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(from comments elsewhere)
1. I find I am already inventing hope for myself. I could have what he says I have and I could go into totally spontaneous miraculous remission. I could have what he says I have and medical science could learn what to do with it. I could have something different from what he says I have. On some level I realize this is illogical; what's the name of that river in Egypt? On another level I realize it is essential. Reality-based? Me? Not when I can't afford to be.
2. I deeply value being an independent, self-sufficient person. Nobody tells you, when you get a diagnosis like this, that the hardest part isn't learning how to make all the endless frustrating/painful/expensive/inefficient accommodations in your daily life; the hardest part may not even be giving up about seventy percent of the activities you once loved; the hardest part is convincing yourself that your core values are no longer sustainable and must be jettisoned.
I'm realizing now how unutterably spoiled I have been, to be able to have "being an independent, self-sufficient person" as a deeply-held value. (Perhaps the same could be said of having "not being in denial" as a strong value.) Really, mind-bogglingly spoiled.*
Obviously I'm still working through this in a psychological sense. Perhaps my record of this process can eventually help someone else who is in a similar situation some day. Plus it helps vent my spleen, which is worth a lot.
3. I called my sister the other day, for her birthday. It was a couple hours after my diagnosis. She asked how my feet were and I just said same-same and dropped it. I mean, it was HER birthday, not CJ's whinefestday! But now I feel like I'm hiding something. Maybe I'll send a family e-mail this weekend.
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* Can you imagine? I used to whine about curable things.
1. I find I am already inventing hope for myself. I could have what he says I have and I could go into totally spontaneous miraculous remission. I could have what he says I have and medical science could learn what to do with it. I could have something different from what he says I have. On some level I realize this is illogical; what's the name of that river in Egypt? On another level I realize it is essential. Reality-based? Me? Not when I can't afford to be.
2. I deeply value being an independent, self-sufficient person. Nobody tells you, when you get a diagnosis like this, that the hardest part isn't learning how to make all the endless frustrating/painful/expensive/inefficient accommodations in your daily life; the hardest part may not even be giving up about seventy percent of the activities you once loved; the hardest part is convincing yourself that your core values are no longer sustainable and must be jettisoned.
I'm realizing now how unutterably spoiled I have been, to be able to have "being an independent, self-sufficient person" as a deeply-held value. (Perhaps the same could be said of having "not being in denial" as a strong value.) Really, mind-bogglingly spoiled.*
Obviously I'm still working through this in a psychological sense. Perhaps my record of this process can eventually help someone else who is in a similar situation some day. Plus it helps vent my spleen, which is worth a lot.
3. I called my sister the other day, for her birthday. It was a couple hours after my diagnosis. She asked how my feet were and I just said same-same and dropped it. I mean, it was HER birthday, not CJ's whinefestday! But now I feel like I'm hiding something. Maybe I'll send a family e-mail this weekend.
____________________________________
* Can you imagine? I used to whine about curable things.
no subject
I was very athletic as a kid, teen, and young adult. I had my first knee reconstruction at 16. They fixed my ACL and some torn cartilege. About 20 months later, I shattered the kneecap in the same knee. My doctor, who was Florida State's orthopedic surgeon, said it was a "one in a million" accident. My kneecap split into three big pieces and a bunch of little slivers. They couldn't fix it arthroscopically, so they had to cut my knee open. I've got two screws holding the three big pieces of the kneecap together. The slivers were all removed and so most of the cartilege. The doctor told me at the time that if I'd been 25 instead of 18, he'd have done a knee replacement, but he couldn't do that to an 18 year old. He told me I'd probably have to have it replaced by the time I'm 40. I just turned 35. I was fine for about 4 years after the surgery. But the knee started degrading. I dislocated it a couple of times. The whole system was weakened so much by the injuries and surgeries that I'm prone to that now. I had to give up sports entirely. Over the last ten years, I've had to give up more and more things. I've got arthritis in both knees. There's kind of a constant background pain that I've almost grown used to. I still think of myself as the fit, healthy, guy I was most of my life. It's only when I see myself in the mirror that I'm reminded that I'm not that guy anymore. I have trouble sometimes with stairs and steps. I sometimes have to rely on other people to do things for me. I also have asthma. I got that diagnosis about five years ago. Between the knee and the asthma, the hope of ever having an active lifestyle again is pretty much out the window. As my knee continues to degrade, I'm starting to think really seriously about the possibility that I've got a painful joint replacement surgery and rehab on the horizon.
Not that I meant to turn this into a pity party for me.
A have a friend who has had fibromyalgia for about seven or eight years. Within about ten minutes of reading your post, she also posted something similar. She doesn't talk about her illness a lot, but I was struck by some of the similarities in what the two of you were writing, especially about being spoiled. She gave me permission to share that with you if you're interested in seeing it.