[Dakota]

I try to live the best life I can, given my PN pain. Everyday I do something in the morning for about 4 hours: housework, errands, volunteer work in my church office, or something like that. Then I come home at about 1:00 and change into somethng comfortable and lie down on my couch. I turn on the tv because that helps distract me from my pain, same for being on the laptop. I really don't feel well enough to do anything productive while lying down. Sometimes I nap, and that helps calm the pain. Usually I watch tv and read or something until very late, then fall asleep. This works for me okay. I do have a pretty good life in the mornings. I am not depressed.

But sometmes I feel guilty. Should I be pushing myself to live a "fuller, more normal" life? I go through times when I try to get out and do some type of exercise, but it always ends up with more pain than I can handle. Sometimes I feel like instead of trying to be a better, more "normal" person, I should just try to be the best "pain filled" person I am, and I think that this is it. Because in reality, I can't escape that I am a "pain person". I don't know. I am okay with how things are now. I can be nice to my husband because I can control my pain pretty well living like this. I wish I could do stuff with him, but in reality I can't -- activity causes more pain.

So who should we be? Should we struggle heroically to be the normal person we once were and that everyone thinks we are (I don't look sick, my friends don't realize how severe my pain is)? Or should we relax and accept and just try to be the best person that life has thrown at us, which is a "pain person" with limitations; for me should I be ashamed of my tv filled, couch potatoe lifestyle? Or happy and satisfied?

I guess a lot goes with how I was raised to be an achiever. And there is so much pressure from society for disabled people to be heroic and do heroic things. But pain is so different from being an amputee or even a paraplegic. It is really hard to figure out our place in the universe. Or at least it is for me.

I would be interested to know how others cope. Is my lifestyle bad? Should I change? If so, how? Any suggestions?