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toothfairy

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Reply with quote  #51 
Dolphin , I hear you!
I am delighted for you that your D is so well and happy.
S is  in good recovery now and I know I will never be the same again. 
I catastrophize , and live on extremely high alert, and I doubt that  I will ever recover from the horror of my kid having this terrible illness. 
I am truly grateful that he is so well, 
I think our reactions are common PTSD...
You are right, we have done an amazing job.
xxxxxxx TF xxxxxxxx

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Torie

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Reply with quote  #52 
Quote:
Originally Posted by DolphinUK
Most days I have little confidence and feel I am rubbish at my job and at most things.


Dolphin, it's okay to let some things slide, not perform to your usual standards, and generally give yourself a break.  Even superheros need downtime.  I'm sure you are being overly hard on yourself and are doing much better than you think, but ... whatever.  You fought a battle of epic proportions - and won!!!  Even if you don't succeed in one other thing this decade, you're a hero in my book.

Hugs. xx

-Torie

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DolphinUK

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Reply with quote  #53 
Thank you for your supportive words. It helps so much to know there are others out there who really truly understand...

x

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BattyMatty_UK

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Reply with quote  #54 
Dear Dolphin, you know that I'm worried about you! But hopefully very soon you will start to see some improvement. As you know I advocate EMDR as the treatment model that worked for me, although as you also know, I am not *fully* recovered from the PTSD, but massively and hugely better than I was.

It's a curious and liberating feeling when you realise that much of the 'old stuff' has been processed and that, rather than being raw and in the present, it has taken its rightful place as something that happened in the past.

The problem I am having right now is deciding who I am and where I go from here - there is a massive gap that was jam-packed full of ED stuff for so very long followed by PTSD stuff. I have changed beyond recognition compared to who I was before the ED struck my S in 2009 - and 8 years older (and hopefully a little wiser!) And, like all of you, I have spent so very long NOT focusing on my own needs. It is time to turn things around and think of my needs first. At least for the time being.


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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
tina72

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Reply with quote  #55 
Hi BattyMatty_UK,
that is a really nice blog and it is great that you´ve done that for all the parents with boys on ED. It must have been a lot of work and its really good information and well designed. Thank you for that!
You are so right that its difficult to find a place in life after ED. It took so much time and power and its difficult to develop a normal partnership, a normal parentship and a normal bit of selfishness. ED will always be a part of our lives and thats the same for parents with a kid having survived cancer. They also always hold breath that everything is ok with their kid. Maybe we have to accept that and try to think its ok to have that little ED-room in our "inside-house". We know its there but we don´t have to open the door daily. Thats a huge profit in recovery.
I wish you all the luck! You deserve it so much as any of us to relax a bit and just live a normal life. We will not get rid of ED. But we can show ED that we can be happy again and enjoy life and that it didn´t win at last! Raise your glas! You won a battle of huge dimensions!
Tina72
DolphinUK

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Reply with quote  #56 
Hi Batty and Tina72,
It was wonderful speaking with you yesterday and so helpful talking to someone who gets it. Thank you for just listening to me....
I had, as you know thought that I had processed all the feelings, emotions, sadness, fear etc etc over the last 3 years that D has been in recovery, but I was wrong. Also I may have been wrong thinking that working within Eating Disorder services would be a good way to meet that intense feeling of being able to help other parents struggling with this vile illness. I feel I have been wrong about many things recently, but that is probably down to the PTSD symptoms, maybe?
Every day at work is so triggering for me at the moment and I think I have to make some big and painful decisions. However, I do not think it is all bad, I am probably now ready to start processing these feelings and hopefully will then be able to move on like you.

I think that you are an amazing person  and have helped so many parents on here who are struggling with PTSD symptoms  and I am glad you are my friend.


Much love
Dolphin

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DolphinUK

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Reply with quote  #57 
Hi Everyone, I dont necessarily need anyone to reply to me but I just needed a safe space to write my thoughts down to hopefully get some relief. This is a safe place for me.
Here goes: I have had 2 good days but am struggling again today with intrusive thoughts and feelings of intense anxiety and feeling like I am being silly and feeling sorry for myself. There are people worse off than me, my D is so well and happy and it is amazing to see this after her feeling suicidal when she was ill with AN. I am so relieved and thankful we are in this place now. I get so sad when I see on here how many people are struggling so much and I remember those feeling intensely at the moment and it crushes me.. I want it all to stop! Why does it have to be like this? What have we done to deserve this? How can we cope with the pain and anger and injustice?
I am angry , angry at the GP who was so dismissive when D was first ill, angry at the lack of service provision as D  was 18 and too old for CAMHS but deemed not sick enough for Adult services? Today is all about anger!

