Update

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

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.

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!

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

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.

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

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

Still here. Here, still.

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

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

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

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

...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

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

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

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

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

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

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

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.