Recently joined. Was diagnosed over 20 yrs ago. At that time I was praying to have just another 5 yrs but 20 yrs on, I am still well and had been undetectable for at least the last ten yrs.
Life is good now. Just looking to make friends who are in the same situation. I live along the south coast.
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chibai
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Yes very near ,hope you are having a good bank holiday
I find such stories very impressive and put modern diagnosis in some perspective. I have heard some incredible stories of people in 95 or so simply waiting in bed to die then HAART comes along. From lying down incapacitated they rise up a few months later in much better health. Quite an incredible story!
As one of 'statesman' of HIV, having been disgnosed in 1985, I have to smile when people suggest that we are lucky to be around after 30 plus years.
Luck has very little to do with it. Its hard work!
Friends were dying at an alarming rate at the start of my journey, people I had become dependent upon to help me find out who I was. Friends who you had imagined would be there for you for years and years to come. My life as a gay man started with tremendous loss, misery, rejection, funerals, suicides. There was so much pressure for a teenager trying to kickstart his life.
I honestly expected to die before my 21st birthday. The reminders of the death sentence that was now coursing through my body were there daily - from the media and government alike. we had no THT and red ribbons were still just for little girls hair.
We had pneumonia, Karposis Sarcoma and other 'minor' infections that turned deathly. Hidden in hospital 'clean' rooms on TB wards. Nurses and doctors alike, frightened to treat people or as in one friends case wearing rubber gloves that wouldn't be out of place in space.
Some of us were then 'lucky' to trial AZT, the 1st real step towards treatment. It worked, but not for all. I have friends who have been pumped with so many experimental HIV drugs over the years, that they are now at a treatment cul de sac - with limited options going forward.
There is the depression, 'survivors guilt', suicide, lack of planning for a furure (that wasnt expected) and loliness that still consumes those that are now getting older with HIV. The larger organisations still dont have adequate support for long termers - prevention still being the buzz word 30 years later. This is where the next big problem lies. Keeping us alive is now the easy bit - we now need to keep those of us at the other end living well and living healthy (both mentally and physically)
I got this far by being bloody minded and not letting HIV be the definer of my life. There are enough labels each of us can carry. Its not luck - it has been hard work - IT IS HARD WORK.
What we all need to be thinking of now, now that we all have a good chance of being and remaining undetectable are the problems with long term HIV, older people with HIV and just as importantly why people are returning to unsafe sex and those who think HIV is a badge of honour. Let's not abandon the few that have been around from the start and the ever growing number to come...
Sorry if my response implied a pure element of luck. Though I can't appreciate the struggle and trauma your story further amplifies what I am currently reading in "How to survive a plague" which gives some insight in to those days.
No being lucky is a HUGE part. I KNOW Im extremely lucky - I'm told that regularly 🤔
The guy who, unknowingly at the time, passed HIV to me and a couple of others was dead within a year. It was also at a time where he was 21 and I was 17, so he was also breaking the law The other two within the following six months. Other close friends were all gone before 1990. From my diagnosis until my fifth anniversary I saw 68 people die. Many of whom were without support of family and often ostracised from even the gay community at large. I was only in my early 20s and I was helping with at least one funeral a week - or at least that what it seemed like at the time. They were incredibly dark times. So, yes I felt blessed. Something was keeping me 'alive' and it wasn't easy having the tag of the one that seemed to be getting away with getting poorly. Something that as time has progressed rears its ugly head - survivors guilt! There were times when people would look me in the eye and say 'why them and not you?', with hatred in their eyes.
Luck, my friend, is a valuable commodity - just dont push it. Putting HIV 1st in your life allows it to take over. Its all consuming and ruins everything. Life now with HIV doesnt have the associated death sentence. You are able to plan, fulfil ambitions. Live!
Im here for you and everyone else that is interested in how it was 'in the old days', what's changed and what hasn't! What still needs to be done? I'm not 50 yet. Didnt think I'd reach 20 to be fair. So now I'm in my 33rd year - I can finally contribute again with a certain level of insider knowledge that only a few hundred people in the whole World possess.
Initially there was a lot of regrets and remorse but now I have accepted my HIV and I am just getting on and enjoying my life. Luck or no luck it doesn't matter any more. It's the here and now and the future that's important.
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