more on the whiningsometimes I

more on the whining

sometimes I am not whining, I am merely informing, so that people around me know, please stand back, I am crabby and the reasons for crabbiness have nothing to do with them, it is all in my head. And if I'm succeeding at not being surly, at being nice to people, then they don't remember that my leg is killing me. Unless there is whining, or a status report, other people only notice "functioning" vs. "not functioning" - they don't notice "functioning and in pain" vs. "normal" vs. "in bed unable to do anything"

If I had to run away from a space alien in order to survive, I could, but that doesn't mean I want to crouch on the floor playing with blocks and beanie babies for one more second. Or just a pat on the back would help, like "good job being all noble and brave today, oh person who can barely walk and yet still forces herself to do everything!"

It is all about: just wanting the time to pass with as little physical awareness as possible.

I look at old marginally disabled people a lot and wish people would have more respect for them as they shuffle slowly and painfully around the grocery store or sit in some horrid uncomfortable folding chair. You ever notice people whose feet are so swollen they are stuffed into some old moccasin type shoes and yet still bulging out all around?

My ex used to be in awful pain but he would not talk about it at all ever. He would just try to work or sit and watch tv and refuse to leave the house for weeks and take a lot of extra steroids, never any asking me for anything or do anything for him, or trying to adapt, or doing anything to feel better like take a bath (partly because he was afraid of slipping in the tub, I think), no heating pad, tylenol or anything. just sit there and suffer and be a real bitch to me in the name of martyrdom and dignity.

I hate dignity! (as scraps the patchwork girl would say).

but i also hate being tedious to everyone around me

Comments

[Andrea Mankoski]

OK, this may go to nowhere seeing as it's been so long since you wrote this, but I just wanted to say how happy I am my pain scale made a difference in your life. I really feel like I've done something worthwhile with my own chronic pain experience, knowing I've helped other people. I hope you're feeling better now.

Andrea

[badgerbag]

Hey, wow. Hi Andrea! I was in a lot of chronic pain around 10-15 years ago. Now my health & my life are way, way better. But every once in a while (as in this group of blog entries) something goes awry and I get scared that my life will go back to how it used to be.

Your pain reporting scale was extremely useful then as a communication tool between me and other people (doctors for instance) but also for my own understanding of progress. When I started thinking of what I was experiencing on a clear spectrum of meaning, categorizing the level of pain, then I was able to think more clearly about how to adapt and respond. In other words how to change my behavior. And what to expect for my own functioning and how to pace my day.

It also functions to give people permission to think about the pain and validation of it as real. When I am in chronic pain I adapt by trying to block out awareness of it. This can result in continuing some behavior that makes the pain worse! Like sitting badly, or continuing to walk on a messed-up knee. It is a good survival strategy to "not think about the pain" or ignore your body as much as possible, but it can also be very destructive. So the pain scale was a good framework for thinking about it.

Writing down the pain level also gave me hope, since I could see that over time, my levels of pain were improving.

So, thanks very much for the useful tool! I know to some people this will sound overblown, but it was very important to my recovery from prolonged disability.