Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

lol. Yes I’ve had loads to cope with but fortunately, I’m a coper. The temptation to shout ‘Stop fucking navel gazing and think about others’ or ‘Its just fucking pasta, eat it’ is very hard to resist some times but 🤷‍♀️.

Sorry if that upsets anyone, I’m new here.

@Raspberrysins I don't know if it's that so much as fear of losing control? She's said she feels awful when she allows herself to eat more and she can't face feeling like that. She is a very low weight but has kept her curves despite her hair falling out and her periods stopping. I don't know if this contributes to her believing she's fine to stay the weight she is.

Oh @CuppaTandBicky I know exactly how you feel. I feel like that too and also, feel a bit stupid really. I let my DD out with friends and the result is a loss of weight. We need to be kinder to ourselves really though. Actually their recovery isn't all down to us, if it was we'd have them recovered already! It's mostly down to them, they're the ones who have to eat the food and if they won't then there's not a lot we can do.

Oh I relate to this too! Sometimes you need to let some of the anger and frustration out in a safe space. As much as you know they're ill and can't help it, it's very hard when their behaviour can be challenging.

I also think I've said that very phrase about pasta @Desdemonadryeyes

@Weightlossworried have you had any guidance about what she should/shouldn't be doing in terms of activity? It's a fine balance between what's safe for them to do and what's good for their mental health. If they're stuck inside, bored, that's not good either (especially when they're not at school) I actually meant to ask this question today at our appointment but I totally forgot!

Yes they did agree as she's been so isolated socially that letting her see friends despite not completing the meal plan was worth a go. I still feel like I've messed up though. It is a fine balance but one I obviously got wrong this past week.

I guess as your daughter is still quite early on in recovery they may take the view that friends should come and see her at home ideally so she can rest and keep to the meal plan?

In the maudesly book if talks about recovery as being a series of trying things and then making mistakes along the way. That is expected and normal and we must be best ourselves up

Of course you haven’t messed up @Weightlossworried. I thought I’d really messed up with dd when I got so fed up with the excruciating control she had over me one cold day back in January. That day I gave her a few home truths. I wasn’t really even that harsh, but it was enough to destabilise her. And as a result, she refused meal plan and halved her intake overnight.

But you know what? It’s the best thing that could have happened, because it changed the relationship dynamic. Unfortunately dd didn’t learn much from it. But the process that followed taught me to stop being afraid of the ED and as a result I can now allow myself to stop being controlled by my dd. I didn’t ever regret it as such, but wow the fall out was hard!

@CuppaTandBicky
I am sorry your dd also had a loss. You seem pretty philosophical about it. And that is really helpful when dealing with this affliction.

Idk what your experience of the supermarket was. I am imagining that your dd may have made a b-line for weight watchers or low fat. Idk if you became a rabbit in headlights. I know I would have. These days I know to say things like: These aren’t nutritionally balanced. That’s not a full meal, you will need (eg some chips) and some protein with that. It would be irresponsible for me as a mum to buy this for you when you’re in recovery from an eating disorder.

We had a song and dance yesterday. Dd decided she didn’t have time to eat with us twice this week. I had to high stake it in the end and ask her why we would keep funding her if she couldn’t make time for us. She then wanted to just eat dip and Doritos. On the plus side, she was only engaging with dh by text and did great with my help, She came home, had her dip and I made a whole load of bits to share. Although she said she wouldn’t eat any of it, she did, including a piece of chicken fried in olive oil, which is the first time since becoming ill, so a definite win!… and that is why it’s so important for dh and me to work as a team…

I spent hours on this and am so sick of things like this being a major issue.

