POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Jr on December 19, 2013, 03:33:56 pm
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I recently had a heated debate with a friend about the prospect of living a long life with aids that ended with both of us having hurt feelings. It started with my friend telling me I should be happy I can expect a long and healthy life thanks to meds that are available now. There was a time I was happy at the prospect of living a full life, but not so much now.
When I was diagnosed back in 1991, I was told I had only 2 years to live. I was 18 and feeling healthy back then so living as long as I could became a priority and only seemed natural. Thanks to breakthroughs in research, I have made it well beyond the 2 year expiration date I was given, but the cost has been high. It seems the longer I live with this disease, the more health problems I have. So I had to tell my friend that while living longer than expected could be great on the outside, it isn't so great when faced with every new problem or complication that pops up due to the disease or the treatments. There comes a point where quality of life needs to be included in the entire picture.
So the debate started and my friend took that as me giving up and wanting to die, which is far from the case I was trying to make. I don't want to die, but when I experience what this disease has been doing to my body all this time, I can't help but question if it has been worth it. Years with this disease have affected me physically, socially, and financially. From my perspective it doesn't seem like it will be getting any better. Just new problems with new pills to take and more limits on what I can do.
Am I crazy for questioning if living a long life is worth it when it is not a healthy one?
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Am I crazy for questioning if living a long life is worth it when it is not a healthy one?
Hey Jr,
I think it is quite normal to have such thoughts and during years, with health challenges, they seem to come more often. I've been poz for 30 years and have often questioned longevity vs. quality of life, but it always comes down to the same answer.
I wish to live, even with my challenges, because I am just not ready to give it up. For me, even a reduced quality of life, is far preferable to being dead.
Joe
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This was such a common debate in the 80's and I can't blame anyone for their views on this issue. Feelings are so individualized. I've come to terms with whatever choice people make. This wasn't an easy transition. My bestie since childhood and I both started monotherapy and suffered terribly. Even though I considered stopping the meds, there was an internal fight to survive.
I cried and fought with my friend when he made the decision to stop meds. I was so angry at him for a short while. So while I could barely leave the house, he was enjoying life without meds and side affects. But alas, the inevitable happened.
Personally, I'll continue to deal with all the issues this virus causes as long as I can continue to experience joy in my life. Had I died along side of him, I'd have missed out on so much. So even if I have to take more pills each year for different ailments, it's better than the alternative.
Wishing you well.
Wolfie
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I don't want to die, but when I experience what this disease has been doing to my body all this time, I can't help but question if it has been worth it.
It is still better than being DEAD, when i wake up every morning , i say to myself
I made it thur the night, and didn't die in my sleep, I try not to think about my aging body
and all of it's aches & pains, I do take other non-HIV- medications to help with all of this
as well as all the other health problems, I look at it this way, even if I ended up in a wheel-chair
it's still better than being DEAD
good luck to you
HUGS
DEN
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Hey Jr,
I think it is quite normal to have such thoughts and during years, with health challenges, they seem to come more often. I've been poz for 30 years and have often questioned longevity vs. quality of life, but it always comes down to the same answer.
I wish to live, even with my challenges, because I am just not ready to give it up. For me, even a reduced quality of life, is far preferable to being dead.
Joe
Thanks for the reply. I agree that, so far, the reduced quality of life is preferable to the alternative. Though somedays it is all I can think about when I am not feeling well. It's good to know I am not the only one who asks that question.
Jr
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...My bestie since childhood and I both started monotherapy and suffered terribly. Even though I considered stopping the meds, there was an internal fight to survive.
I cried and fought with my friend when he made the decision to stop meds. I was so angry at him for a short while. So while I could barely leave the house, he was enjoying life without meds and side affects. But alas, the inevitable happened.
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I was also facing that choice back then. I had no insurance and had to join a clinical trials for my meds. It was a trial to see if combination therapy was better than mono therapy, and it was only AZT, ddI, and ddC in the study. (Wonderful choice of drugs lol). Anyway, the study had ended and it turned out I had only been on mono therapy the entire time with the one drug I struggled with everyday to take. The huge, chalky ddI tablets. It was the first time I started thinking about letting the disease run it's course. I'm glad I didn't though.
I'm sorry you had to lose your best friend and I hope I haven't offended anyone here by asking such a provocative question.
Jr
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Hi Jr,
Sorry to hear you're going through the wars with your health.
I went through a similar rough patch about 4-3 years ago and would not have cared whether I lived or died. With time my health improved and I recommenced ART. Since then it's been a journey with a lot of hard graft to attain good/reasonable (not perfect) health.
Although my case is only anecdotal it does show that health deterioration is not inevitable. It can be turned around.
I hope you can find a good team to get you back on track.
HUGS
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I had a client who, earlier this year, decided to stop her ARV's. She passed away a couple months ago. I respected her decision, she was a LTS'er and had been through much.
I respect everyone's decision whether or not I agree with it. As Wolfie said, it is a very individualized choice. I would never turn my back on someone who decided to stop the meds.
