuncture are with me. I don't think I'm going to face any enormous trouble starting on medication, but not being able to go back to the job I wanted to leave anyway is going to pose some interesting challenges of its own.

It sounds like I'm going to be getting the common or garden combination therapy. I'm hoping it won't make me totally loopy, but if it does, it's not the end of the world.

That Chat

2008-03-09T22:36:00.002Z

Well, it's been a couple of weeks since I went for the chat with the doctor - as always, it was more of a laugh than anything else. I've a feeling I've met him outside of a clinical setting at some point but I don't think I've slept with him or anything. I talked about the slightly vague cluster of infections I've had in the last few months and he said I should try a two-week course of antibiotics in case it was an infection in my sinuses that normal antibiotics wouldn't treat and would explain the illnesses I've had. If that didn't clear things up, I will come back at the end of March and he and I will have another chat.

The antibiotics have been and gone and now I've a couple of weeks to wait before I see him again. I have had a few thoughts since the appointment though:

* Thinking I was about to start on meds meant that there would be something tangible to all this, which was oddly reassuring as a prospect.
* Being in a serodiscordant relationship meant that, however consciously, I'd been thinking about that report that said you're less infectious on medication and would want to know I was doing all I could to be less poisonous.
* Numbers appeal to some kind of autistic tic in me where I think if I can see patterns and find logic, then I have less to fear, but I think the unpredictability of it all just seems to be playing into these neuroses.

With that in mind, when I go and see him again, I'll have a chat about my general health and hopefully I won't have had some weird infection ruin my insides in the meantime and I think I'm going to ask them to stop giving me my test results. Instead, I'll stick with the quarterly chats with the nurse who takes my blood and an annual chat with a doctor and I'll tell them that they should only get in touch with me after a blood test if there's something I need to do.

We'll see. Perhaps I need to think about it less.

Thrown.

2008-02-21T23:17:00.002Z

Dear Going Gentle,

Hope things are going well with you.

Your blood results from 7/2/08 were fine. They show that starting HIV treatment can be delayed for the time being as your count is above 350.

The CD4 count was 433 and the viral load was 17273 indicating low viral activity.

I would advise you to keep your appointment with Dr McAids next week to discuss these latest results and where to go from here.

Regards,

Dr Death

Your Friendly Local Clinic for HIV and Sexual Health

Names changed to cast a vague haze of anonymity over the whole thing. It's an odd spanner in the works. I'd been expecting the result to be like my last 2, hovering around the mark where I'd need to talk about starting treatment. Now, I'm not so sure. It's a tricky one - do I keep playing this lucky numbers game or do I think about how my health has been as more of a barometer? I've been ill quite a lot this last six months with various niggling and not so niggling infections and now I just don't know. Well, I'm still seeing the doctor on Monday, I guess we'll have a serious talk then. I guess I'd kind of been so prepared for my system to be in freefall, having a healthier result's a bit of a surprise.

Medication, woah medication!

2008-02-08T12:56:00.000Z

It's starting to look like medication is, in fact, what I need. Hmm, maybe the comparison to Roy Castle isn't so good - look where his dedication got him.

I went to the clinic last night to get my bloods done, same as always, and I had a chat to the guy there about it - I've been iller this last six months than I think I can ever remember being. I'm a one-man MRSA factory, too, because I've had about five or six courses of antibiotics in as many months. He seemed to think I was right to bring it up - my last couple of results are in the range where it's worth starting to think about it, but if I'm feeling unwell, then it's a good time to make a start on medication.

Pretty much everyone I've talked to about it has found very few ill effects with their medication - especially people who've started recently, so I'm not worried so much about that; I'd just like to be able to feel well most of the time rather than some of the time and I'd like to know I was that little bit less infectious.

I'm going back in about 10 days to talk to a doctor about which combination is likely to suit me best. Until then I'm going to try not to think about it too much.

Healthy Living

2008-01-20T09:57:00.000Z

I think the low CD4 counts of the last year are starting to be reflected in my overall health. I'm just finished on yet another course of antibiotics for an infection. After all the chest infections, throat infections, upper respiratory tract infections, sinus infections and the like I've had this last year, I've just had an ear infection that took me completely by surprise and managed to burst my eardrum.

Antibiotics have helped and it doesn't hurt nearly as much as it did. I'm waiting for my hearing to come back, which is happening all too slowly so far, but in the meantime it's kind of floored me, making me think that this might, in fact, be a reflection of my deteriorating health.

I've got more blood tests in a couple of weeks, along with audiology and the rest. I guess it has to happen at some point that I start on medication; I'm starting to wonder if I'd rather get it done now before any other lasting damage is done... it's a bit annoying.

New Year, Same Old AIDS.

2008-01-05T08:21:00.000Z

It's the time of year when everyone's talking about their amazing plans to radically change their lives - I thought I'd have a nosey through some other HIV-related blogs on the internet and came across this curious article about people who, through willpower alone, "beat" HIV. It struck me as a little bit sad. Not that I'm denying that remaining upbeat and trying not to allow HIV to make you its bitch can't help with your prognosis, it's just the sense that it's clutching at straws to say things like, "Well done!" to a guy in Berlin who stopped medicating for HIV and has seemingly remained healthy with a barely-detectable viral load. The patient seems to attribute his luck to his will, the doctors are less optimistic, saying that it looks more likely to be something to do with early intervention and experimental drugs if his spontaneous recovery proves to last at all.

The science of it is beyond me, but what interested me about it was the way that it was presented, offering a glimmer of hope to some people who are often quite desperate. I guess I'm pretty well-adjusted about the whole HIV thing - I can get on with life now without thinking about it all the time, I don't seem to be going through the depression or substance abuse that seems to be rife among other people with the virus and I'm pretty sanguine about the whole thing.

It sounds like what gets a lot of people with the virus is a very understandable fear. For my part, if a few people have had the good fortune to have tested HIV positive and now test negative - good luck to them, I say, but I've got plenty to be getting on with without spending half my time on my knees praying for a one in a million shot at divine intervention.

Inexorable

2007-12-09T10:45:00.000Z

A few guys I've spoken to have said that the thought of infection turns them on. Specifically not just the thought of flesh-to-flesh contact without the barrier of a condom, but the prospect of contracting HIV. While I think there's a bit of urban mythology about bugchasing, I think there's some slight truth in it for some people I've spoken to. What they talk about is an end to the fear and uncertainty of being "negative at my last test" and the ongoing dread that accompanies each of those tests. There's also the way that HIV positive people have had to go through a challenging period of self-evaluation and some of us come out of that chewing our own faces off in clubs, getting fucked by strangers, while others have used that crisis as a springboard into a position where we value our health and our lives a lot more than we used to.

Neither's any more appropriate a response than the other to the acquisition of a potentially life-threatening disease, but to willingly choose a slow, inexorable suicide seems like an interesting choice. Personally, I've not attempted suicide or been anywhere near it since my diagnosis, but had been previously. On one level or another I think I acknowledged that the matter taken out of my hands now so there was no merit in trying to hurry it along. Far from being nihilistic, knowing that death swam with me gave me a lot more to find good about life.

I wonder if that low-level creeping nihilism that underpins the ennui that many people feel these days drives some of us to situations where the matter could be taken out of our hands and we'd seek out, consciously or otherwise, an end to the fear and uncertainty that comes with being negative to replace it with the inexorable certainty of being HIV positive.

I don't for a moment think that the majority of people feel this way, but I have had conversations with more than a few guys who have said that they fantasise about it and secretly wish for situations where it could happen.

I don't plan on granting anyone's wish this Christmas.

How to do a CD4 Count

2007-11-29T08:31:00.001Z

Still here. Here, still.

2007-11-21T10:14:00.000Z

Sorry that this blog's been offline for a little while; I was trying to work out some better ways of keeping it anonymous, which hasn't worked brilliantly so far, but I've now got it working from a new email address that's specifically for this blog, so I'm feeling a little more able to talk here again.

I'm glad that I've got that sorted out, although I'm sure that my identity is the worst kept secret in the world, as is my status. It comes through in so many subtle little things, and I'm generally open about it, just not to people I work with, for the main part, and not with people I think will be stupid about it.

I got my latest blood test results through. My cd4 count is 351 and my viral load is 3,150 or something like that. While it's obviously heartening that the viral load is coming down, the wave of anxiety I felt while waiting for the results broke onto the shores of, well, sadness when the results came through. My numbers have been all over the place, to the extent that I've run sweepstakes on what my scores will be, but I've got to accept that they're unlikely to get better and I have to resign myself that while I'm not on medication, I do have a progressive and life-threatening condition. Of course, medication changes that and makes it manageable, but there's still a sense of bereavement for a chapter of my life that has passed and can never quite be regained.

I still struggle with the dilemma about how open I should be about my status - I mean, I shouldn't feel like it's something I have to hide from people, but I still feel that it's a failure on my part that I got infected. I mean, we all know how to avoid it, don't we? I still don't know how I caught it, who I got it from or much like that - there's a few times when I took moderate risks, but I didn't do any of the high risk stuff you're always warned about, so there's, I guess, a sense of anger as well as the sadness about this whole thing. A desire to make sense of stuff that never will.

My boyfriend continues to be amazing about all of this and is hugely supportive and sensitive about my status, saying that if he gets infected, then we've got to remember that it's a shared responsibility. Intellectually, I know this, but it would have passed from me to him, so I'd blame myself, not necessarily for the act that infected him but for the fact I got infected in the first place and therefore bring an extra complication to a relationship.

Drawing In

2007-09-21T09:02:00.000+01:00

Got a letter through today, telling me I should make an appointment for a flu/pneumonia jab because I'm on the list of people who need that kind of thing. That's nice to know - apparently I'm frail. I won't complain, though - the thought of a winter without the flu is a nice one and not to be sniffed at (sorry). Still, I think it kinda highlights how the GP and the specialists give me totally different takes on HIV. The GP gives me antibiotics every time I go, "just in case" even when it's obvious that it's just something that everyone's getting and thinks I need a flu jab because my immune system is compromised.