I just want to escape and get away from my thoughts but I cant escape them, i have been for a long walk and it gives some temporary relief but here I am again feeling trapped like a hamster on a wheel who cant get off.
I want to run and , I dont want to speak to anyone and have to pretend everything is ok.
 Is it ok to feel like this? Why do I feel like this? Its all so mad! So many thoughts going around in my head and I cant resolve them or answer my own questions. I know what is happening and I want to stop it, I want it to go, I want to feel calm and happy. We are in a place where D is so well and I am happy for this, its a miracle! Why now do I feel like this when everything is going well and has been for a while?
This illness does not only affect the sufferer, but the whole family and it seems there is no escape..

Love Dolphin x

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tina72

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Reply with quote  #58 
Hi dolphin,
you are not mad and that is totally normal. When your d was so sick you just worked and your body and your brain was just in function and had no time to get what you are going through. Now that your d is better and you don´t have to give 110% a day your brain begins to think about all that has happened.
In my case it helps me to be here and write with other people who understand what I feel because nobody else seems to do that. But maybe you need some time off and some days without any ED themes. If it makes you sad reading all this here, try to get some time off. You cannot heal the world and there will always be ED somewhere. But as long as it has left your house, that must be enough for the moment. Don´t think about what went wrong with GP and wether you deserved this...everybody in here has this memories and nobody deserved that. You didn´t choose ED. It is like cancer.
If you can´t get rid of all the anger, buy a punching bag. I bought one for my d against self harm (which worked) and I must say I use it quite often...[cool] Pin a picture of the GP on it and I swear you will feel better...
Maybe you could get some distraction by doing something completely different: get a new hobby or begin to learn a foreign language (I would prefer "german" [smile] so you will be distracted for a lot of time...just a joke).
Yes we didn´t deserve this.
Yes we wasted a lot of time on it.
yes we all have some madness left about our kids health.
But we have saved their lives.
Thats important. Nothing else.
I enjoy a lot speeking to you all. There are people all over the world who understand each other. No matter what colour, state, language. Thats a gift.
Tina72
DolphinUK

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Reply with quote  #59 
Hi Tina, thank you for your reply. I loved your idea of sticking a photo of the GP up on the punch bag! Made me laugh. I have decided to feel some compassion for him in the end as I realise it wasn't his fault? They only get limited training about EDs. It was his attitude that I was upset about but I realise that I must now let that go I think. I am currently having some leave from work and I am trying to care for myself and take some of my own  medicine I dish out to others through my work. Also talking to a counsellor who is helping me to make sense of what I am feeling and the reasons behind this which is helping. Thank you for listening to me and understanding. It helps so much, and I this applies to all the others who support each other on here. We are a family.
Dolphin
xx

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Torie

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Reply with quote  #60 
Vent away, Dolphin - We all get it because we've all been there, done that, have a closetful of the t-shirts as proof and reminder.

Time really is a great healer,  It just, well, takes time.

Please be kind to yourself.  xx

-Torie

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mjkz

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Reply with quote  #61 
Hey Dolphin.  My brother was in the military and I see the same kinds of things I was and still go through in him after he came back from tours of duty in war zones.  You go from having to be alert 24/7, on guard and every minute is life and death in the war zone.  It is a never ending struggle to keep yourself and those around you alive. If you are lucky, you may get a bathroom break but you better be eating while on the can because you may not get another opportunity.  You never know when you or the person next to you could get shot, killed, or have the Hummer you are riding in hit an IED and blow up.  You have to think and consider all options for every single move you make and even then things could go FUBAR.  You can do all the right things and still end up with a very bad outcome.  No one around you is safe and heaven forbid you see a kid or woman running towards you because you never know what they might be carrying to blow you up.

After being in that for up to a year, you are then supposed to come home and just be okay.  Go back into the loving arms of your family and be fine with doing mundane things like grocery shopping, school runs and going to the neighborhood block party.  Overnight you are supposed to shut off all your emotions and instant reactions that in the war zone saved your butt every second of the time you were over there.  You can't do it.  It is something that we all struggle with especially when our loving family and home here safe in our home country was the setting of our war zone.

