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Ronson

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Reply with quote  #76 
Thanks all - I’ve not mentioned the waffles - I feel at least I know what she ate and I added extra calories on elsewhere. She has had a good day today too - although the dreaded bed time is still to come - but she has met friends and been chatty. She didn’t want snack as claimed she had snacked with friends but h stuck firm and said well we didn’t see that so you need to have it anyway - well done h. Tea was better and quicker with our card game. I don’t think d is hiding food - we always eat at table and she wears a t shirt and leggings so we can see. X
scaredmom

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Reply with quote  #77 

Way to go H!!!

H:1 
ED: 0
XXX

kazi67

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Reply with quote  #78 
Hi all
Unfortunately have to agree with Torie that you can’t trust anything your d says this illness makes them lie, and we learnt this the hard way with our d ending up in hospital
If you dont see it go in it didn’t!
In saying that I do have a few trusted friends who I can count on but I still don’t think they get it 100 percent and after a 8 week IP stay I rarely rely on them
It’s also tricky as depending on their age, (my d is 19) and now recovering fairly well, we are giving some independence but in the early days I wouldn’t, I would watch like a hawk!!
Distractions are a great way to get through meals, hangman, noughts and crosses, we put on the tv (I personally hate that at meal time but it works)
It’s hard, we will all agree to that!!
But it gets better and once you start seeing your d come back it’s so very worth every sleepless night and every tear, it really is!
Keep up the great work!
x
tina72

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Reply with quote  #79 
Quote:
Originally Posted by Ronson
Thanks all - I’ve not mentioned the waffles - I feel at least I know what she ate and I added extra calories on elsewhere. She has had a good day today too - although the dreaded bed time is still to come - but she has met friends and been chatty. She didn’t want snack as claimed she had snacked with friends but h stuck firm and said well we didn’t see that so you need to have it anyway - well done h. Tea was better and quicker with our card game. I don’t think d is hiding food - we always eat at table and she wears a t shirt and leggings so we can see. X


Hey, you did it!!!
Be aware that she might save some food in her mouth so make her stay with you at least for one hour after meals/snacks. My d did not hide food but I know from her that some girls in IP were master of magic with that. They hid food directly under the eyes of the nurses...

Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
Ronson

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Reply with quote  #80 
Hey Ellesmum

How are you doing? I’m waiting on CAMHS appointment so feeling completely sick x
Ellesmum

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Reply with quote  #81 
Hi, how are you?

I have a very quiet little girl today, we had a terrible night - the worst meltdown in a while. I don't handle being woken up from deep sleep in the early hours very well.
I'm alone tonight and plan clean sheets, a manicure, peaceful dinner and some general self care. I will admit, I thought we were doing well but I'm getting scared again. 

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Ellesmum
tina72

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Reply with quote  #82 
Remember: when you see ED, you are doing something right. You can fight the target only if you see it. You should get scared when it is going too good and too easy...[wink]
Sleep: big problem here for many months, too. Try to do a nap whenever possible. I still do that. You need to reload your batteries.
Keep swimming. Tomorrow will be a better day.
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
MamaDo

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Reply with quote  #83 
Hi all,

Just checking in, to see how everyone's doing? We've had a rough week so far: ED had gone underground a bit, and we had deluded ourselves into thinking we were going to sail right through this like rock stars. Then she somehow lost 1 kg under our noses, and has had two crazy refusals to eat involving throwing food, screaming and crying over the last two days, twisted her sisters arm causing a sprain, and OCD reorganizing her room and make up table.

We finally have a start date for the ED program here, but we need to survive another month before our assessment. September seems really far away.

I hope everyone else's week has been OK.

Xoxo
Ronson

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Reply with quote  #84 
Hi

That’s not good - have you managed to find out how she lost the 1kg? The refusal may have increased because of the weight loss - I’m sorry she hurt her sister. A month seems a long time for an assessment - we have guidelines in the uk where they must be seen earlier - can you check what tout guidelines are?

We have been ok - a horrendous outburst on Sunday night where the monster was clearly there but it’s visits have been less and less - more days with our d back. She has continued to gain and is now at a good weight for height. Hoping things continue to improve - we also have medication appt soon.

I am so tired though - I don’t know if it’s delayed stress but I just want to sleep x
tina72

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Reply with quote  #85 
Hi Ronson,
"I am so tired though - I don’t know if it’s delayed stress but I just want to sleep x"
Look at what I posted about carer burnout. That is what you are suffering now. Try to get some extra sleep and try to do something nice for yourself. It is important to reload your batteries. I am still having a nap as often as I can 1 year after WR. It takes time for them to recover and it takes time for us to reload our batteries.
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
MamaDo

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Reply with quote  #86 
Hi Ronson

It’s good to hear you are having more days with your D. I totally get it about the exhaustion; we have had it relatively easily, and I’m tired all the time, what with the worry, and the tension, and trying to figure it all out.

There is only one public ED program in my city, and people come to it from out of province. They don’t book you in until they can do comprehensive assessments- medical, psychological, nutritional. When we were referred, they warned us there was a 5 week wait list to get into the program, and now we have our appointments, and it will have been 8 weeks. In the meantime, we have been cobbling together as much of a plan as possible, between our GP, counseling, and refeeding. But obviously we are missing something- the GP and my H both think 1 kg in a week isn’t a big deal; could be water, or she was constipated and then not, since she’s been eating, we haven’t caught her purging, and her previous weigh in was up 1 kg. But when the GP told her she had lost weight, she couldn’t stop smiling, and was in a good mood for hours afterwards. Stupid ED.