It's not; not yet, at least. I've got a CD4 count of 444 and a viral load of 22,691 - according to received wisdom, it's unlikely I'll have an immune system that's compromised for another five to ten years. I don't have a co-infection of hepatitis or anything else. When the GP's so twitchy about my HIV status, it makes me wonder what it must feel like to be someone who doesn't have good specialist care at their disposal and is only given that concerned look every time they go to complain about a bad back or anything.

It's funny - I'm also being encouraged to apply for a grant that I am only entitled to ask for if I'm prepared to say that I'm disabled, which I think the DDA says I am, kinda, now. Doesn't make it terribly comfortable, though, to be ticking a box and wondering what questions they'll ask and what they'll do with that information. It's funny, before, when I was ill with PTSD and had a psychiatric diagnosis and was on medication and the like, I was quite happy to be disabled, but this, which is clearly not my fault, I'm ashamed of.

I wonder if there's still some issues to work through about the whole thing. I'm sure I can understand how people wind up saying things like that they're Poz and Proud and all that, but I don't want that, nor do I want people's sympathy when I say I'm positive. There is still that odd dissonance about the distinction between the friends who know and the friends who don't know. Sometimes it's just not come up in conversation, so it's tricky, thinking that they might feel left out by not knowing.

The headfuck of HIV is more of a disability than having fewer white blood cells of a particular variety than I used to.

The End of the World, Two Years On

2007-08-13T13:21:00.000+01:00

It's been two years since I was diagnosed and I'm not really sure how much longer than that since I got infected. As before, there's not an awful lot to say, which is why this blog's been quiet. After the 300 moment, my counts went back up to 500 and I've just given bloods to get an email in a couple of weeks with where it's all at now. I'm not really sure how much more there is to say about any of it at this point. After diagnosis, I was caught up in the vortex of the breakdown of the relationship I was in and the descent of my then-partner into dark places where I couldn't bear to follow him, then the struggle to come to terms with the infection and the break-up. After that, there was the strange joy of dating someone negative who was utterly freaked out by my status, which left me feeling more diseased than ever. Now, two years on from the end of the world and I'm in a solid, happy relationship with someone who isn't freaked out by my status (and isn't bugchasing either) and a trip to the clinic feels like a trip to the hairdresser's, where it's chats about work, holidays, boyfriends and a quick jab and you're out of there. I'm not sure why there was a point where I thought I was going to need a psychiatrist to help me come to terms with that.

While I was at the clinic last week, I talked to the nurse about how the messages given to my boyfriend about HIV differed so much from the ones I get. He laughed and told me that he thinks it's a bit mental that a doctor told him off for telling a negative client that it wasn't the end of the world if he was diagnosed with HIV.

"Young people don't realise how bad it used to be!" said the doctor.

"Why should they? It isn't that bad any more." said the nurse.

Having grown up in the shadow of THAT tombstone, I can agree. It really isn't all that bad. It's horrible that it's something I have no choice about and it's horrible that it's hassle and some people are horrible about it, but the thing itself? It ain't so bad.

316

2007-04-26T16:04:00.000+01:00

Went for bloods last month and, well, I've only got a few more little soldiers than Leonidas had. Soon, it seems, my viral load shall blot out the sun and we shall fight in the shade. Got to repeat the blood test soon but sounds like those years I thought I had left before I'd have to start on medication are fewer than I'd hoped in number.

The Western Front

2007-02-27T20:56:00.000Z

...all quiet.

The clamour, the shock, the newsworthiness of it all fell away. I had a boyfriend who was so terrified of infection that he started to desire it, I had another boyfriend for whom I was his first, which was weird - the virgin and the whore - then I think I've given up looking for salvation between the legs of innocent men. This is no bad thing, I reckon. I'm just ticking over now. Considering what's important. Stability, unfortunately, doesn't seem to automatically include someone else as part of that equation. I'm getting places career-wise I'd not thought I'd get to. I get on better with my ex now than I think I did when we got into all this silly mess. My heart's in a holding pattern. Sure, I do keep finding myself spending time with this one guy, but I think the slightest whisper of belonging would be enough to send me running for the hills right now.

I'm slightly annoyed with myself for over-disclosing in the earlier stages of this. People I barely know start asking me how I got it.

"I know this guy who said he got it from a blow job. I mean, is that possible? How did you get it?"

"Bareback double anal."

The conversation doesn't often go further than that. Funny, really, how people's perceptions of you change according to how they think you were infected. I'm a nice man - now, at least - so surely I'm a victim of this. Heh. As if. If anything, as I mentioned before, this saved my life in several ways. Or, least, it shook things up a little bit.

Anyhow, hello. As I said, nothing really to report here just yet. Am going with a friend for him to get tested in a couple of weeks. I'm not really sure I'm best qualified for this, only that I'd be able to find good things in either result. It's odd, though, that sense of seeing someone's fear of becoming what I am already. Strange days.

Updating You

2007-01-02T00:15:00.000Z

Not sure if this blog fell off everyone's radars this last month or two. When I changed over to blogger beta, it linked everything together through my gmail account and it became quite easy to get to my identity through this, which isn't something I was really prepared to risk, so I made the blog private for a little while. It's sorted now, so things should be ok.

That said, as much as no news is good news, good news is no news, so there's not been that much to say on here of late.

453

2007-01-02T00:01:00.000Z

These results are starting to sound like buses. Another set of bloods back, another reassurance that nothing's happening yet that needs any kind of intervention. Given that there's plenty of friends of mine who have had it for a decade, or longer, who don't need medication, I wonder if perhaps I was a bit of a fool to think there was any point in thinking about the infection at all. Sure, it's a pain, and it's certainly a factor that damages relationships for me - not because of their fear of me infecting them, but more because of my own anxiety about it meaning I'm left overcompensating, hoping that they'll like me in spite of the virus.

Pozzing Peter to Pay Paul

2006-10-11T09:16:00.000+01:00

Applied for one of those AmEx (Red) credit cards in a moment of whimsy last week, uncertain whether or not I would get it, only to receive a phone call a couple of days later telling me that not only do I get one, but it starts off with a £6,500 credit limit. When I said I wasn't expecting to use the card much, the woman explained to me that even a little bit going through the card would help pay for tablets for women to ensure that their children aren't going to be HIV+. Noble, I say, and I certainly don't disagree with it, but there's a funny way that giving money to other positive people in Africa brings up some odd dissonance in me. Putting aside the way that the money is focused on women and children, implying that men are the vectors of this disease and that charity generally is a double-edged sword, there's also the strange sense that it makes it an alien problem somehow.

Something like 46% of new HIV cases in the UK were among gay men. Apparently 30% of infections among gay men are undiagnosed, too, so the figures are higher. Gay Times this month ran an article about how many gay men there actually are in the UK as a percentage of the population. Their conclusion? Two. Two percent of the UK population are accounting for almost half of the new diagnoses of HIV in the UK. t's quite a scary proportion when you think about it and really does rather put paid to the general tendency to reinforce the message that HIV isn't just a gay plague. It certainly seems that way, doesn't it?

I'm wondering if I should try to take advantage of my own situation a little more. At the moment, I have only a tiny flat - I can't help but wonder if there's a way I could use my HIV status and the co-morbid depression to try to get a little more space to live in rather than the little pod I'm in right now. Perhaps I should pay a visit to a few housing associations in Lambeth, but I fear they're not going to be bending over backwards to help. Still, might be worth a try.

I'm also doing to start back at acupuncture and try to make myself head back to where I was, physically, nearer to the beginning of the year, getting regular acupuncture, not drinking or taking drugs, not smoking and exercising a lot. I've let slip on that and I think the numbers reflect that. Kind of falling into a pattern of not self-destruct, but perhaps a little bit of neglect - drinking, smoking, sleeping around. It's not something I'd find particularly appealing in another man and it's a distraction from career stuff.

But so is the drilling in the wall next to where I'm sitting at home. God, I want to have a better place to live.

Blaze Like Meteors

2006-09-11T09:17:00.000+01:00

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

Just phoned through for my results, rather than wait for the email. I think that's the way I'm likely to be with this. I mean, calling in means you control when and where you get the news. By email, you could be at work or on holiday when it comes. Still, there's nothing for me to be concerned about yet, CD4 is 486, up a little on last time and Viral Load is 33081, so down on how it's been. It's the first time, though, that two sets of results have been similar. Let's hope that they remain that way. I wonder if I could try to boost my CD4 through careful living a little more, so my Christmas results won't be the nasty surprise they were last year when somehow I got a result of 85 which was either to do with them making a mistake, me having a rough time of it or indicative that I was diagnosed while seroconverting. No real way of knowing; it's only been a year.

Do I need to work hard to change the result next time? No, I don't think I want to. This virus has invaded my mind as much as it's invaded my body and I'm not really willing to allow it to invade my time any more than it must. I might start going back to acupuncture, more for aches and pains than for that, but I'm generally fit and well, and although the chest infection that knocks other people out for four or five days knocked me out for two weeks, I think I'm generally healthy.

One year. Nothing to say. Let's keep it that way.

Cruel

2006-09-03T09:57:00.000+01:00

There's something particularly awful about waking up on the day after your father's 65th birthday party at which he's said he intends to be like the guy who was working on his 100th birthday and worrying that you might have pneumonia. I've been overheated again, enough to keep me awake at night, combined with a lot of stress factors I've had lately. Lost my boyfriend for a faraway land I'm not allowed to live in because of this fucking thing in my blood and losing my job because I didn't finish a qualification when things like that seemed suddenly less important than living all of a sudden. It's probably just a chest infection, but the irony is a cruel one. My father, fighting fit, dancing his heart out, while I fight fatigue and my t-shirt's patchy with sweat and I get home and fall deeply asleep, waking up damp and clammy with sweat.

