Interview 14

Age at interview: 35

Age at diagnosis: 31

Brief Outline: He believes dealing with multiple difficulties in his life like HIV has made him stronger. He takes Fosamprenavir, Ritonavir, Tenofovir and Emtricitabine (6 tablets once in the evening) with few side effects.

Background: A single gay male living in a city in the North, who also suffered from agoraphobia and from winter depression.

More about me...

Age at interview' 35

Age at diagnosis' 31

Sex' Male

Background' A single gay male living in a city in the North, who was diagnosed in August 2001. 

Outline' A single gay male living in a city in the North, who was diagnosed in August 2001. He also suffered from agoraphobia and from winter depression. His mental health team helped him to move out of a bad neighbourhood into a better Housing Association flat. He was on benefits and active in seeking work. He believes that because he has had to deal with multiple difficulties in his life, this has made him stronger, and made it easier for him to deal with HIV. He takes Fosamprenavir, Ritonavir, Tenofovir and Emtricitabine (6 tablets once in the evening) with few side effects. His CD4 count was 540 and his viral load 46. He also attends discussion groups, has massages and does voluntary work.

Was fearful of death when he was first diagnosed with HIV

When I was first diagnosed, my brother's father died. And my mum asked me to go to the hall of memory and things with him. And I said, 'Well, basically, can't his son go? It's not my dad. Send our [name]. Our [name] should go, really, if anybody.' And it just freaked me out. Just seeing hospital programmes or anything to do with medical things or' Just really freaked me out. And I started having bad dreams about being buried alive and things. And I just' really freaked me out for about' 6 months this went on for. And then I don't know what, just snapped out of it. I don't even think like that any more. Just don't'

Explains that when things seem terrible things do tend to get better.

And we all need a bit of sympathy sometimes. But I'm not the most sympathetic of people, me. I just go, 'Just fucking snap out of it' [laughs]. Do you know what I mean? You know. That's all I can say, really, is keep going. It might seem terrible now, but in a year's time you might' well, you will, you'll think differently. Because time's a great healer. And you come to terms with things within yourself even, you know, even' It all just works itself out in the end, I think' 

So you can change even it you don't think you can or you think your'?

I never thought I'd snap out of it' the position my head was in a year ago, I'd never thought I'd ever snap out of that. I thought that was it. It was all doom and gloom and it was all down hill from then, but sometimes you have to hit the bottom to go up

And you can only go up when you hit the bottom. Only' The only way up' The only way to go is up. You know. And sometimes when you have nothing, you have the freedom to do anything.

He had difficulties taking his medication at a regular time even though he only took them once a day.

Well, initially I started taking them, should have been 7 o'clock in the evening. But it just seemed to get later and later. And sometimes I'd fall asleep on the settee and actually I've totally forgotten. So I was waking up at 2 and 3 in the morning, thinking, gosh, I haven't had my pills. So I had to have a quick meal drink, so I put a lining on my stomach, and take my meds. And it just kicked in about 4 o'clock every morning. And this went on for a couple of months. And I thought I need to get this at a regular time. Because I'm fed up of waking up in the night and taking them. So I went back to try to get it earlier and earlier. And it sort of levelled out about midnight. And I was taking them at midnight [pause]. But sometimes I've just totally forgotten. Sometimes. Completely forgotten.

And you're not allowed to double up, so' Recently I tried to start taking them in the morning, see if that would be any good. And then one day I actually doubled up. Because I took one on the evening. I was due one in the evening. And I thought' It was like 4 o'clock in the morning, and it should have been like 7 o'clock. So I thought I'd try and just' you know, bring it to morning, if that'd help. Because he suggested at the hospital initially that I take them in the morning. But I'd be going out of the house dead early, forgetting them. Completely forgetting. So now I'm back to teatime, and I'm doing ok. The last few weeks I've sort of taken them at teatime.
 

At first he was scared of the list of possible side effects but his side effects settled down in time.

Well, initially just reading the bloody list of side effects was scary. I thought, do I really want to put up with all that? Or shall I just not take the drugs? You know [laughs]. So that was quite off-putting at first. But then I thought, I have to. So I started taking them. And it, it took 3 or 4 days before I could actually start taking the medication. I was quite scared. Because of things like lipodystrophy and liver problems and all sorts of pre-cancerous cells and all sorts of bad stuff. So it really scared me initially. But when I first started taking them, terrible. I had diarrhoea, terrible, for about a month. I was pissing out of my arse. I was being sick. It was… the, the actual contractions were so powerful it was just painful.

But I was, I was constantly on the toilet for about a month. Then it all just settled down. And I've been fine since. I get the odd metallic taste in my mouth if I take them on an empty stomach, but they are fine, the drugs are fine.

When he was afraid to leave the house (agoraphobia) his HIV clinic found him a community support worker.

I just stopped going out, completely. I just stopped putting credit in the electric meter, and stopped buying food, and just stopped going out, basically. And I was sitting for weeks at a time with no electric, no food, nothing. You know.

The most difficult thing' I mean luckily one of the neighbours there, he used to like drop round and ask me if I needed stuff from the shops and stuff like that. And for a time' Without him I'd have been lost. I'd be dead, I think, by now. You know, I would have just rotted to death [laughs]. You know. And then I, I spoke to' I had to go to the hospital for regular bloods and that. And I, I didn't go for about a year. And I basically got a letter saying, 'Why haven't you been in?' So I responded to that. And I was just telling him how I was feeling. And he sent somebody from adult placement, which is at [city]. And he basically set up a community support worker. He started coming round, taking me shopping, making sure I was eating and even getting out of bed, you know, some days.
 

Talks about the range of things that his local HIV charity does to help people.

They help with just getting letters together, liaising, just basically anything that you go to them for. I mean financial help, even, if you need it. Just all sorts. They put you onto Cruisaid for grants, or' just daft things. If' I mean they keep saying to me, if I've got no motivation, which I didn't have like a year ago, if I need to go somewhere, just phone them. And they'll send me a taxi. I can get a contract taxi. But I won't take the piss like that. I just won't do it. You know. I'm sort of too, too hard-headed and independent for that, you know. I'd rather walk than get a free taxi. I just [laughs]' you know. But they do all sorts, you know. Just support really. Advocacy. Office based, I can even go and use a computer there if I need to. Use their offices. Just lots' They just do lots, really. They just' And phoning for counsellors, so that' And they're going to start doing alternative therapies, massage, that sort of stuff.

It was difficult to convince his HIV negative partner that he should use condoms for anal sex.

But I was always' I always thought that it's my responsibility to protect him. And the more I tried to like use safe sex, the more we used to fight and row. Because he didn't' just didn't want to do it. He'd say he couldn't get aroused using condoms. You know. But I used to insist. I just had to insist, you know. I mean we did oral and stuff unprotected and that. But, you know, when you tell someone till you're blue in the face that they shouldn't be doing it, and they just go ahead and do it anyway, where do you go from there? You know. But it did, did cause a lot of' initially a lot of problems. Because I just didn't want that on my conscience. I was dealing with my own shit in my own head, you know. I didn't want his' And he was enough' He was high maintenance enough anyway [laughs]. You know. Without adding to it.