What a wonderful thread, thanx everybody
I don't handle the loss of control very gracefuly either. I am basically selfish, greedy and I want it all _now_. Kinda like a 4 year old in a grown up body * lol *
When my mom turned 86 she decided she was tired of taking care of herself and found a nice "Assisted living" community and checked herself in. She then proceeded to teach the aerobics class, call bingo and organize pinnocle tournaments. She gave up cooking for herself, cleaning house, the yard and used that time to reach out to others. She's 95 now, and still going strong.
I have a choice with my disease. I can check myself into a hospice, take a bunch of meds and extend my life to the max. The other choice is to take a different set of meds, feel wonderful and have a productive, exciting life for a couple years. Neither extreme works for me. What I'm doing is finding a balance. Take just enough hi-power meds to allow me to have a simple desk job, and be able to go to meetings and work my program with other people.
Yesterday I felt awful. Took all my meds but I was still miserable. I asked my g/f to do me a favor and drive me to the local AA picnic, which she did. I sat out by the grills under an awning and had a wonderful time chit-chatting with friends. I didn't partake in any of the activities, I was just way too sick, but I had a wonderful time anyways. I am taking more of the hi-power meds than my doc want me to, but I've told them that quality of life is far more beneficial to me than meds.
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Originally Posted by 51anna  ...but I know there is really little to do. |
That's what the docs tell me about my autonomic neuropathy. They have a handy little chart that shows how long people live with this disease. The longest anybody has ever made it is 10years. With my symptoms, my numbers in various tests, I fall on the _zero years_ part of the chart. None. Zip. Nada. Per all the medical knowledge I should not be alive with the kind of numbers I'm getting. Never mind working, going to meets and giving hugs and kisses to my g/f
There is a _lot_ I can do. I constantly get my docs to help me experiment with my meds. Try and find the lowest possible dose that will maintain a decent quality of life and not kill me from the side effects. I take hydrocodone for the pain, exactly as prescribed, keep a log on the kitchen counter to keep me honest and let my sponsor know exactly what's going on. I read up on the web all about my disease and the meds I take, so I know what to expect and how to deal with it. I ask people to help me all the time, have them give me rides to places and help clean my house. Yeah, my ego doesn't care for that, but it helps me maintain my quality of life. I'm sponsoring a guy who's sicker than me, and keep in touch with another guy who's also way worse off. When I'm too sick to go out, I hang around here on SR and see of what use I can be.
Yeah, it hurts _all_ the time. I _never_ feel good. My stomach and bowels are messed up, I can hardly eat anything, my blood pressure rollercoasters all day long, I can't sleep without meds and I can't get out of the bed without meds. Been hospitalized in ICU seven times in the last three years. I can barely work, got medical bill coming out my ears and it's only going to get _worse_.
Big deal. I can hear the laughter of my friends when I say a silly joke, feel the wind thru the trees in the yard between the apartment buildings, enjoy the company of nice people at my meets, and chit-chat with fine friends here on SR. My health sucks, but _life_ is wonderful. As bad as I feel it is still so much better than being dead.
There _is_ a lot I can do to make my life as enjoyable as possible. Like the alanoid who's coming over in a few to give me a massage. She is oh so expensive but oh so worth it.
Mike