There's no reason I shouldn't have a 65th birthday party, too, if everything works, if I start treatment when I need to and I stick to it all through the intervening 35 years, watching the people around me getting vaccinated against me, watching the world change while I'm totally reliant on the state, on drugs companies, for survival.

That my father could outlive me is something a son shouldn't have to consider.

Honesty and Policy

2006-08-23T06:45:00.000+01:00

The guy I've been seeing most of this year is moving out to Australia in a month or so, so he's been having medicals and such like to check he's healthy enough for them to take him without considering him an unnecessary expense for the country. He's in the middle of all of those checks at the moment, but what irks me is that after having reconciled myself to the thought that there's no way I could have followed him because of my HIV status, they don't do blood tests for students. I couldn't afford to be a student for two years, but it once again reflects the bizarre double standards about HIV. The prejudice seems to be against disclosure, rather than HIV status, because if they were worried about the impact on public health in Australia, they'd test everyone for HIV when applying for a visa and a recent court appeal in the country decided that HIV is not an excessive public expense because people generally need no looking after, just a couple of appointments a year, other than that, it's the medication that costs money and that's a different matter.

Still, he's going and I have no choice but not to go if I'm honest. Same as America, where it seems that the thing they want to keep out is honest people with HIV. It's fine to cross the border if you lie. America turns you out for carrying medication for your infection, but they do nothing to check if you carry the virus when you're visiting.

If I'd not tested this time last year, chances are I'd have had no idea that I have the virus, so I'd move freely in and out of countries without ever thinking if there was something to hide. If I didn't know my status, would I be aware of just how important safer sex was when I have sex? Perhaps not, which would have meant an even greater risk to people in the countries I visited.

My freedom of movement is not, it would seem, restricted by my HIV status but by my honest and for taking the decision to test for the virus. Having decided to test means I've lost my freedom of movement, made myself sick with worry more than once and now seems to have lost me any hope of keeping a relationship that got off to a really good start going.

I mentioned my frustration on an internet forum recently and someone answered that surely I could understand countries not wanting to incur risks to public health or the need to maintain expensive medical conditions. Understanding their rationale doesn't make it any easier to know that those restrictions now apply to me.

One Year On From The End Of The World

2006-08-18T07:36:00.000+01:00

There's not been an awful lot to say since my last update, yes, I'm still positive, still well, still holding things together. My boyfriend and I used to be so terrified of risking anything for him, now it's become sex talk and masturbatory fantasy that I "Poz him up" but it remains just a dirty thought rather than a deed. I have a feeling it's best that way.

It's a year on from the start of this blog and the end of the world has turned out to be nothing of the thought. At least not yet. I know that at some point I'll need medication, I don't feel any particular sense of dread about this. I'd still not recommend it to anyone, though, the complications for travelling, the complications in relationships, the never quite being able to touch someone you love in that way, the fleeting moments of fear whenever you get a sore throat or an ulcer. It's not a good look on that front, I tell you that, but it's not the hideous looming crisis you might think.

Yes, my results are all over the place - they kind of match with my personality in that respect - although my viral load remains higher than most I've spoken to. There's not much I can really do to change either. I'm not about to become a monk and live in quiet contemplation in the hope that'll help my body recover, nor am I going to give up and become some drugfuck clubkid either. I think there's not a significant difference in prognosis between the martyr and the whore.

It's a disease, not a punishment, after all.

479

2006-06-27T22:14:00.000+01:00

It's down again, but my results have been erratic from the start. Nothing needs doing at this point, other than trying to keep looking after myself as much as I can. When I got my last count, it was after months of abstinence from drugs, alcohol and cigarettes. I was eating very healthy food, having lots of exercise, getting acupuncture once a week and generally being very religious about looking after myself. This time, I'd just finished a four-month contract with work, was exhausted, I've started drinking and smoking again and I'd been dumped a few days before.

Of course, there are too many variables to consider in this to make for any kind of realistic correlation. Certainly, healthy living must help with staying healthy, but by the same token, I can't put my whole life on hold for this. Yes, I hear tales of men who, through meditation, yoga and tiptoe-living, have managed to remain off medication, but I also know plenty of guys who sleep around, take copious amounts of recreational drugs, bareback, smoke, drink, do steroids and the like. They still have a life - it may be a different kind of life, but it's not too good to get into value judgements. I'm not wanting to fall into fear that I might become that which I so nearly became with the lifestyle I was having before. Maybe, yes, I should go back to doing more for my health, but perhaps without the peity this time.

E-HIV and The Lands of Confusion

2006-06-18T08:12:00.000+01:00

Had my bloods taken last week - they've set me up on this Option E thing they offer at the Victoria Clinic, whereby they email through your CD4 count and Viral Load without you having to go into the clinic. Of course (as happened with that odd result at Christmas) they call you in if there's a reason to, but it's more acknowledgement that you're not going to really have much to talk about with a doctor except if you need to start on medication in the first instance and if you're unfortunate enough to develop drug resistance.

This is all good - the nurse who administers Option E is friendly and really helpful, the system seems designed to minimise the need for interference in someone's life, which is good stuff, especially since I'm thinking of leaving London.

I think I need to do some serious research into the implications of attempting to be a migrant from here to Sweden and Australia with the HIV virus within me. I don't know if there's any way around the residency rules banning HIV+ people from settling in Australia... I'd like to find out.

Rate My AIDS

2006-06-13T08:07:00.000+01:00

Submitted my second article; the editor liked it, said she may make it their lead feature for their July issue. That's quite good news, I'd say, but it remains to be seen if I can get further work with larger-circulation magazines. I'll just have to keep plugging at it.

Speaking of keeping on plugging at it, I've got my bloods this afternoon. As I've said before, I'm broadly ambivalent about getting this done. Academic curiosity about what me "score" is now is about the only big thing about it. Sure, if it's that I have more toes that CD4 cells, then perhaps I've got to think seriously about how to respond to that, but... I was about to say I hope my count's about the same as before and high, but I don't know that that's true. I'm healthy. I'm healthy however many little squiggly white cells are defending my body from invaders.

Still. Wish me luck, eh? The power of +ve thinking.

Believe

2006-06-05T08:37:00.000+01:00

My friends who I told that he'd broken it off were shocked, tried to convince me to give it another go, but it's not my choice to make and I'm not going to paw after someone, no matter how in love I'd thought we were. Of course, I'm angry, hurt and upset, but what's there to say. It's a fait accompli and I have to respect that. I adore him and I can't imagine feeling otherwise, but he's torn up and confused at the moment and I add to his stress, rather than grant succour.

I'm sad - of course I'm torn up, it's all cliches and bad poetry in my heart right now, but that'll pass. For now, it's finding my feet again, going back to the gym, taking photos for a my friend who survived the hell of months in hospital, blood tests, acupuncture, writing articles; my thirtieth birthday.

The Ritardando Diminuendo of Grief

2006-06-01T11:17:00.000+01:00

I was talking to a friend of mine on the train on Tuesday and she said that although she's used to me talking about my HIV status, what she realised, which I hadn't, is that the process of dealing with the initial grief associated with your HIV status isn't something you can immediately resolve. That it's an ongoing anxiety about blood tests, CD4 counts and the like, but also that you encounter barriers you hadn't known would be there before - that suddenly you're prevented from travelling to certain countries, you have to make all kinds of concessions and considerations in relationships, you have anxieties about work and the like.

Yes, it's waves of shock, frustration, fear and the like, but it's a cycle I'm becoming accustomed to, I hope. Yes, my freedom of movement has been arbitrarily limited. Yes, I'm a "threat to public health." Yes, I could face prosecution if I don't use condoms and discuss my status with any sexual partners. Yes, it sucks.

But, there's not much to be gained from that anger, that resentment, that bereavement for the life I had before I knew. So what do we do? Keep going, knowing that just as my CD4 count will oscillate, so will my ability to cope with it all. Luckily, the space of time between these wobbles seems to be growing; the severity of them diminishing.

+/-

2006-05-24T11:42:00.000+01:00

I'm having a quiet day at home today so I thought it might be a good chance to keep this blog active and just put forward some reflection on the last few months. As I said before, I think I've pretty much got used to being infected now and what it implies, that it shouldn't be a threat to my health or my life any time soon. The challenges now are living with it and not forgetting that it remains something I am loathe to transmit to another person and particularly not someone I'm falling for.

I think I've learned a few things about relationships, too. Serodiscordance meant that I rushed in very quickly because we had to have serious talks about whether or not he was prepared to take the risk, he has been to the clinic with me to talk to health advisors, I've been terrified that I could have infected him, I've been terrified he might just change his mind about being with someone positive and just walk out or leave me for someone where sex is less... well, less laden with the thrill and fear of proximity to danger.

Remaining serodiscordant has to remain an important consideration in the relationship, which requires trust and consideration of the honest needs and desires we both have. Condom use is an irksome necessity, but we're trying to minimise discomfort for both of us by using latex-free, although the ones we've tried so far fit him but not me. It was so good to see the difference he felt using something much thinner; he said the difference in sensation was incredible, so he's a convert, but it makes me frustrated I'm not enjoying the same thing. Finding large latex-free condoms has taken me most of the day, and it's going to be an expensive luxury, but necessary if he and I are both going to be comfortable during sex.

The other thing that I've learned, is that I think I find being monogamous much nicer.

Telling Tales

2006-05-20T10:22:00.000+01:00

It's interesting. Nine months on from diagnosis, most of the major Telling People is done, close friends, family and such like, some upsetting and difficult, some of them misguided, but for the main part, no regrets at all.

Disclosed to someone I used to have sex with this morning, which came up because he said, in an avuncular fashion, that he hoped I was taking care on the safe sex front, I said that yes, I was, because I was infected last year somehow. It was, I think, easily done, once he'd said he was sorry to hear that, we moved on to talking about what we were listening to while doing our Saturday morning chores.

