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Shit, shit, shit... but wait, there

Tue 30 Mar 2004 In: HIV

Ever wondered what it's like to live with HIV? For our fourth HIV Monday night open chat session we invited gay men with HIV to discuss how they live with HIV. Maintaining senses of humour in the face of adversity they discuss social and medical implications, overseas travel difficulties, physical and mental side-effects and much more. Keith is a 56 year old man who has been HIV positive for 23 years. Ryan is in his 30s and has had the virus for 8 years. Chat session moderator Doug has been positive for "probably 19 years." They chat about personal experience in the company of the manager of the NZAF's Auckland Burnett Centre, Wayne Otter, who offers broader perspectives. Doug: I think we'll kick off guys, starting with going on to medications... How long have you been on meds? Ryan: About 7 years Keith: Seems like forever. Doug: 5 years here. What did you start with? Ryan: Protease inhibitors at first... horse pills... that was the size of them. Doug: Were they really as B-I-G as we remember? Ryan: Think 20c pieces! Keith: They were huge. They gave me the shits. James enters: Hi. Doug: Hi James Doug: They were the first real HIV drug available, right? Keith: No, AZT was first. Keith: What was worse about them was the fact that they had the texture of dry chalk and were so difficult to swallow. Then there was the taste - vile! Keith: Later, when they became smaller without the chalk buffer and in mandarin flavour, they were OK. Ryan: Then I progressed to the modern drugs. Lots better effect but still bad side effects. Doug: How many a day? Ryan: I was taking 16 pills. Doug: And I thought my 15 a day was surely the human limit! PILLS AND SYMBOLISM Doug: How did you guys feel about going onto serious medications, the psychological thing? Ryan: Not too bad... I'm quite organised. The pills were, however, a big symbol to others in my life. Doug: A scary symbol? Ryan: Yes, scary symbol for them. I was going out with someone who said “those pills remind me every day u r HIV positive.” Doug: But not scary for you? Ryan: They represented getting well. I was sick when I first started taking them and I didn't realise about the side effects then! Doug: So they were a lifesaver of sorts? Ryan: Without the hole in the middle... or the mint flavour. Doug: Lol. Wayne, NZAF: The impression I have gained from a number of people over the years is that it can be a symbol of progression. I suppose it is how you as an individual look at yourself and your life, your values and your belief systems. Doug: I hated going onto them because, as Wayne says, they represented a progression, but for me it was a negative one: “Oh my God, it's got to this stage.” And I was able to more or less ignore the virus till then, but taking meds meant HIV became an inescapable fact of daily life, three times a day, v depressing. Ryan: I began to learn that they represented a limitation... on travel for one thing. Doug: Keith, what was your feeling going onto meds? Keith: At the time I was getting desperate because by 1990 virtually the whole cohort of men that I had been infected with had died. I see medication of a way of buying time. You'll never be cured but you are staving off deterioration of condition (and death) by taking medications. Ryan: Pills also take away being discreet about the illness. Wayne, NZAF: But they become a part of your life and you work around them. PILLS AND ATTITUDE Doug: Wayne, how does attitude (taking pills being perceived as a “positive thing” or a “negative thing”) affect people's ability to take meds reliably and deal with the virus? Wayne, NZAF: Compliance for some is a major issue and these drugs really do need to be taken at the same times every day. Ryan: Some people's personalities are not suited to taking regular drugs. Wayne, NZAF: I wholeheartedly agree. Ryan: If u can't pay your power bill on time u might not be able to take the pills either. Ryan: Taking pills when u r out at dinner is hard. Keith: Yes, but I've found the best way to deal with that is to be brazenly open about taking a saucer full of pills at dinner parties. Ryan: I think that's cool u take them openly, but if u hang around 20-somethings who are not gay? Keith: Well, that can be part of their education: "Look what you have to do if you allow yourself to become HIV+" Wayne, NZAF: A real eye opener eh Keith? Ryan: U r a walking safe-sex campaign? Wayne, NZAF: To a degree I think Keith is in this instance. Keith: No, I don't see my role as that but equally I refuse to hide or feel "guilty" about the fact that I'm HIV+. Doug: Anyone have any tricks to remember to take the bloody things? Wayne, NZAF: Beepers? Ryan: Yes, a watch with an alarm... simple as it can get. Beepers r not so cool for those wanting to be private... a watch with an alarm is much better, because its an everyday item. Wayne, NZAF: Great idea Ryan. Keith: I've found a useful thing is to get a pill box. Before I go out at night I make up the next morning's dose of pills and then they're waiting for me when I get home no matter what condition (don't even ask!) I might be in. Doug: So it has to become a habit. Wayne, NZAF: It has got to become a part of your life and a regular part Doug: Day in and day out. Wayne, NZAF: All the time Keith: Yes. Every meal before I sit down there is a saucer of pills at my place setting. Ryan: I never thought I'd be using shot glasses for pills, but that's what they are great for. I get the shot glass full of the pills and I'm less likely to forget. Some days I do forget, even with alarms. Doug: How do you feel when you forget, Ryan? Annoyed, disappointed, frightened? Wayne, NZAF: I must admit I do forget to take tablets I have to take on a daily basis for other things and I go into a panic if I do not. That is why I always have a daily lot in my bag just in case I forget. Ryan: I place them somewhere really obvious like the sink. My alarm is going off now! Keith: When I go to Sydney for a week of partying I make myself up a calendar of days and pill popping times and I mark them off as I take them just in case I'm not in a condition to remember exactly (again, don't ask why!). That way I keep track of dosages and know instantly at a glance that I can be reassured that I've taken a dose. Doug: Anyone else carry a little emergency supply? Ryan: Yes, an emergency supply in my bag. 1 x dose, and of course a 80ml bottle of water. Looks like I'm taking a slug of gin! Keith: That is problematic for me as two of the protease inhibitors I take require refrigeration. Wayne, NZAF: Refrigeration is an issue. Doug: It's an issue for me too, but I figure that an unrefrigerated pill is better than no pill. Wayne, NZAF: Exactly. Keith: However, when travelling I always take a few days extra doses with me just in case my return home is delayed Wayne, NZAF: Why would that be Keith? lol! Ryan: God, I take 1 x month if I'm going for 2 weeks. 1 x lot in my hand luggage, the other lot in my suitcase. TRAVEL AND HOLIDAYS Doug: How do you guys get on taking them overseas, with customs, etc? Keith: I always get my GP to write a list of the pills that I'm traveling with certifying that they have been prescribed and dispensed for me. Wayne, NZAF: From what I gather it is important making sure you have documentation if going to Oz stating what is for, as a safeguard, Ryan: I've never worried about Oz. Keith: If Customs ask what they're for, as they have done, I just say for a mild chest infection. It is after all none of their business as I carry the GP's letter. Wayne, NZAF: Exactly. Doug: What about the USA or Pacific Islands or Asia anyone? Ryan: I was advised by a freq. traveler to Samoa to say my pills were heart pills but customs were very cruisey so issue didn't arise. Wayne, NZAF: What bout the ‘States. Anyone been? Keith: USA is the only place where I hide them from Customs. Ryan: I don't declare for USA either. Doug: Yes, travel to USA regularly. Luckily have never been searched, but always very nervous as USA officially doesn't admit HIV+ people. Ryan: They r scary at customs anyway in the USA. They ask u on the form: "are r u carrying an organism capable of causing disease?" Keith: The Land of The Free Oppressors exported the infection around the world and now with its usual double standard won't allow HIV+ people in! Every person in the world is carrying an organism capable of causing a disease! It's such a stupid question that one treats it with the contempt that its worth and LIE LIE LIE! Wayne, NZAF: What would happen if they came across the pills Keith? Next plane home? Keith: You got it right. Wayne, NZAF: Coz there was an international conference a few years ago and a person had to go the long way round the world to get into Canada I think, so they did not go thru the ‘States. Doug: I enjoy travelling to places where there's lots of steamy jungle and no refrigeration, and they're v anti-HIV in those countries, so I have to take a big risk and go off meds while there. Keith: The big trouble with that is drug ‘holidays' are the very thing that allow the virus to become resistant to a medication. Doug: Yes, it's a tough decision and getting harder to make every year. But my trips are a great relaxer and help me keep an equilibrium which is important for me. Ryan: I went of my meds for one trip for only 6 weeks and my viral load [a measure of the amount of HIV in a person's body - Ed.] went ballistic. It was nice not having pills for a while. Wayne, NZAF: I bet it was. Ryan: It was like a holiday in more ways than one. Doug: A break is really refreshing, but a very guilty pleasure. Wayne, NZAF: Has drug resistance cum into the equation after these holidays. Doug: Not so far as we can tell, not yet, but I know I'm gambling with it. Ryan: Yes, but I can't work out if they r connected. SIDE-EFFECTS Doug: How abt we look at side effects... Keith: I've got peripheral neuropathy, depression and explosive diarrhoea here... pill side effects that is. Wayne, NZAF: I thought that was age Keith! Wayne, NZAF: Kettle calling the pot black here! Lol! Ryan: I talked to a poz person who is on pills and doesn't have side effects... that is sooo rare. Doug: Lucky bastard. Ryan: For me it's shit, shit, shit. Then a bit of fatigue then some more shitting. Keith: Peripheral neuropathy from ddI and ddC meds. [Common symptoms of peripheral neuropathy include