Registered: 1365018010 Posts: 525
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My dear forum friends. I don't post often right now and there are so many of you - Colleen Mambear Psychomum Red , dear Charlotte, Nelly , ooKo, Floating. Butterfy, Lavender, Marbella , Irish up , Stubby, Torie, Erica, onetoughmama., my friends in Oz and NZ, that I can't name you all!
I've thought long and hard about posting this, as, like everyone else , I haven't wanted to "jinx it" but it would be unfair not to post an update now, given the tremendous support I have received from parents, particularly those on a similar "time lime " to ours.
My dear D was bad, very severely ill and we nearly lost her when she was admitted, eventually and for the second time, but this time critically ill. I won't go through the medical details but suffice to say she had a week , and was determined to go all the way down to the bitter end. ED was as strong as her hospital had seen, they said she represented "anorexia personified " and described her situation as very severe. She spent the first couple of months IP with ED raging at every turn . Oh, and she hated me with a vengeance too of course.
This week - 16 months after discharge from IP, and out of therapy completely now (!!!) for 4 months she has just returned from a weeks holidayabroad with a couple of (non ED!) friends. It was her first holiday without her family. She came back exhausted , happy , and having been up most of every night partying,'did not lose any weight at all! We dont actually weigh and haven't for about 9 months now but she looks right and the mood is good and that says it all for me . If you had told me 18 months ago that this could happen I'd have laughed or cried in your face. does she eat intuitively now? Yes, she eats "clean" . No red meat but loads of chicken or fish. Fats ? Yes, from peanut butter almond butter, avocados, nuts , coconut oil etc. Rice? Well it has to be brown ?Etc etc etc. Do I care that some might say it's a bit faddy? Not a bit. I embrace it and join in when it suits me or the meal smells nice. There are millions of people who live like this and they don't die from it, either. And every week or so she relaxes more about food . She is open and honest and owns her own breakthroughs. This week she doubled her fats/oil Intake herself because ...well because "I used to be afraid of fats but not now - they're very good for you"!
She looks stunning , fit and healthy and works out to build UP, not down. She is becoming a young woman, fiery, sensitive, gracious, rude . Normal. NICE! She passed all her exams well too and wants to go to university.
I still worry of course, and we still have odd moments when it, and the crippling insecurities pop up unexpectedly. The anxieties and tendency to depression can raise its head - but less and less . I guess the difference now is we are more equipped to deal with them and more importantly she recognises that she HAS to work through them herself and whilst we love her and will always help, she has to take responsibility herself too - the first port of call is try to deal with it, the second is reach out and we are there. I am very proud of her. She has pulled herself up from rock bottom to where she is today.
I am writing this to give somebody out there, who thinks their child is so severely entrenched that it won't ever change , some hope. Of course WR has to be reached first, and after that it is a very bumpy ride. But stick with it. We have done a lot of intensive work ourselves with courses , training, support groups etc. We had to change too . But FOOD, therapy, something to do, family, an interest in anything and lots and lots of patience , love and above all, time and it can and does change for our children. My daughter says she never ever wants to go back to where she was - she says it's horrible. That IS progress isn't it ? I'm not going away - I am sure I will need advice - but In the darkest hours I absolutely could not have continued without everyone here. Thank you for being there.
Registered: 1396016102 Posts: 5,514
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So glad to hear all the progress your d has made!!! Thanks for sharing.
I sometimes feel overwhelmed by all the suffering here - and then my mind wanders to all the bazillion carers who haven't found us and struggle through alone - just wish everyone had such good news as you report. Great job! xx -Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
Registered: 1284535839 Posts: 3,991
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It is great to hear of your D's progress. It does help to hear that even when things seem to have been going from bad to worse that there is light at the end of the tunnel.
__________________ D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Registered: 1296569362 Posts: 5,593
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So good to take a full breath again isn't it mom?
I'm thrilled for your family. Our kids are so brave. We've done Heros work. __________________ Persistent, consistent vigilance!
Registered: 1210867727 Posts: 5,573
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Oh, Doitagain! What a fantastic update! You are one superheroic mama!
