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tina72

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Reply with quote  #76 
Hi wheresmywand,
sorry that it is getting harder at the moment. ED sees that you are the enemy because there is progress with weight and that leads to harder battles at the moment. It will get better when you stay strict and confident. You can do that. We all thought we could not, but we could. Keep on going.
I didn´t really understand the pizza sauce problem because of lack of language I think but if she didn´t want to eat it because of sugar in it that is ED and you should serve it with additional sugar in it!
You are a great mom and I am sure your parenting style is just as good as ours. No parenting style in the world is prepared for this ED war. You will win this battle. Look back what you have achieved up to now. She is not in a dangerous situation any more. She is eating fear food. Yes, it is still hard and not the life you deserve to have. But you will get that life back if you keep on swimming.
Send you a huge hug!
Tina72
Torie

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Reply with quote  #77 
Quote:
Originally Posted by wheresmywand
somewhere along the way I lost my confidence with parenting and I will have to find some sort of help to work through that


Oh yes, this vile illness shakes our confidence to the core!  The good thing is: We don't actually need to BE confident; we just need to ACT confident.  It sounds like you did just that because YOUR D ATE THE PIZZA!!!  Woohoo!

Wheresmywand: 1
ED: 0

It doesn't matter what she thinks or what she says or what you think - it just matters that she eats what she needs.  

It gets easier - it really does.  You're killing it. xx

-Torie

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

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Reply with quote  #78 
Thanks you guys,
 xxxx

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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
tina72

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Reply with quote  #79 
Hi wheresmywand,
how are you doing?
I am thinking at you.
Tina72
wheresmywand

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Reply with quote  #80 
Hi all,
Tina, thanks for checking in with me. Sorry for late reply we have been away with my Mum for that week I mentioned a long time ago. I saw the email there on my ph (it's too hard to reply on a small screen) but I want to tell you that it made me feel good to know you were thinking of me, i do the same about you and others on here. Today especially I feel very alone and the only thing that has made me pull myself together is knowing I'm not, and there are others out there who understand.
I had been meaning to do an update for awhile so I guess this is as good a time as any.

The week away went okay - the place was self-catering so we were able to have nearly normal meals - not as good as home of course because we were out and about but no weight loss. It was tricky because 2 of my brothers were there and said to me there's nothing wrong with her (she is looking well and has a sense of humour etc). They just didn't notice we had the same thing for dinner every night and the 2 times we ate out for lunch involved endless walking the streets to look for something she would eat. So, never mind, my Mum did witness a very long dark mood from having to eat half a hot cross bun but that was on the last day so overall better than I thought. 

I'm just having a sad day because weight gain has really slowed down (66.8kg now - 2 weeks ago it was 67.8 but I think that was false somehow because last week was 66.5). Anyway we have been blind weighing but today she shouted at me to stop covering and kicked my foot out of the way and into the side of the shower - it really hurt in both ways, she's not usually like this. And now she knows her weight and I'm terrified she'll refuse to keep eating as much. She's gone off on the farm with her oblivious father and without having her morning tea. Maybe it won't be so bad when she gets back but I still became a sobbing wreck of self-pity and anger directed at my 'selfish' daughter (yes, I know but I still felt it), until I dragged myself up here to write this.

I think I need full on pants kicking please!! Don't hold back.

I have got so much stronger but fear I still have a bit of this passive 'waiting for a wand' thing going on - and that wand I think is full weight restoration, whatever that will be. If and when this does happen will food magically again become something that is for fuel and enjoyment, and not something to be judged, categorised, and feared?
I'm so full of 'what if' anxiety again at the moment, a lot to do with fear foods and normalising eating patterns. Sometimes I feel it might never be any different. For example we have had burgers and chips (vege burgers of course and chips having to be counted) 5 times now, but it feels as though we could do this 50 times and when she leaves here she will still never choose this type of food. Does that matter? Deep down I know it does. At the worst times I tell myself all I can do is keep going for the rest of this year and hope by the end of it she has come to a place that is safer, freer, and more self aware. It kills me to think this because what I really want is for this sh.. f.. disease to be gone forever, but here's where I need a boost ... I'm losing hope that it will be. 

I am also afraid my fear food 'program' is just not fast enough or regular enough and have to keep reminding myself not to be afraid of what ED is afraid of.
I'll finish with some positives. Ok - 6.8 kgs up from when I first posted on here (this time round). Ice cream, both home made and brought has been had 5 times, desserts (still only 4 different ones) are now accepted and last night I got a 'that was yum thanks Mum'. Pasta has gone from almost never to a regular dinner, still gets negative comments though but I do take less notice of this now. There are a few other things that are a bit less feared, muffins for example. 
Well, they are home.
Good to talk to you, my eyes have dried and I must go down and check on morning tea.
Xx Sending thanks and love to all



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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
Foodsupport_AUS

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Reply with quote  #81 
You are doing amazingly well. 
Every time you push those fear foods you are slowly resetting her brain and her ability to overcome fear. It is very slow and very incremental. Of course you have doubts we all do. Made all the harder by those people who externally look at someone who visually appears healthy and cannot in anyway see how ill that person may be. When my D was skeletal people could see that, but particularly since there is often weight gain around the face first that perception can rapidly change despite low weight. 

