2:22am March 11, 2013

Hospital pain isolation hell alone everywhere

Can’t even think. Pain surges into different body parts – crackling and burning, worse on any part touching the bed. I turn over and my arms and legs hurt with the effort, and now it’s the other side of my body that’s hurting now. I constantly shift my own position, make the front and back of the bed go up and down, or use pillows, but things only get worse.

But that’s not the only pain going on. My entire spine from my neck to my butt is on fire. Turning my head makes pain show up in my shoulders, arms, and even legs. On the right side of my neck, muscles spasm, and if things aren’t taken care of regularly (such as nerve blocks), spasms can travel down that arm. Cold IV fluids going up that arm sometimes trigger spasms.

My joints all hurt as well. They’ve hurt for years and only one possible reason has been found. It’s not arthritis. I learned to stop mentioning it until I was examined for joint hypermobility syndrome, which causes my joints to bend too far, causing more wear and tear on various parts of the joint. Like the time I picked up a book and sprained a finger into a permanently different shape. My joints all ache a lot though. And sometimes have such sharp pain I’ve had to wear braces and stuff. Sometimes my hands and feet feel like something inside is popping out of alignment, causing a sharp intense pain that only lasts until my embarrassment at having no current way to answer “What’s wrong?” Then there’s a dull but intense pain that lasts an hour or so.

Something about my legs makes it so that when I could walk better, ankle braces kept me (mostly) from feeling like fire or lightning was traveling up my legs when I walked or stood.

I have some kind of central or neuropathic pain. It causes pain all over my body that feels like burning and sometimes ice at the same time. It’s some of the most intense feeling pain I have ever had. It never goes away. Sometimes it’s worse in my arms and legs. Sometimes it’s worse in my stomach and intestines. It can take ordinary heartburn and make it feel like someone is pressing a sheet of metal onto my back, like a hot iron, or a cold so intense it burns.

I get plenty of pain in my digestive system on my own without the neuropathic pain. I get a lot of heartburn. I have a paralyzed stomach, called gastroparesis, and that causes all kinds of pain. Especially from gas and bloating. My stomach turns hard as a rock. I also get a lot of bowel blockages through severe constipation, and even the minor partial ones I can deal with at home get very painful.

If the gastroparesis has been making me throw up, or bronchiectasis plus lung infections or pneumonia have been making me cough, there’s lots of potential for pain. Coughing and throwing up can pull muscles in all sorts of locations. They can make all breathing hurt. They can bruise, dislocate, or break ribs.

And for some reason, for me, breathing often hurts a lot all on its own. So do a lot of other normal everyday activities. Chewing. Swallowing. Having stuff go down the esophagus. Touching anything, even clothing or bed sheets. Being bathed. Moving any body part. Sitting or lying on anything other than thick memory foam, gel, or aan equivalent.

I have specific locations for nerve pain as well. I have trigeminal neuralgia, which causes intense pain on one side of my face. Sometimes it’s intense background pain. Sometimes it feels like lightning traveling down my face. Eye movement, cold air, and touching certain parts of my face trigger it.

This isn’t an exhaustive list of the kinds of pain I experience. It’s just an explanation of why, away from my bed at home, and unabletv to swallow my Lyrica and Trileptal or take them IV, my pain level quickly skyrockets to something unendurable.

But as I lie there, with every move I make an attempt to deal withe the pain, every move my brain makes is an attempt at denial. The bed is just uncomfortable. The writhing and moaning or screaming? Maybe a med reaction. I begin to wonder why only I and a small number of other patients I know of, are making noise because of pain. While other people are relaxed, holding conversations, smiling and being sweet for everyone. I can’t. I just can’t. And it burns me up that whatever my intent I can’t be a pleasant sort of patient. I feel like I must be weak and weakness is bad.

Delirium always accompanies pain for me, so at minimum my thinking gets foggy and at maximum I get hallucinations. It feels like my mind jumps off cliffs. If I can cling to the cliff I can think a little. But if I jump off I end up in a weird repeating place of things I either don’t remember, or remember only bizarre visual hallucinations.

