F.E.A.S.T's Around The Dinner Table forum

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yellowcaty
Hi all

Today should have been a good day as D is WR according to IP. However she is far from ok and I can’t help worrying that she will be discharged before the purging has stopped. We have been told that sometimes this happens if the commissioners won’t pay for a longer stay. I’m probably worrying about nothing, but it is hard to stop.

Anyway, this afternoon I started writing down 10 things that I am prevented from doing because of ED or have to do because of it. This was an entirely selfish act as I’m always hearing/ talking about what my D is missing out on and I just wanted to have my say (I’m not planning on sharing it with D). Anyway, once I started I just couldn’t stop. I’m now at 50 and have a long way to go. It was quite therapeutic and left me with a desire to change each one slowly.

Here is the one I would like to change the most and number 1 on my list:

To meet up with people/ go to work without having to put a fake smile on my face. (I’ve been doing this for so long,even when inside I’m in pieces, that I don’t think I know how else to be.)

I’m hoping tomorrow will be a positive day.
Lots of love
Yellowcaty
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yellowcaty
Here is 2-10

2. To sleep through the night.
3. To go food shopping without planning for hours.
4. To not always be thinking ‘what if?’
5. To go out and have a good time without feeling guilty
6. To not have to check the toilet continuously when she is home
7. To plan a holiday we might actually get to go on
8. To not feel guilty that I somehow caused this
9. To see my family whenever I want
10. To laugh out loud
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Mamaroo
Hi Yellowcaty

I like the idea of a list. I think most of the items on your list you will be able to tick of as your d gets better. Now, after my d is WR for more than a year, I still need to think and plan all the meals. So here are the things still on my list:

1) To not constantly be planning, cooking, serving - I don't think this is realistic to take off completely, so I just want 1 day where the meals are not my responsibility.
2) To not constantly be checking my d to see if she is eating all her meals/snacks. 
3) To be able to do something outside of ED.
4) To be able to look at thin people and not think they have an eating disorder or other illness
5) To be able to return to some exercise without hiding from my d (hahaha, this is never going to happen)

D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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atdt31_US
Hi yellowcaty.  I know you know it, but you must not really really know it know it --- but you can cross Number 8 right off that list. One down, nine to go.
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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atdt31_US
Ronson - your number 10 is my number 1-10.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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ValentinaGermania
Hi yellowcaty and all others,

I needed to think a bit about having such a list because mine would be extremly short compared to yours. I do not want you to feel bad about it.
But maybe that can give you some hope. Most of the points on your list are done here one year after WR. I can do most of them again.

What is left:
1. to be impulsive - not have to plan a day around meals - that is really better now but not perfect
2. To meet up with people/ go to work without having to put a fake smile on my face. That is still difficult for me and I avoid meeting people that know us from before AN.

That is all.
So what is my message?

You will sleep again in the nights.
You will read a book and enjoy it.
You will go on a holiday that you have planned.
You will have confidence in what you are doing again because you will see that it works.
You will only think about "what ifs" once a week. [wink]
You will be able to look at other peoples healthy kids without starting to cry.
You will have a nice time with your d again.
You will enjoy a meal. Really enjoy it.

I do all that today. So please do not lose hope.
Life is not the same after AN. But it is a good one.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Torie
Ronson and Yellowcaty,  I think the lists are a good idea.  Really, you will get to cross those things off in time.  The silver lining is that when you do, you will appreciate things in a way that was not previously possible. 

For example, a parent is happy to hear any of their kids laugh.  But to hear your ED-kid laugh, well, that takes "happy" to a whole new level.  My d has been well and truly wr for some years now, and it still makes my heart sing to hear her laugh.  (I find it curious that this is different than the regular happiness it brings to hear my other kids laugh.) 

You're doing great.  Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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HateEDwithApassion

Ten things I wish I could change:
1. Going back and getting true FBT when my D was 14 and totally compliant so our family was better equipped for the years after and now relapse.

2. Holding boundaries better when she was younger so I was better at it now when it's so much harder.
3. The difficult relationship we have now that's been damaged by the ED thinking.
4. That my younger D didn't have to do all her teen years with an older sister who was so self-destructive and she had to be the big sister instead. 
5. The strain and damage it caused to my marriage - words said, coping manners that hurt, etc.
6. The envy I feel for other families whose kids are now starting their second year of college and mine is in an IP and struggling to eat there. It's not that I don't want that for their kids, but wow - it hurts to watch other kids being happy and your kid miserable.
7. The hopelessness my D feels because she can't remember much of her life before ED thinking was her thinking.
8. Being able to make plans without always putting a caveat by it in my mind in case something happens.
9. The hopelessness I myself feel often but don't want to admit out loud.
10. That I was more confident and strong in fighting against some of her stupid therapists who told us to back off. 

19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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kazi67
Yellowcaty
This is a great idea!
So many of all the things I totally relate to
Your no 1, yellowcaty - I couldn’t even talk to anyone for a while on my return to work and listening to everyone’s complaining about this and that and I’m silently thinking all I want is my kid to eat that’s all I want - simple right?
2,7,10
We have had to put on hold or cancel so many plans [frown]
Ronson 1,5,9 and 10
HateED
5 and other family relationships [frown]
6 this was a BIGGY for me and 9 yes [frown]
Especially whilst d was IP omg part of my heart actually broke in that time!

But Yellowcaty I want to offer you, and others hope though, it DOES get better
I have mostly crossed all these things slowly off in the past 4-6 weeks my d is every week slowly but surely getting there and we are going on a trip!!
D and me, can’t bloody wait!!!!



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ValentinaGermania
One thing I would like to add that I forgot:

I want to have my friends and family back. This is something I cannot change and I would not be able to go back to the realtionship we had before AN hit us and they decided to cut us off, even if they would come and ask for apologize today. That is something which cannot be healed and I am still sad about that. I miss my former social life.

And then, while venting and being sad about that, I think:
Hey, you have new friends now. I have a new friend in England. I cannot pop around for tea when I want but I know she is there for me when I need her and she has an ear for me whenever I want. And she is a true friend because she likes me although we have AN in the house.
I have a new friend in US. I can write with her about politics and history and we do not talk about AN in every mail and it is kind of a "normal" friendship. I appreciate that a lot.

So although I am very sad about that my friends and family decided not to help us I am thankful and glad to have found you all here.
And be sure, there will be some time when I pop around for tea!!!

Tina72
Keep feeding. There is light at the end of the tunnel.
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mumofone
Hi YellowCatty,

I can relate so much with your list and also the lists of others and we are only early days in the process!

I was quite thankful for work as it let me think about something else for once and I have so lucky to have a great team who were so supportive when my fake smile slipped!

Personally I also wish to be able to have meals without counting the calories. We love food and eating out on our family, and now I even get stressed just going shopping as there is now no association of joy with food.

Number  on your list I can definitely relate too, we had to cancel a holiday too and still fighting to get our money back (although unlikely)

I know we will get there with this and I am sure you will do soon.

Stay positive [crazy]
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yellowcaty
Hi mumofone

The holiday was a real hard one for us as it is something the other children were really looking forward to. I think the are getting fed up of listening to their friends going on about the exciting summer they have all had. We were lucky that we knew before the final payment that there was no way we would be able to go so only lost the deposit. There was a point where we did think she might have been out of IP, but that was obviously very optimistic.

Number 11: To answer the phone to D without fear of how she will be. Usually it goes from one extreme to the other. (Tonight it lasted 2 mins 42 secs)

It does help to know that we are all in it together.

Sending hugs to you all
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