HIV

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.

The Sustiva (efavirenz) made me dream abnormally! [Laughter] I dreamed seeing snakes coming to me, I had nightmares. I dreamed seeing my dead relatives… I think maybe it's because I was scared of the medication. 

But it was difficult… Then after, the next morning and the next day again, oh the other thing, I couldn't sleep. Maybe it was the first time, I couldn't sleep the whole night because of the Sustiva or maybe it was my fear I don't know, I only slept in the morning. And when I, in the morning I was feeling very tired. Getting up from bed was hell. Oh, then I phoned my consultant and my clinical nurse to tell them that I had, I was dreaming too much abnormally. They told me that it is the Sustiva. 

Then they told me that I should change the time of taking. Maybe if you take it a bit late, it would help. [Laughter] Yeah I tried that, it… it helped but, maybe it helped halfway because I, I could now dream four days a week [laughter]. Then they changed the Sustiva to another drug. 

Then I was so surprised…. I could sleep just like a normal person. Yes. I really changed. Getting up well, sleeping time, and I was… I wasn't moody because, the dreaming was stressing me very much, I was just a very sad person. I was a very sad person.

And I don't really have to modify my diet I think. It is uncomfortable sitting on hard seats for a long time because I've lost all my natural padding. My partner says that I had a nice bottom once but, but there you are... You can't have everything.

And how do you feel about that?

Well. I suppose again it's an unpleasant thing that I block. But I don't, I would like to… I'd like to look great, to be wonderful. Stunning. Handsome, I've never been, I've never felt that I was, though looking back at photographs of 30 years ago I, I would have fancied me! But, there we are, at the time you don't know.

I've changed… tried to change my lifestyle a bit because when I started taking medication, I used to be a size 12. I went up to a size 18 within three months, yeah, it was really, really quick. So… Oh it was very difficult because then my body changed and that is, that was the most difficult thing and still is a bit difficult now because I've suffered, yeah. I do get a bit of lipodystrophy, yeah. 

And when I did put on that weight, again within three months, it was just the weight and then a year after, two years after I started noticing the difference… I mean my legs are very thin down towards my ankle. And I never used to have thin legs. I'm always struggling with fat around my tummy. 

Now because I've started going to the gym for the past three years now, or two and a half years now, I've been going to the gym regularly, and trying to do sit ups and everything. So it's really changed now, I've really changed now… Yeah, it's really helped. I lost the weight, went down to a 12.

And then I went and… the then standard was d4T (stavudine), 3TC (lamivudine) and nelfinavir. And I thought right that's what I'm going to take, I changed a month later to d4T, 3TC and efavirenz. But there we were, I went on it and I took it and my viral load went down to undetectable very quickly, my CD4 count started to climb up but I started to get side effects. The first thing was terrible diarrhoea from nelfinavir, appalling diarrhoea, like you know, it really was like having a… it's like a tap turned on in my bowels. And it wasn't, it didn't lead to incontinence or anything like that but it was like whenever I went to the toilet, it was increased frequency. And then pain in my feet which I thought might initially have been sort of a running injury or something like that but then it just became unbearable and I had to go and see a palliative care doctor for. But I was so reluctant to change my medication because it worked, it really did work. Look at this, my CD4 count was higher now than it had been when I was first diagnosed, it was 550, it had never been that high, my viral load was undetectable. I'd go back the next time, your CD4 count's 700, your viral load's undetectable. So you know, this carried on for ages…

I mean it helps if you're an optimist basically, as opposed to the opposite. I mean, if you're too much prone to sort of giving in too easily and doom and gloom and nothing easily and nothing else is on your horizon, then you're going to have more of a problem with these pills because there will inevitably be days when one of the pills is upsetting you in some way or another. There will be problems with occasional side effects from them, or indeed some of the HIV symptoms may themselves blow up, and it takes you a little while to get treatment for the individual symptoms, and for these… for the treatment to take effect upon those things. So there's no point being worried, you just have to accept that…

Maybe I have side effects and… Maybe the frame of mind I have, I don't look at the side effects I have. Because maybe people will say, 'Oh, you get depressed.' But then everybody gets depressed.

I get tired. Everybody gets tired. I get into a bad mood. Everybody gets into a bad mood. Every now and again, I can't sleep. Sometimes. But everybody does. So I don't look at that as side effects. So as far as I'm concerned, I don't have side effects.

Because for me a side effect would have to be something that only I'm getting, because of the medication, and other people don't get.

So I don't have side effects.

I mean some of my friends have said that they think that's because I didn't fight it at the beginning. So when I, when I took the drugs, I just, I just kind of accepted that for a few weeks I wasn't going to be going out a lot. I wasn't… I mean I, I don't want to make it sound as thought I was in bed all the hours. I wasn't… It wasn't that bad. 

But I wouldn't, I wouldn't be going out late. I wouldn't be going out drinking. I didn't want to drink. I think when you're… you have those drugs your body's kind of saying what it wants to have. Maybe the reason I didn't like to have milk or yoghurt's because my body just didn't want, didn't want anything too fatty. 

It didn't, did not want any alcohol. Just the thought of it was kind of make you feel sick. So it's probably those things your… I know your liver and your kidneys trying to deal with the drugs, it didn't want any… dairy products and alcohol being added into the mix. It'd just be too much. But after 3 weeks it started getting better... 

And I think, because of the quick response, it showed that I was, I was right not to fight it. Because other friends of mine have had medication, and thought, right, I'm not going to let these drugs take over my life. So they're taking them. And even though they're really tired and… they're going to… they insist on going out clubbing. They're going to go out. And it's taken them 6 months or so to come down to undetectable. Really long. Like really slow. And not feeling good. 

I mean there are still biomedical issues actually. One of the big ones was that… and actually it did turn out to be very benign but I had a couple of elevated cholesterol results and I think they were just probably because I had a croissant or a fat cake before I went in to have my blood taken that morning because I was starving so I'll take my tablets. And I also developed a very, for some reason I developed an irregular heartbeat and it was taken incredibly seriously. And I felt as though I needed to go and see a cardiologist and things like that, like they do, you know not just ECG, the ECG picked up on the irregular heartbeat as well and then having to do like exercise ECGs and have this 24 hour tape on me. You know it was like Jesus you know, I'm in my early 30s and you know, and I'm very fit and I shouldn't actually be having to walk around with a 24 hour tape measuring my heart rate. And it turned out to be something called bradycardia, which is actually a function of having a low heart rate, a resting heart rate from exercise.

Sort of I'm nearly 40. And I, I basically know that I, I am menopausal. Because I'm not producing testosterone. Even though I've got testosterone and I've got a bit of sex drive. And then to be told I've got osteoporosis. It makes me feel like a little old lady.

[laughs] And I must admit I was incredib-… That's one of the few times that I've been adamant that I haven't got something. 'No, I can't have that.' Because I do weight bearing exercise. And I take testosterone. And I have a calcium rich diet. And, and of course it came, [laughs] came back as being positive. But yes, really it's just lack of sex drive, tiredness. But it's hard to know… I mean I, I suffer from chronic fatigue anyway. And when you get honest doctors… At the stage that I'm at anyway, because, as I said, I've been positive for near, nearly 20 years. Next year it'll be 20 years.

April next year I will have been positive for the same duration that I've, I've been negative before. So 20 years negative, 20 years positive.

And honest doctors will say to me, 'Well, you may have the, the chronic fatigue because of the time that you've been positive. Or because of the different drugs that you've taken. And, and the, the fairly heavy drug load that you take.'