Registered: 1454180612 Posts: 3
Reply with quote #1
First, thanks to all of your posts and kind responses. This website has provided a tiny bit of sanity in my world.
We're in year 3 of my now 14 year old being diagnosed with AN. The first year and half, we were getting sub-standard treatment by our team of caregivers, but didn't realize it until they admitted it wasn't working. We switched over to UCSF ED clinic and although it hasn't been perfect, I'm sure it's better than what we were doing before. In theory, she's WR, according to the UCSF team, but "she's thrown them for a loop" in that she's not responding as would be expected. Fantastic. A week ago, she reached the 120 lb mark - the highest weight she's ever been and she completely and utterly lost it. That weekend was just horrific. I could go on and on about the issues we're having - you've read them all hear before. I'm growing increasingly frustrated with what's it's doing to our lives and can't help but think what it would be like if we weren't dealing with this. We have a 17 year old daughter as well. The four of us actually have a great time together when the younger isn't in the throws of the disease. Lots and lots of laughter. I can't help but think about the spontaneous adventures we could go on, but so much of it is limited by the eating - going out to eat is really, really difficult. (We're trying to take her out once a week - just with one parent. Why have all four of us suffer?) I planned a nice beach vacation for a month from now - I just need to find a way for the four of us to have some joy. My husband really didn't want to go, but he realized how it important it was to me and appreciates what I'm attempting. It'll be hard to get her fed, but hopefully, the sun and sand will make up for some of the pain. I'm sure a lot of my feelings are being triggered by our 17 year old starting to look at colleges - she's a junior so we still have her another 1.5 years. The four of us could be doing so much more together. My husband and I are very good partners with the ED, giving each other lots of breaks. (We realized quickly that automatic forgiveness for just about everything really goes a long way.) I'm worried that I'm starting to lose my compassion for my child. We've had a pretty good weekend. She was at a friend's house earlier in the evening, so she ate dinner when she got home after the 3 of us had eaten. And she started to lose it. I made a vegetarian stew which was very mushy so she couldn't tell what was in it. Plus some chicken wings. I don't know if something happened at her friends house that set her off. From the beginning, I've had to pretty much shut down emotionally when I'm dealing with her outbursts. They can be so terrible (you all know) that there's no other way I could get through them. And when she asks me if she has to have dessert - and she asks EVERY single night, which makes me insane - I coldly say yes. In fact, I'm pretty cold any time I'm dealing with ED. I know that withdrawing my love is not the way to deal with this, but sometimes I just feel hurt and want her to know that she's hurting me. Yes, yes, I know it's the ED. I just feel very sorry for myself. She's always hated empty platitudes. After the worst meltdowns, I do make sure to tell her I love her and that I'm not going to let the disease win. Not sure what I'm looking for. Anyone have any advice about my seemingly lack of compassion? I do love my child and I truly think she's knows that. At times, I just have such a hard time showing her any sympathy. Thanks.
Registered: 1452437794 Posts: 1,364
Reply with quote #2
Sorry you are here, but welcome. So sorry to read this, It really is awful the way this horrible illness hijacks the family. UUGGHH. I am wondering if you have tried meds? Best wishes, TF __________________ Son,DX with AN, (purging type) age 13 in October 2015 , (4 months immediate inpatient) , Now Phase 2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Registered: 1284535839 Posts: 2,795
Reply with quote #3
Welcome to the forum. You are not the first and will not be the last to say they are fed up with ED and how it has turned their lives upside down. We get it, really we do. You just want your normal non ED life back, seems fair enough.
We also know that you love your D, that is why you are here. I can only say to help you, that it will and does get better. I will admit at times to letting ED take a bit of a back seat. For example, we went away while D was quite ill- around 18 months in. I rented an apartment and made her the same meals as I would of at home, we had a fairly limited repertoire at the time. So long as she kept on eating those safe meals for the week, I was happy and managed to enjoy the relaxation. You will get through this, and life will be good again. It will however be different. __________________ 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: 1429045687 Posts: 457
Reply with quote #4
Welcome to the Forum, Verytired.
