Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Thank you @Lottsbiffandsmudge, I need to give my head a wobble. You are very wise! Just seems immense at the moment and lots of juggling to do, while whatever is going on with her is so insidious so they’re looking at ARFID rather than AN but she doesn’t fit in any boxes apart from low weight. I hope counselling will help her open up to her genuine feelings and might help with diagnosis, then I’d feel less powerless because I could understand it better. Probably everyone here feels like me, how do you keep all your shit together?!

@Glitterfarti I really don't think there can be anyone on this thread who hasn't wondered how am I can to keep this ship afloat. This whole illness seems to hold a lot of uncertainty. The only way I have learnt to keep getting up in the morning is to really try to take each day/moment as it comes. I try not to get too excited when there is a tiny glimmer of a shift and not fall apart when we come off the tracks for a bit. I bloody hate the uncertainty rollercoaster but there is plenty of it in our house every single day.
To try to fill up my own tank I force myself to go out to meet up w close friends at least once a week even when I'd rather lie under a duvet. 9 out of 10 times it will shake up my mood.
It is really really really hard and I can't think of another scenario I've been as emotionally draining as this one.

@GrannyRoberts thanks for checking in with me. It was pretty awful to be honest, the consultant was very nice, but I didn't get to speak to him by myself so it was a whole hour of my daughter denying everything me trying to gently contradict her. He said 'oh, why don't you try going back to school!' And I said I was very concerned about her ability to eat at school, and he flipped around and said 'oh yes, that's right, she shouldn't go to school unless you've got lunchtime supervision. Er, oh yeah and don't do PE. Erm, and don't walk to school'. So my daughter picked up that I was preventing her going to school, and we have had the most awful time since we came home. She won't look at me, it took 2 hours to have afternoon snack and at bedtime she just said she wants to die. I'm not sure how to do this, I feel a bit like I want to get in the car and keep driving.

In better news she has gained around half a kilo over the week. Our scales were out of battery so I replaced it, weighed her and promptly put them in the boot of the car. Will do it again at some point next week, but am taking that as a win

@NanFlanders - so pleased to read your news! Gosh I can't imagine that coming out of my dds mouth right now, how fantastic she has made this leap.

@Glitterfarti - I agree with @Lottsbiffandsmudge too, you've turned the tanker. This whole thing is like the most frustrating awful, impossible to believe and crazy thing. And you're doing the right stuff!!!

greydoor

Good news about the weight gain. My dd was horrid after every appointment and It would take a couple of days to get back on track. She hated me and the team discussing her illness. My dd would say she wanted to die and she self harmed so we were seen by the crisis team who risk assessed her and did some work on managing feelings and helped her create a self soothe box. Sorry to worry you but there should be a similar service in your area if you feel you need it. In our case it also kicked off regular psychogist appointments although dd barely engaged. Meds and the self soothe stuff like fidget toys, a lava lamp and a white noise machine have helped her cope with the feelings.

Glitterfarti

It's such a shock to hear that your child needs to stop activities and do part time school. However it is all for the best. Getting well has to come before school and activities. My dd ended up missing a huge chunk of secondary with lockdowns and illness and then missed a huge chunk of year 12 but is now back (part time) and is much healthier psychically and mentally, although still with challenges.

Physically not psychically lol

@Glitterfarti as @ReineDeSaba said, the only way I can cope is to take one day at a time. Some days I feel so low and exhausted and like I really can't do this anymore, then the next there is a glimmer and my hope comes back. The overall picture is too huge and uncertain, you just have to take things moment by moment in my (albeit relatively short) experience.
There is a quote from Haruki Murakami that really resonates with me at the moment:
"And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about"

@greydoor I'm sorry to hear that. I had an equally frustrating appointment with CAMHS where my daughter denied any issues, however certainly in my experience they are pretty good at reading between the lines and they did take action pretty quickly despite her denial. You've done really well to get 0.5kg in a week, my DD is Inpatient and they aim for 0.5-1kg per week so that's a really good gain, especially as you're going it alone currently. Keep it up and don't give in to the ED voice.

@Glitterfarti Agree with the one day at a time (actually, sometime its one meal at a time) approach. I stopped thinking too far ahead. It's pointless anyways. Too much uncertainty. We have been on this road for about 9 months. I am totally drained by it (DD spend some time in hospital this year and most of the summer term out of school). I figured there is no point getting too far ahead of myself. If it's any consolation, DD is back with meal support in school full time now but meals and snacks are still a battle and DD cannot eat home cooked food at all. I should probably stand up more to the ED but I ran completely out of steam. My oldest has complex SN and it has been a long and hard Summer looking after both of them. Thank fuck school started.

If you can, try to get signed off from work for a bit. I couldn't afford it but I think it would have done me a world of good if I could have dropped that ball for a bit. Don't underestimate the importance of self care, esp now.

My god, snacks today have been so so FUCKING stressful. He's screamed 'we're ruining his life' he has fought every single one as of hospital is a distant memory. Stop the world as I really want to get off. He's so so distressed and I'm trying to comfort my dd

Oh @Proseccoismyfriend, so sorry to hear that, we've had exactly the same day as you. Literal screaming about snacks.

My husband filled the car up with petrol because it was almost empty, and I did have a bit of an urge to get in it and drive, and drive...

I'm feeling so bad about my other kids. I've tried to explain, but it's so not fair on them...

