Thanks for your post. I think you are the first person that I am communicating with who also knows that HIV is affecting his brain & mind. Thank you for that.
I'm currently wondering about writing an article about my clinic for a national newspaper, without actually naming the actual clinic - because I suspect what I am experiencing at my clinic is going on in lots of clinics worldwide. The doctor who heads my clinic just doesn't want to be involved, he doesn't want to know. He doesn't care about his HIV patients. He dismisses the problems I bring to him. His attitude is that all the problems I have are "par for the course", i.e. part and parcel of having HIV. Bad luck. Tough cheese. The only other people at the clinic are nurses. They do want to know but they too concern me. For example, they want to cheerily go through the motions of taking the blood every three months and weighing me and so forth, but they too don't want to hear about the problems. It's very strange. Maybe they are fatigued with seeing patient after patient with HIV, particularly as many of us are naturally depressed. Maybe they are just protecting their own "good cheer" by putting up a barrier against our miseries. At the same time I often get the feeling that they would prefer it if there was more serious drama going on, i.e. patients not reporting difficult side-effects but actually developing life-threatening conditions again. In other words, I get the feeling they would actually prefer it if we were dying, if the wards were full again. As it is, we are on these cocktails which are keeping us alive and in fairly good health: so, in their view we are going to go on living and living and bringing to them this endless list of side-effects for years to come. At my clinic I almost have to beg for my medicines every three months: they give them to me as if I ought to be extremely grateful. I get the impression that some of the nurses also feel that we should be paying for them - that it is wrong for us to be kept alive with these drugs for free when individuals with other diseases sometimes can't get hold of the drugs they want or have to pay a great deal of money for them, re-mortgaging their homes etc.
This is not a good situation to be in, is it.
You sound like you have a very different clinic. Good.
As for the mental deterioration, let's keep fighting it as best we can. I now have a big sign on my desk saying "Check Carefully!". Not so long ago I didn't need to check so carefully - I checked automatically as I went along. But now I find that things I write often contain "stupid" errors. So it's yet another thing I have had to take on in my life: this extra layer of care with regard to everything I do. It's all a bit of a strain.
Oh to be a 10 year old lad again without a care in the world, and certainly without HIV!
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.