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Heh, i was way too tired to type yesterday. i went to bed really early, and slept pretty well until dad's snoring woke me up. I’ve been trying to listen to some of my audiobooks, but I keep falling asleep. The tracks are about 45 minutes long, and though I love my sandisk player, if there’s a way to fast-forward to the middle of a track, I haven’t found it. Huge pain in the ass. Some of the functions on this thing are so not self-explanatory. It took me half a day to figure out how to turn up the volume, for instance. And though CP might tell you different, I’m not all that bad with electronics.
Anyway, back to the program. There’s a lot of emphasis being put on eliminating what they call ‘pain behaviors’. That basically refers to any behavior in which one engages in response to, or anticipation of, pain. Wincing, limping, hunching, groaning, screaming, crying, sighing, rubbing the affected areas, gritting one’s teeth and so on and so forth.
There’s sometimes a fine line between what’s a pain behavior and what isn’t. for example, if you go to the theater to see a film, and in the middle you stand up to go lean against the wall because sitting makes your back hurt, that’s a pain behavior. But, if you get up in the middle to go get some popcorn or use the loo, that’s not a pain behavior. It’s mostly a psychological distinction. Like, grimacing because something’s distasteful as opposed to grimacing because your knee is throbbing.
So, they want us to get rid of all these behaviors, because they contribute to pain having control of our lives. A lot of these behaviors are instinctual, so it’ll take a lot of re-training. The behaviors are not harmful to people who don’t have chronic pain, because they’re reactions to a pain that goes away—they’re still in control of their own lives. But since our pain never goes away, in order to live with it and regain control, we have to eliminate pain’s ‘voice’ in our lives. Hopefully I’m explaining this correctly.
Another thing we have to learn how to do is to eliminate pain from our daily vocabulary. This is where dealing with other people, family and friends mostly, comes into play. People’s normal response to a loved one being in pain is generally either solicitous (oh, you look like you’re in so much pain! Can I get you something? You just lie down and rest; I’ll take care of everything), or punitive (You need to learn how to deal with that pain; I can’t always be doing everything for you. You’re not a baby). Often one leads to the other. Because being solicitous doesn’t produce any results, people get frustrated and turn punitive. Then they feel guilty and start being solicitous again, and on and on.
Research shows that neither solicitous nor punitive responses are helpful to the chronic pain patient in any way, shape or form, because both responses are focused on pain, and therefore give pain control. So what Mayo is advocating is a ‘neutral response’, which is basically that when you can tell your loved one is in pain, start talking about something else entirely. Maybe about some plans for the evening or weekend, or some subject that interests the person in pain, something like that. That may sound cold (can’t you see I’m in pain here? Don’t you even care?), but what it is meant to do is to distract the person from their pain and help them relegate it to the background. It’s all about regaining control over your life and self, including getting off medications that detract from your personality, as well as not being helpful or even being harmful.
To that latter effect, they are going to begin tapering my narcotics on Monday. I’m extremely apprehensive about it; nearly everyone I’ve spoken to says that’s the worst part. I’m also on a schedule that is meant to eliminate the use of a wheelchair from my daily life. The cane I will probably have to keep using, but it would be great to only have to use the wheelchair for, like, trips to busch gardens, or even not to have to use it at all. It’s hard to say what I’ll be capable of.
This program isn’t meant to cure anyone; they stress that a lot. It’s meant to give you what you need in order to live with the pain without having it control you.
Everyone here is so positive and encouraging and supportive. It’s really, really annoying. I do not like being complimented all the time. It makes me angry. But I don’t suppose they’ll stop doing it anytime soon.
Today, which is now Sunday, dad wheeled me over to the Rochester Art Center, which is something like a gallery. There was an exhibit of Roman Signer’s work. He did some really nice, precise sketches and a couple of installations, a few sculptures. He’s quite an engineer, although some of his pieces I would much rather have seen him putting together than just getting the finished product. Like, he had this remote-controlled helicopter that flew in circles around a giant square of plywood, with blue spraycans attached that marked out its course. Only, we didn’t get to see that in action, just a little helicopter sitting on plywood next to a bunch of big blue spraypainted circles. But, it’s his art, I guess. The Center had some art supplies that were amazingly cheap, so I snagged a bunch of them.
Then we had lunch at a Dutch restaurant called Pannekoeken, where we ate one of the restaurant’s namesakes. It was okay; fresh ingredients cooked well, but not really seasoned at all. I fell in love with this sweet, smoky sausage called wattwurst, I think. Sweet and smoky. Really nice flavor. I’d go back there just for that.
I also got a few postcards, so if any of you would like one, I’ll send one if you send your address to fieryredqueen76@yahoo.com, since all my addresses are back home—this is typed on dad’s new laptop. Ratso, I need yours, at least, since I bought you a little present, and [Bad username: ”nekojita”], I’d like to send you one since you’ve sent me so many nice things.
Well, I’d better put this up since it’s already Sunday and I still haven’t. I got really ill yesterday, throwing up and all that, so I couldn’t finish. I’m not even in a different country and the food got to me.
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fieryredqueen's journal
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