weakness, numbness, burning, tickling, pricking or tingling sensations, and pain in the arms, hands, legs and/or feet -Ed.] Keith: Also the shits for Africa from taking three protease inhibitors. Wayne, NZAF: From what I hear that is one of the worst side effects, the shitting constantly. Doug: Runny shits and farts most days, cement taste in my mouth some days, general fatigue, very tired about 1 day in 5. Ryan: Right now it's only 8.30pm and I'm fucked... nites are out for me to do much that's too active. A side-effect for me is also I can't drink much. I had 2 drinks of vodka last month and had a hangover next day. Keith: The shits are socially embarrassing, very uncomfortable, depressing and worse of all I have turned into my Mother - I now carry around a clean pair of underpants and a plastic bag for cleanups (even when I'm wearing chaps lol!). Doug: Wayne, does the Burnett Centre have any advice on how to know beforehand whether one is about to let slip a sneaky lil fart or something more socially catastrophic? Wayne, NZAF: If we knew that we would be able to patent the idea! I think one has to clench and pray! Even tho these things can sound humorous I am aware of how real these things are for people... the reality can be awful. Keith: I think the whole situation has to be treated as lol otherwise one just beats oneself up about it. Ryan: If I'm going out and feeling that way I sometimes take anti-shit pills, which usually give me a safe 3 hrs or so. Doug: More chemicals to combat the side-effects of the chemicals. Keith: I take the maximum of 8 Imodium a day and it has little effect. Wayne, NZAF: But not all the time as it seizes the bowel! Ryan: I'll never forget being at a gallery opening nite and letting off the worst stench imaginable... a crowded room of 100 people and one person pointed at me!!! Keith: The only remedy when I go out to somewhere like the opera the other night, then on to Urge, is to take codeine. Doug: Codeine? Keith: Codeine Ryan: Yes, I've been taking that and it's better. Wayne, NZAF: There are natural binders, like banana or cornflour, and, as Keith says, codeine because that binds too. Ryan: The chemist must think u r making P when u take in the prescription! Keith: It works well - take two and you don't shit for at least eight hours. Wayne, NZAF: What a relief. Doug: Must remember that. Keith: The only side effect of that is the codeine makes you a little sedated so you have to work at being "UP." Over the years I've tried Metamucil, charcoal tablets, bananas, etc, etc., etc., etc. Nothing but codeine works. Doug: Any other side effects of note... lipodystrophy? [Lipodystrophy is a draining of fat deposits from around the body and depositing them in the stomach and/or upper back areas -Ed.] Ryan: My boyfriend used to call me Demi Moore. Doug: Huh? Ryan: She did a magazine cover nude and PREGNANT. Wayne, NZAF: So yours has moved to your belly Ryan? Ryan: Crixivan pills made me really pot-bellied. Now I'm on Kaletra it's noticeably shrunk but it's still a bit distended. Its hard to work out whether its the drugs making me skinny in other places or the lipo. Doug: Anyone else get "chemical days" when there just seems to be an overload of chems in the bod and you feel crap and ‘chemically' and loose appetite and energy and can't face the pills? Keith: Yes I have days when I feel "chemmed up" - listless and with a definite chemical taste in my mouth. Ryan: Yes, I have 'toxic' days. Sing it Britney! Ryan: On those toxic days I just think/go slow. I've taken dbl doses of pills once or twice... man, u feel poisoned. Keith: The odd thing is, bad days result in feeling like Hell and then one rebounds to normal and somehow feels better than just normal... then I feel on top of the world because I've got through another "episode." Wayne, NZAF: Do you think if people understood the side effects of meds they may be more aware of their sexual practices? Doug: God, I hope so. Wayne, NZAF: The thing I think is people see people outwardly looking and living well, and they think: “Oh, its not too bad.” Trouble is, we are behind here in meds compared to overseas. You can get some but not others. Ryan: I've got a friend who knows everything about my regime and continues to take it raw up the arse. Keith: Ryan, when one is young one regards oneself as indestructible and almost immortal. Ryan: His casual fuck called him up afterwards and said “has my cum slipped out yet?" He looks at me and says “u will be mad, but..." Doug: Your friend is a sikko! WORK AND INCOME Doug: So how do people hold down jobs in the real world, and have a life, with all the side effects of the meds? Keith: Well Doug that is just the problem. I'm 56 now and I'm unable to work full time. So I've had to adjust my horizons. In some ways it's made me less materialistic as I realise that I have to be satisfied with my current standard of living. Doug: Wayne, are most people on HIV meds able to hold down a regular 8-5 job? Wayne, NZAF: A lot do and some don't. It is about managing it to the best of your ability. Doug: I'm lucky 'cos I can choose my working hours, take days off, go slow, run to the toilet 5 times an hour, no-one around me cares, I'm able to be out about it.... and a lot of