At the moment, I like it that way. Sure, in a few years it's going to become an issue, maybe sooner, who knows, but I know I can't predict the future so there's nothing to be gained by fretting at this moment about it all. My future's uncertain on all manner of fronts, job-wise, money-wise, everything, but it'll all work out ok.

Touched

2006-05-09T06:44:00.000+01:00

I was talking to a friend of mine last night. He's in a serodiscordant relationship, like I am, but on the other side of the equation, being the negative partner. They started seeing each other at the same time as my relationship started, so it's interesting to see how he and I deal with the challenges serodiscordance presents us with.

He was talking about a night recently where they made the same mistake we did, that the negative partner was inside the positive partner for a few minutes before they stopped and went back to condoms. It was good to hear someone on the other position saying that he knew it was silly, that it was at least as much his fault as his partner's. I felt I shouldn't worry about blame, that it was a joint responsibility.

What he then told me brought tears instantly to my eyes.

"He wants to do it again, not because he wants to risk infecting me, but because he wants to feel normal. He wants to feel like someone wants to touch him."

Antiseptic

2006-05-07T16:29:00.000+01:00

Dying
Is an art, like everything else.
I do it exceptionally well
-Lazy Lazarus (Sylvia Plath)

Yes, I just quoted Plath, but trust me, things are very far from being that bad. Just thinking about writing after the comment on the last post about journalism. I don't think I should feel guilt for taking opportunities that are offered to me because of my status among other things, I just think it's a slight shift of thinking to go from the virus being something that threatens to destroy everything I have (which it never did, but I think we all have that fear somewhere) to being something that opens up doors for you.

So, with that bouyancy in mind, it was probably a good time to visit a friend of mine in hospital in Hampstead with Hep C (they think) and some other bizarre complications. He wasn't restricted to the ward, his condition having improved quite a bit, but still he was very obviously ill, his eyes were golden irises against whites of lemon. His skin was bronzed even though he's not been in the sun for weeks. The colour of Dettol, I'd guess. He'd lost a lot of weight since I last saw him, and he'd lost a lot of weight then, something like a quarter to a third of his former body weight gone in the last six months or so.

While obviously I'd known he's been ill, he made mention of being on the transplant list and how he was being moved over to long-term benefits, which I'd interpret as meaning that they're not expecting him to get any better in a hurry, which must be hard on anyone. My boyfriend came with me to meet him, but although the three of us were chatting, drinking fattening Starbucks drinks and went to the cinema as a group while I battled jetlag to stay chirpy and my friend battled fatigue to bring humour, I could see my boyfriend was processing a lot while we were all together. I am not particularly phased by people who are ill or disabled, although I was a bit squeamish when a friend sent me a photo of his broken wrist scar this morning, but I'm sure he was struck by it.

It wasn't easy for me, either, to see someone ill, knowing that in part I have the same thing within me. I'm hoping that I can avoid the same fate, although I can't rule out that possibility completely. I've never been so good at towing the line, so I don't know how adherant I'd be to medication, or how responsive to instructions about avoiding possible harm to myself. That said, after diagnosis, I've taken much better care of myself than I was doing beforehand, cutting out the recreationals and the parties and the orgiastic life, walk most of the journeys I make and generally manage my life a little more sensibly than I was doing before, so I can't say my prognosis for life is one of terrible decay and unstoppable doom or anything like that.

And hey, if I get ill, I get ill, it's hardly like I'm going to be kicking myself about it, just like I'm not wagging my finger at my friends who have been ill with this thing. That Good AIDS, Bad AIDS thing really hacks me off, I tell you that for nowt. Besides which I think I have BadGood or GoodBad AIDS because I could either have caught it while recklessly fucking around on drugs (BadAIDS) or from my ex (GoodAIDS) but it's moot. Sure as eggs is eggs, I've got HIV and there ain't a great deal I can be doing about that.

My friend might die. That happens. If you're deterministic enough to say that it's possible for actions to bring specific consequences, then you're deterministic enough to acknowledge that those actions were in themselves consequences, so coulda and shoulda can't really be applied with any sense of meaningful authority.

Barebacking is to HIV what a short dress is to rape?

Making a Living out of Dying

2006-05-06T06:58:00.000+01:00

Strange position to find myself in at the moment, being offered work as a journalist for an HIV charity's magazine. I can't help but find myself wondering at whether or not this is a sensible thing for me to get involved with. Obviously, I want the journalistic experience, it's a matter close to my heart and I think I have useful things to say to people about the issues around HIV. However, I feel slightly odd about getting work off the back of my HIV status and could see how readily not the charity itself, but the general HIV third-sector industry could be somewhere that I could exploit the combination of my skill set and my status to make relatively rapid progress.

I've encountered a few people who are HIV+ as a career and I think it bears the same complextities as the people who are Professional Gays or working in and with whichever other minoritiy issue. The temptation to become immersed in it seems rife and I think I want to be careful to avoid that.

My Body, The Hand Grenade

2006-04-27T06:28:00.000+01:00

Here I am, in a country where my body would have me deported. It's an interesting feeling, for many reasons. My boyfriend is struggling at the moment, understandably, with the whole issue, it frightens him and it upsets him to admit it. I'm really at a loss for how to reassure him. We both know that risk is there, that we want what we cannot have. If I say he's right to be scared, then why am I now at the point where having "it" no longer terrifies me, but if I say don't worry am I belittling his fear and being insensitive?

It aches that I am here, where my day is his night, we cannot talk except in emails and overpriced text messages, and while I walk in sunlight, he curls alone in darkness. Being so far from home, I am someone else, I cannot speak of the life I have lived, I cannot speak of the plague I carry, and that silence makes me stronger somehow, that I cannot brood upon it here, that I cannot make it a constant nagging worry because any anxiety like that means nothing. I'm not having sex while I am here, I am not planning on bleeding or sharing needles and the nights in London where the sense of this poison is very real seem so many time zones away.

Here, where my body is illegal, I can be nobody and that's worryingly reassuring.

Red Cross

2006-04-18T11:27:00.000+01:00

I was in a Red Cross museum last weekend, where a woman kindly showed me around a series of exhibits aimed to showcase the courage of those involved in humanitarian efforts and the ongoing need for people to show such charity to help the world's needy. She showed me a white bus that was used to bring rescued people home from a concentration camp, talking about the horrors endured within until I could almost feel the road beneath the wheels or the stench of death inside the bus. It was deeply moving. We talked about wells, joked about the drought in London and then she showed me a tent used after the earthquake in Iran to provide shelter for those made homeless by the disaster. All very timely reminders of the need for us to provide help in emergency.

Then, the section on HIV and AIDS, saying that 39.4 million people worldwide are living with the virus, how many have died, breaking it down by region of the planet, then down to the country and the city I was standing in. It was a strange moment to see something like that in a museum, to know that they viewed it, HIV, me, as a humanitarian crisis. The attendant was talking to someone, but the guy stood near me obviously saw that the statistics were making me reflect on something and he started to say what a tragedy it was that so many people in Europe had the disease now. I said something vague about infection rates being skewed by the numbers of people who had effectively become pharmaceutical refugees from African countries where HIV is rife making diagnosis among heterosexuals seem higher than it might actually be for Europeans. while it remains a crisis for gay men.

The man shook his head sadly, saying that he'd thought infection rates among gay men should have almost totally disappeared by now, he never heard anything about help for gay people these days and surely gay men "should know better than to get themselves infected."

I guess we should. I couldn't bring myself to say, "I knew better and I managed it," but it was there in my throat, catching like a bolus of tears. It's amazing how fast it flips from being nothing, a complete non-issue, then suddenly it's a knot in my chest, I am those Africans, I am those needy children, those medical accidents. Except I'm not, because they're victims of HIV, I'm someone who doesn't deserve that charity because I knew better. It doesn't matter that I have an unassisted lifespan of ten years, it's all my own fault because I knew better.

There's an article in the Observer over the weekend saying that a group of patients who were infected by transfusion in the 70s and 80s are pushing for £750,000 compensation because the last payout was based on the assumption that they would die shortly. The payouts were upwards of £45,000 and yet the people who were "given tainted blood" say they now live in poverty and are unable to work or form relationships because of this. So, the medical system which saved their lives once and was sued for it is now to be sued again for saving their lives again.

Ingrates, victims like that do bring out an angry streak in me, I have to say. While I'm sure they're pushing out of personal gain, it perpetuates this sense that there's Good AIDS and Bad AIDS, that there's the poor, unwitting victims of AIDS - and the article talked in terms of AIDS instead of HIV, when AIDS almost never happens in Europe any more and only very rarely is the cause of anyone's death unless they aren't adherant to medication - blood transfusion victims, rape victims, the children of drug users, people from third world countries or from socially marginalised groups. All these are the victims of Good AIDS and people will endlessly fund charities for them.

The gays, though, well, we brought it upon ourselves. We get Bad AIDS because we know better.

It strikes me that HIV provides a very politically expedient route to vent racism and homophobia, that no-one wants African blood or gay blood from a blood bank, not for the risk of transmission because all the nice white heteronormative heterosexuals feel sorry for us and want us to be victims, but wouldn't want gay blood or dirty black blood, regardless of the HIV status of Africans or gay men. The safe sex message is essentially that you shouldn't worry too much about AIDS unless you're having sex with a man who has ever had sex with a man or an African. Otherwise, if it's part of a holy union and monogamous, you're laughing.

A convenient excuse for religiously motivated oppression, I say.

Gonna PEP You Up With My Love

2006-04-15T22:00:00.000+01:00

Been a bit quiet the last couple of weeks, I know - sorry about that. I guess after the good result and the slight confusion about what it could mean and the ongoing struggle against trying to pretend I can be a CD4 Sleuth and work out who infected whom because that way madness lies. No, after the high CD4 count, I felt like such a weight was lifted from me, that thoughts of medical intervention, of anything else are all so very far off as to make worrying about the disease utterly risible. My partner and I went to the clinic and had a very breezy chat with a Health Advisor about what would or wouldn't present a risk were it to transpire that he tested negative or of a different strain if, God forbid, he was positive. It wasn't quite at the point of asking whether or not I could cut him and fuck the wound, but we were asking questions about how long the virus remains active outside of the body because, well, putting it bluntly, we like the stuff that carries the virus and want to check about things like if I cum first and then touch him, or finger him, how much risk does that pose (minimal; moderate, respectively).