Yep similar sort of thing, just spending ages analysing the calories on everything, even when people are trying to get past etc. I tried to explain it makes no difference, she has to have x amount of calories, x amount of protein, carb, fat per meal, so if, for eg, a mozzarella stick has 50 calories but a nugget has 25, she will just have double the amount nuggets to make up for it (and I know from experience if she has a lot of something, she gets overwhelmed - regardless of calories content - But logic doesn't work against anorexia. I know this! Why do I keep trying it? Cue calling me lots of names loudly in front of the whole supermarket and everyone probably thinking what an awful child I have raised. If only they knew! Maybe nobody noticed. Unlikely though 😂

In hindsight it was just overwhelming for her and not a good idea at all. I was just wanting a few more options for dinners as we are stuck with 2 or 3 very similar dishes which must get very boring!

Wow amazing about the chicken in oil. That IS a win! My aim in life nowadays is to get away with a bit of butter on a new potato and her not wipe it off with a tissue. Goals!!

@CuppaTandBicky
No point stressing about what people think. People love to point fingers. As for discussing calories, I’ve always been told not to with my dd. What you said for someone, who is obviously very unwell, will.be too hard to process. So I can understand her reaction. She can only think in very black and white terms at the moment. The brain alone needs 500 calories a day to function. And when it is starved, it shrinks.

I would also be careful not to buy into her obsession with counting calories. I understand you need to for you to do this for your dd. But it shouldn’t be with your dd imo, especially when her ED seems to love calorie counting, I presume as a means of control.

As for eating the same thing again and again. This is totally normal behaviour for someone in recovery, especially if autistic/ ND. These foods will feel safe. I therefore wouldn’t concern yourself with variety at this stage. You have enough battles right now. The most important is to get your dd to eat.

My dd used to wipe oil off with a tissue. She won’t eat butter. She did for a few weeks one time as her brain signals must have got through and she literally ate chunks off a knife. Then it stopped.

Thanks @Mummyoflittledragon , a good reminder to take the risk and say the hard things sometimes and that getting fed up and delivering some truths isn't necessarily a bad thing. The chicken in oil and your DH getting involved both sound like definite wins!

@CuppaTandBicky , it's all such a learning curve isn't it? Now you know she can't come food shopping with you. But it was worth a try, she may have been fine. I know my DD gets angry if I assume some things are going to be hard - she doesn't like people stereotyping her as 'an anorexic'. She actually happens to be fine in the supermarket but we only knew that by trying - it could have easily gone the way it went for you. And if I'd just refused to allow her in the supermarket she would have been resentful. That's my long winded way of saying I think you were right to try shopping with her and now you've learned something new about what's hard for her and what triggers her so you're fore armed/warned.

@CuppaTandBicky
I hope my last post didn’t upset you. I get how hard it is.
You asked me about the bread. Not Danish, sourdough. She doesn’t restrict with bread these days, so this is an ARFID type behaviour, rather than restrictive.

Thanks to you and @Weightlossworried for recognising my win. It just seems so crazy when you stand back and look at it. Dd has never been the easiest to feed. I remember crying when she was 2.5, because she ate a chicken nugget and that meant I could sometimes take her to McDonald’s.

@Raspberrysins how are you feeling about going back to school? I think you only have a few days left so that’s good! I’m glad you had the time off. It does sound like you’ve achieved a lot, and it’s great you have the summer together now.

@Weightlossworried it made me so happy to read that you had a different nurse and you’re starting some therapy. I hope it goes well for you. I also hope you don’t see the other nurse again!

@CuppaTandBicky supermarkets, they still bring me out in a cold sweat. Definitely avoid if you can, online delivery is your friend!
I hope you’re getting the help at home. Are the ED team coming to your house? It’s so good to be out of hospital, but like I’ve said before it can also be mixed emotions as the security of hospital is gone.

@Desdemonadryeyes you sound so strong. I hope you’ve got real life support too. You have been through so much. You are welcome here and your fruity language is welcome too! Sometimes all I have are swear words to help me through the day!

@ThatSparklyOliveBird how are you doing? Handhold for hospital. I’m hoping you’re home soon and they have a plan in place. Like I said to @CuppaTandBicky coming home can be hard. I reallt struggled at first, I wanted to go back to hospital many times as things there seemed more structured and my daughter listened to them in there!

