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).