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floating

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Reply with quote  #1 
Hi guys starting a new thread as last one getting bit heavy...................[smile]

D is back to hating me as care stepped up and ED raging

While this is positive and we have all experienced it , it is so blinkin hard to watch and experience isn't it
The poor kids have to feel this tremendous bullying and pain

I have been through this previous in CAMHS and other IP unit for extended periods but it is a few months since she has rejected me and will not let me touch her..........we went from cuddles, hairbrushing and plaiting for my touch to overnight"I hate you"

But yes old hand now and know it is a good sign........boy does it still hurt

Hope all are getting through.............xxx

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joysomeday

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Reply with quote  #2 
Hi, I have been following and following, and you are AMAZING,!  Seems like you have everyone on the run with your advocacy for your daughter.  And yes, the reversal of affection, no matter how typical, still stings like heck.  I have such mixed emotions, elated that her care is hopefully starting to go in the correct direction and that a transfer will be forthcoming AND that all your efforts are shining a light and gardening a wealth of interest and concern on the lack of services and the ineptitude (being kind here) of the the care team,  however I am saddened, frustrated and furious over the lengths that you needed to go-multiple times, to obtain  the care your daughter deserves-in my opinion it is neglect, and malpractice.

If your daughter has just a smidgen of your fortitude and fight, and clearly she does to have written that letter, with the proper care she will move forward and get to life she wrote about, wants and deserves.  Keeping you all in my thoughts, crossing my fingers and toes, that common sense, medical necessity and your work prevail in short order.
Torie

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Reply with quote  #3 
I hate to say I'm glad to hear Ed is raging, but ... as you say it really is a sign that progress is FINALLY being made. Sure hope the positives continue apace.

Thinking of you. Always. 

Hugs,

-Torie

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

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Reply with quote  #4 
joysomeday........great name

Thank you for uplifting message

I am not amazing just the same as any mother....love has no boundaries
needs must through lack of progress and facilities....but kind of you to say

I never thought or wished to go public as very shy and private person

After 8 days only now are UTV assuring me that our case that was filmed 8 days ago will be aired tonight after cancelling twice last week......I have refused permission as now not relevant.....

I think it is cruel and painful that parents have to fight so hard when watching their child it torment.......anyway....too sad to explain

xx


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floating

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Reply with quote  #5 
Quote:
Originally Posted by Torie
I hate to say I'm glad to hear Ed is raging, but ... as you say it really is a sign that progress is FINALLY being made. Sure hope the positives continue apace.

Thinking of you. Always. 

Hugs,

-Torie



Yes Torie D was far too content IP last 3 weeks
Soon as the raging came I knew ED was MAD!!!

Unfortunately for forst time in 7 months she refused to see me or answer texts or phone but I am a old hand at this and do not take it personally just par of the course

But breaks my heart she is in pain from the nasty bully

Thanks Torie x

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mjkz

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Reply with quote  #6 
No selling yourself short here.  Your health has not been good and you still have been pulling off amazing things for your daughter.  Glad to hear ED is raging-about darn time.

Take some time off for yourself.  When my daughter is inpatient, that is the time I get to recharge my own batteries, take care of myself and get prepared for the upcoming battle that I know is coming when she is discharged.  She has support inpatient and at the very least they will keep her safe so take some time off for you.[wink]
floating

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Reply with quote  #7 
2nd day no access to daughter............told me to not get close and live my life so the end would be easier for me...........

Did I listen to nasty ED, no, just dropped clothes at reception.............

Got on bus home and guess what real D texts and said mum just come in.............blinkin heck was literally home bless her
so back tomorrow to visit

She has sent everything home from her room via sister .............hence why a bagful of clothes went back today!!!

xx

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deenl

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Reply with quote  #8 
Hi floating,

It really is an emotional rollercoaster. I used to feel a bit irritated at the wasted journey (btw, I often brought a book and sat in the cafe for an hour just in case he changed his mind! If not, at least I got an hour of chill time [wink] [wink] We used to get bedtime phone calls from our real son. Sometimes sobbing down the phone, sometimes just lists of things he needed and sometimes just nice. As I am sure you are doing, I tried to use my most normal and affectionate voice. It soothed my heart for sure.

I hope so much that your d can see you tomorrow. And I hope that there is some improvement in her condition.

Wishing you continued strength and some peace,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Sotired

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Reply with quote  #9 
I know this roller coaster well-just do what you can hon.i think deenls suggestion is excellent re just taking a break and then coming back.sometimes I just went for a coffee and then came back.if d was still foul then I left her to it and would just text that I loved her and would see her tomorrow.
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Sotired42
floating

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Reply with quote  #10 
I know guys the first few inpatient stays many moons ago I use to get so upset and emotional,,,,,was awful

Next few did as you suggested left her little letters, gifts....went for coffee etc

2 years down the line amazingly today I did not take it personally.......knew it was nasty ED as now being challenged and thought O well, my D, real D was hugging me up till 2 days ago, letting me play with her hair just to feel my touch etc
So was fine with it,,,,,,,was surprised I was not upset.....

We learn don't we not to let ED invade what we know is IT at play and it does not win that round!!!!

By way at meeting with team today and D will be Bolus fed from monday if no weight gain...so that's a move forward


xxxx

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floating

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Reply with quote  #11 
ED raging was certainly a good sign,,,,,,,,,,,,,,,,,she gained a kilo on the step up of care in 4 days!!!!!

