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Ronson

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Reply with quote  #101 
It does though - our lives cannot recover until hers do - and whilst I think it’s helpful to compare to cancer for treatment terms it’s just not the same - it needs to be hidden - be private - I am just feeling really down today. H going away. 2 appts with CAMHS next week. No one to call upon and just feeling like coping is just too much now.
teecee

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Reply with quote  #102 
Ronson
It is a devastating illness but please remember ‘there’s no shame in a poorly brain’
Since we opened up about our struggles friends, family and acquaintances have been beautifully supportive. Just knowing that people are in your corner even if you do not want to accept their practical help is such a game changer.
I know some things need to stay private...for us we didn’t want anyone to see our D when the ‘exorcist’ visited.
Socialising is tough but force yourself to go for the drink etc...it’s a release.
Virtual hugs xx
tina72

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Reply with quote  #103 
Try to do the same that you will do for your d: distraction.
If you need to vent and have some social contact, come here.
You do not need to hide it. And you do not need to tell people what is going around 100%. We told only a few people who really got it what she really has. The others we told she has a rare metabolism disease (what AN really is).
You need to force yourself to socialise. It is hard, I know. But to be so lonesome is hard, too.
Sending you a big hug. Get through that day, tomorrow will be better.
Tina72

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kazi67

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Reply with quote  #104 
Ronson
This is one (of many) things I HATE about this illness
The stigma [frown]
The feeling of loneliness and isolation and knowing no one truly understands unless they’ve “been there”
You will also find some people/friends and even family members (in our case) who make judgement and offer no help or support and it’s truly heartbreaking [frown]

By you may also find some people/friends and or family that go over and above and you will feel your heart melt
It an be a simple txt msg, or just that understanding ear or shoulder to cry on

I talked about my d illness, right or wrong, I don’t know but that’s just me
I have found some people have put us in the “crazy” dept, other more understanding people haven’t
I’ve also found that not only me but my d has now helped others that we have found struggling with this illness and hopefully got them into treatment or at least given info so they can get started on refeeding or stopping purging behaviours ASAP, so I am so very proud of us both :) and if that’s the positive that comes out of this hell we have been through well it kind of makes it a bit better

You will also find an inner strength you never knew you had in you to fight for your precious girl

It’s not fair and it’s ok to cry and grieve and be angry and frustrated
Then you put on your big girl pants and tomorrow’s a new day and you soldier on
Throwing starfish across the sea a book by
Charlotte Bevan and Laura Collins helped me
xx
Ronson

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Reply with quote  #105 
Thanks Kazi67

Yes there are those who have been amazing and offered sanity and hugs.  Then there are those who should be amazing and have not been.  It has taught me who I can rely on and who not. 

We have told people but only as I see required.  

I think CAMHS have been surprised by my newfound inner strength.  I decided no more bs with them and have told them so.  We are not doing anything until we can understand how it is meant to make d feel better.  We are happy to try things and for them to fail but we are not happy to just go in and chat every week with no clear plan.  We are also now refusing to pick apart d's behaviour as it is the ED and not d and I see it as grossly unfair. 

Maybe time will make it better - I just want our lives back - for all of us.  To be able to spend a day without the sick feeling; to be able to spend a day without worrying. 

Anyway I'm going to go - Thank you all for your support.  



scaredmom

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Reply with quote  #106 
Through ED, I have found out who my real friends are. It is very lonely for us, as we are supposed to keep up "being normal". When your child is so sick, there is no "normal" we are thrown into a very different reality that we need to find creative solutions for. 

You say that CAMHS may be surprised by your newfound inner strength. I am not surprised[smile]

I know you want things normal again, you will find a new normal. It does get better. You have done so well already. 

If you are feeling sick yourself, please consider some help. Some have had to take meds and go for therapy too. It is a trauma to deal with ED. PTSD can be part of our caregiver burden. I have counselling and should have started it earlier. 
Please take care.
XXX
Torie

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Reply with quote  #107 
Quote:
Originally Posted by Ronson
I am just feeling really down today. H going away. 2 appts with CAMHS next week. No one to call upon and just feeling like coping is just too much now.


Ronson, please try not to look too far ahead - just take this one day at a time.  Luckily, the days only come one at a time so that the most you need to deal with in one day is ... one day.  If that is too much, then think about it one meal at a time.  Or even one bite.