Sending everyone love and strength. Thank god the temp is lowering. It means we can af least ger some sleep. Anyone got air conditioning and want to show off about it? If had it I would!!! Xx

Hi,

No the team have never come out to the home although we have only been home just over a week so maybe that's something that will happen? Next big step for us is upping the calories and changing up the meal plan in order for weight gain to begin. She still hasn't gained anything.

This weekend we have tried a trip out including lunch (took a packed lunch all measured out) all went well but she was tired towards the end.

I wish we had air con! Last night was the worst!! I wonder how much it is to get It installed? Probably too much..

Hope everyone is having a good weekend.

@ThatSparklyOliveBird I hope hospital is going ok. I know it won't seem it but it honestly is the best place to be! If we get told at our next appointment that she has to be readmitted, I will feel a small sense of relief! Never thought I'd say that. Having said that there has to come a point when you start to transition home so I hope that's on the cards for you.

Worry of the week for me is work. I don't know how and when to go back and it's stressing me out. The guilt of being off. I'm not someone who is EVER off work! I've gone in on days I've been really poorly because I don't want people to think I'm skiving. Every time I go out anywhere I'm hoping I don't see anyone from work.

This illness is so uncertain! We have a good day and I think maybe I could go back soon maybe on reduced hours, but then everything goes wrong and I think no... no way.

@CuppaTandBicky I totally know what you be an about work. I had to take 6 months off as it was too hard not knowing what was going on. I was trying to keep a hand in but I had no idea what each day would be like. Can you officially take time off? What have you told them at the moment? Xx

Thanks @Pearl97 and @CuppaTandBicky, yep another slow weekend in hospital!! I completely get what you're saying though, while I can't wait to be home am also somewhat dreading it, she's very compliant here and we've reached a routine, which I know will change once home. Small update here, from tomorrow myself and dh are allowed to sit with her for her meals, with the potential plan that if all goes well and her weigh ins tomorrow and Thurs are fine that we can take her home for a meal on Friday! Small steps, but progress at least :)

@Pearl97 signed off at the moment but that's only temporary.

I think it would be compassionate leave after that but that's unpaid. I have a mortgage and bills to pay so that would not be an option sadly. I had literally only just remortgaged when she got poorly so the payments are ridiculous. I really wish I could just take some kind of sabbatical for a year and focus completely on her recovery like a mother is supposed to. I feel like I'll be completely abandoning her and letting her down when I go back.

@ThatSparklyOliveBird that sounds really positive. Things are obviously going in the right direction. It's great she sounds like she is on a decent amount of food before they consider home leave. Try and stay really chilled with zero expectations when it happens. I just assumed if I made her the exact same meal as hospital she would eat it and that was not the case. My expectations were too high and that led to frustration. I hope the week continues to go ok for you all

@CuppaTandBicky I totally get what you mean about the mortgage etc. I was surprised how easy I could take a mortgage break like in Covid. I really hated not working though and it did create a lot of resentment. I wanted to get back much sooner than I did. I would say you can only do what you can do. I remember saying to the ED team in hospital how on earth am I suppose to do this, I like my job and I want to work! Xx

@ThatSparklyOliveBird that’s brilliant news. Huge progress. I would prepare yourself for discharge! They often say go home for a meal but in reality they are looking at discharge. We had horrendous home leave but were still discharged. I think @CuppaTandBicky would say the same xx

I am absolutely useless at anything financial....I didn't even know a mortgage break was a thing? Do you just apply to the bank and explain why?

Oh yes definitely agree about the horrific home leave!!! They seemed to base it more on her not needing monitoring anymore rather than how home leave went. I think if the BP and and heart rate are improving and are no longer worrying, the medical team basically want the bed back! (That's how I interpreted it anyway)

@CuppaTandBicky yes it’s really simple, I would definitely recommend at least trying.

