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scaredmom

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Reply with quote  #101 
[QUOTE=makeherwell

Been a very tough 3 days - looong meals, constant negoiatons etc.

H is going to take over for the day tomorrow so I can recharge. Schools back Monday so she has been more motivated today. Another weigh at clinic on Monday - I think we may have just maintained the gain!! We will know if she is cleared for school then too.

QUOTE]

When we were in the midst of refeeding, the negotiation part was so hard. I would get tricked into it and then did not realise until after, that it had happened. I found that taking a breath and "stepping back" in my mind to realise that I was negotiating and remembering that I should not negotiate (ie reflection in the moment) helped me.
Once I noticed I was negotiating with ED, I would feel calmer and then I would say in a neutral voice, that I would not discuss with Ed and then I would not speak at all. I would be silent and physically block her or say in a firm quiet voice, " Violence is not allowed." or " I don't speak with ED", etc..
It helped me to get my game face on. It calmed me and when I was calm, I think it helped D.
Hard to know what to do when in the moment though, there is no correct way to handle these extra-ordinary circumstances.

I am glad H is taking over and that you can take a break. Please do something you enjoy and have not done in a while.

XXX
Torie

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Reply with quote  #102 
Quote:
Originally Posted by makeherwell
Been a very tough 3 days - looong meals, constant negoiatons etc. It’s the lying and hiding that is doing my head in!! She gets up and spits out food or spits it down her top and won’t let me search. She flat out lies. I know it’s the ED but it’s driving me insane!


I'm so sorry - it is amazing how long three days can be.

With practice, you will learn how to avoid the negotiation.  I'm unsure what exactly is going on, but I wonder if you can develop a mantra like, "Here is your meal; please take a bite," followed the next time by, "It sounds like this is really hard; please take a bite."  I think the trick is to avoid being drawn into discussing options at all.

Can you follow her when she gets up to leave?

Can you say in a sympathetic voice when she spits food down her top, "I'm so sorry that you will have to have replacement of x to make up for the food you just lost" (or similar)?

I hope your h is good at intervening to prohibit these ED behaviors and really glad you will get a needed break.

Keep swimming. xx

-Torie

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

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Reply with quote  #103 
Thanks everyone. I will continue to be mindful and try to stop being dragged into negotiations. H did meals today while I worked (no rest for the wicked). She was calm and happy today which makes me suspect she was getting away with a fair bit!
Hibiscus, you are spot on when you say how they get all offended and angry when you check (even though you have just found food down the bra)! Drives me batty.
I do want her to go back to school (even though I’ll be up there for snack and lunch) for a break, so she stays connected and mostly importantly for leverage but I agree it might not be best thing???
I like the rule about underwear scaredmom but she is always freezing!! Summer here soon so hopefully less layers required.

Hope everyone is winning the good fight!!
Hibiscus

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Reply with quote  #104 
Hey makeherwell,
Buggar I thought u were having a day of rest not alternative place to work( although money is good!) It’s hard and I am like u re the lying, hate it. I know ed makes them but it is one of the things that pushes my buttons too. How was the weigh in, are u and d ok? Did she go back to school? We r in Sydney on holidays for a few days. Going ok but very wet! D has managed eating out but still restricted. Am worried about weight loss with all the walking but we r away from home so that is good.
XX
makeherwell

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Reply with quote  #105 
Wow, going away is a great step - so glad it’s going well. Shame about the rain but it’s still a beautiful place to visit.

Had a bad weigh in today - down 1kg. Shattered. I feel like the last 2 awful weeks were a waste. Doctor has given us another week to keep trying.

She is allowed to go to school for 1/2 days which thrilled my d. For the first time today she said she was over this illness and just wants to have her normal life back (no doctors appointments, missing out on social things etc). She had her snack, dinner, dessert and supper with no hiding or spitting. I won’t get my hopes up but I hope she can continue to fight alongside me!

Enjoy your trip!!
scaredmom

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Reply with quote  #106 

makeherwell,

This is  very encouraging post! No hiding and spitting-That is great. It is ok to get your hopes up high, you are doing well. Please enjoy this day!