As long as you keep putting one foot in front of the other, you will get there.

Please remember that we're with you in spirit. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #108 
You will get your life back. Not the same life, but a good one.
You will experience days when you do not feel sick and when you forget to worry about ED. Not tomorrow, not next week, but soon.
You will be able to sleep through in the night again.
You will be able to sit together at the table and eat and you will not think about her eating.
I did not believe that will ever happen, too. But it really does.
Have some hope. Have some confidence. You have already gone a huge way in that tunnel. The light is nearer than the starting point. Just go.
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  #109 
Just checking in, as it’s Saturday over here. How’s everyone holding up?

We had a pretty good week; this morning is tough, but our doctor visit shows we are almost at WR, so yay! She showed me the growth curve, and it was the first time I saw how far off we were from her regular growth pattern.

My daughter admitted to trying to sabotage her refeeding by overeating, hoping this would distract us and allow her to restrict her food. She also admitted to looking forward to school being back in session so that she could stop eating again.

Tricky.

Ronson, how are things with you?
Ronson

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Reply with quote  #110 
Hi

Good that you are close to wr but worrying that thoughts still there. I think the fact that she is telling you though is asking for help to stop doing that and that’s good.

I’m honestly not sure how we are doing - d is wr and stable but was back to school this week. I have given her one week to try eating lunch at school and see how that goes. She is having a big breakfast and snacks and tea and supper so I am hoping I am not making a big mistake.


She is still just so body dysmorphic and just feel sad that our life is like that. She is doing much better and is at a friends for the evening but I am struggling - I wonder if she will ever be more than functioning x
kkhrd

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Reply with quote  #111 
I can relate to the awful thoughts that invade our dear daughters. My d is 2 pounds from the doctors goal weight set for her, but she is having a really bad week, awful self deprecating thoughts, hateful and harmful! She tells me daily and at every meal how much she hates her new body, she is grabbing and twisting her stomach leaving marks, she cries at meals and I wonder if we will ever be a normal family. She was having a good week prior to a pool party with school friends where they were all in bathing suits. She enjoyed herself while there, but then the social media posts got her comparing her body to other’s bodies and she went off the rails. She’s been in pajamas ever since, not wanting to dress for anything. Where do we go from here, when will she get better, or will things just continue to deteriorate from here. I’m losing hope!
Hibiscus

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Reply with quote  #112 
It’s such a cruel disease and literally torments them. It is so distressing that our kiids have this. I have been quite tearful lately about it all. My d has been struggling all week and this morning it kicked up again. We had a great day planned but she refused to finish breakfast as I picked her up about trying to knock food off her plate and told her she had to ‘eat it’ well clearly the absolutely worst thing to say and she has shut down again. Hates me, what’s new? Like you kkhrd my d is soo close to weight restoration and whenever we get close, bang there it goes again. Shut down. Sometimes I feel like there is no end in sight. I know the answer is food, I am so sick of food! I just want my girl back. I want her to reject me cos she’s becoming a teenager not because I made her drink a glass of milk. Sigh 😔
Foodsupport_AUS

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Reply with quote  #113 
We all have those hopeless thoughts at times. Change and improvement is so slow that we barely notice it happening. It is so hard for us to tolerate their distress, it makes us distressed too. We can't take it away from them and we have to push them through it because it is for them the only way past it. Acknowledge their distress, their thoughts are strong and persistent, as time goes on they will fade to the background. It really does not last forever even though I know it feels it will. Keep swimming. 
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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.
Ronson

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Reply with quote  #114 
Sorry that everyone seems to be having a bad week. I feel kind of hopeless at the moment as well - d gets a bit better and then it falls back again - I just want my daughter back - I want her to be enjoying her teens not plagued by thoughts which aren’t true. I’m sad and lonely and really have had enough x

Oh and the pool party - what do they see in the pictures that we don’t ? I see my d looking great - they see something else entirely x
kkhrd

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Reply with quote  #115 
I'm just curious if any of you are dealing with bad behavior that coincides with hormones??  My D has what appears to be episodes of bad behaviors that occur every 2 weeks.  During the time leading up to my period, and mid cycle during ovulation.  I should say that she has just turned 16 and has never gotten her period, but I suspect it is very, very close at this time.  I see all the signs of preparedness for menarche, emotional distress and depression, water retention, upset stomach, hormonal break outs, and cramps with lower back pain.  The reason I ask is because women tend to cycle at the same time when they are in close quarters with each other, and no two people could be any closer than we are right now.  Of course when we are both hormonal it makes things that much harder...  I have less patience, more anxiety and feel more hopeless, when I need to be strong for her.  Things fall apart quickly, and this is usually when we have our worst episodes.  Teen angst coupled with anorexia are the worst kind of pairings!