the time I work alone in the office. But what abt HIV-closeted guys working the on the factory floor, etc? Wayne, NZAF: Factory floor is difficult, so maybe it is a matter of looking at other employment that would make life easier. For some their work knows and that makes it easier. For those that do not they work round it. Ryan: I know one poz guy who was distraught that his business was being renovated and he was losing his own private toilet. It comes down to practical things. Ryan: It's harder to do if u r young and haven't even got a nest egg or house of your own. The benefit doesn't compensate for what u would be doing if u were not positive. It's not like ACC. Keith: I realise that. I am in the lucky position where I can regard myself as "semi-retired" and just regard work as pin money. Wayne, NZAF: I do not know if you are all aware that there is a career counselor available through the NZAF free of charge to positive clients who are wanting or needing to change jobs. Doug: I didn't know that. Ryan: HIV affects my financial position enormously. I've had to think how to get money in all sorts of ways. That includes under the table jobs and some of them have been a bit dodgey. Wayne, NZAF: Ryan are you on a benefit? Ryan: Yes, I'm on invalid's benefit. Keith: Yes, one becomes part of the black market economy where one can be exploited and not paid sufficiently for one's endeavours. Ryan: Yes, fuck yes! Doug: Money is damned important for security and “lifestyle choices” unfortunately. Wayne, NZAF: I agree. Ryan: It's put me in another 'class' Wayne, NZAF: When I first came into this field people were put on benefits from day one. This has now changed they are encouraged to stay working if they are able. BAREBACKING Ryan: My friend that barebacks thinks he's jinxed. He's kinda just waiting for something bad to happen. There is so much barebacking out there. No-one asked me to fuck them without a condom 5 yrs ago, but now it's monthly or weekly. Wayne, NZAF: For some I think if they become positive they do not have to worry about staying negative. Keith: There is also the odd mindset that if they become positive then they can have the best "old-fashioned" type of sex. Wayne, NZAF: Exactly. Doug: Is any kind of sex worth a grim time on meds and a miserable death? Wayne, NZAF: No. And I am sure we have all seen some fucking long, horrible meltdowns till death. Doug: Anyone got a word or two of advice to people who're barebacking? Wayne, NZAF: “Virus resistant strains.” Keith: To people who want to bareback I say "Yes we can but do you realise that I'm HIV+" You can't see them for dust! LEARNING LIFE'S LESSONS Doug: Can we pause to consider what HIV and meds regimes have taught us abt ourselves and our lives? Keith: To summarise for me: I still try to compartmentalise my life so that HIV is just one factor impinging on my life. Wayne, NZAF: You are a person first, with many facets, and HIV is one of them. A great outlook. Keith: Yes Wayne, but that can be difficult if one is perfectly healthy for weeks and then has a string of bad days. Wayne, NZAF: Exactly, and there are only so many sick days per employee. Ryan: HIV has made me realise how its not all 'sweetness and light' which has been good and bad. Good: broadened my horizons. Bad: not as damn easy! Keith: As you say Ryan, HIV forces one to reevaluate one's life and objectives and maybe downgrade one's expectations. Otherwise one wil be permanently disgruntly. Ryan: It's prob made me a bit more real. Doug: I think I have become old before my time, sometimes my plans for the future, etc. are more like those of a retired person, taking less risks, etc. Wayne, NZAF: Yeh. HIV has done that to a lot of people I know Doug... matured them b4 their time. Ryan: If I'm reincarnated I will come back as something much wiser. Keith: I have become very much a "cut to the chase" person. I get bored with pretentious crap. Ryan: Oh yes! Doug: Sometimes a disaster in one's life is very character-forming? Keith: Yes Doug. Ryan: I had character b4! Wayne, NZAF: A disaster in one's life can be character building, it depends if you have the ability to take this new challenge in your stride... and some people do not. Keith: Yes, and some people become obsessed with it and in doing so become HIV victims. Ryan: Some give up from the point of diagnosis onwards. It's a disaster that one wouldn't wish on anyone. Doug: Wayne, what proportion of HIV+ gay men would you say take a positive and constructive approach to their life with HIV and how many are needlessly self-destructive? Wayne, NZAF: It is a hard one to measure, but the majority that come through the Burnett Centre are still going and looking forward, and are still relatively well. I think a lot has to do with one's mindset. Keith: Some positive people talk gaily and repeatedly of living with HIV when in fact they're slowly dying of HIV infection. Well gentlemen and Miss K's friend, I have to go so I'll bid you goodnight. Ryan: Me too... 9pm, sleeptime. Cheers! Keith: Goodnight. Wayne, NZAF: Goodnight all! Doug: Goodnight guys. Chat - 30th March 2004    

Credit: Chat

First published: Tuesday, 30th March 2004 - 12:00pm

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