XXX

makeherwell

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Reply with quote  #107 
Thanks scaredmom. It so much easier to be hopeful when there is no trickery. Do you think I go hard if she starts to slip back into old habits? The hospital still has the supplements on the ward for her.
scaredmom

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Reply with quote  #108 

I would like to reframe your question: You WILL keep going hard, do not let up. That way there can be no slip back to old habits.  It may help to think that she is hiding food etc.. that way you are always on it. Keeping  your guard up  is exhausting, but better to be vigilant, then have to back track.


You sound good!

XXX

Hibiscus

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Reply with quote  #109 
Hey makeherwell
How is it going with d and eating?
Not doing too good really myself. What started good turned bad re the holiday in Sydney. Was a relief to get home yesterday. Was stressful dragging my sullen d around Sydney, trying to make it fun and trying to not ruin my sisters holiday as well. Think it was ruined for her. I think that the evil ED voice gave d a really hard time away. Looked self conscious the whole time rarely smiled and showed minimal interest or enjoyment in anything. My sister doesn’t really understand what it’s like. D ate but fought me about snacks and especially about fluids when we were out, which was stressful and I didn’t often win with fluids when out because I couldn’t cause a big public scene. Lots of walking there and problem with exercise has now developed. D was on olanzapine which I think helped to begin with but then she started moving her legs the whole time. I think it started as restless legs but now it seems she is doing it deliberately.
Have just tried to speak to her about it. She hates me she says as I won’t let her be size she wants and am controlling her and don’t trust her. I know this is probably ED speaking but it is so hurtful today. Am exhausted from trying to manage the trip. Am angry with her for ruining it. Am upset that all that money was wasted. It was also a bit of a birthday present for me so angry that she can’t see beyond herself. Am upset and angry with myself cos I can’t find an ounce of compassion for her today. Am so over this. Can I leave my life cos I don’t want it anymore. Sorry I have to vent, cannot feel positive right now.
scaredmom

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Reply with quote  #110 

Quote:
Originally Posted by Hibiscus
Hey makeherwell
How is it going with d and eating?
Not doing too good really myself. What started good turned bad re the holiday in Sydney. Was a relief to get home yesterday. Was stressful dragging my sullen d around Sydney, trying to make it fun and trying to not ruin my sisters holiday as well. Think it was ruined for her. I think that the evil ED voice gave d a really hard time away. Looked self conscious the whole time rarely smiled and showed minimal interest or enjoyment in anything. My sister doesn’t really understand what it’s like. D ate but fought me about snacks and especially about fluids when we were out, which was stressful and I didn’t often win with fluids when out because I couldn’t cause a big public scene. Lots of walking there and problem with exercise has now developed. D was on olanzapine which I think helped to begin with but then she started moving her legs the whole time. I think it started as restless legs but now it seems she is doing it deliberately.
Have just tried to speak to her about it. She hates me she says as I won’t let her be size she wants and am controlling her and don’t trust her. I know this is probably ED speaking but it is so hurtful today. Am exhausted from trying to manage the trip. Am angry with her for ruining it. Am upset that all that money was wasted. It was also a bit of a birthday present for me so angry that she can’t see beyond herself. Am upset and angry with myself cos I can’t find an ounce of compassion for her today. Am so over this. Can I leave my life cos I don’t want it anymore. Sorry I have to vent, cannot feel positive right now.


Oh Hibiscus, 
I am sorry the holidays were so difficult. It is hard to travel with ED. Being back home and in her normal routine should help. These kids love the structure. 

As for her "hating" you. I agree it is ED. It is hurtful. When you are stressed, exhausted, had a not so good time, it is easy to feel sad and hurt. Please be kind to yourself at this sensitive time. Please hold onto the fact that next year will likely be so much better and that your birthday will be joyful. I could not celebrate anything at the beginning. It will come ,it really will.  So many have lived this yucky part and seen the "other" nice side, and you will too. 