May your d continue in her recovery and may you never have to "do it again "! __________________ Colleen in the great Pacific Northwest, USA "What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease." Alexander Pope, 1688-1744
Registered: 1185895491 Posts: 3,377
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__________________ Fiona Marcella UK
Registered: 1363671262 Posts: 664
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I want a happy dancing mama bear emoji to post on here! Hugs to you for all your hard work and the joy of getting somewhere really great with her.
Registered: 1452125195 Posts: 271
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Excellent news! So very happy for your d!
__________________ ed_newbie "Lineage, personality and environment may shape you, but they do not define your full potential." Mollie Marti 15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
Registered: 1371276228 Posts: 1,928
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Thats great news ! Long may recovery last for you all! Xx
__________________ NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
Registered: 1369949641 Posts: 1,841
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Doitagain, So glad to hear this. I think its important for those just new to this & those in the trenches to hear from those who have recovered to know that there is a way through & arrive out the other side. You are a fantastic mum & I am so glad that your efforts have allowed your D to get through to where she is now. This forum has been a place for me to learn so many things that have helped me help our D on her recovery journey. It has also greatly helped me to become a parent carer advocate. I also remember our darling Charlotte as the first person to reply to my first post. Charlotte put me in touch with two clinicians that have helped my advocacy. Others here have helped me connect to with more clinicians & more parent carer advocates. This post has interesting timing given your D's recent trip. Our D is traveling in Europe right now with her boyfriend & doing really well even though there are lots of potential triggers The words of yours in blue below resonate with me as its kind of similar to our D although the time period is different. Her boyfriend has not seen his Polish relatives since he left there as a small child more than 20 years ago & they have never met our D, there are lots of family events with lots of food especially cooked to celebrate their visit & our D is eating it all & enjoying it. ""If you had told me 18 months ago that this could happen I'd have laughed or cried in your face. does she eat intuitively now? Yes, she eats "clean" . No red meat but loads of chicken or fish. Fats ? Yes, from peanut butter almond butter, avocados, nuts , coconut oil etc. Rice? Well it has to be brown ?Etc etc etc. Do I care that some might say it's a bit faddy? Not a bit. I embrace it and join in when it suits me or the meal smells nice. There are millions of people who live like this and they don't die from it, either. And every week or so she relaxes more about food . She is open and honest and owns her own breakthroughs. This week she doubled her fats/oil Intake herself because ...well because "I used to be afraid of fats but not now - they're very good for you"! "" __________________ ED Dad
Registered: 1448281574 Posts: 146
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Thankyou for posting. We are in the trenches at the moment and this gives hope when you feel they will never see the world without ED again.
Thankyou and well done on the fantastic job you did for your d.
Xx __________________ Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice and then IP Sept 2016 - Jan 2018. Now continuing the battle at home...
Registered: 1354398356 Posts: 272
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What amazing news! I'm extremely interested when you say as a family you had to change too. Are you able to elaborate on this? I'm so wondering why our D is not recovering after all this time and looking for any hints and tips that we may have missed. Well done Doitagain and hopefully you can get rid of that name now!
Registered: 1365018010 Posts: 525
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Hello all - thanks so much for good wishes and no, I'll never get rid of the name because you never know! Although maybe just maybe.....
BJ - in answer to your question about change. How we had to change is kind of hard to describe but I'll try. We did family therapy for a long time, with thankfully, someone who turned out to be a superb therapist. If my D could not or would not go occasionally , we went anyway. If my H couldn't go I went, if I couldn't then he went. He went from being a cynic about therapy generally to a firm believer. This helped us to pull together more. We also did a skills based weekly course involving role play discussion etc. It taught me to give totally different responses in times of stress and difficulties. When D was annoyed about us trotting out to support groups /courses etc weekly too!) we just told her that it was not about her at all - it was about us. When she asked us what had been discussed we told her it was stuff helping us to get our own lives back on track now and it was not about her. We'd all been through a bad time and we'd taken a decision to work on ourselves.
