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Ellesmum

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Reply with quote  #1 
I just can't do this today, I'm ill, exhausted, shaking and so, so low.

We have had progress and it's been a positive few days but today, no. The mood here is horrendous, she's screeching at me, I can't say anything right, every glance, every word is take the wrong way. This child who I have loved and supported on this lonely journey thinks I hate her because she's worthless and my rational mind knows this is the ED, I know it but today I am at breaking point. 

I needed to get this off my chest with people who understand. It will pass and I'll come back fighting but today I have no fight in me.

The irony that I can't eat for worry - jeez.


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Ellesmum
seaglass

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Reply with quote  #2 
It’s the hardest thing isn’t it? I had many many days feeling like you have described. I cried more than I thought possible, was very low and anxious and wanted to run away and give up. We get it. We really do.

I saw a counsellor for a few months just to have a bit of space for me and to rant and cry and talk through my feelings. It really helped me. I don’t know if that’s worth thinking about for yourself?

Today though can you take some time out just for you? Can you go for a long walk? Phone a friend? Go and paddle in the sea/river? I don’t know if you can leave your daughter or not (there were months when I couldn’t) so if you can’t can you scoop her up and go to the cinema and switch the mood? Or just snuggle on the sofa and watch a happy film like Mama Mia?

You know you are strong and you will get through this but you do need to carve out little bits of time to care for yourself. It’s exhausting and scary and frustrating and relentless. My grandma had a mantra, which was ‘Keep on keeping on’. I used it to get me through the days I really didn’t want to face.

Take care.
Torie

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Reply with quote  #3 
Oh dang, I hope the cold (or flu?) that has been plaguing you will soon be a thing of the past.  It is hard enough to fight this monstrous illness  when we're in tip-top shape.  I hope you have a friend, neighbor, relative, church pal who can step in and do some shopping/cleaning/cooking to lighten the load a tad until you are back to good health.  Hang in there, and 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 
Ellesmum

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Reply with quote  #4 
Thank you for your kind and supportive words, I know you get it. It's just so damn hard, school is out and I know her classmates are out celebrating in high spirits and my girl is not invited, it just breaks my heart. 

Does this illness leave a carer/parent more compassionate or hard faced do you think? I I'm kind of running out of patience for the unkind people.  

I would like to lock myself away and drink wine until I pass out, I won't of course and it wouldn't help but right now...

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Ellesmum
scaredmom

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Reply with quote  #5 
Ellesmum,
It really is hard. I know it is hard to think of your D being excluded- we had some of that too- it was so sad. Yes People are unkind. As CM76 says, the new school, new beginning will really help and by then your D will be in better health and able to engage more too.

I would just invite some kids or take her out more.  I actually think it was harder on me that there were no real friends at that time. D seemed ok. If I did not make a big deal out of it she did not get upset. As for the parents of these kids.... I would hope they would help their children to reach out. After all we have been through, I know I would. I guess they don't really understand. 
You ask if this leaves us more compassionate, I can only answer for myself. And YES I am more compassionate and feel, that if I knew someone was going through anything like what we have, I would jump in and help out in anyway I could even without asking. Meal support, making meals doing shopping, babysitting, etc. if they needed it. I wish I had had that and so I am happy to do for others. 
I was resentful at the beginning that this was our life. I was envious of others' normal lives. But you know, I have gained so much inner strength that I don't think others have unless they have been there. So, please know that who you are and who you will be, is a stronger, stronger, able, fierce force to contend with. 
You got this!
XXX

Ellesmum

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Reply with quote  #6 
Thank you, I feel a bit better tonight. We've been out for a couple of hours and she's much calmer.

Today was a bad day, tomorrow can be better. Early night for us.