I guess we’ll see tomorrow at this week’s weigh in.

As for you, keep breathing, get some rest. I like Tina’s suggestion of napping everyday, but I think you’re working, right? That must be really difficult, but sometimes I think at least if I could work a little, my brain could do something other than worry about ED.
Ronson

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Reply with quote  #87 
Hi Tina72 and mamado

Yes I was working today so a nap was out of the question. Yes my d def coming back to some extent but it still so tiring - worrying all the time and worrying about other d too.

Not sure about the 1kg weight loss - our weight gain has not been steady - we have tended to have large gain, tiny loss, large gain. 1 kg cld be normal fluctuation or not. Has your gp considered blind weighing - our life has been much better since then. D seems less stressed and the focus on a set weight is not so strong.

Hopefully tomorrow you will get a good result.

It is a stupid disease. I wish it wasn’t here - I am also so tired of all the appointments and doing loads of development tests 🙄

Let us know how you get on tomorrow - will be thinking of you x
Ellesmum

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Reply with quote  #88 
Hi all,
Things not great here - groundhog day and I just know tonight is going to produce an epic meltdown. I'm so sick of being calm, jollying along etc. What about me? (and all of you)
Just a bad day being sabotaged by well meaning but clueless people.

Life is truly on hold and I just want to do some living.

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Ellesmum
Ronson

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Reply with quote  #89 
I’m sorry to hear that. Yes it’s just not fair is it - our lives are on hold and it’s such a selfish illness. Are the meltdowns every night? How is her weight? X
MamaDo

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Reply with quote  #90 
Ellesmum; how did your evening go? I hear you about the well meaning sabotage. Hopefully your day ended on a better note.

Ronson, hope you got some rest. We had weigh in today, and she’s consistent with last week’s weight, so good? I guess? And she’s grown half a centimetre in the last month, so also good. Went for ice cream today - it’s incredibly hot here, 36C, and she wants pizza for supper. So no battles with food today so far.

Fingers crossed for everyone to have a good weekend!
Ronson

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Reply with quote  #91 
Hi mama do

A consistent weight is good and pizza is good. My day was fine but internally I have been feeling frustrated with the ed - trying not to let it show. We need to tackle speed of eating etc but just can’t face it this week. We are back at school next week and if she wants to go to guides etc she will naturally have to speed up so hoping that helps. Just feel so angry and stressed - meant to be out with friends today but feeling like I can’t face it x
MamaDo

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Reply with quote  #92 
Ronson,

Sending warm fuzzy thoughts your way. Maybe, just for today, you can find a way to let go for a little while? Get a little drunk, flirt with a stranger, have a nap, make some small, bad choices, just for yourself. Not sure it will help, but it would be a bit fun, no? :)

Xoxo
Ronson

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Reply with quote  #93 
Hello - I did go out - and had a couple drinks - all has been calm here again - so that’s good - how is everyone else ?
atdt31_US

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Reply with quote  #94 
Schools starts Monday - as hectic as this summer has been prepping 2 meals and 2 snacks for a nanny to plate and supervise while I was at work, it will seem easy compared to packing two snacks and a lunch every morning and getting breakfast and meds into her before I leave for work at 7:00 am. Any change to the routine just seems a bit overwhelming. We’ll get there, but I look forward to when this new schedule seems routine.
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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. FWIW ED-D is a fraternal twin and we have no other kids.
Ronson

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Reply with quote  #95 
Good luck - our schools start back on tues - I am hoping routine brings some improvements but also scared and h working away for 2 weeks.
Torie

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Reply with quote  #96 
Ronson, Not sure if this is related to your current situation, but I will pass along an observation my non-ED d made some time ago:

Mom, when ED-d was so sick, you were amazing - you stepped up and basically conquered the world, and then when things weren't so scary any more, you kind of fell apart.  So then Dad had to keep everything together, and then when you got strong again, he kind of fell apart.

A pattern?  You do what you have to do, and then when life gives you a bit of a break, you get buffeted by a tidal wave of difficulty coping.

Anyway, it does get better.  Keep swimming. xx

-Torie

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

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Reply with quote  #97 
Thanks Torie - things are getting better but are not great and I think you are right - I could step up and fight the ed but now I just feel overwhelming grief all the time. I probably do need to see a counsellor for myself but no time for that. I just want d to be well, I know it needs patience but I just want her to be better.
tina72

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Reply with quote  #98 
Quote:
Originally Posted by Ronson
Hello - I did go out - and had a couple drinks - all has been calm here again - so that’s good - how is everyone else ?


That sounds great. Do that again. If you cannot do something together as a couple for some time, try to have some nice time for each of you. If possible, get some grandparents or friends around once a month to have some special time for both of you.
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
Ronson

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Reply with quote  #99 
Thanks Tina72

I don’t think me and h are ready to go out together we would just speak and worry about d. Maybe in a few months. I did enjoy my afternoon but it just makes me more sad after. I’ve made arrangements to do something with d and her friend and her mum next weekend - keeping encouraging the socialising but it’s hard.
tina72

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Reply with quote  #100 
We still do that mistake a lot: d is out and we could have some special time for us and all we can do is talk and worry about d.
You need to tell each other that this has to stop. So now, when she is out and one of us starts about talking about her we try to stop each other and say: no, not now. This is our time now and we can discuss that later.
You have to remind each other that there is a life for you, too. AN should not be allowed to distroy more lives than necessary.

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
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