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2:39am April 17, 2013
For further reference. This is how I look with pain just barely barely below nine. It was nine a minute ago, I repositioned a bit and it dropped to just barely below. It was so much that I was scared of it. It was so much I almost didn’t make it from the bathroom back to bed. I had to drain my g tube, and then remember that standing didn’t actually make it worse. Before I drained the g tube it was outright impossible to stand. After it was barely possible. This is a problem, the way I look in this picture, because anyone who knows me can see it plain as day, but people unfamiliar with me, unfamiliar with people like me, just see a blank face. I’m glad I’m documenting this stuff because it may become useful some day, despite the fact that experiencing the pain necessary to document this stuff is hell on earth. It’s rare that I find pain that I can’t breathe and push myself through, but I found it a few minutes ago. I feel utterly terrible. Can’t even describe it. I think it’s some combination of gas, and my stomach and intestines moving around the hole and irritating the hell out of it. Right now this is an eight, its gone down since I started writing but just barely. (There’s a lot of territory inside eight. When I started writing I was at close to the highest eight possible. Right now I’m “merely” at a high eight, mid to low end of high. I don’t know how I come up with these numbers, but I’ve spent ages and ages and ages training myself on the pain scale and this is what I can say. At the hospital they’d give me pain meds and they’d try to claim my pain hadn’t changed at all if I gave them the same number twice, so I had to start telling them low medium and high for each number just so they would believe me when I said things they were doing for pain were actually working.) So when I took the picture I was pretty much on the border of eight and nine. I’d call nine enough pain to start experiencing severe disorientation or even unambiguous delirium. It’s possible to experience those things within eight too, it just depends on the “flavor” of eight. My doctor told me there’s probably nothing actually wrong with me. As in nothing to cause medical worry. But it’s hard not to be concerned about something going badly wrong when your pain is so bad you can’t make yourself move. I hate that most people can’t see actual pain when my face looks like this. To me it’s obvious. Just as obvious as it was on feliscorvus’s cat Coraline when she got surgery, not possible to point out exactly what part of her body and face showed it, but it was possible to see everywhere on her. Unfortunately a lot of people who have only seen pain in nondisabled people don’t know what it looks like in people with nonstandard brains. I’m pretty sure this is how I looked when webmuskie was telling everyone how much pain I was in, and being treated with outright scorn for pointing it out when I didn’t look like a nonautistic person in pain. The booklet I got from a conference presentation of pain management in people with developmental disabilities said it’s absolutely crucial for anyone with a communication impairment or nonstandard appearance and stuff, to have documentation of what they look and act like at different levels of pain. So when I’m taking pictures this is part of my documentation. It’s also crucial to have people around who know the person and can recognize when they’re in a lot of pain. It’s crucial not to ignore them as people were ignoring webmuskie right after my surgery. I am not sure, if my pain goes much above this, I’d even be able to take pictures and document everything. But I’m trying to do everything I can, because webmuskie may not always be there, people who know me but can’t always recognize my pain levels may need pictures to guide them, I need all the help I can get. There are also times when I show pain in exactly the ways anyone else does. Grimacing, shouting, etc. But often what happens is I start looking “more autistic”, my face goes more slack, my eyes go more glassy. I may make unusual sounds, without even knowing I’m making them. Sounds most people never make no matter how they are feeling. And I get more confused and disoriented, although a lot of people can’t tell when I’m confused or disoriented or measure how bad that is in the first place. I may look kind of scared or trapped, although I don’t know how other people can see that either. I also have internal signs I can read for extreme pain. Things other people can’t see. Like I keep thinking I’m in other places than I’m at. I get flashes of places I’ve never even necessarily seen before. If someone’s giving me an ice pack I may fleetingly think I am lying injured in the snow somewhere. A minute ago I thought I was in a green grassy field, just for a split second. I don’t know where these images come from, they just start kicking in at high eight low nine. Sometimes they are just for a second, sometimes they’re more persistent. It is like my brain glitches out and tries to tell me I’m somewhere else. Anyway this is about all I can write about this right now. I’m trying, anyway, to document things as they are happening so in the future it will get easier for other people to know the difference.