Your D will know that you love her. She may not know it now, but as her brain heals, she will know and she will know that you have battled this disease for her, when she couldn't do it for herself. She will also be aware of the sacrifices that the family has had to make over the years. I like the sound of your planned beach holiday! We "risked" a holiday, when my D was just starting to improve, and it actually worked very well for us and I believe it gave her an incentive to actually enjoy herself. There was an occasion where I had to take her meal back into the restaurant kitchen and ask them in my finest schoolgirl french to remove all the melted cheese from meal (she was managing fries and a chicken burger for the first time in a very long time - the cheese was a little too much!!), but I was prepared to do it, and it qas quickly sorted out. They gave her some free ice cream by way of apology - and she ate it . My D has very little memory of her emotions (or mine) from when we were in the trenches. But like you, I separated my D from the ED. I spoke to ED in a functional and emotionless way but with authority. I knew best, and I knew what I was doing. End of. I also had very little compassion for anything ED related, but, like you, made sure that she knew that she 100% had my support for everything else. Even now, D has been WR for 18 months (with a brief relapse a year ago), if ever there is anything that could be ED related behaviour (sometimes it is hard to tell if it is just teenage behaviour) then I go cold and actually feel the compassion leaving my body. Recently, she pushed some non-ed related boundaries at home (big time, risking her own safety), and my "brick wall" kicked in big time. It wasn't until 12 hours later, that I allowed myself to have a few tears about it, because I found it very frightening. I think treating the ED with comptempt really helped me to keep it separate from my D, it is very hard NOT to feel resentful and I think everyone here on this forum would agree with you. There have been many exciting, important occasions, rites of passage and milestones missed because of this illness. We all HATE ED for that. Good luck x __________________ UK - South East 17.5 yo D Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from . 2016: 3 x hospital admissions. 2017: Currently attending CAMHS CBT. WR, at college, living life to the max. On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
Registered: 1268143852 Posts: 1,246
Reply with quote #5
Dear Very Tired,
I hope I can help just by saying that our family has 'been there, done it' (although I have no experience of siblings, my son is an only child) and.... got through it! My son (who fell sick with anorexia in 2009) is now age 23 and recovered. But during those deep dark years I felt so very much like you do, so very often - and I imagine that hoards of other parents on this forum will identify with your words, too. Your name sums it up 'Very Tired'. All this seeming one-way love and compassion gets so exhausting. We are human after all... Think of it as the eating disorder you're losing compassion for, not your child. After my son recovered he told me that deep deep down, under all the vile ED behaviour and violence, there was the 'real' S. Underneath the ED facade he was desperately thankful that we were on his side and fighting for him. In 2012 (when he was well on the road to recovery) he gave me a card on which he'd written "Thank you for being the one who never gave up". I hope this helps. __________________ Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver. Please do check out my blog: http://anorexiaboyrecovery.blogspot.co.uk/ Get free PDFs of my past blog posts 2011 - 2016: http://bevmattocks.co.uk/blogspdfs.html (Easier to read; more linear than clicking around the blog itself.) 'Friend me' on my Facebook page: https://www.facebook.com/battymatty76
Registered: 1482344938 Posts: 9
Reply with quote #6
Hello My Dear Very -
I completely and totally understand, bc I'm going through the same feelings with my 13 yo D. I am new to this (I'll NEVER get used to this ED) and I am trying to figure out a way to take care of myself, my other daughter (whose 8), and my struggling daughter. It is getting to the point where I don't believe anything she says - that all is clouded by the ED. It's like living in some kind of nutty swirly world - food, convincing to eat food, hearing excuses, wondering about food, looking at my malnourished small daughter, wondering when she'll get her period again, which doctor are we seeing today, will the lab be able to collect blood from her (they haven't been able to the last 2 times they've tried) etc., etc., and it is damn tiring. BUT - thank goodness you found this wonderful forum. The people on this site are angels. They may not know it, but checking into this site, writing out my questions, feelings and frustrations have been my mental lifesaver, and I know it has been for you too. We must have faith that this will get better, and your feelings and thoughts are a part of your experience in this season of your life, and the life of your family. I'm giving you a big hug, and telling you (and myself) to keep moving. You stay strong.