It was all very healthy and I think both of us felt very responsible for having been, had a lovely chat with the guy at the counter to book ourselves in for a full screen to double-check for any other lurgies that could be lurking (although we'd know by now, surely?) and then walked out, hand in hand, laughing at the stuff that happened.

So, when he went in to talk to a doctor about whether or not he needed PEP for having been inside me for a few seconds, we both felt pretty stupid. It was tense to relive those fifteen minutes of the test, albeit remotely from where I was, half-heartedly, working that day.

He's negative, as of last week, and the doctor recommended that he didn't start PEP for the very minor degree of risk to which we'd allowed him to be exposed. This is a good thing, not just for his seronegativity, but the scare it gave both of us to have to confront the possibility that a moment of reckless passion could have resulted in an entirely different scenario. There'd be no serosleuthing going on there. It would be me infecting him, and I'd find that hard to deal with.

It really is that whole, "You, me and HIV" threesome sometimes.

Interpretations

2006-04-01T22:37:00.000+01:00

I said I wouldn't extrapolate from the results I received, from the 743, but I'm not the kind of man who can put an idea down once I've got a bee in my bonnet about something. Of course, the result was great news, I can't and won't deny that, but there's the temptation to look at it in terms of understanding how such a change could happen, that my CD4 count has doubled in the space of three months. I'd put it down to healthy living, giving up drugs, acupuncture and the like, but when my boyfriend and I went in to have the talk about which activities might or might not be advised between us, the health advisor said it might just be that I was diagnosed while I was still in the throes of seroconversion.

I don't know why, but that thought did knock me back a bit, I suppose because in my mind I'd put my infection date at February last year and thinking that it could have been far more recent than that threw my sense of how I could have caught it or from whom.

As I said before, and shall maintain, there's no merit in knowing the how, who or why of my infection. I am HIV+ and there's no-one to blame or be angry with for that, apart from possibly myself, but I don't know that I was any safer or less safe in my behaviour than anyone else would have been in the scenarios I found myself in over the last couple of years.

I'm sticking with the theory that it's healthy living that's made the difference, that a combination of stopping taking drugs, starting acupuncture, being all a-flutter with a new beau and having better sleeping patterns helps make everything a little healthier. The doctor who I saw on Thursday evening seemed to agree with this, although he had the head pharmacist in the room doing some check on the information he gives patients so he seemed to hold back a bit from saying outright that using stimulants like amphetamines over a protracted period is very immunosuppressant - or however you spell that - it's late and I've spent ages doing the redesign for this blog (hope you like it).

Still, there's no merit in knowing why these things have happened, if I'm not going to let this thing rule my life. Especially with a CD4 count as high as it was when I had my blood done. If those results stay the same or around the same region, then the only thing to fear is transmission, and I want to protect my boyfriend from anything, anything that could hurt him.

Good News

2006-03-27T10:32:00.000+01:00

Got up this morning a little earlier than I needed to, so went to the station with my boyfriend, then sauntered over to go and get acupuncture, telling them about the problems with my shins the last time I went in - they didn't really have a decisive answer for why I had a day of agony after the last treatment, nor really much of an apology, but I wasn't in a rush this morning, so I think that helped a lot with how the treatment today went.

Lay back, relaxed, feeling the warm glow of the needles radiating through my muscles, listening with my eyes closed while a woman talked about her CD4 count. My mind has been focused on the appointment my boyfriend and I have tonight to talk to a health advisor about how to ensure we remain a serodiscordant couple - assuming, of course, he tests soon and has the status he expects. Because I've been thinking about that, I'd kind of stopped thinking about my blood tests, having passed the window where they'd have called me to alert me to some kind of awkward result.

I got out of acupuncture, checked the time on my phone and thought, "What the hell," and phoned the results line, even though I was a couple of minutes after they were meant to close. Still, a familiar voice answered, a doctor I've seen once a while ago, so I was able to get my result.

Seven Hundred and Forty-Three.

Windswept, huddled against a brick wall like a smoker, I asked her to repeat it, my smile very probably audible over the line. Needless to say, this is good news, and is something I'd like to see maintained. I will still go in to talk to my doctor on Thursday to check about when I next need a test (presumably 4 months) and just to check if this might be a blip like the 85 result in December. I think, however, it won't be, because the percentage is correct, so it's not likely to be a machine fault. There's a normal level of fluctuation in CD4 results, but apparently that's more like 100-200 points shift.

So, why is my immune system in a better shape than since diagnosis? Well, as I say, I want to wait for this to be confirmed as a result, but since I'm in very good health, I would have imagined that to be accurate. I think a lot of it must be to do with lifestyle changes. In December, I was stressed out from moving flat, from breaking up with my ex, I've stopped going out on all-night clubbing benders, I've started getting acupuncture and, most significantly, I've stopped taking drugs.

I'm not going to extrapolate from one good result into a moral crusade. I'm just pleased that it's now meant I can forget about even contemplating medication for the time being. Hopefully, with a little luck, I can keep this level for a while. It makes sense, though, I'm no iller than any other person I know. I'm just going to relax and hope tonight goes well and that there's nothing to be afraid of in terms of passing this on to someone I'm incredibly fond of.

Another Potential Cure

2006-03-19T08:54:00.000Z

Seems like every couple of months at the moment, there's some potential cure or another advertised. Since I've been diagnosed, I think some of the best examples are crocodile blood and epilepsy pills, but there's another one in the offing that sounds like it's currently getting a whole load of spin from its company, being advertised as a cure for HIV while still very far from actually being able to do that, other than hypothetically. While, obviously, I'm in favour of enormous amounts of research being done into finding a cure, I'm not wildly keen on the amount of flag waving and ticker tape parades going on for early stage research and results that are only hypothetical. This drug, like the sodium valproate option sounds like it breaks down the virus in the system but not in the brain, so I'm not sure if that means it would replace antiretroviral dependency with another "drugs or death" option.

If there was a single pill that would completely cure HIV, I'm not sure it would make economic sense for drugs companies to release it, when a lifetime dependency to HAART drugs earns them over £15k per patient per annum. What does make sense for them is to allow incremental advances to be released, but not major leaps forward. They have to keep ahead of the opposition, but not too far ahead, or then the whole industry collapses. The HIV drugs industry is worth an awful lot of money and they depend on people being seropositive just as much as we depend on them for the drugs. It's a symbiotic economy. HIV disappears, all those wealthy doctors and researchers (and their investors) suddenly have to find other avenues for gaining obscene individual wealth while Africans die in their hundreds of thousands.

And would we, the HIV+ people of the world, take that pill? There's a culture built up around HIV now because of the abject fear instilled in mainstream society around the virus, so we're subtly nudged into a ghetto subculture of gays, junkies and hookers and suddenly we've got our own argot of serodiscordance and protease inhibitors, our own artists, poets and writers, we've got our own magazines, our own ad campaigns, our charities, our doctors - a whole fucking world of seropositivity. What the hell happens to that when a cure comes out?

Essentially, would the men and women who've been positive since Diff'rent Strokes was still new and fresh and funny actually want to take that pill? Culturally, we're encouraged to define our identity around the virus - sorry, the disability - we have, are we really going to be able to abandon all of that? Look at the resistance to cochlear implants among the Deaf community - would the pozzee possee really want to give up everything we've clawed together around us in order to cushion the fact that we've been living with cheeks like autobots, running around in the shadow of death for a very long time.

In Sweden, a woman who was an active member of the HIV+ campaigning community seemed to have miraculously recovered from the virus. It transpired that she'd been misdiagnosed, then threw herself into health campaigning, into pushing for improved rights for HIV+ people in a country with quite draconian legislation around disclosure and transmission. Within a few months, she tested positive again, and without misdiagnosis being to blame. The doctors said she was reckless and stupid for exposing herself to risk of infection, but the more astute commentators observed that it was probably inevitable that the darling of the campaigning movement, telling everyone how to live healthily with HIV had become, psychologically, so HIV+ that to take away her seropositivity would be like taking away her gender, her language or her ethnicity.

In our current cultural melieu, being diagnosed positive forces a massive change in psychological identification on those infected by the virus - I don't know how readily those who have lived with HIV for ten, twenty years would be prepared to go through another massive paradigmatic shift in self-definition. How many people who have gone through the struggle of coming out as lesbian, gay or bisexual would take a pill which would, "make them straight"? There'd always be that lingering sense of not being who you were meant to be, of masking your true identity.

I've had this virus for about a year, if my maths are right, been diagnosed for six months and it's changed my life. Saved my life, my mother says. Since diagnosis, I've lost 10kg, gone to the gym very regularly, improved my fitness immensely, moved to living by myself, sadly ended a long-term relationship, stopped taking drugs, taken a more responsible view towards my finances, started writing professionally, regained my artistic side and, yes, did I mention, stopping taking drugs?

Sure, many people go the other way and see HIV as a path towards the Dark Side, hurling themselves into a vortex of drug abuse and masked depression, but there are plenty of people for whom it's been an immensely powerful wake-up call. How many of us would give up that thing to struggle against? The reminder of the frailty of life that, like a Dutch Vanitas painting, speaks of the need to consider our true priorities.

Tags:
HIV,Living with HIV,HIV cure,

Talking with your mouth full

2006-03-17T14:28:00.000Z

Went in to have blood taken again yesterday, will get results on the 30th. As always, I stressed out about it beforehand, but the appointment itself was quite enjoyable. Was nice to chat to the nurse who's taken my blood a few times in the past and making jokes like,

"Hello, it's been a while since we've seen you here!"
"No offence, but surely that's a good thing!"