Totally agree about wanting the bed back! Xx

Thanks both, the team keep saying gradual discharge but I agree with you, if there's community support available I don't see how they can justify keeping us in a hospital bed, as her HR and BP are much healthier now. Will see how the next week goes anyway, but prepare myself for home after that!

I completely agree about the stress of work. My job is actually a temporary contract only and finishes in a few weeks, I've obviously been a nightmare employee with needing time off but am kind of relieved it's ending, so I don't have that pressure hanging over me. What to do about money though is a whole other issue!! Hope you can sort something out @CuppaTandBicky that will work for you, such a hard position to be in xx

Take advantage of the extra time in there. I wish we had been on a higher amount of calories before discharge because increasing the amount (likely by quite a lot!) is now completely my responsibility. She would have complied in hospital. That said, there is also the risk of becoming "dependant" on hospital I guess. I really hope it goes OK for you. Are you managing to get some time at home yourself?

I agree about taking advantage of the extra time, although I was soooo keen to leave!

@ThatSparklyOliveBird I really hope this week is going well.

@CuppaTandBicky If you need help with meals at home as for the HIt team to visit Home intervention. It shouldn't be all down to you.

Hope everyone else is doing ok xx

I hope everyone is bearing up. It’s been a tough few days here. It’s the relentlessness of it all. And I am absolutely exhausted. I knew this post A level period would be tough. Dd is very much in the I’m going to be 18, I can’t wait to leave home mindset.

I think the holiday, which is now a week away may be an eye opener for her, because she has no idea how to look after herself and no appetite to learn. I am standing back more and not bailing her out so much, which is also causing headaches, but she needs to understand what adulting is.

One of dd’s friends told her she is such fun to be around, because dd’s reality is so different from actual reality. It was funny, but also a major issue as a parent of a daughter determined to move 2.5 hours away, who is still so far from recovered and is yet to admit she has an ED.

Not doing so well as I am concerned all the progress we’ve made and my gargantuan effort may just evaporate in no time.

@Mummyoflittledragon

It is impossible to know when to step in and (try) to direct them and when to let them make their own mistakes - because a mistake for our dc might mean undoing months of work and hard won progress.

I am also struggling, you might remember my dd just finished a levels. Atm she is just lying in bed avoiding life and of course meals. She seems set on taking a gap year which is probably essential but brings it's own problems.

I try to tell myself this is normal teenage behaviour, but with a well teenager I wouldnt be tip toeing around and would be telling her to get some sort of job - if just part time.

All this time I can't concentrate on work and I am worried about my job.

Some advice does say that they have to try new hard things - which will mean failing and so learning - maybe the holiday can be seen in that context? Hard if the odds are stacked against.
Sending solidarity ❤️

@Thisnowtoo
Thank you. I am sorry you’re struggling so much as well. ❤️ Worrying about your job must be hugely stressful. It also must be so hard when your dd has zero motivation to do anything. I hope that changes for her and she finally gets bored of languishing in bed. In fairness, she probably has complete burn out and needs this time to herself to relax and recover. And a year out sounds good as long as she can use it to rebuild her strength and stamina. Perhaps nudging her to remember to eat could help?

My dd has lots of motivation, but only to do stuff she wants to do. She can’t possibly take half a day to see family this weekend to celebrate her birthday for example. She’s too busy doing what she wants and prepping for her holiday. That means she’s hardly going to have any gifts, but I’m not going to magic something up, she’s had such a lot already.

I agree we wouldn’t be tiptoeing around well teens. I think a job for my dd would have been great and her friend suggested she get a job. But dd is away too much. Her friend then suggested she do some volunteer work to put something on her CV. Dd turned her nose up at that.

As for the holiday, I think dd will be fine as the friend in the year above is there. Perhaps the boy, who she’s had a bit of an on / off relationship with will help as well. Dd is far more reliant on me than she likes to admit. I just hope I’m not going to get a panicked call from her.