7:47am March 13, 2013

➸ my two cents (or more): youneedacat: twocentsormore: Sometimes I feel really shitty when I see...

twocentsormore:

Sometimes I feel really shitty when I see other people my age who have full-time jobs or who held down full-time jobs while taking huge class loads even before they got a degree or whatever.

Sometimes it helps me to say “Making sense of my sensory input…

[Post contains descriptions of hospital stuff, including invasive procedures, bodily functions, and other unpleasant stuff. Read at your own risk.]

For some reason what always makes me feel like I ought to be inspirational is the hospital. I always wish I could be one of those people who smiles the whole time. But there’s only one hospital stay in my entire life (a week in a cardiac ward) where I could have even half pulled that off.

But then I think of my typical first few hospital days. Generally I arrive puking my guts out. I become painfully dehydrated. I keep puking long after there’s anything to puke up. I’m immediately switched from my oral set of meds to my IV set of meds — often totally different meds due to what an IV can process. I need IV meds every two or three hours but soon my IV starts blowing out. Then I miss my meds until the IV nurse can come. Then I miss more meds until they realize I need a PICC line. The IV is painful as it fails one by one. The PICC is monster sized painful when your ideal veins are tiny and deep.

Meanwhile the switch from oral to IV, and from IV to being late on my meds constantly due to IVs failing, creates all kinds of chemical mayhem that wreaks havoc with pain, mood, delirium (which feels like my brain is ripped to shreds along deep lines), nausea, and everything else that can go wrong. Meanwhile they may be doing invasive shit — will never forget the tube down my nose and up my butt in the same day, body horror for any autistic person with severe sensory issues. Meanwhile speaking of sensory issues, usually there’s a roommate with sounds of TV and talking, smells of food, everything to exacerbate pain and nausea that could possibly happen. And I’ve often got things stuck into my body that every instinct tells me to pull out and take off running, but of course I’m usually so weak that transferring from bed to a commode becomes difficult, so running down the hall screaming is out.

Meanwhile, severe illness triggers two opposing instincts in me. One tells me to isolate myself and tell everyone to get out. Which makes it hard to get witnesses to poor treatment in hospitals. The other tells me to get my closest friends (substitute for family, I think) to stay with me. Problem is due to disability and poverty and distance, they often don’t arrive until my third day or later. So I’m also in addition to everything else, desperately lonely in a way that I never experience except when very ill.

So I’m usually weak, exhausted, in the most severe pain I ever experience, nauseated, terrified, confused, hallucinating, disoriented, seizing, isolated, and lonely. And yet I’m beating myself up for not being able to send my family smiling cutesy pictures of me beside my IV pole or something, with inspirational messages tacked on, all designed to keep them from worrying too much. And I don’t want my family to worry. But I’m not capable of superhuman feats of cheeriness, either. Especially not at the lowest points of my health.

I do suspect this has something to do with how I’m treated as a patient, too. Sometimes I luck out and get people who understand I can’t perform for them. But other times… I feel like my pain and nausea turns them off really badly. Hell once my severe nausea resulted in them evacuating my roommates, shutting the door, and ignoring me entirely as I threw up more and more, became weaker, and entered the most severe delirium of my life. I was too out of it to notice, but my friend suspected something and sent down her staff person, one who was knowledgeable about how hospitals truly work. After seeing what they had done to me, and how bad I was doing, she opened my door every time they tried to close it, and then yelled at the top if her lungs, “IF SHE DIES IN THERE, I WILL BRING EVERY LAWYER IN THIS CITY IN HERE!” Suddenly I was transferred to a better ward and got better treatment and finally a gastroparesis diagnosis, instead of them basically hoping I’d starve to death and be off their hands.

Unfortunately (or fortunately) I barely remember the incident because delirium. But I remember how terrible my body felt and how nobody came to help. And how as I became weaker and weaker, all they cared about was how I’d maybe get too used to things like shitting the bed and want to do it all the time. (I’m not kidding. I was too weak to get up and all they thought was I might regress and enjoy regression and never learn to use a toilet again. When I’ve always used toilets to my maximum ability. Like everyone else. My maximum ability isn’t everyone else’s. Hence Depends. But shitting the bed is really unpleasant and I only would ever do it if I lacked options.)

This is how many health care professionals view DD people — as if we are just ready to lose as many abilities as we can and need to be pushed to perform more and more, rather than anyone asking why we are so sick we can’t even wait for a bedpan or sit on a bedside commode. This happens to us all the time in the DD system and hospital people often view us just the same. It boggles the mind. People with this frame of mind usually try to pressure us, at our sickest, to perform in ways we couldn’t perform at our most healthy.

