The Life You Save May Be Your Own

DID, knitting, sci-fi, and strong opinions

Sick. Again. July 7, 2013

Filed under: Uncategorized — weordmyndum @ 1:57 am
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Uck. Sick again. I’ve spent a lot of the afternoon in the bathroom with a novel, which is what I did at Sheppard Pratt. But hey, at least here I have my bathroom. There we had two bathrooms and twenty people. You do the math. It’s even more fun when you have to go SRSLY RITE NAO and the only bathroom is clear on the opposite end of the unit. I have no TMI filter, but I’ll try not to be too graphic. I’m sure you guys have good imaginations.

To add insult to injury, my computer appears to have fried its poor little brains. My google-fu informs me it’s a common problem with this model and probably requires a new motherboard. Like I can afford that.

I’ve got to find a gastroenterologist here. I guess I need to slow down with adding new foods back. At SP, I was basically eating the same four meals: peanut butter and jelly on white bread, Amy’s red beans and rice burrito, pasta with marinara, and Amy’s teriyaki bowl. I could eat cooked vegetables without seeds, and bananas were the only fruit I could eat. (The dietician told me I could have apples without the peel, and she got really confused when I asked her how I was supposed to peel them with plastic spoons or forks. She was not a brain surgeon.) I got so excited about real food that I added in a bunch of things. Now I don’t know which one I’m reacting to. I guess I need to back off. 😦

At least I’m not in pain anymore. I have a high pain tolerance (yay dissociation), and that is the worst pain I’ve ever felt. When I first got to the ER, I refused pain meds. Five minutes later, I was saying, “Give me ALL THE PAIN MEDS.” They gave me dilaudid, I think, but it did almost nothing. At several points while I was in the hospital, it got so bad I was crying. I don’t think that’s EVER happened. I’m very glad that’s better. But I do need to find a GI doc here so I can avoid that happening again.

I just hate feeling so out of control of my body. Right after the diagnosis, I was really struggling with it, having lots of flashbacks and body memories. There was excruciating pain that I wasn’t causing and couldn’t escape. It felt like I was once again suffering the consequences of other people’s crimes–UC is strongly linked with stress. I knew it wasn’t the same as the abuse, but it FELT the same. My therapist had me write out some past v. present stuff, but it didn’t change the feelings, either. Some of it comes from parts, but I haven’t been able to get much communication going about it.

It just feels like another legacy of abuse. My parents aren’t the ones suffering. If what happened wasn’t my fault, then why am I the one who has to deal with it for the rest of her life? It’s not fair.


Lonely July 4, 2013

I’m frustrated with myself.

I’ve been home all of three days, but I’m already feeling alone and disconnected. I guess I should’ve seen that coming. I let myself get spoiled: I spent four months in a place where I always had somebody around to talk to who understood, and I let myself get dependent on that. Now I’m back to the real world, where most people don’t understand trauma and dissociation, and I have no friends or anything. And I’m sad.

I’ve also done zero internal communication since I’ve been home. I know I should, and I can’t even explain why I’m avoiding it. I guess I just don’t trust that my team would know how to help me if things got difficult. Their hearts are in the right place, but they don’t have experience.

I’m afraid. I don’t like admitting that.

It’s not like it was easy at Sheppard Pratt. God knows it wasn’t, and I spent plenty of time curled up in a ball crying, and there were a number of times I wanted to punch someone. Still, I was surrounded by people who understood trauma and DID–the other patients, too, not just the staff.

While I was there, my grandfather asked my social worker to keep me there longer and offered to pay for it. My reaction at the time was, “What the flying fuck?” but without the swear words, since we weren’t supposed to use them. But there is at least one part who wishes I had stayed forever. There were a lot of infuriating aspects to being there, but at least I was around people who understood what I was dealing with. There’s a kind of safety in that.

I wish I had real-life friends in my area with DID. I don’t want to feel this alone with it.


Whine January 29, 2013

Filed under: Uncategorized — weordmyndum @ 2:51 pm
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I am depressed and exhausted and I can’t get warm and I lost my favorite hat yesterday and the dog ate my whole bag of trail mix and my weight’s not down enough and I’m hormonal and my mother might have cancer again and I’m still waiting for a spot at Sheppard Pratt and I don’t like my therapist and my hair looks like a rat’s nest and there’s no sunshine and I want to kill myself.

Can I just go back to bed and skip today? And maybe all the days?


Self-Soothing and ED Behaviors January 22, 2013

I harbor no illusions about my eating disorder; I know exactly what it is and is not. For me, it is not about weight or size or shape. I don’t have body dysmorphia or distorted self-image. Society didn’t teach me I needed to be thin to be loved, and my abuse didn’t teach me I needed to be thin to avoid love/further abuse.

My ED is about self-soothing. I have virtually no ability to soothe myself.

My experience with the term “self-soothing” is that what most people think it encompasses is way too shallow for me. When people talk about self-soothing, they generally mention doing nice things for yourself (take a bubble bath, eat chocolate) and/or distractions (watch a movie, take a walk). These aren’t bad things to try, but usually these kinds of things don’t touch my distress. It’s too deep and too embedded.

The only thing that soothes my distress is self-destruction. It doesn’t really soothe the distress, just numbs it. But when the distress feels intolerable and I can’t soothe myself, numbness via self-destruction is an acceptable choice.