Will weight gain be enough? It is hard to say. Weight gain of course is only the first step in recovery. For some the thoughts diminish, others have to still actively work on their thoughts and behaviours in the longer term. At this point you can only push on and offer her the support she needs.  

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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.
wheresmywand

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Reply with quote  #82 
Hi FS, thank you for quick reply and support.

I made a mistake it is 5.8kgs up not 6.8

I'm wondering if CBT or DBT would help at this stage (I actually don't even know what DBT is but I've read it on here [wink]). I find it hard to try and talk to her about not categorising foods as good or bad etc and how important it is to have a full range of foods because she gets so defensive and immediately goes to the 'they're not fear foods it's just how I want to eat' thing. So I only talk to her about this stuff very rarely and without much success. I wonder if there are any other Kiwis out there from around Hamilton who have any experience with good therapists there (or even Auckland if you think they're worth the 4 hour trip). I didn't have any luck with any practitioners before but having someone helpful at this stage would be a great boost.

P.S She came in and had snack as usual but when I mentioned having sandwich for lunch because it needs to be ticked off and choosing next 3 FF's she said she wouldn't and nobody signed the contract except me. Sigh. 

One more question - can anyone tell me the approximate cost of the week long program in San Diego that has been mentioned? Thank you x


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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
tina72

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Reply with quote  #83 
Hi wheresmywand,
so glad to hear from you and it is super that the holiday with your mum went well. No weight loss! That is great! Eating out!!! You need to see the positive things, forget what your brothers said. They don´t live with her 24/7.
I do fear this "accident" with blind weighing every time she is going there (it is at GP in our case). Can you mask the numbers the next time and not only cover? Can you buy a scale with a separate funk display? So she cannot see it also she is kicking you? I know that hurts, I understand you. But remember: it was not your d, it was ED kicking you.
No, you do not need any "full on pants kicking", you just need some power and hope. Hey, she came in for snack as usual and she said something tasted good!
"If and when this does happen will food magically again become something that is for fuel and enjoyment, and not something to be judged, categorised, and feared?"
No. Not magically and automatically, but with time. There will come a time when you can talk about all that. When ED behaviour are just flashbacks. Here it began to happen 4 months after WR and is now in full process 8 months after WR.
Fear food becomes normal by time and she will eat it even outside when her brain doesn´t tell her its forbidden any more. But it takes time.
Weight gain is no straight line. There are ups and downs. The body takes what he needs and sometimes it is more and sometimes less. It is normal that you have time with less or no weight gain. Increase if possible until you see weight gain again.
CBT (I don´t know what DBT is, too [wink]) will not change anything at that state. You need to want to change something and you need to work with the therapist on that change for that. There will come a time when you can talk to her about all that and how she can be aware of relapses and how she can fight fear food. With brain recovery there will be that time. Please have a little hope and be a little patient.
I send you a big hug across the ocean!
Tina72
toothfairy

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Reply with quote  #84 
"One more question - can anyone tell me the approximate cost of the week long program in San Diego that has been mentioned? Thank you x"

Hi There,
The UCSD one week family intensive is $5000 plus your flights and hotel.



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sk8r31

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Reply with quote  #85 
Our insurance paid 100% for the UCSD program, after initially saying it would only cover 60%.  You will get good guidance from the UCSD program in terms of insurance coverage, and they will help you to fight for full coverage if necessary.

Yes, you still have flights, accommodations & food to cover for the week....but honestly, that's a drop in the bucket compared to time spent in a residential treatment program.  

Most importantly, you'll gain the skills and tools to help you 'fight the good fight' against ED.  Our d gained 2.5 lbs. during the week....we knew we could keep up the momentum following the week with all the info and tools we learned.

Well worth calling an intake specialist or program therapist to determine whether this program would be a good fit for your family.

Warmly,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Torie

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Reply with quote  #86 
Quote:
Originally Posted by wheresmywand
last night I got a 'that was yum thanks Mum'. 
my 

Oh my gosh, she said WHAT?!?  Do you have some mechanism for journaling so you can keep track of the progress - it's like watching your toddler grow - when you are with them all the time, it's hard to see the change.

You might want to read some of PsychoMom's threads if she didn't delete them all.  She kept asking and asking if her d would EVER do this or EVER do that, and eventually it all happened and her d was off to university.

You're right of course that you do need to keep your big girl pants close at hand to deal with all the ongoing garbage.  It is so tiresome, so soul-crushing,  but you have to keep grinding Ed down day by day.  I don't think you should stand for being kicked.  Did you let her know you will need to ring up the police if that continues?

Can you require her to take two handfuls of chips instead of counting them?

Some here have bought scales that don't show the weight at all - instead the scale sends it to their phone or some newfangled thing like that.  