I can't see a way out of this, I had to explain to the neighbours as I was worried sick they'd think we were hurting them. I feel so anxious around meal times and so guilty for my daughter😭 I know I haven't handled it well today at all, I pretended to ring the hospital ward. It did get him eating but my god. Why? Just why is life so cruel

I'm with you, I feel totally blindsided by this.

I keep trying to remind myself that there are people who have recovered from this, and it's literally one meal at a time.

I've signed up for the dolphins course from beat and they sent me through the book that goes along with it - 'skills based caring for a loved one with an ED'. I'm slowly working my way through it, the chapters I've read so far talk about how carers inevitably end up responding in certain ways. I recognise myself in it.

Sending you a massive hug. Tomorrow's a new day for both of us, hope it's a better one. Xx

Remember that if they’re fighting you and lashing out it is because you are challenging the ED and that’s exactly what you need to do for recovery to happen. But I agree, it is soul destroying. Especially when siblings are affected by it. Wishing everyone a better day tomorrow

Deep breath and keep going. I remember those days well but things are different now. I was totally broken and just wanted to run away. I fantasized about starting a new life from scratch in another country and just leaving everyone to it. But I'm glad I didn't. DD does recognise how ill she was. She's so much better in so many ways, but the anxiety it left me with is so hard. I was signed off for 4 months, I'm on AD's and it scared me that I was so broken. But it won't always be like this, I promise. I look back to how I slept on her floor for months as I was scared to leave her, and how she sobbed for days on end. 12 months on and she's living full teen life. And I'm so much better. Hang on in there. One mouthful at a time. You've got this, ladies.

Couldn't agree more @SwattyPie

Keep going everyone. The distress etc is the ED kicking off because you are winning. Every mouthful by every mouthful.
I remember those days. Waking every day with a stone in my stomach and marking the day by meal times and snack times.
Soothing her to sleep every night like a child. Physically restraining her. Watching walls kicked in, oven doors smashed, pacing bare foot round and round the outside house, watching her lie on a trampoline in the snow refusing to come in or even wear a coat, listening to her sob and sob day after day.
The toll is high. But it can be done. Recovery is possible.
My DD is back to her sport, stepping out on a pitch 5 times a week, looking fierce and tall and strong.
I honestly still can't believe it. And I am still v anxious. But that is now my issue.
I am happy to take that because she is well.
You are all amazing, keep going. ❤️

@greydoor and @Proseccoismyfriend sorry you are in the v dark days. Hopefully you will find it reassuring to know we have all wanted to do a runner too at some point! Wishing you easier days today.
I really appreciate hearing about your DDs@SwattyPie and @Lottsbiffandsmudge it keeps me hoping. The anxiety is not something I had ever experienced before the ED and I feel I am a husk of the person I was but what choice is there.

Here we go again...... really hoping for a better day.
Does anyone have a rough estimate of how long this phase goes on for, is it months? He looks so deflated today

@Proseccoismyfriend How much is he managing food wise?

We have been in the battle zone on and off for almost 4-5 months. It totally grinds one down. Some days are worse and some are easier. Hope yoday is a better day for you (and @greydoor) as well.

He's having his 3 meals, yesterday was 2 snacks prior to that was 3 snacks. Breakfast was a large bowl of Frosties (sometimes he'll have a slice of toast too or a crumpet) lunch a ham sandwich, both snacks so far we're a full apple (he's frightened of chocolate or sweets they kick off the anxiety which is why he's been avoiding it he feels safer with fruit for now) dinner yesterday was 3 roast potatoes, half a tin of spaghetti hoops, half a Yorkshire pudding and carrot. He then had another apple before bed

@Proseccoismyfriend Is this your meal plan from the hospital/ED team of is it your own? Just asking as there is not an awful lot on it and the snacks are really small and there is next to nothing in an apple. I understand having a plan and enforcing it is something different but just wondered where it came from?

DD started intence pacing recently in the house whenever I turn my back. Anyone any idea how to stop it? Also, is if worth taking on the pacing battled? Does it burn a lot of cals?

The hospital were really happy with this plan, they want to re-establish regular eating first, then the rest will follow with his community paediatrician their still saying he hasn't got an ed. I think this is incorrect and they don't want to label him due to his age. My worry is he still isn't having an awful lot of calories, albeit more than he was when he was admitted. He has gained a 1lb this week. He likes milk so I thought that would be brilliant for him but he's refusing it saying the bad feeling will come back

Is she getting anxious? Does it happen at the same time? One parent on the hospital ward used to use a squishy ball to stop pacing and also as a distraction if that's any help

Sending love and strength to those that are really suffering with this wicked illness.
Keep going as there is amazing light at the end of the very small dark tunnel you're in right now. When I was there I thought I'd lost my daughter and thought our relationship would never recover from the horrors we went through. She is so much better now that I can barely dare to believe it. She still has issues and maybe she always will but we are far away from those dark terrifying days.

Getting weight on helped her mental state but our big turning point has been her medication which she's been in for around six months now. It's been a life changer for her and for our relationship so it's definitely worth exploring that. It took her a long time to agree to it though. We both look back and wish she'd started it sooner.

This group is a life saver. Pretty much anything I posted about had been experienced by someone before which made me feel so less alone.

@Proseccoismyfriend no, it's calorie burning :(