It takes a lot of time and a lot of self talk.  I am constantly reminding myself that I am not in the past but the present.  My daughter is doing fine now and I don't beat myself up for not being able to enjoy it now because I gave during the war and that is why she is okay now.  It is hard to see the value in everyday decisions when they aren't life or death but there can be a lot of comfort in those decisions and the control you do have over everyday events.  To me, it is a relief to just decide things and not have to think days in advance and wonder constantly that what ifs.  That has evolved over time though and a lot of therapy and forgiveness.  By forgiveness, I mean not only myself (I did the best I could with the knowledge I had) but also other people who did the same thing.  Forgiving your GP doesn't make what he did okay or even acceptable and you can tell him how angry his reaction made you.  Forgiving him just means you are moving on and not letting him take up space in your mind and emotions.  It is more about giving yourself permission to move on rather than anything to do with him.
Torie

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Reply with quote  #62 
Great post, mjkz.  Thanks.  xx

-Torie

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tina72

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Reply with quote  #63 
Thats a quite good thing to compare, mjkz. We´ve been in a war zone. Some of us feel symptoms of PTBS.
But the best message is: time can heal it. We can let it go. Its easier if we are able to forgive all the people who have hurt us.
I wrote some letters to them which I did never send but burned afterwards. That helped.
I tried to proselytize some with their weird thoughts about ED. That was wasted time. I wasted some time on that but than I recognized its better to waste that time for myself and my family.
Tina72

DolphinUK

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Reply with quote  #64 
Thanks for your words of wisdom wonderful people. It so helps me to be able to write on here at the moment, I dont feel quite so alone...

I have not been on the forum for several years but find myself back once again and feel so guilty for being here? D is well (although struggling with over eating at the moment) I have no right to feel so sorry for myself...
I cant help it, I am so  sorry...
Feeling very low tonight, no motivation to do anything, trying to drag myself up to a better place.

Thanks for being here.
x


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BattyMatty_UK

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Reply with quote  #65 
Dear Dolphin, In your 'thoughts' comment above you could have been writing about me!!! The feelings and emotions seem so very, very similar. But let's get this straight: Yes, there are people worse off than you, but at this current moment in time and probably for some time to come YOU are the only person that matters. You need to look after Number One and not to feel guilty or bad about it. Just as the ED was, PTSD (or, rather C-PTSD which is more relevant to us - the result of sustained trauma over a long period of time) is NOT a lifestyle choice. You / we didn't cause it; it is simply the brain's natural way of responding to trauma. As the experts say: PTSD is a NORMAL reaction to ABNORMAL events.

I had (have) so much ANGER too, especially at the medical professionals who I believe let my son down and prolonged his suffering with the ED. As I said to you, the image that came to mind when attempting to process some of this anger through EMDR therapy was the image of the CAMHS nurse twiddling her little BMI calculator wheel following my son's weekly weigh-in and then implying that my son was doing just fine when he most definitely wasn't - and, of course, he would react to the 'good news' about weight gain by promptly starving himself for the next 7 days. I daren't put into writing what I wanted to do to that confounded BMI wheel!!!!!

I also felt (and feel now and again) so very, very trapped. I needed to run away, but I knew that if I did then the stuff pounding away inside my head would come with me - like a horse trying to run away from its rider's spurs. Cycling was the best way to get it out of my system. The harder the hill incline, the better!

We are not weak because we feel like this. Remember that book I was on about: "Depressive illness, the curse of the strong"? (Because there's a lot of depression tied up in C-PTSD.) How it says that it's the strong whose brains 'short-circuit' in this way because we've just kept on going, no matter what. The weak would have given up ages ago. It's because we've been so very, very strong - well over and above the call of duty - that our brains have just said "Whoah!!!!!" and there's been an outage.

Apologies for the rant. Hugs xxxxx

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BattyMatty_UK

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Reply with quote  #66 
PS: Please don't feel guilty about being here again. It's not admitting you're 'weak' or anything like that. What you are saying WILL help other parents because, as you will see from this thread, we are not alone in feeling like this! And hopefully what other parents say will help you, too. I am so sad that you feel so cr@p at the moment. Been there, done it, bought all the teeshirts several times over... Christmas Day being one of the lowest points when I couldn't even get out of bed.

I can't believe that it was back at the end of 2013 when I first began to feel 'odd'. A Good Thing was to reach out and ask for help, both here and through therapy. What would I have done differently which may (or may not) have speeded up C-PTSD recovery? Probably gone to see my latest therapist, Steve, for some proper EMDR therapy right at the start rather than go through umpteen other therapy sessions. But that's just my personal take on what helped and, as we all know, everyone is different.

I told Steve that I didn't really want to lose the anger too much. I found it motivated me to write my blog, advocate and just get generally EVEN MORE ANGRY about poor treatment and lack of awareness!!!! Oh, and to rant on here!!!!

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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
DolphinUK

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Reply with quote  #67 
Thank you Batty and to everyone for not judging me. Your reply's are helpful and reassuring to me. I feel "safe" when I come here..