Sorry this post is so haphazard.  What I mean to say is that WE can see the progress even when it's hard to see when it's so up close and personal for you.  

You're doing great.  Really.  This hero's work is for the birds, though.

Keep swimming.  xx

-Torie

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

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Reply with quote  #87 
Hi TF, sk8er and Torie, nice to hear you,

Thanks TF and sk8er for the UCSD info, that is a lot for a week but I see what you mean sk8er - If it means actual, real progress with tools to help the whole family then it must be worth every penny, and I know it was for you and many others. I don't think we have that kind of insurance though , it's different here in NZ. My husband and I do have private health insurance (which isn't compulsory here as I think maybe it sort of is for you?) but it doesn't cover our family. I would be happy to pay that much to save more years of her (and our) lives being stuck, if we cannot make progress with what we're doing. Yesterday was one of those days and I really felt I needed that kind of boost and help .. but, funny, I don't want to jinx it but sometimes the hardest times seem to come before a little tiny nudge in the right direction and just tonight I'm wondering if we might be doing ok. Man, I hope Murphy isn't listening!

I was so worried yesterday when d found out her weight. It has been my biggest fear all along, and I could see her attitude changing straight away. So I wrote a big long text to her feeling I had nothing to lose, about why doesn't she follow the blogs of Tabitha Farrar or A Hunger Artist on recovery, and see what they have to sy about full WR, or research set point theory, state not weight etc. Also about how it was hard for me but I keep going because I believe full recovery is possible and not negotiable (I didn't feel that at that point[biggrin]), basically that she needs more weight and we need to continue challenging ED behaviours including categorising food, fear foods, counting and restricting etc etc blah blah. Well maybe it was just because I was so upset but the attitude is gone today. She's certainly not running to the fridge for ice cream or anything but she hasn't tried to cut down either and I got another 'yum' at dinner. In short, I think (hope) she is trusting me that I know what I'm doing with the weight. She would not choose her next 3 FF's when I asked her again today - this seems incredibly hard for her - so I wrote 3 down off the list and asked if she wanted to change them, she just grumpily shrugged so I took that as an OK and that's what I'll do from now on if she doesn't engage. Corn chips are up this week and that will be massive for her but something she used to love. 

Thanks Torie, you've really made me feel so much better and helped me to see with new eyes and new hope. The chips suggestion is a really good one, I'll try that next time. No I didn't mention police, I did say it hurt but she just scoffed which hurt more. I'm willing to let it go this time, it was very uncharacteristic. I don't know what I'll do when the next weigh is due, now that she's seen it I wonder if there's any point hiding it again. I'll feel my way towards that as the week goes on.

Love and thanks xx


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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
Torie

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Reply with quote  #88 
Quote:
Originally Posted by wheresmywand
 She would not choose her next 3 FF's when I asked her again today - this seems incredibly hard for her - so I wrote 3 down off the list and asked if she wanted to change them, she just grumpily shrugged so I took that as an OK and that's what I'll do from now on if she doesn't engage 
 

Good work!  It doesn't matter if she chooses the FFs - it only matters that she eats them.

Quote:
Originally Posted by wheresmywand
  No I didn't mention police, I did say it hurt but she just scoffed which hurt more. I'm willing to let it go this time, it was very uncharacteristic.


It wasn't your real d who kicked you - it was Ed.  Your real d is probably mortified that she did that, if she even remembers.  It is a kindness to your d to make sure she doesn't keep getting violent because, again, that's not something your real d would do.  I can see just dropping it since it was only this one time, but if you get the sense that she is tending toward violence, I would make sure she knows that you will stop her (by calling the police) even if she can't stop herself.

Keep up the good work!  xx

-Torie

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

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Reply with quote  #89 
P.S. One thing I learned here that was a big help was using the word "normal."  As in:

"It isn't normal to count the chips."

She may or may not want to be "healthy" and she may or may not want to recover, but it's a good bet she wants to be "normal." xx

-Torie

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

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Reply with quote  #90 
That's a good one Torie, I'll keep it in mind
Xx

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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
sk8r31

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Reply with quote  #91 
Sounds like there are baby steps moving in the right direction!  I often found it was easier to begin a difficult conversation by writing it out first...and sending an email is a great start.  It allows your d to 'sit' with the info for a bit, without a huge reaction, as might happen if you start a discussion right off the bat.

I found that my d sometimes would 'come around' after reading an email or text more easily.  Not to say that it was ever very easy....just a little easier.

We eventually went to weigh-ins at home on a weekly basis, and my d wrote down the info on a chart she created.  My job was not to react...we both knew what needed to happen if weight was down a bit or if there was no increase.  It desensitized the weighing and made it easier than going to the doc's office every week.  This doesn't work for everyone, and it also wouldn't have worked at the beginning of our ED journey, but it did work when we were further along.

Great that you helped with choosing the fear foods.  As one doc explained to us at the UCSD program, sometimes it is just too confusing and frightening to have to make the choices...so we as parents step in when needed.  That is what you did...great work.

Hang in there!

Warmly,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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