Meanwhile the pain is still there. What pain depends on why I’m in the hospital and other factors of how my life is going right then. If treated, sometimes the delirium vanishes when the pain does.

Communication with others becomes hard. Even typing in my iPod Touch or iPad seems to hurt like hell and every letter is a strain. So it’s hard to say anything even if I hit the call bell.

They always want to know things about the pain. I can’t tell them. It is so many things. And the pain affects my cognition. And I hate the pain scale because the levels between 8 and 10 are this gigantic landscape that dwarfs the rest of the scale. And I often want to refuse pain meds because of nausea, when it would be better for me to take them and chance the nausea. Plus people get annoyed you used the call bell even for a legit request, and are impatient with a slow communicator. Sometimes they try to force me into yes/no questions just to speed me up when the world doesn’t work that way.

And so I lie there. In so much pain every second is torture. I’m not exaggerating right now. Hell, I’m leaving things out. And when I can think, I find half-assed ways to rationalize it to myself.

“The hospital is so busy. To them I’m not a person. I’m a bed. If I act like an unperson, maybe other patients will get the treatment they need without me slowing them down. If I’m an unperson, this pain doesn’t exist, it only belongs to a person who isn’t real. I’m not real anymore. I don’t matter like the good patients matter.”

And on like that. I survive those situations only by happening to exist long enough to last through them. I go without most of the pain meds I’m allowed to have. I twist my brain into knots. I cry myself to sleep. And I can say nothing for it other than it’s miserable.

I finally told my DPA about all this. She hadn’t realized quite how bad it had gotten. She has done her best to make sure I get truly good pain management in there.

I still have nightmares about it. Of lying there too weak to turn while the bed digs into me. And believing I was somehow being the best patient I could be, by never using my call button even if I couldn’t stop myself crying or throwing up or screaming or moaning or thrashing or writhing c or whatever. Like the best I could give them was not complaining while my body complained every second of the day without my consent. It’s so stupid and I do it every time.

It also scares me. To ever be in that much pain again. I can remember during one of my blockages lying there semi-delirious and wishing I could die. And I am not prone to depression these days. Those thoughts just happen. We don’t always act on or even discuss them but they happen. Trigeminal neuralgia was even nicknamed the suicide disease, before treatments became available. I don’t of course want to die for real, but it’s a thought people have when they feel like they have no options.

I can’t get the feeling out of my head. I think someone might have been right when they suggested PTSD flashbacks. An additional element of helplessness here is that at the hospital they always move my wheelchair into the hall, and in hospitals I’m always too weak to wall that far. So I’m literally trapped in the bed when this is going on. Something true of some but not all patients.

And I’m somehow sure I’m not the only person. It’s such a lonely existence but in a hospital you’re surrounded by dozens of people it might be true of. At times they even isolate you further – move roommates who don’t want to hear the moaning, they are very considerate of the effect you’re having on other people, but not necessarily so considerate that you are a person even when you can’t communicate because of pain.

Some people are wonderful of course. Some nurses can work wonders with pillows and dry heat and stuff. But most often, pain with accompanying delirium has turned me into an undesirable person. The kind they mutter rude things under their breaths about because they think you’d never understand. Most nurses of course are between the best and the worst, and most of all, busy and understaffed. So even some very good ones will at times ignore you as an unperson because the system forces them to view you by how easy you are to treat.

And that’s how you get the horrible isolation of level 9-10 pain, delirium, and being seen as nothing more than a lump of flesh connected to an IV pole that needs changing at times. All other requests take 45 minutes from the time of hitting the call bell. So if you can’t sit up that long waiting for help wiping your butt, go to bed unwiped and develop a fungal infection around that area. Which itches terribly but you can’t do anything about it. Which is just one more crappy thing about being there.

I’m not writing this to whine. I’m writing this to give some idea what our wonderful modern hospital system can be like to someone with chronic pain and multiple disabilities and chronic illnesses. I want people to know because I want a way to do something about it. Not just for me but for others. I am always aware of it in others while I’m there and I know it’s just as bad or worse. I can’t stand it. Even when I’m gone, it’s like a kind of pain I carry around with me everywhere with the knowledge of all the people it’s happening to all over the world, from the best hospitals to the worst.

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