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Ellesmum
teecee

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Reply with quote  #7 
I was going to say that old cliche ‘tomorrows another day’ as it absolutely saves me every time. I saw a great quote the other day :
“Meet today’s problems with today’s strength. Don’t start tackling tomorrow’s problems until tomorrow. You don’t have tomorrow’s strength yet. You simply have enough for today“

You got through today. Give yourself a massive pat on the back. When you get up tomorrow put your big girl pants on - you got this!!
Virtual hugs. Xxx
Ronson

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Reply with quote  #8 
Glad it got a bit better - after my positive post my afternoon turned hellish - chairs thrown - words said - I hope our day tomorrow is better too - every time I think we have hit our rock bottom a new rock bottom is found.

Just to clarify I didn’t throw any chairs
kazi67

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Reply with quote  #9 
Ellesmum
It’s so hard isn’t it we all understand
I used to wish I had a one way ticket to Mars
Such a roller coaster ride of mostly lows with some highs followed by more lows
Usually as soon as I got excited by a high it would all crumble down with a massive low
But it does get better
You find an inner strength you never knew you had even when it doesn’t feel like you can
You do and you will!!!
Listen to some music, meditate,
I love Follow the sun by Xavier Rudd
“Tomorrow’s a new day for everyone”
Hugs x

Ellesmum

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Reply with quote  #10 
Quote:
Originally Posted by CM76
Glad it got a bit better - after my positive post my afternoon turned hellish - chairs thrown - words said - I hope our day tomorrow is better too - every time I think we have hit our rock bottom a new rock bottom is found.

Just to clarify I didn’t throw any chairs


I am sorry to hear that - bet you feel like throwing a few chairs sometimes though!


I feel slightly better today and she is in a better mood although of course I've said a couple of things 'wrong' <sigh>  

I have a few hours to myself thankfully.  I guess we all have those days when it just feels like too much.  I'd never actually considered the financial side of an ED before, the not being able to work and the money running out, it's just another thing to worry about on an already long list.  

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Ellesmum
krae

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Reply with quote  #11 
Ellesmum,
Understand totally about exclusion, and this has nothing to do with an ED. My nephew is mentally disabled, funcional, working and a beautiful, gentle, kind young man, and the number of people who disreard him as a person astonishes and saddens me. Anything out of the 'Norm' appears to scare people into non acceptance.
My d is so very fortunate that has some beautiful friends that are still standing by her even though she will let only her bestie into her world at the moment and doesn't want to see the others. Hoping I can keep that going.

Totally relate to chairs thrown! I now have 4 out of six. And lets not mention the dinner set[rolleyes] My d is having a hard day today from the moment she woke I just thought travelling to Venus was probably the best thing I could do! We have struggled through and managed to get the 'Eating' done although she is still very restrictive in what she will eat. I want her to eat cake, muffins etc and the best she will come at is a crumpet. Luckily 
Ronson

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Reply with quote  #12 
It’s just so horrible - eating is something to be enjoyed - so awful - hope everyone’s days get a bit better x
Mamaroo

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Reply with quote  #13 
Quote:
Originally Posted by CM76
It’s just so horrible - eating is something to be enjoyed - so awful - hope everyone’s days get a bit better x


That's so true! Before ED my d loved eating, I used to say she would anything if it stood still for long enough. ED took it all away, however, now she's much better and I can see she's enjoying her food again. Hang in there, it will get better 🤗🤗🤗🤗

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Ronson

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Reply with quote  #14 
Aw that is so lovely to hear she enjoys her food again - I hope my d does too - lunch done and she even cracked a smile - let’s hope it stays - it is such a cruel disease
scaredmom

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Reply with quote  #15 

CM76, 
" lunch done and she even cracked a smile - let’s hope it stays " enjoy this moment it is a gold star moment. This is what you have to hang on to, that there are glimpses of your real D in there. She is really wanting to come out. It is the food and time that makes the difference. 

Tina76 used red, green and yellow dots in a book to mark the days as bad or good. This may help you see, that over time, moment by moment, there really are more green than red days.