AND is not refusing visits in fact got me to re plait her hair 3 times as you enjoyed my touch,
Kisses and hugs too bless her
So I am a little less anxious 

xx

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deenl

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Reply with quote  #12 
A L L E L U I A Trumpets, chorus, etc.

I hope there is continued progress on the physical recovery and many more special moments to savour.

Best wishes,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
floating

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Posts: 877
Reply with quote  #13 
I know Deenl certainly helped my anxiety..........today and yesterday are better days for family..........thanks

And Louise a reporter kept our story alive in examiner on Saturday
A ED sufferer herself bless


http://www.irishexaminer.com/viewpoints/columnists/louise-oneill/the-conflation-of-anorexia-with-vanity-is-misguided-believe-me-there-is-no-vanity-attached-to-starving-yourself-393106.html

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Torie

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Reply with quote  #14 
Quote:
Originally Posted by deenl
A L L E L U I A Trumpets, chorus, etc.

I hope there is continued progress on the physical recovery and many more special moments to savour.

Best wishes,
D


I can't say it any better than that! You rock, Floating.

Hugs,

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
K63

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Reply with quote  #15 
Hi floating what a relief this is at last just goes to show the 1-1 previously wasn't effective enough the step up is. It's good that she is enjoying having you do her hair this make all the fighting worth it . Take deep breaths and try to get some rest we will keep praying for this to continue
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
pipes2406

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Reply with quote  #16 
Hi Floating - how amazing that your d has so much strength to fight that raging ED and let you in. It's an amazing feeling isn't it when they let you close after so many rejections. We're going through the same thing with our d at the moment - she is being ng fed in IP and the ED has been really tormenting her in the last few weeks. But after a serious SH episode on Weds, she let me visit on Thurs and just curled up in my lap. On Friday she let me dry and brush her hair and, wonder of all wonders, yesterday she let her dad visit!!!

I've felt on cloud 9 all weekend ( with only a residual nagging worry in the background).

Keep on fighting for your d - you are amazing, don't ever doubt that!
iHateED

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Reply with quote  #17 
So happy to read these updates today.  I hope the nutrition keeps going in and she continues to allow you to be affectionate.    Great article by Louise and great that your story is continuing to get attention in the media.    Please take care of yourself as best you can!
floating

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Reply with quote  #18 
k63 I asked lots of time. please have 1-1 at the table to stop hiding of food instead of across the room...............but they eventually follow my advise but it takes ages to give in, never like to take parental advise. but its all in the letters i give them, must be reading them now and implementing !!!!

x

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floating

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Reply with quote  #19 
Ah pipes so glad your child is letting you and her dad in to
Boy it is good for our mental health when they fight nasty ED and let us in once in a while isn't it!!!!

We will get there

Hope this is a good week for you and your family,,,,,,,,,,,,xxx



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sunnyday

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Reply with quote  #20 

So, so happy to hear about all the glimmers of progress....yippee!  It does indeed sound like somebody may have finally started to read your letters and the background information provided to the media people.  I know I linked a few informative sights with good information to help educate anybody who cared to read it....yeah!  Plus you have sent tons of information too!

So sorry you are getting the full brunt of ED anger here and there....it isn't easy to take it....but if you look at it like progress...then it is all good.  One really big positive is your daughter hasn't had ED for long in the whole scheme of things....only two years?  Hoping you can get weight restoration and nutritional stability fairly quickly, keep it and then concentrate on skills building.  There is so much hope...your lovely d is still there under nasty ED.  I really, really hope this situation moves forward quickly...

You will have good and bad ED days...but any day the weight trends forward...is a positive.

You do indeed "rock" as a Mom....great work![smile]


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Daughter diagnosed 2010 (9th grade) with AN/Binge/Purge.  D. had brewing ED thoughts as early as 4th grade. Constant battle with ED from 2010-present.  Co-morbid anxiety & depression & suicidal thoughts & self-harm.  Most recently in intense DBT/ED program outpatient . Weight restored but not happy about it.
sk8r31

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Reply with quote  #21 
Really, really happy to read a more positive post, floating!!  So glad to hear that weight is finally going on, now that loopholes are firmly closed.

You really are a rock start to have persevered for so long...and that finally the powers that be are sitting up and taking notice...and reading and getting a clue!!!

Enjoy the lovely moments with your d....brushing, braiding hair can be so soothing for both of you!

Sending hugs, and many warm wishes for continued progress.



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

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Reply with quote  #22 
Guys she lost the flipping kilo gain on weight-in this morning.
Gain only lasted 3 days

please pray and send me strength for today as I have to do a small thing but big deal for me at 4pm today

Thanks as always............you are all my rock

xx


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K63

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Reply with quote  #23 
Hi Floating that's a shame hope they go ahead and NG now is that their plan . Are you doing the program this pm best of luck you are amazing but please take care of yourself this is too much to handle . Thinking of you .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
Sotired

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Reply with quote  #24 
I had a horrible feeling that that kg was waterloading-my d was a pro at this, I never knew how she managed it but she always did.if the same thing happens again-and it almost certainly will(once they start this trick again they stay with it) then just tell her that you are going to take a kg off for any weight gain to allow for water loading.our ed doc could tell pretty quickly,just got d to lie down and palpaited tummy and knew straight off about the water loading.
I'm sorry hon,it devasting to have loopholes still open that in all likelihood you can do nothing about.(though if you can that's excellent).
A big hug your way,

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Sotired42
Torie

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Reply with quote  #25 
Thinking of you, floating. With you in spirit. 

hugs,

-Torie

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