It is ok to be upset with ED today. And it is important for you to be compassionate to yourself, then it will be easier to be compassionate to her. 
I wanted to escape too. Is there something you can do that you will enjoy? I had a great massage recently  and going to book another one. Be a bit selfish, take what you need out of your life, build it in on a regular basis. This is a stage in your life, this is NOT your life.


XXX

Torie

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Reply with quote  #111 
Welcome home, Hibiscus.  So sorry ED was such a jerk.  I hope tomorrow will be a better day. xx

-Torie

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Hibiscus

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Reply with quote  #112 
Thank you scaredmum, your post made me cry cos I needed some sympathy as I was busy feeling sorry for myself. I spent the day in bed, reading and crying when I felt like it. I finally started calming down this afternoon. I also spent some time reading Eva’s book which helped too. D not in a good state. I interrupted her exercising in the shower and she was crying after that although still rejecting me. Aligned her self with hubby today. And keeps to her room. Have started loading her food again. I guess the positive is that she is still eating at this stage.
Yes Torie, ED was a complete jerk and ruined our holiday. Tomorrow can only be better but have no great hopes of a good birthday.
It’s not my life it will get better, fingers crossed 🤞
Foodsupport_AUS

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Reply with quote  #113 
Sorry the holiday and break went so badly.    I am sure much of what your D is saying to you is ED. 

We all have times when we just get so cheesed off with ED for taking away those things that give us and other family members pleasure. We all end up grieving for those things we have lost. It will truly  get better with time, really it will. Your kind compassionate D will come back. She really can't see or hear anything but the ED at the moment. Have some victories against ED for your birthday, the more the better. 

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makeherwell

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Reply with quote  #114 
Hi Hibiscus 🌺

I’m sorry it was so hard. I can completely relate to ED ruining the holiday! Please vent here - you are so kind and supportive of others and you deserve all the sympathy in the world. This disease sucks - it drains everyone in its vortex. My favourite saying at the moment is “this too shall pass”. One day you’ll be back in Sydney and you’ll remember this trip and think “thank god things are better now”. .

We are still up and down but today I followed through! D was reverting to old habits of hiding and spitting so I took her in to the hospital for the supplement. She screamed and broke my lamp and then snatched the phone while I called the nurse but we still went in. She had a lot of Resource with little fuss at hospital but back home complained of sore stomach. I’m so proud of going - now she knows we will follow through. I will do it again tomorrow if I have too!!

Hibiscus, let us know how things are goingt. Thinking of you!
Foodsupport_AUS

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Reply with quote  #115 
 Well done makeherwell. It is frightening at times to stand up to ED. But that is a huge win for you. She/ED  will know that you will mean it next time and even better the resistance is likely to be less. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
tina72

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Reply with quote  #116 
"We are still up and down but today I followed through! D was reverting to old habits of hiding and spitting so I took her in to the hospital for the supplement. She screamed and broke my lamp and then snatched the phone while I called the nurse but we still went in. She had a lot of Resource with little fuss at hospital but back home complained of sore stomach. I’m so proud of going - now she knows we will follow through. I will do it again tomorrow if I have too!!"

makeherwell, I am SO PROUD of you!!! You were doing great!
Tina72

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tina72

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Reply with quote  #117 
Hibiscus,
that was not at all your fault and it is in my eyes impossible to have a nice holiday with ED at that state so you could have done nothing to avoid this.
Holiday is something for phase 2 or 3 and then still difficult enough. We had the first nearly relaxed holiday now after 18 months. It takes time but you will have nice holidays again.
TIna72

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makeherwell

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Reply with quote  #118 
How are you going, Hibiscus 🌺??
Hibiscus

