24 July 2013

Even after eleven years, going for my results (sounds like waiting for exam results – I wish!) still makes my stomach churn and brings back that horrendous day when I was first diagnosed. The sheer horror of that feeling – from this day forth nothing will ever be the same again. I am now another person, a person who is HIV positive. No one is going to like me, let alone love me. I am a threat to society, a social outcast, a leper. That is how it felt and still feels in my heart, although I do everything I can to try to change that, overcompensate probably. I live a duplicate life. There are two of me, the me that is HIV positive and the me that just wants to pretend I am a normal person, whatever that means.

I can still see the room, the chair I was sitting in, the jumper I was wearing. It had bobbles on it. I’d knitted it myself in the days before I’d decided life was too short to knit. I was fiddling with a bobble when the homeopathic doctor told me. Can’t believe I used to knit bobbles!

There is possibly nothing worse in life than getting that first diagnosis, because there are associations that go along with it – you are unclean, you are a threat to other people; you have been engaging in risky sexual practices, you are going to die an agonising death. None of that is necessarily true I know that now, but at the time…….

Eleven years on I go to see my specialist. I have changed doctors recently because as I am getting older I want to be with the best there is who can offer me the most up to date information and options in case complications set in and he is the best, although I have to resist the temptation, as his name is Sweeny, to call him Sweeney Todd. Viral load still undetectable, CD4 count 880 – good cholesterol good – bad cholesterol not too bad after changing from duronavir which caused it to hit cholesterol bloody roof, kidney function good after changing from truvada. All good, good, good, don’t have to see him again till next year. “Well Happy Christmas then doc,” I say collecting my Santa sack of pills.

I had been totally honest with him and confessed that occasionally I’d been missing doses. How occasionally he’d asked me and why was I doing that? I’d also mentioned it at Thrivine the support group I run in Blackburn. The others were horrified, what are you doing, why are you doing it? You’re playing Russian roulette. “Thought I’d give my bodily organs a rest from the toxicity of the medicine,” I hung my head sheepishly. “It doesn’t work like that Adrienne,” said Cath, who knows everything there is about the meds because she’s been taking them for thirty years. Poor thing was only eighteen when she was diagnosed. “Think of it like this,” she said putting it in layman’s terms – “HIV meds are the parents and the virus is the children, when the parents go out the children get up to mischief.”

Well when you put it like that……

My sister put it even more succinctly – think of what happens on face book when people announce they’re having a party when their parents are way on holiday, the whole world turns up on their doorstep and wreck the house. She recalled the time we were living in Singapore when my dad was in the RAF and I had a party when our parents had gone to a bridge drive and the whole camp had shown up. My mum came home to find her padded bras strung along the street, all hell let loose, the floors covered in rice and someone teaching my baby sis to roll a joint.

Whilst the cat’s away the mice will play. Well I certainly don’t want any of that going on in my house/body. I don’t want, metaphorically speaking, my bras strung along the street, mice running amok, an end to face book or all hell let loose in my innards. Don’t ever want to be back to square one, to hear the virus has become detectable, that it is duplicating itself, that I have run out of medication options, that I am going to die an agonising death from AIDS. So I won’t be doing it again.

Here endeth today’s lesson.


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