Going every week over Christmas really wasn't a good look, so I'm very glad to be done with that. Hopefully, I won't get that trigger-level phone call telling me to come in urgently next week because I've dipped below 200, but I doubt that's likely.

While I was there, though, I did book in an appointment with a health advisor so my boyfriend and I can sit down with someone and get advice on how to make sure we remain a serodiscordant couple. I know they'll not tell either of us anything we couldn't work out for ourselves, but sometimes it's good to dedicate a little time to talking it through with a third party.

Temptation is to do a list and ask for an "Ok" or "Not ok" answer, like a ticklist.

"Can I cum in his ear?"
"Can I wank off with his blood all over my cock?"
"Can I cut him with a knife and fuck the hole?"

and so on. However, I've got a feeling it'd be like asking how much stuff costs in poundland, which is, of course, the funniest thing ever, but might spoil the gravitas of the situation. I'm a plague dog and should ever be reminded of that.

Tags:
HIV,
Serodiscordance,

His Blood On My Hands

2006-03-09T13:32:00.000Z

Well, it looks like it's on. I am lucky enough to have a new boyfriend. He's agreed it's okay that I mention him and his status on here and, yes, as discussed before, he's not infected. It's weird to have that sense of the danger my blood and fluids present to him even though we both feel that urge to be totally close to one another. It's slightly odd that the issue isn't that I am HIV+ at all, that is so easily managed, but the issue is that he is not positive, and we both, obviously, want it to stay that way.

It's funny playing games around the idea, and leads to some very creative things, like playing with fake blood for photos bound to wind people up and we're finding some very fun ways to enjoy sex with that same sense of physical closeness without actual fluid tranfer through penetrative sex. We both know there are gambles we're taking here, and it really moves me enormously that he admits that itfrightens him (it frightens me, too) but that he's prepared to take that risk.

Of course, we minimise the risk, safe sex, not doing body fluid transfer, but still, every time I have la petite morte, there's a danger, however minimal, for those few moments before the virus dies outside of my body.

I have always minimised risk to negative partners since knowing my status and, apart from two possible moments where I took a moderate risk by fucking someone and not using a condom, I've not done the fluid sharing thing for many years now. Nevertheless, it's not felt so important to avoid fucking up as it feels now I so vehemently want to avoid infecting him. The sex is amazing, and I'm sure it's much helped by the months it's been since I've used recreational drugs other than nicotine and alcohol that I can feel so intensely with him, but I want to be so damned careful with him.

Logically, I know what risky behaviour consists of, but then I knew that before I caught it, so I'm clearly either not as well-informed as I thought or as disciplined about avoiding risk, which frightens me. I'll try to get an appointment with a health advisor when I go in to get my blood taken next week, perhaps, although they'll tell me nothing that the internet won't tell me, so perhaps I'll call THT and ask about information stuff to do with relationships with differential HIV statuses, but ultimately, I doubt a little booklet is going to be the prime mover for change.

Advice from anyone in a similar situation, on either side of the coin (heads or tails, got it or ain't) would be welcome, as I am finding this quite a strange experience and I don't want it to taint the situation.

Tags:
serodiscordance

There's This Guy...

2006-02-27T07:30:00.000Z

It's interesting how you can tell yourself that HIV is just one of those things about which you shrug and get on with life, knowing that you've got it and, chances are, you always will have it, but the thought of passing it on terrifies me. I know a couple where one has it, one doesn't, and they don't use condoms most of the time. We had a threesome, you see, and it really disturbed me to watch them taking risks, but ultimately it's not my business to intervene. Or was it? I honestly don't know what the right thing to have done would have been.

Nothing I can do about it now, and I can't live other people's lives for them. Still, it was odd to see someone wanting to expose themselves to an illness just to show they cared for someone, or for whatever logic he wanted to apply. Either way, I wouldn't want to be the one who placed him at risk.

Serodiscordance in a relationship is something that would be a challenge for me. There's some way in which fluid exchange is considered a mark of trust and intimacy, that after a while of being together you make a joint decision to stop using condoms. That seems to be the pattern in gay relationships - and others - that I've had and have heard talk of. It's a way of showing your partner that you trust that they're not taking risks with anyone else; a way of building a degree of physical proximity without the barrier of a condom. I hadn't really thought about it until now it looks like I'm dating again. There's not any way I can really hope for that kind of symbolic act with someone who doesn't share my status, and even then, medical advice would be that I shouldn't bareback unless I know I have the same strain of HIV as my hypothetical partner.

This is assuming that monogamy is sought in a new relationship, which I would want.

When I have had sex with guys and not known their status since I've known mine, there've been a few times where I get a psychological block and can't reach orgasm if I'm doing something that is penetrative, particularly in the couple of instances where they and I've not had a conversation about status first. Of course, they then think I'm an amazing lay, going for hours, but it's fear that stops me from enjoying it, stops me from letting go.

I can only assume that the fear of transmission would be more acute within a relationship. My viral load's not insignificant and that plays on my mind. I'd be frightened for the health of a partner who wasn't infected and I'd also worry that there would be an element of pity in their attitude towards me. I'd hate to get ill and need looking after, but it's a very real prospect (for anyone, mind you) and I'd rather there wasn't that worry.

But, of course, love doesn't come with an antibody detector built in, and I would like to think I couldn't stop myself from falling for someone just because of differential HIV statuses.

Tags:
Serodiscordance, Romance,HIV,Safer Sex

You Either Got It Or You Ain't

2006-02-23T09:31:00.000Z

Had another good realisation yesterday while talking to a friend of mine. The people I'm closest to at the moment and to whom I feel the most affinity aren't HIV+ men. I'm spending wonderfully good quality time with friends from the last few years, rather than gravitating towards the seroconverted. That I'm not needing that sense of fraternity, that consipiracy of sinners can only be a good thing.

Although I keep this blog and I write elsewhere about HIV issues, I am relieved that I'm not feeling like the virus in me has turned me into some other species any more, that I'm an alien among men when I go outside, that I don't feel it is something for which I have to apologise. It's certainly a reckless injury from which I will forever carry a scar, but the face I see in the mirror naturally now includes that cicatrix, that keloid. It's something I have in my life, but it is not my life and I'm hoping never will be.

I realise, though, that when I want to, I still use HIV as a mask for other issues in my life. I come home exhausted and upset after a long day at work. It's not the AIDS, it's the workload. I get nervous and frightened about the effect my HIV status might have on a new potential romance. It's not the AIDS, it's the butterflies in your stomach. Silly boy, blaming the AIDS. Whatever next?

Time to try to stop using this as an excuse to avoid tacking more immediate issues. Blaming everything on the AIDS is like spending money to tackle climate change that's coming in a hundred years rather than looking after poor people today. You may well feel worthy for being green, but if you want a better world, get your hands dirty now and tackle the more immediate problems.

A Diet of Lexical Items

2006-02-19T11:22:00.000Z

Just had a bit of a creative spurt this morning and thought it would be good to let you see the fruits of my labour. Few things to talk about this week, first of them being that my mood's picked up a lot since the first half of the week, when work stress and Valentine confusion seemed to make everything seem very muggy, how impending deadlines felt impossible and cheering up seemed utterly implausible, I'm now actually in a really good mood.

I met up with the guy who has lost his job because of disclosing his serostatus and was very impressed by his optimism about the whole thing, how pragmatic his approach has been to the virus and how little he worries, trusting in the doctors to maintain his current good health, how readily he took to the medication, asking what on earth the people who complain about the medication have got to justify it when he had a couple of days of feeling ill then felt great on the tablets. No annoyance at having to take them, just a shrug of the shoulders and, "Well, that's how it is now."

I would that I had talked to him the moment I was diagnosed, then I'd know to question the soul-searching and the anxieties I've held since finding out my status. Still, were it not for the catalyst of the diagnosis, I might not have embarked on the road I've followed, becoming single, concentrating on my creativity, getting back into photography as a daily practice, defining my politics more defiantly and generally diving headfirst into all kinds of strange scenarios. Through my obsession about the virus I've learned a lot, I've met new people, experienced some strange scenarios I might not otherwise have seen played out in front of me.

However, the flip-side of it all is that it's made me intellectually lazy about reading my emotions. When I'm anxious about being lonely, I translate it into fretting about weight loss or night sweats, neither of which are a problem any more. When I am nervous about meeting someone new, I proclaim my fears about disclosure and serodiscordance. It's lazy thinking, really, getting involved in online arguments about barebacking, becoming the voice of the people for HIV positive people when really I could just leave well alone, knowing that no-one ever changed their mind thanks to the internet.

Knowing which battles to fight is important, as is recognising when you're dwelling needlessly on things you can't change and worst of all is worrying about things which may well not come to pass and remaining anxious about conditional clauses.

I've indulged myself a lot with this blog, and let out some deeply skewed thinking which I attached to the virus which hasn't even really done anything to me yet. Not directly, anyway. Sure, I had night sweats sometimes, only badly very infrequently. Generally, I need an open window and a lighter quilt, I think. It's not seeing the wood for the trees to let this damned thing define me.

Yeah, sure, I'm writing about it, but this isn't me, and no matter what percentage of my blood it occupies, it isn't my main defining feature and I should stop letting myself be the token nigger in conversation. Not today, anyway. No, today, I'm quietly optimistic about the future that could unfold in front of me, looking to my creativity for my inspiration, not some microscopic parasite in my blood. A breath of fresh air to have a day where I'm not picking at scabs, but properly considering my options for what's to come.

Yeah, I'm okay and things will work out just fine.

Valentuesday

2006-02-14T11:29:00.000Z

Ever have those mornings when you look at yourself in the mirror when you're brushing your teeth and wonder what on earth it is that people seem to see in you when they tell you they think you're hot, that you've got a great body, that you're funny, clever and witty and what you see is some haggered man getting older a little faster than he'd like not seeing the brilliant sparkle other people say they see in his eye, but a slightly lonely, slightly frightened, slightly hollow expression that can disappear in a flash when he feels other people want to see him smile?

