Another sleepless night. All I can do is sleep when I want to be up and doing things, but at night…nope.
I’m scared and alone. I can’t stop thinking about the future and how I’m ever going to manage like this for any length of time. I’m barely scratching out my survival every month, and it’s just not sustainable. Pretty soon (the end of June) I’ll lose C for good, and unless I magically find a therapist, I’ll have no one left to rely on except Idiot Case Manager. (I think I’m just gonna call her ICM from now on. It’s easier.)
I feel like there’s something seriously physically wrong with me. I mean, besides just the UC. My energy levels are non-existant. No matter how much water I drink, I still nearly pass out every time I stand up. Sunday, I couldn’t get through an hour and a half of canvassing before I thought I was literally going to collapse. I barely made it back to the car. I’m sure this is somehow related to the UC–before my diagnosis, I was walking and running around 5 miles a day and doing intense martial arts training for around 6 hours a week. I wasn’t an olympian, but I was in good shape. Now I can hardly stand up. Seriously, I had to buy a cane, and I STILL couldn’t finish my canvass. All the tests come back normal (or as normal as they can be for someone with UC): iron levels, B vitamins, Vitamin D, thyroid–all normal. My doctors just shrug it off: “Fatigue is pretty common with autoimmune diseases.” But I see all these other IBD patients who run marathons or do martial arts or, you know, can be on their feet without collapsing. I’ve spent a lot of time since my diagnosis talking to other people with IBD, and I’ve never heard of anyone else with this level of fatigue and weakness. I don’t know if it’s the disease or the meds. I kind of suspect it’s the 6-MP–I don’t recall fatigue like this before I went on it, and it’s gotten worse since the doctor on call upped my dose a few weeks ago.
I feel like I need someone who can look at this integratively. I love my gastroenterologist, but he seems uncomfortable with addressing anything that isn’t directly related to my intestines. My GP is also good, but when my tests came back normal, that was pretty much the end of it for him. I can’t afford to pay out of pocket for any kind of holistic doctor, so I’m basically just shit outta luck.
I just wonder how I’m ever going to be able to function like this. I was working part-time on the campaign, and now I’m barely able to do even that. Most days I don’t leave my bed, although I do manage to spend a few hours sitting up. I’ve got a stack of canvass packets two inches thick that I haven’t entered because I’m too fatigued to concentrate enough. It’s not even difficult, just detail-oriented, making sure I enter the right data for the right person. I could do it in bed, but I’m struggling even with that.
Once I lose C, I don’t even know how I’ll grocery shop. Right now, that’s what she and I do on our shifts. To grocery shop on my own, I’d have to take two buses each way and wait at stops with no benches, which right now is basically impossible. ICM has made it clear, when I asked about help getting to the grocery store, that they “don’t do that.” I’ve yet to determine what she actually does, other than make sure I’m still alive once a week and make comments that make me want to punch her.
I feel like I’m being left all alone in a world too big for me to manage, and no one even notices, let alone cares.
It’s just like when I was a kid. My mother used to disappear sporadically. It was always after one of her rages, and a lot of the time she’d threaten suicide before she disappeared. She was never gone more than two or three days, and sometimes it was just for several hours or overnight. But it started when I was 8 years old, and I had two little sisters to take care of. I was never sure if she was going to come back, but I did the best I could to take care of my sisters. We ate a lot of cereal, peanut butter and jelly sandwiches, and macaroni and cheese from a box, since those were the only meals I could make. I learned not to think ahead because then I’d panic about what would happen to us if my mother didn’t come back.
It was the same way when my father was abusing me: just deal with this moment, and don’t think about the future or you will fall apart. It was always about mere survival. I couldn’t imagine things being any different because I was so small and he was so big, and no one even noticed what he was doing to me.
And now it feels like that same situation is playing out again. I need help and compassion and care, but what I get is neglect or abuse. I can’t think about the future because the hopelessness is too overwhelming. There’s nowhere to turn. No one will save me. There’s no rescuer coming. I am alone.
Yes, there’s something to be said for not expecting someone to magically save you or fix you, but I don’t think that’s what I’m doing. At least, I’m trying to convince myself that’s not what I’m doing. I’m willing to work as hard as I can to get better. I’ve tried so hard for so long. I don’t expect some idealized savior to come make everything better. There’s this scene from The West Wing where two White House staffers are talking to a guy in a hotel bar, and the guy’s talking about the struggle to afford college for his daughter:
It should be hard. I like that it’s hard. Putting your daughter through college, that’s–that’s a man’s job. A man’s accomplishment. But it should be a little easier. Just a little easier. ‘Cause that difference is…everything.
That’s how I feel. I don’t want my life to be easy–I would get way too bored. I’m one of those people who loves to fight, which is why I’m so good at politics. I’m willing to keep fighting for my life–that’s a real accomplishment. But it should be a little easier. Just a little easier. ‘Cause that difference is the difference between “I think I can manage this” and “My life is so impossible that I have no viable choices besides killing myself.” ‘Cause that difference is everything.