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goblin

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Posts: 19
Reply with quote  #1 
I hate ED. I hate what my life has become.  Most of all, I hate the suffering it has caused my lovely kid.

My best friend got married today and I couldn't be there.  It is a pretty low key wedding but she  lives about four hours away and logistically, with feeding my daughter and my daughter's mental health at the moment, I am not able to go.  My friend understands.  She is a good soul.

I so,so wanted to share her day with her.  I am feeling extremely sorry for myself.  The party is currently in full swing  and I feel so very lonely.

It is ironic really, my daughter has come on leaps and bounds and has gained 12kg in the last four and a half months.  Self harm has stopped, as has the compulsive exercise and she no longer stands all the time.  I have so much to be grateful for, there is a very faint light at the end of this tunnel.  We have been through utter hell to get to this point. So why do I now feel so wretched?  I was coping when we were right in the  thick of it -  far, far better than I am now.

I really don't expect any answers to that question.  I just needed to vent and there is no-one in "real life" that understands.




eternalhope

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Posts: 164
Reply with quote  #2 
Goblin, fantastic job on the weight gain. You are almost there. Everything you’ve said, we’ve all felt, I know I have. Giving up normal things to do- going to weddings, family functions, in our case, visiting my family for Christmas. Just too risky now. Hang in there and take care of yourself. Try to do one nice thing for yourself a day- a bath, a walk. Your doing a great job, and things will get better. They may never be the same as they were, because you’ll always be on guard. But they will be better.
EC_Mom

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Reply with quote  #3 
Goblin, this is a place where others will understand your rant and have been there themselves. Ranting is part of recovery!!

Let me congratulate you on the heroic, exhausting, and superstrenuous work you have achieved with your d. She is SO much better. This is amazing and wonderful. Your story is a hope to people on here at earlier stages of refeeding.

And I can add that when things get better for the patient, sometimes they get worse for the caregivers. Truly! I somehow soldiered through the worst, and then as things became more bearable I became more miserable. Resentful, sad, traumatized. So many parents here report the same.

I took psychotropic medicine and got EMDR therapy for trauma. They helped. Getting more normal helped, over a looooong slow time.

Meanwhile know that other parents on here do not begrudge you your rant. It sucks to miss your friend's wedding. You are, however, giving your daughter the gift of a healthy life by sticking to consistent, required eating.
rose08

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Posts: 73
Reply with quote  #4 
Hi Goblin, I understand. This illness robs our children and our families of so much - and often the caregivers needs are number 102 on the list - you have obviously gone through what to most would be an unimaginable journey to get to where your D is now. I can remember life "before" and it seems like such a simple, easy time compared to the new normal of meals and snacks, schedules,.constant vigililance even when things seem ok. You are a supermom making supermom choices for your D. I am sorry you missed the wedding, that must be really tough - sending love from South Africa xx
scaredmom

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Posts: 143
Reply with quote  #5 
Goblin, I feel the same, if that helps. We are in a different world right now. You have done so well to get d where she is now. I try to remember where we came from and how far we are from that and that helps. To see that things are better and will get better gives us hope. I am cheering you on and comisserating with you. It is soo hard not to be able to participate in normal happy things. I feel that after what we have all been through, when we get to do more normal things , we don't take it for granted and that those moments are even sweeter and have deeper and richer meaning.
You have done so great!!!

goblin

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Posts: 19
Reply with quote  #6 
Ach- I asked for a kick up the arse and you were all empathetic - you have made me cry. Big, crocodile tears and a snotty nose.

Thank you.  It helps enormously to know that its not just me.

I have stopped wallowing and I am about to open a really special bottle of wine to help with my self -pity.  
scaredmom

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Posts: 143
Reply with quote  #7 
Enjoy!!
kazi67

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Posts: 42
Reply with quote  #8 
This site is so awesome that we can all support and help each other feel better!!
goblin your gorgeous d is the most important thing in the world to you and you are dong the best for her to get her back healthy and well
You friend will understand I am sure and I think that's the thing that makes it hard, because we know they don't really know what it's like but honestly if she is your true friend she will understand
But we all get it
I know when I was so worried about my d mental state I got the shopping delivered as I didn't want to leave her alone
When trying to explain her lows to a friend he said "oh we all have lows and we dont want to get out of bed it passes" 😳seriously he has no idea, on top of that we then have to get in the food!!!
It's hard though what we sacrifice for our kids
My chlorestrol is now high and I've gained SO much weight grrrr
But I see the transformation in my d it has been worth every tear
We are all super parents!! And it's good to come here and read everyone's stories and to be reminded of what a good job we are all doing because, no sometimes our friends (and unfortunately for me family too) can't really understand
Enjoy your wine! You deserve it x

OneToughMomma

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Posts: 1,139
Reply with quote  #9 
Dear goblin,

What you describe is completely normal.  Completely sucky, but normal for us.  I think it's kind of PTSDy.  We recognize the immediate danger of death is over, and now are looking around at what's left of life.  What we've lost and what we need to repair.  I, too remember struggling at this point.

Do what you can.  Drink that bottle of wine and have a bubble bath.  Get yourself a good book or magazine.  Get professional or medical help if needed.  Take care of you.

xoOTM

__________________
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
Torie

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Posts: 4,593
Reply with quote  #10 

As OTM and others have said, this is, unfortunately, normal (for us FEASTIES). 

Here's how my non-ED d describes our journey:

Mom, when ED-D got sick you were AMAZING.  You cranked into high gear and somehow got everything done.  THen when ED-d was doing better, you kind of fell apart.  So Dad kicked into high gear until you got a little better, and then he kind of fell apart."

It would be kind of funny if it weren't all so awful.

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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Posts: 409
Reply with quote  #11 
Hi goblin,
so sorry that you could not be with your friend. It is really terrible and sadning what we miss in this time.
It is o.k. to feel sorry for yourself and it is o.k. to feel lonely. There are two things to do against it: do something nice for yourself and go out and meet friends (or if none are left, meet us here!).

You ask for a kick?
"My daughter has come on leaps and bounds and has gained 12kg in the last four and a half months.  Self harm has stopped, as has the compulsive exercise and she no longer stands all the time.  I have so much to be grateful for, there is a very faint light at the end of this tunnel.  We have been through utter hell to get to this point."

So let us see the positive things: Yes, you have not been with your friend on her wedding day. But you have been with your d and she did well. Comparing with what you have been through it is a gift that you were able to stay with her. Every single day is a gift.

It is quite normal that you are coping better when you had to be supermum than now when you can allow yourself to be a bit weak again. You have to learn to enjoy normal life again and it is difficult for all of us. When you realized she has ED the best way to cope with it was to accept it and just go ahead and fight this bastard. Your life will not be the same as before ED. The best way is to accept this and go ahead. I try to make peace with it. Not to get the same life as before doesn´t mean life is going to be bad. It just means that it is going to be different than you expected.

Send you a big hug from Germany.
Tina72
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