Registered: 1438737617 Posts: 783
Reply with quote #7
Oh verytired, I truly appreciate where you are right now. My daughter has been struggling for more years than I care to admit and over Thanksgiving had a serious mini relapse where she decided she was done living with me and my rules and lost an incredible amount of weight in less than a week. We have been doing this for years and years and she knows not eating sends her right back into a tailspin yet she did it and at a time when I had just had surgery and was not up to my usual. Quite frankly I wanted to move her out and never deal with her again but with the help of her team we were able to rein her back in and get her turned around quickly. She managed to avoid hospitalization by mere hours and she has pulled herself back together like a champ. That doesn't mean though that I was happy, appreciated it or felt any sympathy towards her about it.
Maybe the time for sympathy is past and what she needs from you is firm boundaries around the emotional outbursts. During this last mini relapse, I set up some new rules to help me save my own sanity. She is no longer allowed to ask if she has to eat what I give her. Seems very simple but at least I don't get the incessant "do I have to eat this" anymore and it has helped more than I thought it would. She has time limits on eating that she has to meet and if she can't, then she drinks a supplement. We don't discuss it; those are the rules. I also have far less patience with the emotional outbursts. If she starts going off, I just tell her to stop and if she cannot, then she goes into another room until she has regained control of herself again. It may sound cruel but she has really stepped up and is doing much better with emotional regulation now. Also I no longer limit my life. I did for many years and with this mini relapse I don't anymore. I go out to dinner and she goes with me whether she likes it or not. For your beach vacation, I would tell your daughter that her ED is no longer welcome and you are all going to have a good time together without it. I have had vacations (I love cruises) when my daughter never left our cabin and that was fine with me. I did what I needed to in order to keep me healthy and as long as she was safe and had eaten, she was allowed to stay in her the cabin if she wanted. I would really emphasize the no asking about food so she just eats what you give her and that could help you avoid some stress. Compassion fatigue is a real thing and it happens to all of us. There is nothing wrong with that. I think you just need to focus on yourself, hubby and your other daughter for awhile now that your younger daughter is weight restored and really start putting some limits around what behavior you will tolerate and what you won't. Just my two cents from someone who has been doing this for a long time. Welcome by the way!!
Registered: 1414695482 Posts: 811
Reply with quote #8
Hi very tired, we are only human and of course our compassion runs out at times. You are doing a great job . We do not have younger children but our older children were home a lot in the earlier days of my d s illness and it was so upsetting for everyone. I had to start having weekends away with my non ed d also as we missed out on time together. We need to be firm and live life as normally as we would without ed I was unable to do this in earlier stages. We are also three years on this journey and Iregularly run out of compassion. Be kind to yourself you , we need to be compassionate at times and very firm at times.
__________________ Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary.
Registered: 1452125195 Posts: 257
Reply with quote #9
Compassion fatigue - that's exactly what it is mjkz. I've definitely felt it. When we were really close to weight restoration and those last few pounds that were so hard. And then a couple months after weight restored when growth kicked into high gear and anxiety levels spiked. I felt all done. Like I couldn't do it anymore. Hated my life.
A few things that helped me through: - Eva Musby's meditations - daily talks with my mom about the difficulties and frustrations and sharing a few laughs at the absurdity of it all - long hot showers - retail therapy - reminding myself over and over "She can't help her behavior, she is very ill, and I am saving her life every time she finishes a meal / snack" Yes, your emotions are totally normal under the circumstances. Keep going. __________________ ed_newbie "Lineage, personality and environment may shape you, but they do not define your full potential." Mollie Marti 14 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 now chasing growth and taking one meal at a time.
Registered: 1454180612 Posts: 3
Reply with quote #10
Thank you, thank you, thank you. What an amazing community.
