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7:54pm February 26, 2013

Fuuuuuuuck.

This is really hard harder than I expected.

For one thing I am more exhausted than I have been since last fall when I had that lovely combination of pneumonia and starvation from gastroparesis. I’m not exhausted like I was at the start of the hospitalization, but I’m exhausted like after I got home.

And I am realizing what it means to go from every nausea med they could put in a picc line or inject into a muscle, to what I have at home, which is a lot, but not the same at all.

Just sent a staff person across the street to buy me a shitload of ginger ale to replace some of my Gatorade, since ginger ale fights nausea and Gatorade doesn’t.

Oh and also my picc line area hurts like fuck. Like almost as bad as when it was inserted. I’ve got a hot water bottle on it to keep from screaming. I’m a little scared what happens when staff go home and I have to fill the hot water bottle myself. I’m really wobbly on my feet even getting from my bed to the wheelchair. I keep almost falling.

My DPA thinks they may have cut through muscle to get to that vein in my picc line, and that may be why my arm hurts so badly. It doesn’t seem to be warm like an infection would be and it hurts whenever I type or use the arm for anything or rest the arm on anything. I bet having the line out of it is making the hole all wobbly and unpleasant and they said thy had to dig a really deep hole to find a vein.

The soup had ginger in it today too but it is being very hard to keep down even though I was super hungry and it’s just tucking soup broth. Usually this kind of soup (miso with ginger) soothes my stomach more than anything I can eat.

My picc line hole is hurting more and more and I so badly don’t want to go to the ER to get checked for infection. And there may be no reason to worry about infection. But still. Fuck. I’m almost crying. And it is hurting more even though I have been trying not to think about it. It’s hard to tell if something is truly wrong, or if its just a deep painful hole in an unfortunate location.

I’m feeling like later tonight I will have to go to the ER if the pain keeps worsening though. I don’t want to be an idiot and die because I ignored a possible infection or sometning in a hole that kind of leads to my heart.

I just feel like I need somewhere to talk about these things. So I’m doing it here. I know it’s not interesting. It’s just kind of my life right now and it’s sucking harder than usual.

For some reason gastroparesis gets to me on a level that none of my other illnesses or disabilities do, even ones more dangerous. Probably because once an emetophobe, always have a tiny bit of emetophobia left over. Also because right now it’s the easiest way for me to land in the hospital. And it’s so damn easy. Just little things tilted off, things that wouldn’t affect most people, and bam, I’m back in there, and that scares me a great deal more than I’d like to admit. I’ve been hospitalized a lot in recent years but this seems like the easiest way for it to happen.

I don’t know how some people do it in the hospital. Where they manage to stay all smiling and stuff. I’m always ragged and miserable. And it always feels like I’m failing someone for not being happy. Probably stupid society attitude crap turned in on myself thinking I’ve failed people if I’m not able to act like (as every damn person calls me) a “trooper” 24/7. Makes people uncomfortable. Makes it too real to them. Makes it impossible to cry even once without someone thinking I'be got to stop, whether its someone now or someone from my past turning up in my head.

Because somehow stuff like this isn’t supposed to be mind-bendingly difficult and scary sometimes. And never supposed to get tired or fed up or scared or anything. Also crying too hard would make me throw up so I have to kind of limit it to tears without sobbing kind of.

I understand that it’s not productive to feel like this, and if I felt like this constantly I might have to do something about it. But sometimes I can’t be strong. And when your body is fucked up by medications and lack of medications and changes in medications and not getting enough to eat and all sorts of other things its hard to be strong.

And I think it’s especially difficult for me in some ways because I normally am very good at coping with things most people have serious trouble handling. I mean I’m always in bed, I have a zillion medical issues thanks to my family’s genetics, I am on a lot of medications I would rather not be on, I am In constant pain, and the list goes on and on, but it doesn’t normally fuck me up emotionally beyond things that are by definition emotional problems, like PTSD. I’m normally pretty happy.

But something about gastroparesis has the capacity to make me deeply unhappy. And something about hospitals has the capacity to make me even more unhappy than gastroparesis does. In fact maybe one reason it gets to me so much is that it is along with other gut motility issues like severe constipation and blockages, one of the most likely things to put me in the hospital. And something about hospitals can make me feel horrible down to my soul. That’s why I was so glad to find the chapel, I don’t practice any major religion but it didn’t feel like a hospital despite being surrounded by hospital.

But everyone in the hospital really seemed pretty miserable. You could hear people moaning or sometimes even screaming, pretty much everywhere. And despite being surrounded by other people in the same boat you’re isolated in your bed, especially if you can’t safely walk and they put your wheelchair in the hallway for space reasons. It there are always people who are good at being cheery or at least looking cheery, and they get a lot of praise. Hell even I get a lot of praise for some reason even when I’m abjectly miserable. But the praise feels like pressure to never fall apart, ever, no matter how much torture you’re going through. I’m just glad they gave me anxiety meds the whole time or I’d have been climbing the walls.

Although I’m actually getting better at handling gastroparesis. It’s just when it flares up or gets exacerbated by something, like being forced to eat fucking eggs of all things, it suddenly hits me over the head how precarious my health is. And I can’t always be strong about that no matter now many painful or unpleasant conditions I’m able to accept normally. And I can feel horribly alone sometimes. And I keep feeling like I’m not supposed to say these things. And every time people praise me for being strong or a trooper or amazing or whatever I feel like I have to be all supercrippy no matter what.

But tonight I’m not a supercrip. I’m just tired and sick and miserable and finally feeling a lot of the emotions I always save up until after the crisis is over, to feel. I feel as shaky emotionally as I am on my feet. And it’s not like that weird feedback loop where you feel bad emotionally about feeling bad emotionally about feeling bad emotionally, I just feel bad. Just one layer. Which is better than zillions of layers of misery I guess but I still will be glad when I feel better.

Part of it. I still feel like I’m in the hospital. I don’t feel like I’m home. I still feel isolated. I still feel helpless. I still feel like I haven’t left yet. Unlike yesterday I know technically I’m home. But like yesterday emotionally I don’t quite grasp it yet. I grasp it enough to do the fall apart now that the crisis is done thing. But not enough to feel right.

And all I can really do is write. I know reading things by other people with gastroparesis helps. Especially knowing I’ve been misled by medical professionals into believing that my level of nausea is extraordinary. And knowing things are connected to it that I didn’t know were connected. And seeing that a lot of people with it have the same kind of bloated pregnant-ish looking belly I have, not everyone with it is underweight even when it’s severe. Stuff like that makes me feel less alone.

I still wonder though why this particular illness throws me for a loop in a way that none of my other diagnoses do. It’s confusing.

But that’s the other thing. I am confused. Not confused about. Just confused. I had some degree of delirium in the hospital. I was hallucinating yesterday. I still have a lot of confusion today. And delirium, like gastroparesis, is one of my few conditions that can really really get to me emotionally. So maybe that’s part of it.

And now I’m exhausted again. No not again. Still. Or something. My brain is not working right. And my body is so wiped out there aren’t words. Now I’m too wiped out to be quite so upset. Upset takes energy. I don’t have much energy. I feel worse and better. Weird.