I have 2 weeks away from work and I am hoping this will be good for me to focus on feeling able to cope. I am trying to take care of myself but have little motivation. Got my nails done yesterday and cried when the girl massaged and held my hands as I felt that she really cared for me? Felt so silly when I tried to explain, I think she thought I was a little loopy!
 I am trying so hard to be cheerful and have had wine to try to numb the sadness. I am hopeful this will pass and I will definitely get the book you recommended Batty. We have discussed this at length and it is helpful to have you write it down so I can read it over and over.

Thank you all

Love
Dolphin xx

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You can never cross the ocean until you have the courage to lose sight of the shore
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tina72

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Reply with quote  #68 
Hi dolphin,
nobody is judging you in here, you are welcome to feel safe and tell us all even "strange" thoughts that are going around in your head.
We all had/have the same thoughts. Seems to be a big family...
I nearly cried when I had my first haircut after 6 months without time for that.
Try to make a to do list for each day.
Take a bath tomorrow. Go to a massage. Invite a friend for coffee.
Tina72
DolphinUK

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Reply with quote  #69 
Hi Tina, Thank you for listening to me, it is really helps. It seems you know an awful lot about these feelings too? I guess we have been or all are going through this process?
I just wish it was not so painful. I just want life to be back to normal . I hope it can be for all of us.
I am currently listening to music with my headphones on. I have been doing this obsessively for the last few weeks to " blot out thoughts and feelings" it helps....
I am having counselling which I hope will help me to allow myself to feel eventually?

much love
Dolphin x

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You can never cross the ocean until you have the courage to lose sight of the shore
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tina72

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Reply with quote  #70 
Hi dolphin,
I´m sure we all feel the same because we love our kids and this desease is destroying everything and turning your whole world upside down.
The biggest problem is that in the first hard times you don´t see any light at the end of the tunnel. I felt so helpless and did´nt know what to do any more.
But as I discovered FBT and this forum things changed a lot. From the moment you try to refeed your child and you see it works you get a big shot of power again because you see you are not helpless. This tunnel is dark and long and the only way is to keep on going. There is normal life waiting for you at the end.
I´m really glad that speeking to us seems to help you a bit. It changed my life to find that forum and I´m agry with myself that I did´nt dare to join in earlier because of the language. I´m much more confident today and I promise you it will get better. Keep on going.
Tina
BattyMatty_UK

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Reply with quote  #71 
One thing that's difficult is that (and I'm sure I'm not alone in saying this) 'everyone' (family, friends, colleagues, etc) assume that because your child is recovered then everything is now OK with you and the family. That you, as the parent, are able to pick up where you left off all those years ago and 'get your life back'.

Before the C-PTSD struck, I thought that too. My son was doing splendidly (albeit with a few blips mainly to do with settling into Uni life), I was writing, blogging and doing stuff in the world of eating disorders, I was also getting my freelancing business back on its feet. But three-and-a-half years ago things began to change. It was gradual but it slowly began to dawn on me that I was changing; I wasn't the 'old me'. I was dissociating from stuff, feeling numb, needing to hide from the world, unable to work properly, feeling extreme anxiety, having nightmares... and so on and so forth. There'd been a large gap between my son beginning to really embrace full recovery and me slipping into C-PTSD. I understand such a gap is common following long-term trauma (as opposed to a single traumatic event).

Meanwhile, despite us parents starting to struggle with PTSD-like symptoms, everyone still continues to assume that everything is OK. And it's so easy to feel that we're 'weak' for feeling this way (and to automatically assume that others will label you as weak); that somehow we 'shouldn't' feel like this and should be able to fix it. (The 'get a grip, woman!' attitude.)

But it's because we've been strong for so very long that we have ended up like this. But of course my 'inner critic' then responds with: "Well, if you're such a strong person, Matty, then how come you can't fix this? You're WEAK! Mwa ha ha!" (Go take a running jump, inner critic!!)

It is because we are strong - and never give up - that we are reaching out for help here as well as possibly seeking professional help. Just as it wasn't possible for our children to recover without help, it isn't possible for us to 'fix' this thing without help either. I often liken it to when I broke my elbow and slipped a disc (cycling, in 2015!!)... it wasn't my fault that this happened but now that it had there was nothing I could do except wait for it all to heal, with some professional help (e.g. doctors, pain killers, physios, etc). I couldn't fix it just by wanting it to get better quickly or feeling that it should heal faster. My brain was / is no different! After all, the brain is a physical part of the body and what has happened to it, as a result of trauma, is actually a physical process (if you read the experts' books which describe 'short circuiting' of various bits of the brain). But like my elbow and back, it will heal with a mixture of professional- and self-help. In good time. The brain is 'plastic' and, in the same way we became ill with this thing, we can recover and get our 'real life' back. But it may take time, and that's OK.

