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No bed of roses
What I would like to know is: why is being HIV-positive so often portrayed as being a bed of roses these days?
I was been diagnosed in 1994 at which time I had already been infected for about ten years. I had a zero CD4 count, and viral load tests weren’t being used as part of routine HIV care yet. My diagnosis came after a year of PCP pneumonia treated as asthma. There has been a steady stream of 'afflictions' ever since. Some caused by the virus itself, some by the anti-viral drugs.
First to go was my sense of balance. My gait became unsteady. I joined a drug trial that gave me heart failure (thought to be terminal). That put paid to my ability to walk, especially after vucuolar myelopathy ate away at my spine. I've been permanently in a wheel chair ever since. The protease inhibitor indinavir came along and saved my life. However, this was at a cost. It caused diabetes and kidney stones. My right kidney, to this day, is still a cause for concern.
I also have a permanent urethral catheter which 'gets in the way' sexually. I've also pancreatitis, anaemia (requiring several blood transfusions), anal cancer requiring extensive surgery leading to a permanent colostomy, disfiguring lipodystrophy and liver disease which has caused serious bleeding problems.
My latest, and worst, problem has been caused by intestinal adhesions brought on by abdominal surgery. This leads to occasional hospitalisations to treat blockage of my bowel. It is as good as untreatable and causes me significant discomfort and pain on a daily basis. I must eat an insipid, fibre-free diet (also diabetic). I suffer from alternating bouts of constipation and floods of diarrhoea. Some days my belly is so swollen I can't even squeeze in sips of water. On these days I eat nothing at all, which would be pointless as I vomit a few times a day.
Each of these can be glibly rhymed off as a list of medical conditions but they each cause physical discomfort, self-image issues and real life practical difficulties. For example, how do you take medicine twice daily with food when you can't eat for days at a time?
My life feels fragile and precious. You have to appreciate life, preserve it and never take it for granted, whether living with HIV or not.