I wish I could be flippant and say, "Me neither."

I guess today is the kind of day when this sort of thinking is inevitable. A day when we celebrate relationships and love and hey, you can't help but look at your own situation. So here I am once again struck how I always seek to go to extremes in life, how it's never good enough to be the same as the people around me, to have a normal, quiet life, how when I have that I deliberately disrupt it so I can have the stimulation I need to keep me going.

I recognise that life is about ups and downs, but my wheel of life seems to be a yo-yo and I wish I could be happier to have those quiet moments when nothing much is going on, rather than everthing being apex or nadir. Vertex or vortice. At the gym today, picking up and putting down heavy things for an hour just seemed like an utterly futile exercise in wasted time, so I ran for half an hour and then did some yoga, realising my stress levels were escalating. I started doing some breathing meditation, counting my breaths and sitting in the lotus position while people grunted and sweated around me, trying to lose myself in the flowing river of now, but probably looking like some gaunt twat sitting on the floor.

My weight's down again, seeing that I was below 87kg really sent my anxiety rocketing. I was 98 kg last Summer and I was much stronger than I am now. Now, I'm fitter, I do a lot more work at the gym, so the strength I have is useful. I eat better and my health is good, even if stress at the moment seems to make me crave cigarettes for that little tiny act of self-destruction that consumes five minutes each time.

You can't do anything about the past, and regret is the only sin that has meaning, but to look forward, perhaps I should accept that if you chase rainbows, you find thunder.

It's how I live, it's what I have become. A fugitive from history, burned by lightning, soaked by rain.

Speaking Up

2006-02-12T08:31:00.000Z

A while ago, I was talking about finding out that there's countries that won't knowingly admit someone who is HIV infected. Now I'm being presented with the interesting challenge that in a few months, my work might want to send me to countries that are listed as having a policy of refusing people at the border if they either disclose their HIV status or are found carrying HIV medication on them.

I don't really know how to handle this. A similar project came up in a country where there are no issues with HIV at the border, but I was passed over for this assignment on the grounds that they need me in London at the moment because I know the job better than other people. I'm not sure I entirely believe that but they've promised that the next major international job goes to me. At the very least, it means lying on my visa application. If, however, the acupuncture doesn't pay off and I'm on the wrong side of the CD4 Poverty Line when I go to test next, then there's the possibility I either have to attempt to smuggle medication in with me, arrange a drop-off from a sympathetic local HIV charity like they do in America or go without medication when I'm immune compromised and entering a country I've not been to before, so for which I wouldn't have an acquired immune response anyway.

Hopefully, though, I'll be healthy enough in the numbers game to avoid that being a problem and I won't be faced with the tricky scenario of making a decision between not disclosing and risking deportation or disclosing to my employers and risking losing the international projects and perhaps my job completely. I have an online friend who recently came out to his employers about why he was suffering from seemingly chronic fatigue. Within a day he had a letter on his desk telling him that they were restructuring the department and didn't need him any more, despite taking new staff on two days later to do a similar job and no-one else losing their jobs.

It stinks that we even have to think about these things. Isn't it enough that we have to deal with living with this infection?

Strains of HIV Infection

2006-02-12T08:29:00.000Z

Medical research seems to indicate that HIV seems to have mutated since its original incarnation as a mere human immunodeficiency virus that sometimes later becomes a sydrome in which the acquired immune system becomes deficient, but now has changed into a whole range of different strains.

Type 1 Infection: Fuck-It HIV.

This type of HIV infection is characterised by spending 12 hours in a row dancing in nightclubs. Night Sweats very heavy, but more to do with drug use than anything from The AIDS. Rates of concurrent infection with various STIs are very high, as are degradation of the septum and the rate of IQ loss tends to be more rapidly obvious than any change in CD4 count. Impotence very common, but it's normal to take drugs to counter the effects of drugs you've already taken if you have this type of HIV. Transmission rates very high, levels of guilt very low, on the grounds that anyone having sex ever should know that men with FIHIV fuck around like maniacs, so it's their problem.

Type 2 Infection: Holland and Barratt HIV.

At point of diagnosis, HABHIV patients immediately stop smoking, drinking, drug use and burgers. Common symptoms include cycling to work all the time, taking more multivitamin tablets than they'll ever take on combination therapy, no carbs after six, no McDonalds food, Molton Brown eye balm every day and an annoying propensity to start thinking everyone, irrespective of their health, should live according to their ridiculous diet plan and should feel guilt and angst for eating tomatoes. Looking after yourself is healthy, kids. Body dysmorphia is not.

My Cock, The Sword of Damocles

2006-02-08T11:30:00.000Z

An amusing discussion came up on a forum site I've recently joined. Someone was asking if HIV is still the death sentence it used to be and this turned into a general discussion about the virus. It raised some interesting thoughts for me among it all.

Primary among the arguments seemed to be the matter of disclosure, where lots of guys who said it should be the responsibility of the positive guy to always disclose to their partner to give them the choice to manage the risk they were willing to take. There seemed to be an assumption that positive people wanted to expose people to risk, which doesn't seem to be my experience. A few guys were saying they'd never knowingly have sex with an HIV+ partner, which makes me wonder how quickly they abandon condoms with a partner who assumes himself to be negative, bearing in mind that a third of gay men with the virus don't know they're carrying it.

There were also (assumed) negative guys talking about how they like to have unsafe sex with a partner after they've been together a while. It's funny. If I knew then what I did now, I would have been so incredibly strict about safer sex, irrespective of how much I loved someone, irrespective of how high I was, irrespective of how long I'd been together in an assumed monogamous relationship.

Sure, I'm living with it now, but I kick myself for not having had the sense to avoid it and would never want to think I might infect someone else.

The Lo-AIDS Diet Plan

2006-01-30T20:01:00.000Z

Well, I had my appointment today with the Chinese Medicine place, the Gateway Clinic at Lambeth Hospital. I was enormously surprised by them. I got there, filled out a monitoring questionnaire that's obviously for their funders to be able to prove that the clinic has perceived results for the people attending the clinic. After about ten minutes the awful smell of alternative therapies was something I'd vaguely started to get used to, then I went in to see a French doctor in a London Hospital to talk about Chinese Medicine. Where else in the world can you do that? I don't think I saw anyone who looked even vaguely chinese there.

I no-thanksed the medical students (two!) for my initial appointment because you don't know if you're going to burst into tears or anything, plus it's not the big thing you want to talk about to everyone, even if one of the medical students was kinda fit, but it's such a dodgy thing to cruise guys in an HIV clinic, I'm sure. Especially if you're staff.

The doctor talked me through their philosophy, that HIV is a virus, like herpes, so it flares up when you're run-down or stressed and so their approach is to give you as much of an arsenal to get you relaxed and happy as possible. There was a lot of CBT type psychological thinking under the way he spoke to me, but I didn't mind that. I was just touched at having a stranger show something like care towards me. Think that says something about where my head's at lately.

Anyway, he said basically I can come in and get acupuncture every week, for free, forever, and if I'm stressed out, I can go in and get a de-stressing ear-acupuncture any time I like. How good is that? Impressive stuff for the NHS. If they offer herbalist stuff, you do have to pay for that, but they anticipate at most £30 per month. It's practically a gym membership or cable TV, but if it does work, then it's got to be worth something.

I was also given a diet sheet, which of course I'm going to not follow religiously.

AVOID: Alcohol, coffee, tea, red meat, shell fish, sea fish, preservatives, oranges, excess sugar, excess dairy, excess wheat, hot and spicy food and fried food.

EAT PLENTY: Chinese green tea, watermelon, papaya, apple, Chinese cabbage, rice, radish, carrot, beetroot, aduki bean. winter mushroom, freshwater fish, mushroom, asparagus, green leafy vegetables, pineapple, mango, pear, celery, chicory, endive, dandelion leaf, artichoke, corn, millett, mung bean, black fungus, lotus root, cucumber, bitterlemon and barley.

Cripes.

Needles and Pins

2006-01-26T16:34:00.000Z

I went for acupuncture again this morning with my father's partner, the first time having acupuncture with her since disclosing my status to the two of them. It's still an uncomfortable memory, seeing them both try to get their heads around it, his closing in on himself, her scrabbling in the dark for the bright side. A face on which mine was modelled the confusion and upset that my status can cause was a difficult thing to watch, but I hope that I did the right thing by telling them.

I think I did. I know I did, he's a part of my family, he's a part of me, it wouldn't be fair on either of us to maintain the illusion that nothing was wrong when it must have been clear to anyone who knew me that something had happened to spur on such a rapid sequence of major life changes, the weight loss, the leaving the man I wanted to spend the rest of my life with, the OCD approach to healthy living, the neurotic reinvention of myself. Surely there's got to be something going on behind all of that?

Still, none of it is bad in itself, I'd say, although some of the changes I've been through over the last few months do leave me with a lingering sadness. Sadness at what I could have become if I'd kept using drugs the way I was last Summer. If I'd let that recklessness really take hold, I'm sure that would have been far more of a death sentence that this infection could ever be. Heh, so perhaps I should be glad in some ways for the wake-up call this gave me, that diagnosis shocked me out of the nihilistic drug spiral I was in, all the while telling everyone that it was all just too fabulous.

The acupuncture was the same as it always was, starting out with a twenty-minute run-down of what's happening for me, health-wise (how many hyphens in that sentence?). It meant I got to explain to her some of the symptoms of the virus, that it means I sweat more than I should, I'm more likely to get stomach problems and that I get fatigue sometimes, but the last is more likely to be to do with the ridiculous miles-per-gallon I seem to expect from my body. Add to that the slight chesty cough I have (along with half of London) and the nagging feeling my shinsplints might be coming back and she had plenty of stuff to work on.