The two emotions (if I can call them that) that I had the most difficultly fixing were: numbness and anxiety. Two emotions that appear to totally conflict with each other when you think about it, but which are typical of C-PTSD. I was numb for a couple of years. Thankfully I've thawed out and am feeling again. Some of the anxiety is still there, but I always was an anxious person, so that may be just part of my DNA. I no longer feel the need to 'blot out' the anxiety through excessive cycling, knitting, etc! This year, for the first time since 2014, I truly feel as if I'm cycling etc for normal reasons. It is a completely different feeling, I am pleased to say. (And thank God I'm not knitting as much because I am running out of room to store all those knitted sweaters!!!!!)

I am rambling again, I know... Just trying to (a) make sense of it all and (b) throw in my 'two-penneth' if what I say here helps anyone!!!!

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Torie

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Reply with quote  #72 
Quote:
Originally Posted by BattyMatty_UK
 And it's so easy to feel that we're 'weak' for feeling this way (and to automatically assume that others will label you as weak); that somehow we 'shouldn't' feel like this and should be able to fix it. (The 'get a grip, woman!' attitude.)


I think I am really not as strong as most here, but I try to be OK with that.  I don't love it, but realistically we all have to make do with whatever combination of strengths and weaknesses the fates have dealt us.   I try not to analyze it too much.  I may be weak, but I am also patient and persistent.  Resourceful.  My h is strong, but impatient.  That's OK too.  I don't think we get to choose whether we are strong or weak, smart or dull, etc., but there is a lot we can choose.  So take heart, fellow weaklings!  xx

-Torie

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BattyMatty_UK

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Reply with quote  #73 
What I meant is we're all strong by the nature of having been through the ED experience with our children. We never gave up, we carried on no matter what. All of us here. I wasn't implying that I personally am strong, across the board - put me in front of a plate of cupcakes and my weaknesses soon become evident lol!!! Just strong by being there for our children throughout the ED and never giving up because, put simply, we couldn't give up. This makes us strong and it's because of this that we may now be experiencing issues like PTSD. Also for possibly ignoring our own needs for so long. Does this make sense?
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DolphinUK

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Reply with quote  #74 
Yes it most certainly does Batty. I think also that we have done ourselves no favours by ignoring our needs and feelings for so long in the past and the brain has put them safely away in a box somewhere, not to be forgotten, then has decided that at some point in the future, when we don't expect it, it will chuck them all at us at the same time! It is almost saying here you are, cop this lot now you think you are back to normal ha, ive got one last thing to throw at you.!

Had the most awful nightmare last night. Haven't had them since D was ill but woke in a sweat when I was just about to fall off a cliff! The terrible fear of heights was so real!!

xxx

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Torie

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Reply with quote  #75 
Bev, I hope I'm not offending you with my comments about the strength / weakness thing.  I just disagree with you on this one point, that's all.  Dealing with my d's AN hasn't made me stronger - to the contrary; it has left me weaker.  To me, this experience has really put the lie to that old saw about "Whatever doesn't kill you makes you stronger."  For some, maybe, but not for me.  I know others have said they believe themselves to be less strong than everyone else here so I just want them (and any lurkers) to know that being weak isn't a deal breaker because we can leverage our other assets to pull our kids back up the rabbit hole.  We haven't any choice, really - we get through each day one way or another, the weak as much as the strong.

And so, I'm happy for those who count strength among their assets, and I agree that it's important not to let ED cloud your vision about your strength.  I think anyone would feel pretty tattered after being assaulted by a thug named Ed and having their family run through the emotional equivalent of a log shredder.  Repeatedly.  An experience like that probably makes it hard to stay in touch with your inner strength.  When life runs you through the people-shredder, you come out, well, somewhat shredded.  I agree that shreddedness doesn't imply weakness, and  that it's important not to confuse the two.

Anyway, I admire you greatly, and I'm so glad you've come back to share your wisdom.   I hope it's OK that we disagree on this one point.  xx

-Torie


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This forum is sponsored by F.E.A.S.T., an organization of parents serving parents and caregivers of patients of all ages with anorexia, bulimia, and other eating disorders. Information and advice given on this forum does not necessarily represent the policy or opinion of F.E.A.S.T. or its volunteers and is meant to support, not replace, professional consultation.

F.E.A.S.T. is registered as a nonprofit organization under section 501(c)(3) of the United States Internal Revenue Code.

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