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The habit of living like time's running out?

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moxieinme:
Welcome to my first forum thread. Might as well jump in with both feet.

I have been poz for over 24 years. I was diagnosed in the bleak days of 1989 when HIV was considered a fatal condition. While my CD4s at initial diagnosis weren't horrible -- 330 -- in those days that was a pretty grim number. I've been around the block with med regimens, struggled with up and down CD4s and VL, had clinical AIDS diagnoses, and skirted a few health disasters, but here I am all these years later leading a pretty healthy productive life thanks to clinical trials and salvage therapy. In my community I am regarded as a picture of health.

The problem? Ever since the beginning I've lived with that sense of fatality around my HIV infection. The feeling that my time is limited or running out. Of course there were times when that was valid, but what about now? Everyone knows how successful current treatments are, but am I wrong to let go of my fear of HIV and its effects, or am I wise to remain wary? Regardless of the success of treatments, I am aware of those insidious effects of long-term HIV exposure and infection, not to mention drug side effects. How much attention and concern do I give them?

I readily admit there are great benefits in learning to live for today. It can be an essential coping and survival tool. But at what point does it hold me back?

To cite personal examples, I changed the course of my life and career more than once back in those early days because I didn't have the time or resources or sustained health to pursue them. Now I live with some regret of missed opportunities. (If I had only known…) As another example, I went on long-term disability due to health concerns and made a big life-changing move, assuming I was in my early retirement with a very few golden years left. That was 14 years ago. Now I'm stuck in the tender trap of LTD. Granted it has enabled me to do good things and contribute to my community, but the associated guilt and stigma it weigh on me. It's not a free ride by any means.

More concerning, I am now in my early 50s. I have another decade before the usual retirement age, at which point my financial picture will change drastically. I never in 24 years years imagined living to my senior years, and honestly, I still have a hard time believing it. I have not planned or prepared for it. I gave up 401k's and retirement savings a long time ago.

So…all of this is to solicit people's views. Am I just in a relative hypochondriac mode by letting the fact of HIV rule and affect my life too much? Do I need to get a grip and just put HIV as out of the picture as possible? Have I let being poz become too much a part of who I am? Bottom line: when is it a valid concern and when is it an excuse?

Thanks for hearing me out.




BT65:
I guess there are some unanswered questions.  Are there things (or is there a thing) you still want to do you haven't done yet?  What are your actual physical limitations?  Disabilities?  What can you see yourself sustaining? 

I guess without really knowing you I don't know how to answer.  But, welcome!  Look forward to hearing more.

Betty

mitch777:
Welcome to the forums Moxie!

I ask myself many of the same questions. It's not easy and not even a good idea to forget our past. I doubt it would even be possible.
Attention and concern about long term affects with HIV comes with the territory. I had a pretty good run health wise but these past 8 years or so have gotten more challenging. Age plays a role but the combination of aging with long-term HIV can create some unexpected twists and turns. Got to take them as they come.

I don't see a downside in living in the moment. I'm not sure what you mean when you say "at what point does it hold me back". (in that paragraph)

Yes, personal finances and early career goals can be altered. Frustrating!! While I wasn't held back living my dream as far as work was concerned early on, my abilities went south hitting middle age much more than the norm. This changed my outlook on what retirement will look like. Not very secure although I still feel more fortunate than many. Guess expectations and reality don't always agree.

A valid concern or excuse? That's a tough one. I guess I just try to do my best along the way but still have concerns too. Not every day is a good day and my health plays a major role.

Thanks for the post! I'm sure many of us LTS can relate.

Glad you joined us! :)
m.





Buckmark:
Welcome, Moxie.  I was diagnosed about the same time you were.  I think that behaviors that served us back them don't always serve us well today.  Back there it was more about survival.  Coping with the deaths of so many friends.  Trying to have hope, when there were no viable medications.

While necessary at one time, these behaviors are very hard to un-learn when they outlive their usefulness.  There is no easy answer to the question of whether being poz is a valid reason, or an excuse.  The first step is becoming aware of your situation, your behaviors, and your decisions.  Only you can know if you feel you are holding yourself back.  But if you are asking the question, then I suspect there is something you want to change.

Regards,

Henry

em:
I agree, living like the end is near is how I felt for a long time. sometimes still do,
also felt that I missed allot of opportunities good health might have let my life been more fulfilling ?

Maybe someone will put together a movie story line from our experiences ? What we see as misfortune some one else might perceive  as overcoming adversity ?

Sorry just thought it might be worth kicking around ; I came here to post that idea but living like time is running out might be a good title ?

I m sure thrush shingles skin legions and other opportunistic infections are common with people who have been HIV positive for as long as we have been. I had been hospitalized a few times in the nineties with life threatening illnesses.

But living like time is running out < that says it all >

thank you

EM

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