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.

479

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

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

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

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

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.

+/-

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

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

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

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?

Tags: Dying, Plath, HIV, AIDS, Boyfriends, Serodiscordance, Good AIDS, Bad AIDS, Hep C, Cross-infection, Determinism, Facing the future

Making a Living out of Dying

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

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

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.

Tags: HIV, AIDS, living with HIV, going gently, Red Cross, marginalisation, racism, homophobia, veiled bigotry, the mask of benevolence, good AIDS, bad AIDS, blood transfusions

Gonna PEP You Up With My Love

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.

Tags: PEP, HIV, AIDS, Serodiscordance, Living with HIV, HIV testing, CD4 count, Health scares, Love

Interpretations

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.

Tags: HIV, AIDS, Seropositivity, Serodiscordance, Seroconversion, Love

Good News

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

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

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

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...

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

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

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

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

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

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

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

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

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.

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

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

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

340

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

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

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!

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).