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In Remembrance
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Join Date: Aug 2006
Posts: 1,002
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In Remembrance
Join Date: Aug 2006
Posts: 1,002
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Pain
Sometimes people post or PM me, "is there any work you can do with your TOS?"
I take it as a compliment, that they mean I still have something to give. But how can I do ANYTHING when most of the time I'm in such high pain?
I think most people haven't really "gotten" how (my) pain works - it isn't on a schedule, in fact, I can't be dependable for ANYTHING, not even a phone call once a week. (Half of my weekly phone call therapy was to reschedule the call...) I can't do this support board for more than a few minutes - then I have to take a break on the couch. Sometimes, my pain is so high, I can't tolerate even looking at the forum. Almost all of the time, my pain is too high to tolerate a phone conversation. I don't enjoy food anymore - and seldom is there anything that truly distracts me from the pain. Do I laugh? Sure, but there are also plenty of times when I can't talk, because of the pain...like I used to say, I need a Tshirt that says:
"I am in high pain. Don't take it personally."
And the pain is totally debilitating most of the time for me. It is so high, so strong, so pervasive that it is all I can do to lay on the bed and keep from crying, screaming, moaning or complaining...
Since '02, none of my pain meds has ever relieved the pain completely, or even 50%. And that's with the strongest drugs available. Even in the ER.
I can't even remember what it was like not to have this pain, anymore.
And whether it's my mom, doctor or friends or family or old coworkers, no one except other TOSers and my fiance ever have understood how bad this pain has been.
Just fyi.
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