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Reply with quote  #119 
Hey makeherwell.
Sorry disappeared down my own rabbit hole there for a few days. Thanks for checking up on me.
Firstly thanks tina72 and food support for your comments,
Thanks also makeherwell. Great going with the hospital trip. It takes guts but u did it, hope you are now reaping the benefits for yourself and D . 👍
My D is still eating but secretly trying to exercise. I fully believe that she has lost weight and am going to try to get her weighed tomorrow if I can, it has all gone wrong in the space of a week. Before we went away she was eating well and becoming happier. D has also slowed eating and taking mouse bites it seems. Google history revealed she has been searching up diet tips and sneaky exercises for weight loss. Well looks like that worked, guesswork but think I am right, sadly. Combined with all the walking when on holidays. I Have started loading her food again to try to counteract this. Have spoken to her but she is under ED thoughts and wants to be thinner. Have asked her to stop so I can get this right, also explained possibly that I will supervise at all times including showers etc( but honestly I don’t want to) Not much else to say except big sigh 😔. I know it is 1 step forward 1 step back with ED ( as most of us do I guess) but honestly thought we were getting somewhere. Just have to keep plugging I guess.
Sorry to be a downer. Looking forward to school return this week, so there is always an up! Lol
scaredmom

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Reply with quote  #120 
Hibiscus,
You ARE getting somewhere. You figured out where there may have been a gap and you are closing the loopholes. I do think you need to follow through with the supervision in the shower etc. That will really help her. I have seen on this forum, that when the parents really watched ED supervised or stopped exercise etc... the child was truly grateful. And as for one step forward and one step back, you are really 2 steps ahead, because you are on top of ED. Take heart you are doing great , you really are. Hard to see in the moment, I know.
XXX
scaredmom

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Reply with quote  #121 
Makeherwell,
Taking her to the hospital for supplements was the best thing to do! It has a couple of positives. You showed ED, you got her fed, you gained a ton of strength and like you said, you will do it again if needed. Knowing I had a plan for different situations helped my confidence to help d. I think that is the trick. At the beginning we don’t know what to do or how to do it. You have gained more than you know from this. And so it will get better and better.
XXX
tina72

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Reply with quote  #122 
Hi Hibiscus,
scaredmom is right, you are getting somewhere. You recognized that there is secret exercise (and can now do something against it) and you recognized that internet searching (and can now block those sides). ED will try a lot of tricks in the next weeks to get rid of you. But ED will not win. And if you need to supervise 24/7 and in the shower you will do that.
It is totally normal that there are good weeks and less good weeks. But the good weeks will get more and more by time. A bad day feels somehow worser after 4 good days, I know. But please DO NOT GIVE UP HOPE. It will get better.
Tina72

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makeherwell

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Reply with quote  #123 
Hi Hibiscus, I hope things are better today? Did you get your d weighed? We all feel like we are just plugging away but I take hope from the recovery stories here.

The sneaky exercise (and the lying) is heartbreaking. I caught my d today too. I had to go out quickly to pick up my 8yo from school and my d was home alone. I had a sneaking suspicion she was going to exercise so I doubled back and caught her doing crunches. Sigh... She swears it’s the first time (😁😏) but doubtful. She said it was because she put on weight yesterday (taking her to the hospital must have helped and she put in 1kg this week!). So, now bedroom door must stay open at all times and no staying home alone. She was actually embarrassed and said sorry and has agreed to the new conditions.

Let us know how’s it going?? You are doing an amazing job. You got her on the right path before the holiday and I know you can do it again.
tina72

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Reply with quote  #124 
" She said it was because she put on weight yesterday "
All this lying ended here when my d was blind weighed. They have so much stress with the weighings and try to work against you when they gain 50 g and it is really better when they do not know their weight any more. Worth a try?
Tina72

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scaredmom

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Reply with quote  #125 

Quote:
Originally Posted by makeherwell

The sneaky exercise (and the lying) is heartbreaking. I caught my d today too. I had to go out quickly to pick up my 8yo from school and my d was home alone. I had a sneaking suspicion she was going to exercise so I doubled back and caught her doing crunches. Sigh... She swears it’s the first time (😁😏) but doubtful. She said it was because she put on weight yesterday (taking her to the hospital must have helped and she put in 1kg this week!). So, now bedroom door must stay open at all times and no staying home alone. She was actually embarrassed and said sorry and has agreed to the new conditions.
 


makeherwell, 
You have great instincts! You figured it out, and now it will  not happen under your watchful eye again! Great catch and great plan!

XXX

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