I think my inability to self-soothe is developmental. Because my family was so chaotic, alternating between abuse and neglect and impossible demands, I was never comforted and soothed by my parents. I never learned from their example how to soothe myself. And because I was being subjected to extreme abuse and was experiencing an extreme level of distress, I needed a higher level of self-soothing than a kid who skinned her knee. My brain developed with a higher threshold of the degree of soothing I needed.

But my family shamed and punished me for having needs, so I cut myself off from those needs. I stopped going to my parents or anyone else for comfort and soothing. Somewhere along the way, I discovered that self-destruction came close to soothing my distress, and not needing or asking for anything from anyone soothed my guilt.

So now I’m stuck in this feedback loop. I need more soothing than most people, but I don’t know how to soothe myself. That manifests in needing more soothing from other people, which results in immense guilt. Then I pull back from people and self-destruct to numb the distress.

Right now, that’s playing out through my eating disorder. The restriction decreases my baseline distress level, the numbers give me something to focus my attention and energy on, and I take tons of laxatives to deal with all the excess distress.

It’s not a good pattern, but I feel hopeless about changing it. I haven’t been able to find anything about learning to self-soothe when you have such a high threshold that normal strategies don’t work. I can’t go back to childhood and grow up with good parents who could teach me to soothe myself, and nobody can reparent me now because I’m an adult.

So where does that leave me? Will I stuck in this forever?


Grasping at Mist January 6, 2013

Filed under: Uncategorized — weordmyndum @ 4:37 am
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How do I keep getting through the days and the nights?

They’re so long. So unbearable.

I can only watch the same DVDs so many times. I can’t focus long enough to knit more than a few rows. I can’t read.

I just sit here on my couch, waiting for something to change. I keep googling treatment facilities even though I know well and good that what I need doesn’t exist. Well, there are good programs; they just don’t take my insurance, so I’m shit outta luck. But I guess some part of me thinks if I keep hitting the refresh button, the perfect facility will materialize.

But it never does. And hope doesn’t materialize either. I haven’t heard from my team since yesterday, and I want them to call and check on me. (Jesus Fucking Christ, how needy can you be?) I want them to care enough to call because I can’t let myself call them. But they aren’t psychic; they don’t know I need that.

They also haven’t come up with any concrete ideas for treatment. I need something to hold onto. I need that so badly, but there’s nothing there.

What the hell am I supposed to do?


Doesn’t Matter January 2, 2013

Filed under: Uncategorized — weordmyndum @ 5:16 am
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Tonight I’m so angry I can’t think straight. I’m angry I can’t get the help I need.

I want to lash out and hurt the people trying to help me. I hate that urge, so instead I want to hurt myself.

I know I need too much. Or I feel that way. I’ve tried so hard to convince myself that I’m not too much, but now pretty much the whole universe tells me I’m too much.

My family. They’re finally cutting me off at the end of the year. My grandfather has paid a ton of money for my treatment, and he wants to retire. I get that. But what do I do about the fact that I’m still in need of treatment?

I’m trying to get treatment on my own. Right now I need residential care for the depression and the trauma issues. And theoretically the eating disorder.

But then there’s Medicare, telling me I need too much. Medicare will cover psychiatric hospitalization, but their definition of “hospital” is so narrow it covers only locked units. It probably sounds silly and overblown to everyone when I insist that I cannot go to a locked unit. Oh, there goes Sara with her manipulative melodrama again; god, we’re all so sick of hearing it.

But I was beaten to a pulp in a psychiatric hospital and then told by the staff to forget about it. Then I was sexually assaulted every night for months. EVERY NIGHT, you bureaucratic bastards. You wouldn’t be able to go to another locked unit if that had happened to you.

But it doesn’t matter what happened to me. I’m crazy. I have no value to anyone. So it doesn’t matter what happened to me.

It doesn’t matter that the help I need is out there because I can’t afford it. It doesn’t matter how badly I need it it doesn’t matter that I’m teetering on the cliff about to fall off. It doesn’t matter if I die because I’m not worth anything anyway.


Terror, Compounded December 30, 2012

Filed under: Uncategorized — weordmyndum @ 11:18 pm
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I can’t stop freaking out. I know I need more than Windhorse can give me, but I’m terrified of being hospitalized. I’m not talking about a little bit of anxiety–I’m talking about can’t quit crying, nose keeps running, shaking, hyperventilating panic. For days.

I try to keep busy. I’ve been playing with Winston and knitting madly. It doesn’t really help, though. Distractions don’t really work.

I haven’t told anyone at Windhorse what happened at the hospital in Iowa. They know I’ve had bad, retraumatizing experiences with hospitals, and they know how bad Menninger was. But that’s nowhere near the whole story.

Locked up, dehumanized, ignored, mistreated. Physically assaulted. Denied medical care and told to let it go. Repeatedly sexually assaulted. Silenced because no one would care anyway.

Different scenario now. Supposedly. Could be exactly the same, though. Stuck. Alone. 1500 miles from anyone who cares. Locked in. Controlled. Hated.

Can’t do it. Can’t. Not again. Can’t.

But I need this, I know. I’m too messed up to be outpatient right now. I just want somewhere that’s not locked and isn’t totally controlling. I want to be allowed to keep my shoelaces, my self-sufficiency, my dignity. But Medicare doesn’t cover that.

Why can’t I get what I need? How fucked up is it that, to get the help I need around the trauma, I have to go back into the same situation that caused a big chunk of the trauma?

I don’t know what to do. I don’t know how much more terror I can survive. Will the terror of being in the hospital fix the terror of the trauma, or will it just make the terror worse?


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