How do I get help?

I asked to get on the EMDR waitlist and I got “we’ll look into it and get back to you.”

I was denied from PHP (“too sick”) and IP (“don’t meet criteria “) and insurance won’t pay for residential and I sure as hell won’t either.

I tried looking into therapeutic theatre groups for eating disorders even (got the idea from The Body Keeps The Score) but couldn’t find anything close by.

I got a BPD workbook a while ago, had to take a break from it because it got overwhelming, but got back at it when I got home.

I was just on a regular psych unit, but expressed in tears I hate waking up every morning so they sent me home (because that’s a sign I’m ready??). The nurse practitioner in there and I work really well together usually, and she gives me book recommendations (could be anything from What My Bones Know: A Memoir of Healing From Complex Trauma to A Tree Grows in Brooklyn).

Right now I’m in ACT (assertive community treatment, not the other thing) so see a case manager, regular therapist (lately it’s just been crisis management, but she wants to do a combo of DBT/CBT with me), a psychiatrist, and there’s a few peer support people in the mix I can talk to and a med nurse that gives me my meds every day because I’m not to be trusted I guess.

(Sorry my neighbor is getting in trouble for smoking weed so I’m gonna post and edit when I can focus)

I know I can and should be meal planning on my own (which I am) and sticking to it (which I’m not.)

I should think it’d be easy enough just to do it if I wanted to get better so I clearly don’t want to get better. Why don’t I?

Can you get help meal planning from a nutritionist?

It's hard to take that first step and break the bad cycle. Once you get on the right path, it gets easier as time goes on. I used CBT quite intensively and yes, it felt AWFUL doing things like putting together a puzzle when I would normally be exercising, sometimes I took a couple soaks in the tub with books and magazines just to keep my mind off food and exercising. And I had to start drinking Slimfast shakes between meals to add nutrition, which I wasn't that happy about, but I did it. And I still did let myself do a normal paced walk for a normal amount of exercise (the recommended amt daily). It was hard to stop running and sub slow walking, but I did it. I worked with a nutritionist too for meal planning, that helped as well.

The big and most important key though is that you REALLY DO want to change the cycle. If you don't want to rid yourself of the ED badly enough, I don't think anything you do will help. Even any IP help will be undone the instant you leave the hospital.

I clearly don’t want to get better though. That’s the thing. A) it’s (physically and emotionally) painful as fkkk and B) Every time I “recover” it only lasts a few months and it’s not like it’s ever a full recovery, just more like I’m focused more on some other method of self harm more.

Honestly, I’m at the point I’m gonna hide all my Zyprexa, eat the bare minimum, and drink a lot/wear heavy clothes/put stuff in my pockets when I go to doctor appointments and hopefully it’ll stop itself if you catch my drift.

It never just stops on it's own, not for me at least, and the one thing I remember, that I keep in the back of my mind was how hard it was to recover from that lowest weight point. It was F*KKing HARD, and I never, EVER want to go there again. Because in the end you really only have 2 choices: you have to regain weight and get healthier physically or die, and sui by ED is NOT an easy way to go. And in the meantime, if you choose recovery if you let things go too long ED-wise, your teeth go to SHYT (ask Victoria's mom on BP for one), you can get stomach ulcers, stomach cancer, increased risk of esphogeal cancer, gallbladder issues, electrolyte imbalance affecting your heart, nearly passing out or actually passing out (that's a fun one!), even worse insomnia, your BP mania/psychosis gets worse without the AP, osteopenia/osteoporosis, slowed thyroid, brittle hair & nails, lanugo (that's not much fun either), just to name a few.

Can’t be much harder than eating.

I think that you know you need help. You have to convince yourself that yes, you ARE worth it! And you definitely are. Starving is a miserable way to go about life. And in the end, they will cart you to IP ED treatment, but do you secretly want to be "sick enough" for IP psych ED? I don't know. Maybe if you think it would help you, otherwise, that's a pretty miserable place to go to.

I know I need help. I know I don’t want it and I know no one wants to help. My case manager just cancelled today so that’s nice of her to let me know all of two minutes after she was supposed to meet me. It works out.

And I’m smart and stupid enough to manipulate basically everything from the number on the scale to what goes through my docs head except lab work (and even that if ahead of time I know I’m doing labs I can do “bandaids”)

I would never go back to my lowest weight for anything, it was so awful. But maybe your lowest wasn't yet your rock bottom? I was fortunate in that for me it was. Sometimes I still dream of it but then I remember all the bad that came from it and how da*n hard recovery was from that point and thank you, but no thanks. That recovrey was the hardest thing I ever did in my life and that includes giving birth and most especially being the mom completely responsible for this baby, this toddler, this preschooler (even married, I had a very, very hard time parenting when my daughter was so young), getting off benzos, recovery from perforated ulcer surgery (there a source of full-blown PTSD on its own), my last psych hospitalization (in restraints and adult diapers and had lost my voice from screaming, another PTSD trigger), harder than recovery from sexual abuse even, harder than going through some idiot shooting through my living room balcony door while I was asleep in my bedroom at the time, harder than a SHYT childhood with my father, harder than bipolar, pretty much harder than all the hard things in my life rolled together so that's pretty much what I mean by how hard it was.

It's not easy. If it were, you'd never see the frequent relapses you do with EDs.

Basically think of every SHYT bad horrible thing that's happened in your life that you've gone through, and recovering from an ED is harder than that combined. But if you've been through that SHYT and perserved, you've got it in you to recover too. You just have to dig really, REALLY deep.

When I recovered from the ED rock bottom, I was still in my early 20s, I hadn't been through half that hard stufff I listed above, the sexual abuse & crappy father, not even a diagnosis of depression or bipolar. I never realized at the time that it WOULD be the hardest thing I did in my life by far, harder all the hard spots that have happened to me in 47 years. But it still wasn't hopeless.
And it's a miracle I recovered without IP because I no doubt did belong there, maybe even wanted it on some level but my parents couldn't afford it without insurance. How I dug in and did it, I still can't really say other than I got tired of feeling like crap physically all the time and not being able to sleep (because sleep becomes harder too when you undereat).

When I look back at my lowest weight, the only thing that sucked was the fear of the people around me. Them lying about me. The rumors. The constant talking behind my back. Everyone IP (regular psych floor) asking to switch to a different roommate than me because I sleep during the day or my hair loss is gross. Starting to eat again sucked because I went straight to severely binging and purging and got a nice MW tear.

The worst part of actually being at that weight and that experience was the psychotic pieces of thinking the nurse was narrating my every twitch, every toss, every turn, every puss, every cuss under my breath, the gurney that only existed in my mind was rolling down the hall and strapping every five minutes, not knowing if what I was thinking, hearing, seeing was real or not. When I started convulsing and didn’t know why. It was just anxiety. Really really bad anxiety from being TERRIFIED of the nurses there. Just thinking that’s where they sent me when the Ed got bad enough they had to do something just makes me want to never say a word about it to anyone irl ever again.

Feeding tubes weren’t comfy. Potassium drips stung a bit. (Those were not ED treatments but after some weeks long dissociative episode I still don’t know what happened). But I’d take those days and the days leading up to them (not that I remember them) over what Risperdal or Haldol did to me or the days at my dads den or god knows what happened when I went to West Virginia.

I'm sorry you've been through so much hard stuff. I do think though, for an ED recovery to stick (or mostly stick in my case), it IS going to be one of the toughest things in your life. Do you think your ED has worsened now your living on your own and can get away with more bad behavior, so to say? Because I know that was when mine got really bad when I could do whatever the hell I wanted and no one was there to tell me different, so you push the boundaries even more?

I'm lucky to be one of the few to recover from an extreme low weight without the hospital and without that much outside help (a generic T, I used the "tricks" to stay out of the hospital), some trazodone, an anti-depressant. As I understand, this is extremely rare, and not the way most ED recoveries work.
Maybe my recovery "stuck" better because it was something I did do on my own, on my own terms. I've had a couple minor relapses, but nothing nearly as bad as that first time around.

I don't know. I have a husband and a daughter too and I feel I have an obligation as a wife and a mother not to spiral down the ED hole, and maybe that helps me too?

Yeah. I think part of why it’s bad was because [TRIGGER]I didn’t know it was bad, I tried jumping, someone said it was, then kicked me back to where I was physically while still being where I’m at mentally just I guess with an awareness that my lack of eating may or may not be intentional (I’m still 50/50. I still think having 7, 8, 9/10 pain if I eat fatty food kinda is a big reason for not wanting to eat much). basically and said “good luck, do better,” and now I just don’t want to exist. I don’t want to eat. I don’t have any desire to “fuel my body” or survive or do anything but go back in time and stop myself from not jumping and waiting for help. [/TROGGER]

I don’t have many obligations I feel I have to go on for. I mean, I have the cats, but my mom will take care of them and probably out live them. I’m not even allowed to have pets in the apartment, so I can only visit them. I don’t even have transportation right now so that’s up to someone else’s discretion too as to when I can go (long story). I wouldn’t feel guilty dying on my mom’s hands. She didn’t try saving me before when I told her I was being hurt, why would she care if it was myself doing it. It’d probably be a relief, like when that really old cat that struggles to walk around the house with big tumors on his body passes? Sad, but kinda like, “finally, we all can rest”?

Can you push your caseworker to see if you can get help sooner? Are you mentioning things you are doing to her, "tricks" to weigh more, skipping meals, not taking your meds, etc. Just sounds like you're going to end up ED IP anyway, but really, it sounds to me as if you are sick enough for it already, and why be there longer than you need to AND have more weight to gain?

I don’t think I am though. I mean I haven’t done an intake, but I was way sicker medically when I did have an intake and “didn’t meet criteria “ then (lower BMI, worse labs, was eating more frequently but less overall AND purging) so I doubt I would now.

Of course I haven’t brought up anything. I answer her questions honestly but don’t bring up anything she doesn’t ask about. She doesn’t know I’m struggling with the ED right now (she’s kind of dumb and didn’t get it when I went like two weeks screaming “I CANT EAT”) so she doesn’t ask those questions so much.

She did schedule for later today though so that’s good.

edit: especially considering my t cancelled on me

Case manager is excited for all the great things happening. I’m in a much more safe environment (she says after I tell her about two drunk guys trying sleaze into my pants while I’m just trying to walk to my therapy appointment that was cancelled), I can control my surroundings, I’ve got good goals…

I just answered her questions. She really doesn’t give me space to go on about not eating in over 2 days or think twice when I say “I won’t stock the fridge until I know I won’t have to unplug it to not go apeshyt, but that’s okay I can go without.”

Then you need to get into HER space and tell her what's really going on with you. Same with your T and same with your pdoc. You say you don't see yourself getting by without outside help on this one; it's time for you to advocate for yourself and get the help you need before you die of a heartache or ended up with a perforated ulcer something that affects your physical health for the rest of your life, beyond just the ED and osteoporesis. If you don't feel you can speak up on your own behalf (though I think you CAN, I think perhaps complacency may be coming into play here?) can you bring someone with you to one of these appts. who would advocate on your behalf?

I can’t really help I don’t ever see my T and my case manager had a serious case of toxic positivity and I can say “haven’t eaten in x days,” and she’ll say “you’re eating tonight, right?” and I’ll say “probably not,” and she’ll say” that wasn’t a no!” And we can go back and forth and with both of us having ADHD—hers completely uncontrolled, my meds worn off by our appt time— it’ll end up with some memory about Market Basket during the pandemic and she’ll ask if I need to make a dentist appointment and leave. You know why she cancelled yesterday? SHE FORGOT ABOUT ME. Called 2 minutes after our appointment should’ve started saying she was “hung up in (where she lives)” and today told me she literally just forgot.

Okay, I’ll be real with my T when I see her, whenever that’ll be… these guys don’t have a good track record for consistency.

Called and left a message for my T saying whenever I see her I may not tell her that at this point I haven’t eaten in so long and I neglected to tell my case manager today.