Scott: Living within boundaries

Over the last eighteen months Scott has stopped smoking and cut his drug use. He’s had to find different ways to fill the weekends. Doing that without getting bored was a struggle at first, but Scott has now managed to get into a groove.

‘I wouldn’t say I was addicted to anything. But there were situations where I was dependent on my speed, cigarettes or e’s. And those were every weekend!’

Regular drug use was taking a toll on his relationship. ‘My partner of many years, we were worst enemies. It was like two dogs tied to the one chain. It was a period of testing the boundaries of being diagnosed HIV-positive. But, only from hindsight, realising I didn’t accept the diagnosis.’

After his diagnosis, Scott had submerged himself into a drug culture. ‘It was like daring myself to see how far I could go as a positive person. It was quite strange behaviour, and I’ve only been able to talk about it in hindsight.’

‘To me the whole drug thing was a real destruction, instead of accepting the diagnosis. Not that I’ve ever been a person going around feeling badly done for by it. I don’t at all. My decisions are my decisions and the outcome is something I live with.’

Scott made the scene the centre of his life. ‘I feared that if I didn’t, then HIV would be the centre of my life.’

The first big change for Scott came when he got bored with his routine around smoking. ‘I would have a cigarette and think “I really didn’t need that. Why did I have it?” Getting up of a morning and thinking “where’s my asthma puffer so I can have my first cigarette because the coffee’s ready.” And going “this is really silly”, and not knowing why. But I would have it. There was this complete blockage in my brain around reason when it came to wanting to give up.’

‘I was also tied in with the weekend socialising. God, I look back at that now and laugh at myself, it was getting boring and a waste of money. Monday mornings were becoming harder.’

‘I ended up in hospital with pneumonia [1]An inflammation of the lung, usually caused by infection with bacteria or other microorganisms, in which the air sacs of the lung become filled with inflammatory cells which solidify and inhibit breathing., not HIV related, probably lifestyle pneumonia. It was a wakeup call.’ This was the impetus for Scott to stop smoking. ‘I’d promised I would never stand in front of a hospital with a drip trolley having a cigarette. I kept that promise. It was pretty hard. I had my partner’s support, he jumped at the opportunity.’

‘I made the stupid mistake of telling everybody. So everybody was watching. They also saw me put on about 15 kilos. So I started thinking “well smoking is an appetite suppressant. If I start smoking again I’ll lose the weight.” Then the fear of God went into me that I’d end up being a fat smoker. So I thought “I’ve got to stick this out.”’

After six months things started working out. ‘I started losing weight and now I’m only two kilos off my original weight.’

‘The biggest benefit for me has been the management of my asthma. I don’t even have Ventolin, my treatment for asthma, in the house now. I still use my preventer once a day. I was using it four times a day before. It’s been a huge change for me.’

While smoking causes damage to the lungs and can exacerbate respiratory conditions such as asthma, there is also evidence that demonstrates that people living with HIV who smoke are more likely to get infections and AIDS defining illnesses that affect the chest. For example HIV-positive smokers are more likely to develop PCP pneumonia and oral thrush compared to non- smokers. Also, illnesses such as emphysema occur more commonly in HIV-positive smokers compared to HIV- negative smokers.

Scott’s other big change was around drug use. ‘Our drug taking phase was in the speed era. I think we hunted down the last batch of speed sold in the gay scene. We made an informed choice that we weren’t going to get into crystal. We tried it and there’s one thing about being fucked Sunday night, it’s another thing not being able to go to sleep ‘till Tuesday. That’s a whole different boundary to deal with. As crystal came on the scene we thought “now hang on, time to put the brakes on here.”’

The hardest thing was finding ways to fill the time. ‘There are only so many games of Scrabble you can play. Saturday night TV is shit. Sundays you can kick around but Saturdays used to be so long.’

‘It was hard learning to socialise differently. If you go out for a beer at 11 and you’re tired, maybe that’s normal - so go home, no race to keep going till 10 the next morning. There always seemed to be that challenge.’

It was difficult for Scott. Putting the brakes on using drugs also meant changes in his social networks. ‘You don’t want to think that people you used to associate with are bad because they’re still doing it, but over time you lose contact with that group of friends.’

‘It was quite a discipline. I remember once laughing, if this is what it’s like to be straight every weekend, this is really sad.’

Now Scott and his partner have restructured their weekends around other activities. ‘More outdoor stuff, a lot more.’

‘We live near a 7 km bay walk. I really like getting home and walking. Not saying “I’m really tired because of the day at work.”’

‘There’s certainly a lifestyle and health outcome. Little things, like if you’re not tired then you’re not irritable around other people. And looking back at moments of psychosis, of paranoia about something, and thinking “that’s really weird”. Those things don’t happen any more.’

‘I always said that I was on top of my diagnosis. I think everybody does until they’ve lived longer with HIV and understand themselves better. Then they look back. Certainly I’ve looked back to periods where I had thought “this isn’t an issue” and gone “wow, hang on, it really was because where I’m at now proves that.”’

‘I have more time to give to my health, and friends and family, and work. Giving all that time to activities that give something back to me. I feel better and more positive. I feel more in control, that’s been the better outcome.’

‘It all comes down to balance. I’ve made changes and adjustments but it certainly doesn’t mean I’ve become this carrot eating health freak who is anti- everything.’

‘My HIV isn’t going to go away but I can do a hell of a lot to make it better. I put that down to acceptance of where I’m at. Realising that there’s so much opportunity. It’s all about balance at the end of the day. That’s what it all comes down to: keeping your head strong, keep it balanced, keep everything around you balanced.’

‘I’m at a point now where I’m not looking for those destructions. I’m quite able to talk about being positive and what that means to me. I think getting to that point also means, I’m never going to have a child, but this HIV is the next best thing. I clothe it, I feed it, I look after it, I educate it, and I keep it warm. It’s never going to go away, it’s always going to be dependent, but the more I look after it the kinder it is to me.’

‘I’m fearful of slipping into old habits, but that won’t happen. I’d love to take up smoking again. But I’d love to not have asthma as bad again. So I weigh that up and there’s no choice.’

‘My biggest fear is of being in a bar in six months time trashed with a cigarette in my hand and standing under a picture of me saying “healthy living.” That’s my biggest fear!’

‘The other thing I’m also finding interesting is that, as I’m getting older, even though I’m still quite young, everybody else is getting older. Like I’m dropping off that scene. Slowly more people are no longer out there every weekend. The other week we just slipped up town for a couple of drinks, it’s the first time for ages. I might as well have walked into a bar in London. 18 months ago I would have known everybody. And I think that just says that people move on. People change.’

Managing HIV. It’s about balance [2].