It worked very much that when you have parents and a sick child in a circle and nothing is giving AT ALL with the ill person, if one of the other people changes , then everything changes in that circle anyway. Does that make sense? Whatever the resulting change is, usually it can't get much worse. The pressure eases slightly because you switch your own role. Maybe an example ... My D had a slip - the edgy signs were there for a couple of days and suddenly - wham -for a day. I was freaking out inside, but having "learnt " to respond differently I did. So the normal Full on ED behaviour/Mum super anxious reacting in my by now admittedly watered down way (to be fair to myself here) did not occur at all. It was just kindness , sympathy , "you've been through a lot of stress this week when you think about it and you've been doing a great job. You must be worried - it will be all right. You can't expect to do this perfectly so don't beat yourself up so much - youve done a great job and I think this is a slip - just a slip - you know best of course etc etc. and I'm sure your worried yourself. You've made very tough choices every day and your decisions have been so wise so far. You can be proud of yourself - It can't be easy . Im here if you need to talk or if I can help AND (note the use of and not but!) I know you'll keep on making wise choices Then a huge hug. Net result - she burst into tears and said you're so so kind mum, yes it's only a slip I have been doing well, it'll be ok etc. I guess my point is that we have learnt to go straight to her emotions each and every time. It takes endless patience and eventually it comes naturally believe it or not. Our way of operating is now different so everything in the circle changed. To be honest it makes for a calmer household and - a more respectful one too. Because we DO have to micromanage the situation with a teen, at exactly the time when as parents we should be letting go a bit to allow the natural course of development to occur -it so goes against the natural order of things anyway. At over 18 WE have to develop new skills and make the switch from caring for an ill child to caring for a young adult - very different things.
She's a young adult. I can see that fear foods exist but are decreasing and have left it be. Maybe they are not fear foods - maybe she just thinks they are gross.!She knows what she likes , We have a couple of popular cookbooks that embrace this and they are best sellers so sometimes we pick something new and make it together - in the main she does a lot of cooking and asks me to help (kitchen porter me!). who cares! This is how she organises herself and I know that if we go away she'll order what's on the menus anyway and enjoy it . We've embraced the kind of meals she likes at home - to be honest they look really good! Our approach now is more "collaborative" and I guess that is the main change - but she has also had get used to being in the driving seat of her own recovery too somewhat and that we can't do it for her and that we have confidence in her and her own abilities anyway.
The final but very valuable bonus to completely changing our behaviour is this. When issues occur I leave the situation knowing that my own response has only been good. It might not change everything but I know I have done the very best that could done at that time and in that situation , and that helps me a lot too.
Registered: 1396016102 Posts: 5,514
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Great post, DIA. Thanks. xx
-Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
Registered: 1354398356 Posts: 272
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Thanks DIA so much for taking the time to write such a helpful post. This is exactly the kind of thing I need to know. I've got so disheartened with our lack of progress recently but thanks to you I can see there is some tweaking to be done on the way that we respond to our D especially now that she is over 18. We haven't had the benefit of helpful family therapy - we had some parent blaming sort of stuff for a while but what you say makes perfect sense. Thank you and best of luck to you and your family.
Registered: 1438737617 Posts: 1,602
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Awesome post doitagain. I think too often we forget that we do have some choice in how we allow our children/YA to affect us. The only person we can truly change in ourselves and once you change what you are doing, the other person has to change what he/she is doing. Definitely a two way street.
Registered: 1189031616 Posts: 2,020
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YAY! WOOT! HUZZAH!
I've come to understand that so much of recovery or remission maintenance, whichever you prefer to call it, for YAs is about having good coping strategies to navigate around whatever issues remain or linger or simply cannot be done away with. I mean, we all have peculiarities, preferences, and traits that can and do stump us. IMO/IME, a BIG part of maturing is learning to recognize your soft spots and strengths , and how to be pro-active about using the latter to offset the former. I see it as a really positive sign when they are using skills and work-arounds! It can pay to be mindful of the fact that whatever my internal model of Perfect Recovery(TM) might look like, at the end of the day, Kiddo is the one who has to find her own way through, and my ideas may just not be realistic or even appropriate for her! Best to you both! xoxox __________________ IrishUp
Registered: 1385153142 Posts: 1,222
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I am so happy for you and your d, doitagain!! You should be so so proud of yourselves.
xoOTM __________________ D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old.