7:20am October 25, 2012

It’s hard to understand

Why I’ve spent the last hour crying.

I’m not depressed. This is different. It’s definitely tied to a lot of nasty experiences I’ve had recently. Mostly related to delirium.

But it’s also related to other people.

How to change things so fewer people will experience these things.

I have ideas. But they’re in my head. Not in my writing. Not yet.

Afraid of so many things. Like usual. But more.

My impulse control is shot. Apparently that’s a feature of some of the ways I just lived for over a month.

This isn’t going to suddenly go away just because I got out. There’s so many things going on. There’s delirium, reactions to new meds, the fact that not only was what I experienced traumatic, but the content of my delirium was heavily influenced by PTSD for a stretch of time, and I’m adjusting to an entirely different way of relating to food, while fending off people who think they know all about my situation and what’s best for me, and trying to reintegrate myself into a life I barely remember. And lots more.

I mean… it’s not like I went to the hospital and got home cured and everything is over and pretend it didn’t happen almost. I could do that for shorter stays with more acute problems. This is different.

I can’t explain. I mean I try. I don’t remember before I got to the hospital. I barely remember getting there. The size of the world shifts on an hourly basis. Often I pretend to know what’s going on. And the meetings damn the meetings. Where I keep having to pull my DPA into it because I can’t afford to pretend. Pretending keeps things smooth and keeps people from getting scared or uncomfortable when I don’t know who I am or where I am or who they are. Someone jokingly – jokingly – told me as long as I know who I am it’s fine. “But I don’t always…” But she thought that was a joke. Or figurative – like adolescent identity trouble. And it’s fucking not. It’s totally different. It’s when the known parts of the world shrink and shrink and shrink… and I’m no longer one of the known parts.

I’m apparently getting better but my memory is too shot to see it. I can’t compare things easily.

It seems easier for people to pretend every damn thing isn’t happening.

My service agency assumed all the new nausea meds were temporary. Therefore they needed no long term plan. I’m getting the fallout of the no long term plan.

People keep acting like the doctors in the hospital should have gotten me on real food. Actually the doctors could have got me out of there faster if they’d realized faster the severity of the gastroparesis. Instead they wasted a ton of time and worsened my delirium, trying to find ways to force my stomach to accept… Not a nutritionally balanced diet, but… Toast, stuff like that.

And the delirium isn’t there, in their minds, unless I bring it up. And then when I do, it’s inconvenient, or something.

But really. I want to change things. In big ways. I don’t know how many people in my position have tried. But I’m going to try.

I listened to a delirious woman who was disoriented, dying, and terrified, a few hospital stays ago. She had nobody to sit with her, no relatives or friends. And that’s wrong on such an intense level something has to be done. I’m sure plenty of other patients would have gladly sat with her but that’s not what hospitals let us do as patients. And I say other patients because being forced apart is part of the horrible thing about hospitals, that hurts patients.

And I feel compelled to do something about delirium in particular because having experienced it many times in many forms and now in this past form… it’s hideous but it doesn’t have to be as hideous as it is. There are ways to lessen it. And if hospitals don’t make it protocol on ALL wards to detect and fight it, they’re condemning people to what is usually but not always hellish and painful because they’re lazy. And that isn’t acceptable to me. Plus you need more than protocols. You need human contact.

And I think anyone who’s been through prolonged delirium without human contact, would understand and want to provide that contact for others that we didn’t get. I didn’t always want people around. When I’m very nauseated I tend to want everyone gone.

But one time, my friend was there. And the world disappeared. And she held my hand. And my hand and her hand became the only part of the world that didn’t vanish. She told me later she saw on my face that everything had gone away. But I kept grabbing her hand to make sure it was still real. And I wasn’t totally lost.

And how could I not want to do that for other people? I remember nights she sat up late with me online or in person. And when that personal contact disappeared, orientation to the world around me disappeared, and there would be hours of terror and confusion before I could sleep. Night is the worst because fewer stimuli in the dark. Sometimes I could go from nowhere to perfectly aware just from a light flipping on.

And then there were the very worst parts. Extreme pain, extreme nausea, extreme hallucinating, extreme confusion, extreme illness, day and night with almost no break or change, only the people who came in to dispense meds. I don’t remember how long that went but it was bad. They really seemed to think that all I was was a body with pneumonia and that the rest of these things were unimportant.

I remember my DPA telling me almost laughingly. How in the first days I didn’t seem afraid of dying in general, but was very upset that I might die because of some utterly stupid oversight. (Too many to list. Obviously I lived. But fuck. Other people in that position haven’t, I know it in my bones. You don’t overlook neuromuscular disease and bronchiectasis and several weeks of barely eating and severe nausea when you treat pneumonia. You especially don’t overlook how all these combine to create weakness of a degree that makes aspiration likely, and every uncontrolled retch leaves those muscles that much weaker. I ended up devising ingenious positions in my bed to avoid aspiration, while almost too weak to maneuver, and with a brain that was cutting me out of conscious awareness for hours at a time.)

All these things and more.

Mind you nurses are amazing. Really. They do most of the real work, and most of them do the best they can. A few go above and beyond. A few suck donkey balls. Most are good at what they do. But without official protocols and stuff there are limits to what they can do. And I still think many of these things – the ones involving the most human connection – are better done by people who aren’t being paid to do it. I did find I got better care if I sympathized with them about long shifts and understaffing and lots of call bells and stuff, because that meant I was connecting with them as humans and they were more likely to see me as human. I saw my mom doing that when she stayed there with me after surgery, so I decided to try it and it made both me and the nurses feel better. So it’s not that human contact can’t be made within a professional relationship. But … I’d still rather whoever is in there holding my hand when I’m confused is there because they want to be. It makes a difference.

All these things. Are why I feel like I have to do something. I haven’t figured out how. But barring total incapacitation I will do my best. Because something has got to change. I’ve seen too much needless suffering and death at that place. I’m sure others have too. And this last visit pushed me past some sort of “We don’t have to just take things how they are now and act like they should stay that way” point.

Well I’m not crying anymore. I’m tired. Really tired. And kind of fogging out. And pain levels not good. Well I didn’t come home well, I just came home without pneumonia. There’s a difference. As for gastroparesis I’ve had it for years, and it’s been getting slowly worse. It didn’t suddenly appear. It won’t suddenly disappear. I seem like one of a few people with a handle on that bit of reality. I feel like I need something to prop up my eyelids, even though I doubt I could sleep. It’s just one of those nights. Mornings. Whatever it is. I’m really tired though and I hope I can sleep because … It will be bad if I can’t. Better send this while I still remember what I’m writing about. Don’t know how I got this exhausted anyway. Didn’t do anything.

11 notes