Meanwhile I have such bad PTSD from hospitals that… it always happens like this. I’m too busy getting admitted to think about anything, and I feel horrible but not panicked. But then sometime my second or third day I get the panic attack to end all panic attacks. Always out of nowhere when I least expect it. So then I have to wait for the nurse to administer anxiety meds every four hours to keep me from completely wigging out. I always do fine going off them when I leave, I never need them at home, it’s just a weird hospital thing where I can’t function without them.

So basically I’m in there. I’m sick. I’m miserable. I’m delirious, which means half the time I seem to be slipping outside of reality and thought and stuff. I’m nauseated and may have been vomiting for days. I’m usually so sick that I’ve gone into a horrible downward spiral that could be life threatening without treatment, and sometimes even with treatment. I’m terrified of what people will do to me. I’m in so much pain that I can’t function. I’m weaker than I ever am outside of the hospital. And somehow I expect myself to do the whole cheesy inspirational act. I couldn’t do the act within a million years. But I expect myself to do it. Even as I can’t really do more than lie there writhing and moaning and possibly even screaming or yelping if I’m up to it. Even at my worst. If I can think enough to think the thought at all, I will be berating myself for not being cheerful and inspirational.

I asked a friend about all this after my last hospital stay. And she said that I shouldn’t even compare myself to people who can pull that off. And that people who pull that off aren’t me, don’t have my life experiences, may not have the exact combination of stuff that makes stuff that nasty even if they’re technically sicker, and that a lot of that stuff is staged — for one moment, one picture, one little video, and then they go back to being just like I am. Staged for an outside world that really doesn’t want to deal with the reality of illness and death and their own mortality and vulnerability. And then they might go back to being really out of it or moaning and writhing even more than I do. I guess it makes sense, but I get caught up in why can’t I be that image, why do I have to talk about it all as it actually is most of the time, why do I have to be so depressing when I talk about this stuff, instead of minimizing how bad things can be.

I don’t know. I don’t have answers. I just know there has to be something important in the way I do things too. Something important in telling people what happens when you… aren’t the model patient and aren’t perfect and can’t do all that wonderful smiling through the misery stuff that some people seem to manage. I know I’ve been writing a lot about this lately, and I feel bad about even doing that, like I’m doing something wrong by repeatedly telling stories about what it is really like for a lot of people. Because something in me says that what happens to me is really damn common. I’ve even read accounts by doctors of how they view and treat people who they consider too bad or out of it or something to matter. And it’s obscene.

I really did get treated better this time around. Because it was my regular doctor who was working there. And the nurses were for the most part pretty good. But even then. Even then it was a really horrible experience that has made me so drained that I and some of my friends are a little frightened by it. I’m working on another post about that. But for right now, there’s this post. I’m not trying to act like I’m miserable all the time. I’m not. I’m actually surprisingly happy. But in the hospital I am usually miserable and there are usually actual reasons for it. I also saw people whose pain turned into extreme grouchiness, and they weren’t treated well either. I wasn’t usually grouchy, just utterly miserable, but people didn’t like that either. They wanted something only a few people are able to pull off.

Oh and I’m talking specifically about people who are there for things… I’m not sure how to describe the difference. But basically things that are complicated, painful, nauseating, difficult, and usually longer than a day or two. That’s why my stay in the cardiac ward was okay, I was just there for observation after a really fast heart rate happened, and the only real problem I had was boredom. That’s totally different than coming in with pneumonia and severe undiagnosed gastroparesis at once, or bowel blockages, or any of the rest of the things I usually come in for. I’m usually on wards with other people with really complicated problems, including some people who are dying there. Usually my roommate is a disabled or elderly person with the same type of laundry list of diagnoses I have — a zillion things at once interacting in bad ways. Like this time my first roommate had MS, COPD, and pneumonia at the same time. Another time my roommate had a severe blood disorder and was just coming out of the ICU, had a colostomy, and couldn’t move on her own except minimally. Another roommate had a huge list of cognitive and physical impairments and chronic illnesses. Other times its elderly people whose bodies are beginning to fall apart and cause painful bone fractures and other things like that, who end up in rehab after they leave the hospital. It’s rarely someone who just had a simple surgery or something. They must separate us by wards or something.

I don’t know how it all works out, but I just know my doctor and I no longer plan that I won’t go in the hospital, we just plan that we will do things differently the next visit and maybe then things will be better. That’s a really scary place to come to psychologically is knowing that its just too easy to end up there and there’s not a lot I can do about it. I’m still kind of emotionally coming to terms with all this, which is probably why I keep writing about it. I keep feeling bad for writing about it. But I seem to deal with things by writing about them. So what else can I do?!

Notes: