They don't call it an eating disorder, but I am afraid I will starve to death

[Nothing_but_books]

I have a problem that everyone I reach out to says "that's not what we do" and I'm terrified about it.

Backstory: About 20 years ago, I stopped being able to walk or stand most of the time because of pain. I couldn't care for myself. I needed my husband to feed me, but he was not up to it. My weight dropped until I reached near 91 pounds, and when I looked in the mirror I knew I was going to die. (But I didn't - ha, ha.)

Present time: I am terrified even thinking of feeding myself. I have not done it successfully in twenty years. Two issues, (1) bad pain standing and walking (2) extreme TRAUMA even thinking about planning or making myself a meal, or eating a meal alone.

I have reached out to a local eating disorder clinic and that's not what they do. They referred me to another clinic, not local, supposed to be one of the best in the country. The woman in admissions I spoke to was as cold as an iceberg and just said no.

My husband has decided in the very near future to stop visiting me regularly and to either stop making me dinners, or to make them just once or twice a week. He wants to get on with his new life as soon as the pandemic lets him get out and move in with his girlfriend who agrees with him that to visit me daily is OUT. ("Even if she didn't mind, I still would not be willing to see you every day.")

I have no family. I have no friends. Currently living in Gehenna.

Please no "tough" for my own good. Advice appreciated. Kindness much appreciated.

[Downandout123]

Can you get an aide, to cook for you and eat with you?

[Nothing_but_books in reply to Downandout123]

I don't know how. I wouldn't even be able to begin in the state I'm in. (I am not really functional now, suffering extreme panic and crying from dawn until going to bed.) My husband would have to do it, I don't have my own money.

[scarr6]

That is a really hard situation. I'm surprised the places you have reached out to have treated you that way and I am so sorry to hear that. In those 20 years, were you able to get help for the pain you experience?

[Nothing_but_books in reply to scarr6]

No. Three years of all kinds of doctors and clinics. Either useless or injured me permanently.

[Ubud2021]

I would like to give you some advice if I may. (:

#1) I believe you. I believe you are in a lot of pain. Have you talked to a doctor about the pain? It could be something you may need some treatment for. That’s something for the doctors to figure out.

#2) From what you have described here, you said extreme trauma of thinking about planning/making yourself food, and also, you stated extreme phobia of eating alone. Personally, I’d like to point out the words you have used. “Extreme trauma.” I have PTSD and also many traumas. And when you think about doing something you are extremely scared of, you are put in a certain state of mind. Personally, I feel like this is trauma and PTSD based. Honestly, an eating disorder would not be the first thing that comes to mind. Again, this is MY personal opinion. The PTSD could stem from the pain of trying to make a meal, or something that has happened/something someone has said in the past. Even if you do not remember it. Trauma is funny that way. It doesn’t show itself, or give us the answers we want all the time. There are things that I am SO AFRAID of doing alone. And it is trauma based. I would look into a therapist who specializes in trauma and PTSD. I’ve had years and years of therapy for my trauma, but nothing worked until I found out about EMDR therapy. It has completely changed my life.

I hope you have read this with an open mind and open to the possibility that it may be trauma related, or, even something completely different. I also wish you some peace, and some pain free days in the near future.

If you need to talk more, my inbox is always open. 💕

[weegmack]

Goodness, I’m so sorry 😕. You are having such an awful, awful time. I believe you and I can’t bear how isolated you are.

Can you please tell me more about the pain? Did it start in your back and have you seen doctors about it? Xx

[Nothing_but_books in reply to weegmack]

Sick of going here, but I live it all the time, so... you asked for it. Extreme pain in both feet and ankles. Gets worse if... well so many things. Gets better if my husband rubs my feet (with Jergen's hand lotion) in bed before I go to sleep. Only thing that almost always makes it ease up. Doesn't work during the day, or if I try to do it. God bless the little darling, that won't be happening anymore.

Also times my back pain is horrible, times not so bad.

Can't keep my balance, fall often. Thanks to a doctor I went to for help with my foot pain. Venous insufficiency thanks to that same doctor. My feet and ankles are blackened and deformed and hurt. Couldn't sue the bastard, he never gave me a diagnosis so he can't have mistreated me (according to several lawyers).

I saw every doctor in town, and a major clinic out of town before I said no more. They don't help, and a lot of them hurt me.

And a major breakdown - all day panic, extreme anxiety, crying... I am so pathetic I don't feel I can even face anyone - being judged and found wanting.

How's that?

[weegmack in reply to Nothing_but_books]

You are absolutely not pathetic. Not at all. Thanks for going through all that with me. I appreciate you’re sick of talking about it.

You have indeed been treated so terribly badly. It’s absolutely disgusting the way you’ve been treated and I am so very sorry.

I wish I could do something to practically help you. Your husband sounds like a total jerk. You’re totally better off without him, but I realise you also rely on him. Just such an awful situation and my heart hurts for you, it really does.

I’m in Scotland, so I don’t know what agencies are available to you in the USA. But, never ever think that there is any shame in asking for help. You are most deserving of help. You need it and you deserve it. Tell yourself that. You are worthy of help. The way you’ve been treated by the medical world and your husband has left you with no self-worth. I’m sending you big hugs and love. ♥️

[Hidden]

In the US there are ways to get food to you, access to food banks, Meals on Wheels is an example, also 211 is a nationwide service that could help you gain access to social services available to you for free, there are delivery meal services (all you have to do is heat and eat). Just thinking how inhumane it is for someone/anyone to leave you to starve to death is such a scary and disturbing thing to read in your post. The thing is, in the US we don’t let people starve, so there is help for you, these options are a good place to start if you choose to. I wish you the best outcome for your situation.

[Nothing_but_books in reply to Hidden]

The list you have offered is so considerate and thoughtful. It is also completely overwhelming for me. I can barely manage to fix a bowl of cereal for myself by midday. And then sit and eat alone. I don't want to. I feel so hopeless and helpless and lonely.

So much turmoil ahead - I can't mow grass myself, can't shovel snow. Can't even change overhead light bulbs without a risk of falling off the chair. I have to use paper plates and plastic spoons from now on. I won't be able to cook, I can't wash dishes.

I told my husband this morning that I am angry at him for leaving me this way. And got screamed that that I want to ruin his future life. No chance to even be heard - I am past believing there is any chance this is not exactly what is coming, just feel incapable of living through it.

Oh my goodness, Roxie, I am so trapped in my fears I didn't really tell you how much I appreciate what you did. I am copying down all of your ideas. For a time when I can face trying any of them. I am in shock now, beginning each day with a sedative to try to survive. And not much more is happening. But ruminating. I wonder if the cows ever feel this bad, mulling over their cud?

Afterthought. The trauma (almost drying from starvation) centered around food is as debilitating, if not more so, as the physical pain. And even more a source of humiliation. Healthy people get fed up and impatient with me - why don't you just do this? Or that? Ya. Trauma is why. But Lord help you if you understand what I mean; really understand.

Too much me. Thank you again. I hope your weight problems are resolving now. I can tell you understand so much more than someone who never walked this path.

[Hidden in reply to Nothing_but_books]

I edited that part out of my post, but you did see it and now I am glad you did.

As far as my weight, I gained 26 pounds and have been maintaining that for quite a while. It was a difficult struggle, and mental health dictated and ran my entire existence from eating, lack there of, my mobility, so much was stolen from me by my depression.

Thanks for responding, let me know if maybe I can try and think of any other alternate things you can try or just be a lending ear if you need one. 💜🌺

[Nothing_but_books in reply to Hidden]

So much kindness. Thank you.

A weird request, if you can find it in your heart. All I know about Scotland is "The Heather On The Hill" (Brigadoon), filmed on a studio backlot in California - so all I know is nothing.

I will never travel, will never go anywhere except in my imagination. Tell me?

Or not, if it's too strange. I hope that awful part of your life is gone for the good. Only the best.

[Nothing_but_books]

Today, hubby came to tell me what he could make me for dinner. Around four o'clock. He offered to make rice for dinner with a little bit of lamb stirred into it. (All he ever gives me is starch. Last night's dinner was ramen noodles with nothing.)

When I said I am worried about not getting enough nutrition, and could he suggest something soft and digestible for my painful stomach, he harassed me, on, and on, that I was refusing what he offered, and there was nothing wrong with it.

I told him that he is angry that my disordered eating has me so dysfunctional and panicked all the time. And trouble about food makes me worse - duh!

Well, he went out to the store get something we finally agreed on, after going through hell for an hour and ten minutes. Then he came home, and said the store didn't have it. And he refused to go back out and get something.

He screamed at me "If you want me to ever feed you again, you will pick a week of meals, and that's all I'm ever making again! We will repeat the same menu every week". Accompanied with bared teeth and a red face.

My panic was down, just the tiniest amount today on the new prescription I started -- until this. He says he will not be feeding me today, and it is my fault.

I'm scared. And hungry. And my stomach hurts.

[Hidden in reply to Nothing_but_books]

You need to call someone a friend or family member and get out if there. He is not going to help you get better.

[Nothing_but_books in reply to Hidden]

TINKERBELL! My best Sunday evening memories as she welcomed us into the Wonderful World of Color!!! With a flick of her wand we were transported, and Uncle Walt was there, escorting us on...

Sorry, you probable don't even know what the heck I'm going on about, but I just momentarily stepped in a time machine and was sitting on the floor at Grandma's house again.

Oh. Friend or family member. None such. Nada. Zilch. Zero. "not going to help"? Yup.

I thank you for your response.

[Hidden in reply to Nothing_but_books]

Yes I know exactly what you are taking about on Sunday the wonderful world of Disney. Wow I had forgotten about that. Well I still think you need to leave. Be brave and walk out.

[Nothing_but_books in reply to Hidden]

Not to be crude. Walk is out anywhere, anytime. Walk left me more than twenty years ago. Slither out perhaps. Not too far.

[Hidden]

Reach out to a church. Explain to them what is going on. I would hope and pray they’d have compassion on you and help you by getting counseling and regular visits. Get you involved the fellowship of the church.

[Nothing_but_books]

Not my thing, but I do appreciate the thoughts. Churched out so long, long ago.

[scarr6 in reply to Nothing_but_books]

I'm not sure where you are located, but while church may not be what you are looking for, there are churches that provide services and are available to help, whether or not you're looking to be a part of a church. There might be a church that is willing to help without expecting you to do the church thing. A lot of Episcopal churches can be good for this kind of situation.

[Nothing_but_books in reply to scarr6]

How would I go about looking into this?

[scarr6 in reply to Nothing_but_books]

There are a number of ways to find churches in an area. I good way to look at an Episcopal Church would be this website: episcopalchurch.org/find-a-.... I would recommend just emailing churches around you, explain what portions of your situation you are comfortable sharing about, and ask them what kind of services they might provide. If they don't seem like they'll be very helpful or there our strings attached, you just don't have to respond.

[Jinxed20]

I am not being judgmental in anyway but have a real concern for you . It sounds to and I’m not sure where you live but is there anywhere you could consider to move possibly into an assisted living building or a contact your doctor to get home care . You can’t be left If the state you are without help . You need assistance from your post with daily living and there is nothing to be ashamed of with that . You need help . I think the first thing it sounds like you need to do if contact your dr and explain your spouse is leaving you can’t walk or make your meals or feed yourself and our at a loss as to what to do . They have to provide home care in home if you no longer can care for yourself . An assisted living place might be something to start researching as well so you have others around you , daily activities . Might I ask are you in a wheelchair ? I really feel for you and your current health condition . Hugs

[Nothing_but_books in reply to Jinxed20]

No wheelchair. I don't appear crippled until I attempt to walk. Extreme pain (varying in intensity) does not always prevent me walking, but has consequences after walking (particularly on a hard surface, such as cement). The evening after walking, and sometimes days after, I am in agony. It is easy to say "assisted living", and "they" have to help you, but the reality of depending on government charity is bleak, shading to gruesome. And I have already lost so much... moving into a home to be taken care of feels like the living part of life is over.

It seems impossible to make myself understood that the physical pain is not my only limitation in feeding myself. The trauma from thinking I was going to die of starvation has distorted boundries between what I can / can't do physically, and what I panic needing to do.

This is one of those "poor me / why me" rants, but WHY do I never have a simple, traditional disorder? The eating disorder clinics I have asked for help tell me "that is not one of the eating disorders we recognize". So.