That being said, I remember monotherapy, and the "newer" drugs i.e. ddI, ddC, d4T, etc. Awful stuff. But, I wanted to do everything I could to live. While I have many "issues" due to long-term infection, I am glad I've been alive to enjoy my daughter, grandchildren, and other family. And friends. And experiences.
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QUALITY, QUALITY, QUALITY!!!!!!!!!!!!!!!!!!!!!
That's my take. There will be no family to take care of me when I'm old. I figure after 70 is when things will start going down hill. What type of life would it be to be 90 and confined to my room and only able to look out the window day after day.
I'm in good shape now and I never had the problems most of y'all lived through. I'm fortunate in that regard. I just had other things happen that were close calls with suffering and dying.
But all my friends and family know...pull the plug.
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QUALITY, QUALITY, QUALITY!!!!!!!!!!!!!!!!!!!!!
That's my take. There will be no family to take care of me when I'm old. I figure after 70 is when things will start going down hill. What type of life would it be to be 90 and confined to my room and only able to look out the window day after day.
I'm in good shape now and I never had the problems most of y'all lived through. I'm fortunate in that regard. I just had other things happen that were close calls with suffering and dying.
But all my friends and family know...pull the plug.
Dearest,
At least wait until you see whats outside the window.
So many clairvoyant's !
I do not know and off course I have asked the question , I do know off one friend who it was read by some to have "given up" I could not agree as !] we ,his friends, where not him, and 2 ] what Wolfie said.
I am lucky in that I get huge enjoyment from BBC talk Radio , reading , this site , friends and evan when well needed time alone to think me thinks , as Huck Finn might off said.
All off the above are off course much better to do with a healthy body but do not absolutely need one to still enjoy.
And here I would like to pay respect to my friend Mark who by being as reliable as British rain in dog walking duties enables me to live with Mia , a dog who requires some input from me every day and gives back much.
However I do not want to be kept alive by machines , supported by a hope off getting better that belongs more to faith than science , so when all options have been considered I do intend by living will to pull my own plug .
Good I am glad to have written this , see how useful this site is to me.
love to all
Michael
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It's a brick wall...I've already seen it... ;D...
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I think it depends.
I like being active. It may be just gardening, surfing the net, bowling, etc., but I rarely sit and vegetate in front of the TV (with the exception of Downton Abbey).
I have had to made some adjustments to my life as I have gotten a bit more mature, but that doesn't mean I plan on stopping my activities any time soon.
As long as I can enjoy life in some way or another, as Michael said, that is enough reason for me to continue to forge ahead.
HUGS,
Mark
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It's a brick wall...I've already seen it... ;D...
Then save to have it decorated , in many ways a blank canvas is the best possible view.
You really are a Happy Harry dear heart , but your our Happy Harry and I for one welcome your presence..
mrmhtVonHamHock
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I think it depends.
I like being active. It may be just gardening, surfing the net, bowling, etc., but I rarely sit and vegetate in front of the TV (with the exception of Downton Abbey).
I have had to made some adjustments to my life as I have gotten a bit more mature, but that doesn't mean I plan on stopping my activities any time soon.
As long as I can enjoy life in some way or another, as Michael said, that is enough reason for me to continue to forge ahead.
HUGS,
Mark
:)
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I've thought about this thread for a while now. I reckon as long as quality of life isn't confused with other issues...then maybe.
I once decided quality of life sucked and decided it was time. It wasn't until I got sick, pert near died again, rec'd excellent care and given hope that things changed. I misunderstood, and wrongly self diagnosed.
My point is, I wish and hope people distinguish between the 2. Horrible things that happen in everyday life can become excuses and jaded reasoning.
hugs to all
wolfie
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Jr I sure understand the questions you raised. I was diagnosed about two years before you, and was feeling very healthy at the time. But I didn't expect to see 30. Surprise, surprise. I've now lived with the infection for most of my adult life.
Sure living with HIV has been a challenge, and the meds as they evolved added to some of those challenges. But I have to say, despite those challenges, and even obstacles created by my HIV status, my life has been fuller and richer than I ever imagined. I accomplished things and gained new experiences. All in a gradual evolution as I kept finding I had more and more time.
The time may not be all quality, or even something to write home about, but you never know what's around the corner, so I've learned sticking around is worth it, if you keep your eyes and heart open to life.
Best to you!
JD
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I think it depends.
I like being active. It may be just gardening, surfing the net, bowling, etc., but I rarely sit and vegetate in front of the TV (with the exception of Downton Abbey).
I have had to made some adjustments to my life as I have gotten a bit more mature, but that doesn't mean I plan on stopping my activities any time soon.
As long as I can enjoy life in some way or another, as Michael said, that is enough reason for me to continue to forge ahead.
HUGS,
Mark
My Mother and Father met as servants in something resembling OntheDownlow Abbey. That world was in the 1930,s reeling from the effect off the first world War , but it was still very very strong. It took the 2ND World War to reduce its influence so that in say 2014 12 off the present UK cabinet went to Eton.
The British working class are so forgiving and its aristocracy so adept at change that we have avoided revolution,Russian style. Mind you Russian aristocracy where just uncouth idiots with Tolstoy being the exception that proved the rule .