For further reference. This is how I look with pain just barely barely below nine. It was nine a minute ago, I repositioned a bit and it dropped to just barely below. It was so much that I was scared of it. It was so much I almost didn’t make it from the bathroom back to bed. I had to drain my g tube, and then remember that standing didn’t actually make it worse. Before I drained the g tube it was outright impossible to stand. After it was barely possible.

This is a problem, the way I look in this picture, because anyone who knows me can see it plain as day, but people unfamiliar with me, unfamiliar with people like me, just see a blank face. I’m glad I’m documenting this stuff because it may become useful some day, despite the fact that experiencing the pain necessary to document this stuff is hell on earth.

It’s rare that I find pain that I can’t breathe and push myself through, but I found it a few minutes ago. I feel utterly terrible. Can’t even describe it. I think it’s some combination of gas, and my stomach and intestines moving around the hole and irritating the hell out of it. Right now this is an eight, its gone down since I started writing but just barely.

(There’s a lot of territory inside eight. When I started writing I was at close to the highest eight possible. Right now I’m “merely” at a high eight, mid to low end of high. I don’t know how I come up with these numbers, but I’ve spent ages and ages and ages training myself on the pain scale and this is what I can say. At the hospital they’d give me pain meds and they’d try to claim my pain hadn’t changed at all if I gave them the same number twice, so I had to start telling them low medium and high for each number just so they would believe me when I said things they were doing for pain were actually working.)

So when I took the picture I was pretty much on the border of eight and nine. I’d call nine enough pain to start experiencing severe disorientation or even unambiguous delirium. It’s possible to experience those things within eight too, it just depends on the “flavor” of eight.

My doctor told me there’s probably nothing actually wrong with me. As in nothing to cause medical worry. But it’s hard not to be concerned about something going badly wrong when your pain is so bad you can’t make yourself move.

I hate that most people can’t see actual pain when my face looks like this. To me it’s obvious. Just as obvious as it was on feliscorvus’s cat Coraline when she got surgery, not possible to point out exactly what part of her body and face showed it, but it was possible to see everywhere on her. Unfortunately a lot of people who have only seen pain in nondisabled people don’t know what it looks like in people with nonstandard brains.

I’m pretty sure this is how I looked when webmuskie was telling everyone how much pain I was in, and being treated with outright scorn for pointing it out when I didn’t look like a nonautistic person in pain.

The booklet I got from a conference presentation of pain management in people with developmental disabilities said it’s absolutely crucial for anyone with a communication impairment or nonstandard appearance and stuff, to have documentation of what they look and act like at different levels of pain. So when I’m taking pictures this is part of my documentation. It’s also crucial to have people around who know the person and can recognize when they’re in a lot of pain. It’s crucial not to ignore them as people were ignoring webmuskie right after my surgery.

I am not sure, if my pain goes much above this, I’d even be able to take pictures and document everything. But I’m trying to do everything I can, because webmuskie may not always be there, people who know me but can’t always recognize my pain levels may need pictures to guide them, I need all the help I can get.

There are also times when I show pain in exactly the ways anyone else does. Grimacing, shouting, etc. But often what happens is I start looking “more autistic”, my face goes more slack, my eyes go more glassy. I may make unusual sounds, without even knowing I’m making them. Sounds most people never make no matter how they are feeling. And I get more confused and disoriented, although a lot of people can’t tell when I’m confused or disoriented or measure how bad that is in the first place. I may look kind of scared or trapped, although I don’t know how other people can see that either.

I also have internal signs I can read for extreme pain. Things other people can’t see. Like I keep thinking I’m in other places than I’m at. I get flashes of places I’ve never even necessarily seen before. If someone’s giving me an ice pack I may fleetingly think I am lying injured in the snow somewhere. A minute ago I thought I was in a green grassy field, just for a split second. I don’t know where these images come from, they just start kicking in at high eight low nine. Sometimes they are just for a second, sometimes they’re more persistent. It is like my brain glitches out and tries to tell me I’m somewhere else.

Anyway this is about all I can write about this right now. I’m trying, anyway, to document things as they are happening so in the future it will get easier for other people to know the difference.