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People's stories

Aged 56-65

Interview 29

Interview 29

Age at Interview: 57
Sex: Male
Age at Diagnosis: 39
Background: A 57 year old gay male retired teacher who lives with his partner of over 30 years. He was diagnosed in 1987. He became unwell and burnt out when he was over-working.

Brief outline:He currently takes Kaletra, tenofovir, 3TC and has an undetectable viral load. He has suffered from painful peripheral neuropathy and uses visualisation and meditation to control the pain.

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He takes 'drug holidays' and lives with the consequences.
Print To start with nothing happens. CD4s and viral loads remain much the same. Then of course the CD4s start to drop, the viral load starts to go up, which is fine… you know, it should be expected, clinically. When I start to feel lousy, or when my partner or my mates or friends start to say I'm getting really ratty, and really shirty and a complete prat to live with, coupled with the numbers, I think oh oh, now is the time to start back on the pills. Last time round I did it, I took too long, I took 18 months off. Which was too long. And the interesting thing about holidays is that you have this wonderful thing called 'cell memory'. In as much as the cells seem to remember what the drugs were doing, or what the virus was doing. After 18 months those cells seems to have vanished. So when I went back on to the very same pills that I'd stopped taking before, my body didn't remember them. And so for the first fortnight it was a bit, it was like a… what would you say a drug virgin. I was vomiting, I got night sweats, I ached, I was ratty, I had diarrhoea.

His senior position in a school was very stressful and his mental and physical health suffered.
Print I see that the immune system is the problem, with the virus. And if you live calm, ordinary, well secured life, then everything is fine. But if you start putting school inspections into the equation. In, you know, in the state schools like OFSTED, or in the private schools, the private school equivalent of OFSTED. And then you put parents evening. And then you put end of term reports. And then you put the whole thing that goes into education, which when you're 24, 25, 30 you've got the energy to cope with. When you are in your 40s, you haven't got that sort of energy. And round and round it went and eventually I just completely fell apart. I did. And that was about 10 years ago.

Talks about how people can focus on - and enjoy - the present moment.
Print If you're so busy wondering about the next pair of new shoes, well, enjoy the ones you're wearing now. Yes by all means think about who you are going to send Christmas cards to. Or who you are not going to send Christmas cards to. But only actually worry about it when you're doing the writing. Plan next January's holiday by all means. But enjoy the planning, because now is the time you're doing it. The holiday might never arrive!

Talks about the difference it makes to talk to someone who has been through what you are going through.
Print The difference is actually being there and saying, yeah I remember how it was. That's how it was and this is what it has become, which is a damn sight better. So hang in there and you'll be fine. Because the rash will go away, the headaches will stop, the night sweats will change. Because until you've had night sweats, and I'm not talking about the odd bit of perspiration, I'm talking about wet soggy sheets that you cannot possibly sleep in. If you're in a double bed, you could always roll over the other side, but if you're in a single bed it means you've got to get out of bed, change the sheets. And who needs that at 3 o'clock in the morning when you are hurting, when you're tired and you just want to die. And if you're living by yourself, well it wo… what's the option?

Talks about how he discovered that the new treatments work.
Print Went to the [name] clinic, oh back in, God knows how many years, seven years… was it seven years ago? And I met an old friend there who was absolutely booming. And I said, 'Well what happened? Last time I saw you, you could barely walk and you were gasping and you were booking funerals.' He said, 'Oh I'm taking the pills. They're wonderful.' And I thought well heavens above, this guy's 10 years older than I am and if this is what they're doing for him, then I'm going to have some.

Described a meditation technique that could alleviate the pain from peripheral neuropathy.
Print It's an old Buddhist breathing thing that basically I use it through abdominal breathing where you think in terms of a square. And the idea is that you breathe in to the count of four, so extending the abdomen, and then you do nothing for the count of four, then you breathe out for a count of four, and do nothing for a count of four. And how long that four is, it really doesn't matter. It's depending on you. Sometimes it's quite nice to do it to a metronome or to a ticking clock. So that can be quite irritating sometimes. And you actually… it sounds the easiest thing in the world, to go in do nothing, breathe out, do nothing. But you get distracted. And if you can actually keep going back to that pattern, and when you're secure in it, actually hone in, mentally, into where it hurts. There's no point in saying your leg hurts, sorry that's not good enough. Which bit of your leg hurts? Top bit, bottom bit, side bit? OK you've got that far. OK, well let's actually get it down to within two inches. OK we've isolated that, now move into one inch, now move into half an inch. And now you get into the centre of it, find which follicle is hurting. And the extraordinary thing is if you can get through that process the pain suddenly vanishes. And believe you me it actually happens.

Being a senior teacher was very stressful, his health suffered and he had a 'breakdown'.
Print I see that the immune system is the problem, with the virus. And if you live calm, ordinary, well secured life, then everything is fine. But if you start putting school inspections into the equation. In, you know, in the state schools like OFSTED, or in the private schools, the private school equivalent of OFSTED. And then you put parents evening. And then you put end of term reports. And then you put the whole thing that goes into education, which when you're 24, 25, 30 you've got the energy to cope with. When you are in your 40s, you haven't got that sort of energy. And round and round it went and eventually I just completely fell apart. I did. And that was about 10 years ago.

Talks about how people can focus on - and enjoy - the present moment.
Print If you're so busy wondering about the next pair of new shoes, well, enjoy the ones you're wearing now. Yes by all means think about who you are going to send Christmas cards to. Or who you are not going to send Christmas cards to. But only actually worry about it when you're doing the writing. Plan next January's holiday by all means. But enjoy the planning, because now is the time you're doing it. The holiday might never arrive!

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