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strawdog Show full post »
strawdog
Oh and she did at the start of lock down acknowledge that the ED was coming back a bit - it was hard to hear it but at least she was confiding in us. Now I think the ED is stronger and she is going into denial 😞
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mfab12
ED really is putting a battle on. I'm thinking it's a postive she has acknowledged at some point. 

I'm learning that is often when things improve abit the ED just waits in the background. 

I think it must feel disappointing for them that they feel that they've done so much and we want them to do more, battle more when they feel they can function ok as things are. Sadly, we know that will not last if not addressed fully, or is definitely a longer battle. 

If it's any comfort I usually find the outbursts are awful and I follow up with lots of 'i love you and I'm going to do the best I can for you' 'I will support you but I won't ignore it for you' . Nearly always when my d has dipped she comes up and a step forward each time. But when you are going through it, it's mentally exhausting and heartbreaking, desperate to know what, how and when to say anything. 

I'm sure there are many more experienced than me people on here who may be able to advise, but I feel and share your pain. 
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strawdog
Thankyou. It’s always good to come on here and know you’re not alone. 
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mfab12
It is so helpful and a life line at times, especially in those first 2 months of FBT, I'll always be thankful for the support. 
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Aefw001
Hello Strawdog 🙂
COVID has made recovery both easier and more challenging for our family--easier in that my 17yo has been re-feeding at home and at a treatment center and reached WR without having to deal with the social anxiety of returning to school in person with a larger body yet but so much more difficult in terms of limited time-occupying activities to keep the ED thoughts at bay.  My daughter was discharged from an ED treatment center 3 weeks ago and they worked with us to write a levels system for our daughter based on her behavior--ED & other--that grants her added privileges etc and more independence gradually as she moves up in the levels.  One concept they emphasized to us was that there WILL be lapses--and we saw that on her first day home when she had the opportunity hide food and did so--and that if we are able to "catch" these lapses by staying vigilant and holding the structure around meals/snacks and deal with lapses as they come up, they will be much less likely to evolve into a full re-lapse.  They had her write her own recovery plan which included her tips for us on red flags that she may be restricting or dealing with other ED behaviors which I found very helpful.  She seemed to grasp the difference between lapse and re-lapse and I think found it comforting that we did not expect her to be perfect in her recovery--and asked her not to expect perfection from us on meal plan execution and saying the right thing all the time--but that we do expect her to communicate when she's struggling and/or engaging in ED behaviors.  I have emphasized to her that nothing but FULL RECOVERY is an option.  We are not doing halfway, where she's WR but living with acute body distress and can't eat intuitively.  Reading the posts on this site I know the path to full recovery will take longer than any of us can imagine tolerating and that it will be filled with lows and curves we don't see coming and that fills me with dread.  But as someone who had her own ED receive little treatment when I was a similar age and then struggled with aspects of it for decades afterward, I will do everything in my power to spare my daughter the same fate.  Hugs and support for continuing the good fight against this insidious illness. 
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strawdog
Aefw001 wrote:
 She seemed to grasp the difference between lapse and re-lapse and I think found it comforting that we did not expect her to be perfect in her recovery--and asked her not to expect perfection from us on meal plan execution and saying the right thing all the time--but that we do expect her to communicate when she's struggling and/or engaging in ED behaviors.  I have emphasized to her that nothing but FULL RECOVERY is an option.  We are not doing halfway, where she's WR but living with acute body distress and can't eat intuitively.  Reading the posts on this site I know the path to full recovery will take longer than any of us can imagine tolerating and that it will be filled with lows and curves we don't see coming and that fills me with dread.  But as someone who had her own ED receive little treatment when I was a similar age and then struggled with aspects of it for decades afterward, I will do everything in my power to spare my daughter the same fate.  Hugs and support for continuing the good fight against this insidious illness. 


Thankyou for sharing your experiences - it is good that you communicate - that is our biggest problem. She doesn't want to talk about it ever really, She was told in Camhs that she was more of a doer than a thinker and that's our issue. When things go wrong as you say they are bound to do we can never sit and talk about why and what to do moving forward. Instead poor food choices and behaviors are ignored/tolerated until things build to a head and then a firecracker goes off! After this last ones I sent her the youtube clips as mfab12 had suggested hoping it might spark a discussion about being in recovery vs full recovery but she never watched them and we have never talked about it. Will try when the time is right. Her sister says she is in denial because she thought she was clear of the illness and maybe it's going to take a while to acknowledge there will be backwards step and relapses along the way and that this is a long battle to be fully free of it. Its upsetting for us all to acknowledge this but the soon she does anyway the sooner we can start on the path to FULL recovery. We might not ever get there but we will never stop trying!
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Torie
strawdog wrote:
Hi All

My d has been WR for about 10 months but ...  its always a constant battle to keep her on the right track and seem to be constantly pushing her to make the right food choices.... in other ways I can definitely see her ED on her shoulder. ... this morning I know she hasn't had enough extra before she goes out for her run but If I confront her she will get mad with me. I know that is ED behavior but I can't constantly watch her at 17 to make sure she eats what she should - she'll be an adult in October ! She will always pick the lowest calorie option still and her snacking in between meals will get dropped given half the chance.  She can never see that she is different from her sister and/or friends in that she is in recovery from an awful illness and therefore maybe has to eat differently in order that she doesn't regress or lose too much weight. She is back at work waitressing doing long shifts and then still wanting to run on those days. I know she wouldn't eat enough to compensate. I know she is going to lose some weight this summer with how she is operating but I don't know whether to weigh her in at the end of August to show her that she has or just leave it and see if it comes up in the winter. Camhs said not to weigh her post discharge. I know work is good for her as it gives her a sense of purpose and I know on days when she runs she feels better. When we were in lockdown her ED came back a bit - i know because she told me which was good - she said she has too much time to sit around thinking and self analysing. Now she is busy again she is better overall mentally I'd say but not making the right food choices at times. She wants to go to uni the next academic year but she is no way ready to make sensible choices with food as it stands. Personally I feel damaged by her ED in that I can never let go of the worry of it coming back - I can never let go of her to full trust without overly worrying and feel that will always be the way. I know Covid has made so many things much worse but sadly I think it's set her recovery back hugely as well. I just need some positive hope that this isn't as good as its going to get with her and food and that I shouldn't be intervening more to control intake and monitor weight. She has told her sister that my controlling her is holding her back from making a full recovery - perhaps she needs to make mistakes to become fullly self sufficient? 

I'm so sorry; it sounds like you and your d have been badly let down by CAMHS.  What seems most likely to me is that she was never actually weight restored in the first place and that you were given the bad advice to back off at the very time she needed you to lay down the law and require full nutrition.

As the mom of a young adult myself, I know how hard it is to parent them as though they are much younger.  Unfortunately, that's what they need.  Your d really needs you to battle ED for her because that monster is just too huge for her to battle on her own.  

You really CAN require full nutrition and minimal exercise.  If need be, you can forbid her from leaving for work if she hasn't finished whatever meal / snack needs to be eaten.  It is not not not any fun for anyone - really a miserable experience for all involved.  However, your parental authority will never again be as great as it is now.

If you are paying for phone, transportation, spending money, etc. that can provide valuable leverage to require full nutrition and minimize exercise.

We are glad to help however we can.  Sorry if this is too blunt or terrible.  I know it will be hard to read.  Also sorry it has taken me so long to reply.  I am tied up at the moment and unable to visit the forum regularly.  I will keep you and your d in my thoughts.  xx

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