XXX

Food+more food+time+ love+ good professional help+ ATDT=Healing----> recovery(---->life without ED)

Ronson

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Reply with quote  #16 
We are doing that but last two red - she is looking awful too I think - she is eating everything -supervised - monitored at toilet - if she doesn’t gain this week I’m at a loss
MamaDo

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Reply with quote  #17 
Thank you all for posting this thread. We had been eating every day without purging for the last week, yay! And even went on a road trip where she only refused one breakfast! While we have been waiting for a spot in our local children’s ED program, I have been feeding her every 3 hours based on research I’ve read to get her back on track, and she gained a kilo last week!

But after so much success, today was a very hard day. She ate, but the screaming and the tears and the manipulation and the tears and the rage went on unabated for 5 hours (it wasn’t the best parenting I’ve ever done either, TBH).

this evening, I got her back for a little while, curled up on the couch for a snuggle, and goofing around before bed.

I don’t know why my anxiety increases as hers decreases - at least while she’s screaming I know it’s E.D. When she’s smiling and happy, I wonder what she’s hiding. It really sucks to not be able to trust your own kid, even when you both know it’s just because of the ED.

For all of us dealing with teenage mood swings AND ED, a huge cheers for making it through each hard day.
xoxo
Ronson

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Reply with quote  #18 
So sorry to hear you had such a bad day - it is so hard - we are all doing the best parenting we can in terrible circumstances. I hope today is better for you - and at least she ate - and gained - so you are winning XX
MamaDo

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Reply with quote  #19 
You too, Ronson. Better luck today!
Xoxo
krae

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Reply with quote  #20 
So sorry to hear about the bad days as they seem to be what we all experience the most! I'm very happy to read about the good days and the weight gains, as little as they might be they are still a gain!! I feel like the only thing left is IP but D is still 'medically stable' even though she lost again last week. Had to have the sliding door glass replaced this week as there was a physical altercation with ED who pushed me into it, luckily it didn't shatter, just a huge crack from the top left to the bottom right. Not sure where this all ends.
D is still eating but very restrictive and I can't get her to eat whatever I put in front of her without losing all the food and crockery. I don't like to appear extremely sarcastic but does anyone have a padded room where D can sit and food can be delivered, eaten and then she can come out? Sorry but I'm way past my limit and don't have parents who can help as Mum has been diagnosed with Alzihemer within the last month.

Still holding in at the moment but not sure for how long.
Ronson

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Reply with quote  #21 
Sorry to hear this - I hope today is a better day xx
kkhrd

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Reply with quote  #22 
"I don’t know why my anxiety increases as hers decreases - at least while she’s screaming I know it’s E.D. When she’s smiling and happy, I wonder what she’s hiding. It really sucks to not be able to trust your own kid, even when you both know it’s just because of the ED"

MamaDo, I can totally relate, we had a good day today, she was laughing and joking with her brother, she ate well, but with dinner on the horizon, I just can't get this feeling of 
dread to go away, I feel like if she's not fighting that I'm not pushing hard enough to get more calories in, WHY is she happy today, is she happy because ED thinks it's winning?  I feel like I don't know how to feel okay with things, anxiety is always creeping in.  We are managing to see weigh gain most weeks, but is it enough?  Is it moving too slowly?  I HATE ED!
MamaDo

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Reply with quote  #23 
Kkhrd; i feel this so much. It’s hard to appreciate the “good days” when you don’t know if they really are “good days”.

After almost a week of compliance, I woke up in the middle of the night, heart pounding, wondering if she’s purging while we’re sleeping.

@$&#%* ED!
Ronson

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Reply with quote  #24 
We had some really good days last week - I was so stressed for weigh in in case I was missing something; I wasn’t. I had the heart pounding in night too and d sleeping with me just in case. It is so hard but I’m starting to believe that maybe there will be more good days. We have in between had some really bad episodes. To me it feels as though Ed might know it’s hold is loosening so with the good comes worse. Hate this disease that steals our children x

Oh and I worry about the purging whilst we are sleeping too. D asked to sleep with me - not sure why - but at least it means that when I am not lying awake worrying in general I can be reassured that she is not purging.
Ronson

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Reply with quote  #25 
Hi Ellesmum - I just wondered how you were doing ? X
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