I have mentioned it to her FBT doctor and to her pediatrician, but they both tend to suspect coincidence rather than actual hormones.  She goes in for a physical with her pediatrician this week, so hopefully she will be able to tell me if her period is around the corner.

FYI today is the last day of Mercury in Retrograde, thank goodness, its been the worst month ever!! Good luck to you all, better days ahead!
Ronson

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Reply with quote  #116 
Ok so will mercury going out of retrograde make things better - please please tell me it will

And I have no help with the discipline thing - we are so scared she stops eating we tolerate far too much x
kkhrd

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Reply with quote  #117 
Ronson, let's hope so!  Things couldn't get much worse around here!
MamaDo

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Reply with quote  #118 
It is so difficult, and I am grateful for the moments when I get a glimpse of the healthy, competent woman my daughter will be. I had a really nice discussion with her at bedtime last night, that reminds me she is, among other things, also a regular adolescent.

Ronson, did any of us “enjoy” our teen years? Mine were pretty miserable until I was 16. While talking about parenting to teens, most of my fellow parents in the neighbourhood, with non ED kids, are struggling as well, so that helps me keep some perspective that we’ve all got crap.

Parenting teens is more isolating than parenting babies, I think - when our baby craps all over everything or throws their food, it’s dismissed as normal baby behaviour, but when our ill or growing teens do it, it’s the parents’ fault.

Sigh. Reminding myself to be grateful that a) I know what is affecting my child, and b) that she is young enough still that help is more effective.

Good luck this week everyone.

XOxo

Ronson

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Reply with quote  #119 
Yes true - being a teenager is hard - but I did have fun with my friends and enjoyed having fun times - it breaks my heart that she cannot see the beautiful, amazing girl she is - she is missing out on life and normality.

and yes I know lots of parents have difficulties with teens - I just want things to be better.

I’m so glad you had a nice chat with your daughter last night.

Let’s hope next week is a better week.

We can all only keep swimming (wish I’d stuck in at swimming club) xx
Ellesmum

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Reply with quote  #120 
So here we are at the end of the summer holiday, still waiting for an assessment and things are not good. We have a new school to start next week and I have no idea if I can even get here there or how she will cope - she hasn't been to school since before Easter.

I am just exhausted and close to complete burn-out with the worry, stress and clinginess 

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Ellesmum
Ronson

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Reply with quote  #121 
Hi

I’m not sure why you are still waiting for an assessment - there are guidelines and I’m sure that all suspected ed have to be seen within a certain amount of time. You can also self refer to CAMHS - have you called them directly? You need to be seen. That said - as we have all learnt - we need to do a lot of the work ourselves. How is your d? How is her weight? And eating? You must be exhausted. Is there anything practical that you can do to make school easier. Can she do a phased start ?
tina72

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Reply with quote  #122 
That is really unbelievable. You should call the next instance or some politics of your area. You need to be their sqeeky wheel. Call them EVERY DAY until they hear you!
Can we help with some ideas to solve some parts of the problem in between? What are you fighting with at the moment?
Tina72

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

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Reply with quote  #123 
CAMHS are particularly stretched in my area and unfortunately the appointments offered coincided with us being abroad. We have an appointment in 3 weeks now and in the meantime we are exploring other private things to try to relax her like Reiki - I am desperate so nothing that might help even a tiny bit will be dismissed. She is sleeping a bit better but is a ball of nerves about the new school and I am worried about her not eating there, I don't know the staff like the old one but they are aware of all her issues.



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Ellesmum
Ronson

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Reply with quote  #124 
How is she eating with you ? X
tina72

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Reply with quote  #125 
Don´t worry about school. School is not important at the moment. If you are not sure wether she eats there or not, leave her at home. Eating is most important thing at the moment. My d missed so many moths of school and graduated with award this year. These kids are highly intelligent, she will get it later when she is in a better state.
You cannot do much to relax her at the moment than to get food in, and that will stress her as well. She will be stressed about anything because her brain is so badly nurished. How can we help?
Tina72

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