The first point is on the crown. The first time I had that, it freaked me out and made me wonder if I could move even if I wanted to. It's that odd a sensation to know you've got a needle stuck in your skull. The usual points went in on my forehead and my chest, points on my shins and feet and then she placed a needle in the crook of my elbow which she said would help with my fever. It immediately sent waves of sensation through me, to the extent that I was actually afraid of the next point being done and flinched when the needle went in.

Relaxed, listening to some music with pan pipes that I think I might ask her to turn off next time because it annoyed me more than it needed to, to the point where I was wondering how much damage it would do me to get up and put the radio on to Xfm so I could lie there and smile instead of rolling my eyes and getting annoyed with all the meaningful music. I'm not very tolerant of things meant to make you relax, aromatherapy makes me angry, most whalesong music makes me murderous. Or hungry.

When she came back through after half an hour that the points in my arm were still really active. I moved my head, feeling a bit like Dipsy the teletubby with a needle in my scalp (and yes, I had to look up on Google which one it is with the dildo head, I don't remember them by name) and the needle in my arm was spinning and twitching. It was quite comical, although then she said that if the needle remains active for ages it means it really needs some regular treatment. The point is one for fever, so I guess it's good that she feels acupuncture can help with the sweats. I'll have to see, although I think I should try to block out time regularly to go to see her, so I can get regular treatment and sneak in a little time with my Dad, which is probably just as therapeutic.

It's never just a cold.

2006-01-26T08:24:00.000Z

It's that time of year in London now, when everyone gets ill. In my office, about three people all have the same cough I've had for the last week or so and we're all consoling one another with hot drinks with honey and lemon in, necking paracetamol and any drug marketed at the winter sick every half an hour and making half-arsed runs to the shop to buy oranges. They talk about echinacea and I am always so tempted to say, "I find antiretrovirals so much better than echinacea!"

But it wouldn't be true. I'm not on treatment, and I'm hoping I won't have to be for a little time yet. Still, this is my first winter with the virus and it seems to fuel every bit of latent hypochondrea that I'm sure every man has. I don't know how much credence I give to the thought that men suffer illness with less grace than women, I know I'm not convinced it's the flu when it's probably a minor throat infection I've got, but then I just joined a mailing list that emails you every few days with some fascinating information about the virus.

It's a horribly depressing thing to have inflicted upon myself as not only is anyone reading the stuff about symptoms of HIV going to be convinced they're positive - a few people I've shown it to have been quite disturbed by the number of "symptoms of HIV" they have. For me, though, I look at the symptoms of TB, night sweats, a cough that's worse at night and such and I'm convinced that my chesty cough (worse at night because the phlegm settles) is the most terrifying thing it could possibly be.

I suppose I can unpick this thinking a little: I've been through a hell of a lot over the last six months, diagnosis, the breakdown of the relationship I thought would last forever, moving flat, starting a new job and I've not really been able to grieve for any of this out of the ongoing sense that I don't want to upset other people by presenting my diagnosis as anything more than inconvenient, so I wind up becoming emotionally distant and rely on hiding in plain sight, telling people supposedly revelatory things about myself that actually matter not one whit to me.

I never was very good at that game where you fall back with your eyes closed and trust that you'll be caught. I'm usually taller and heavier than whoever's meant to catch me and I worry I'll crush them when I fall.

The Trouble With Sleeping Around

2006-01-20T17:29:00.000Z

No, I don't mean like that, I think we all know the kind of issues that sort of thing entails, right? I'm talking more about one of the more annoying factors of always having a virus - not just the fact that you get times when you feel cruelly post-viral, when really you're never going to be post- this virus unless something pretty radical changes in the next few years - but also the sweating. HIV causes fever, particularly in the early stages and during periods of CD4 degradation or when a concurrent infection surfaces.

I'm not going to panic that my CD4 count is in freefall until I'm actually ill in a way that would give me cause for genuine concern, and my concern then would be more to do with time away from work and the financial implications this would have for me than for the concerns about health. Well, at least I say that now, I guarantee at the time I will be utterly terrified that death looms over me.

The Night Sweats are something I've had on and off since last Summer. I should have put two and two together and come up with HIV at the time, but I think I was too busy living the big gay lifestyle holiday from reality, burying myself in the party culture and attributing all these symptoms to overdoing it, which they could easily have been - night sweating is also associated with drug and alcohol use, consumption of spicy foods, eating too late at night and also having a big boyfriend who holds you at night.

I don't have any of those excuses any more, and I can't say I don't miss the comfort of a loved one's arms at night, but at the moment I just couldn't face the embarrassment of sleeping, I mean actually sleeping, with someone because I just don't know how badly I'm going to sweat. I should buy myself cotton pyjamas, a light blanket and consider a fan or something for my room, an open window lets in too much noise at night living here, but moving flat has wiped me out financially, so at the moment I just put up with it, but sooner or later it's going to be a real issue for me, I think.

Tomorrow, I'm going to stay with a friend of mine and his pregnant partner, neither of whom know my HIV status and with less than 24 hours until I see them, I'm getting a bit anxious about staying there. I mean, if the moment isn't right to disclose my status - they'll be too wrapped up in the joy of their child for it to feel right for me to say, but if I don't say and it's pretty damned obvious I've got some kind of flu virus, it looks really insensitive of me to expose a pregnant woman to that risk.

In a week's time, a friend was meant to be staying with me for the weekend, then another friend is staying for the main part of a week. There's only one bed in my place and I really don't mind sharing a bed with friends normally, but I felt so uncomfortable with the idea of sleeping next to the first friend I've found excuses for him to stay elsewhere. It's worked out fine, though 'cause he has a new boyfriend and it would be odd for him to share a bed with anyone but him anyway.

I just don't feel comfortable with that kind of admission of weakness. Horrible thing to find myself saying, but I think with this, I know I manage to put a smile on the faces of most people by the end of the disclosure conversation by making jokes, drawing stupid cartoons and assuring everyone there really isn't much to be actually concerned about right now, so allowing people to see that there are actually some symptoms associated with the disease is something I do actually mind at the moment.

Living alone, no-one needs to see me in bed by ten every night so I'm awake in the morning for the gym, no-one feels me sweating throughout the night, no-one need see that anything's changed at all, other than all the weight loss, the healthy living and the endless comedy.

I'm looking forward to having my best friend stay here, though. Will be good to know that there's someone to whom this all needs no explaining, that there's no anxiety he'll think any less of me for any of it.

Still, it's good inasmuch as it's helping me avoid falling into the easy trap of bringing someone into my life to fill the gap that's left by breaking up and it's keeping me away from some of the fuck-and-run scenarios I could easily find myself in otherwise. At the moment, I just don't like the idea of that kind of intimacy with anyone. Got too much of my own thing to work out before even starting to think I might have something to offer anyone else.

Actually, that sounds quite bleak - what I mean is that I just want to enjoy being on top of things by myself for a while and I'm loving not having to feel obliged to get involved in anything at the moment. Life's an adventure at the moment and I am really, really enjoying that. Let's just hope I can sort out the sweats over the weekend and not scare the mum-to-be.

Like I said

2006-01-17T14:24:00.000Z

The Magic of Antiretrovirals, eh? It seems that there's a drug coming up at some point that would offer a single one-a-day tablet to control infection. It's an interesting possibility that antiretroviral medication could become like having a yakult drink with your porridge in the mornings. I wonder at what the cost is of that combination drug in terms of how it relates to the three drugs or what psychological effect it will have on high-risk groups like gay men if it becomes generally known that Antiretrovirals are now Multivitamins. Will more men who do not know their status be prepared to take risks, not realising that you still have to face the lack of energy and the higher incidence of illness and fatigue that HIV carries with it, not to mention the social stigma associated with the virus, too.

Still, it's always a hard balance to work out, telling negative people that the virus is shitty and horrible (but not so shitty and horrible they're too scared to test), while telling positive people that it isn't that bad in the end and being happy will make a big difference. It's a strange game to play out in your own mind as someone newly diagnosed, too, the thought of how everything's ok, then the horror at the thought of exposing anyone to risk, then wondering why you have that fear, thinking it's awful, thinking it's not actually bad and starting the cycle all over again.

In Lieu of News

2006-01-17T00:59:00.000Z

340

2006-01-12T17:26:00.000Z

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

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

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

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

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

Disclosure

2006-01-09T15:02:00.000Z

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

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

En Hiver

2006-01-05T10:30:00.000Z

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

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

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

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

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

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

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

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

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

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

Becoming HIV Plus!

2006-01-03T15:17:00.000Z

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

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

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

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

It's the transition that is the hard thing.

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

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

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

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

CD4 Count: 85

2005-12-29T11:34:00.000Z

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

2005-12-26T10:45:00.000Z

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!

2005-12-22T18:38:00.000Z

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

2005-12-20T12:37:00.000Z

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.

2005-12-07T10:05:00.000Z

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

2005-12-06T19:07:00.000Z

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

2005-12-06T18:18:00.000Z

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.

2005-12-06T14:03:00.001Z

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

2005-12-06T13:04:00.000Z

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

2005-12-03T15:52:00.000Z

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

2005-11-30T16:09:00.000Z

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

2005-11-12T06:46:00.000Z

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

2005-11-07T14:56:00.000Z

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

2005-10-24T22:28:00.000+01:00

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

2005-10-16T10:17:00.000+01:00

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

2005-10-03T06:51:00.000+01:00

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

2005-09-26T11:32:00.000+01:00

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

2005-09-17T17:06:00.000+01:00

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

2005-09-11T07:31:00.000+01:00

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

2005-09-02T06:42:00.000+01:00

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!

2005-08-31T22:01:00.000+01:00

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

2005-08-29T21:45:00.000+01:00

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

2005-08-23T11:19:00.000+01:00

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

2005-08-23T11:17:00.000+01:00

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

2005-08-23T11:16:00.000+01:00

"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."