Toothfairy - she's been on prozac since the beginning. Have increased the dosage before. Thinking of increasing it again. BattyMatty_UK - if I ever get a card from her thanking us for supporting her, I'm sure I will think of you while I'm breaking down in tears. Surprisingly, I have hope that it could happen. She's a sensitive kid and well aware of what the disease is doing to the family. Mamabeardoo - As my kids say, "Same". " It is getting to the point where I don't believe anything she says - that all is clouded by the ED." We talk with her openly about how we can't believe anything she says and she gets that it's a perfectly rational conclusion. She often starts sentences "I know you can't believe me, but..." mjkz - First, Thanksgiving is always a rough time for me because she was diagnosed right before the holiday and it's my favorite holiday and I love cooking extravagant Thanksgiving meals and watching my family enjoy them. But her stress level is so high on Thanksgiving, it just sucks the life out of it. When we hit our 3rd ED Thanksgiving last year, I just wept. Secondly, thanks for the words of advice about setting some boundaries. Our therapist has implied that it might be too cruel, that she needs our sympathy. But I'm wondering if it's a "fake it till you make it" situation. Luckily, she's always been relatively compliant (ignoring of course, the melt downs where I'm SURE a neighbor will be calling the police. I'm truly surprised that they haven't shown up at our door yet), so if I set the rules, I'm sure she would follow them. Will discuss this at our therapy appt this week. K63 - I try to spend time with my oldest one on one. She actually reaches out to me too - "Mom, let's go to the tea shop or the thrift store". We're doing a college tour in April for a week and I'm so looking forward to spending the week with her. She just said to me tonight, "Mom, I think it's going to be REALLY fun". And thanks to all of you for the "keep going" support. When my husband or I leave the house to run an errand, the one staying home often says "So, are you coming back?", half seriously acknowledging that leaving sometimes feels like a good option.
Registered: 1438737617 Posts: 783
Reply with quote #11
Verytired, Thanksgiving sucked here too so I can appreciate what yours was like.
Our therapist has implied that it might be too cruel, that she needs our sympathy. But I'm wondering if it's a "fake it till you make it" situation. You hit the nail on the head. You do fake it until you make it. There have been many times when I have felt like I could not deal with the ED one more day and you and your husband's comments when you leave are funny but so true!!! You do have to fake it until you make it. Your therapist sees you for an hour a week and doesn't have to live with the way things are at home. One of the things our therapist told me was that my daughter was truly adrift in a sea of emotions and had no idea what to do. By setting limits on what behavior I would accept, I started reinforcing being able to rein in the behavior. Her consequences were not cruel or unjustified. If she couldn't control herself, she stepped into a room that we deliberately set up to calm her down. It was a low sensory room that was dark with soft things to cuddle up with and soothing music, etc. sort of like one would use with an autistic child. When she was calm again, she came out and life went on. If she started asking about whether she had to eat this, I just cut her off and said the question did not need to be asked. I always made sure she was safe but she did need to learn how to self soothe too. I took her out with me to eat even as hard as it was and I went out with friends because I wanted her to see that there was a life out there for her to get back too. I knew it would be hard for her but it was teaching her skills that she desperately needed. Interestingly my comment about her ED on vacation and how it was not welcome actually worked. I did it thinking it would never work but another fake it until you make it situation. We had a great vacation with still tense meals but far more relaxed than at home. We ate often out on the deck with our ocean view and it seemed to distract and calm her so she was able to eat more easily. While I can appreciate it may sound cruel, we got stuck in that overwhelming emotional outburst stage for a long time and I knew we needed a new approach. Sympathy for us simply reinforced how hard and bad this was for her and upped the emotions.
Registered: 1369949641 Posts: 1,598
Reply with quote #12
verytired, There is some thing I learnt in my teenage years & youth/young adult years from Alateen & alanon about being able to separate the person from the illness/disease that is impacting on them. Its kind of like seeing two entirely separate people or personas & behaving & reacting very differently whith each. It also helps to keep love compassion understanding & empathy for our loved one happening while making dealing with the illness disease not so destructive for ourselves. In many scenarios the person with the ed gives the voices/thoughts that form the noise going off in their head a name our D had two one in the start of her illness then one after her relapse. My wife & I learnt these names & used that to help separate our D from her illness/disease. We also made up names of our own to help do the separation. So from my perspective I see you as loosing compassion for the ed I will call nasty B!!**## while you keep your compassion for your real D stored inside you for when your real D shows any signs or glimpses of being without the ed. __________________ ED Dad
Registered: 1464124658 Posts: 3
Reply with quote #13
Hi Very Tired
I completely and utterly understand what you are going through. My daughter now 16 dx age 11 which sounds similar age to yours - we have been doing this for 5 years. iIt is impossible not to imagine and hear what everyone else is doing all the time and how much fun we would all be having/have had if not in this desperate situation. Like you I have had to emotionally detach in order to cope but what is important is to know it is the illness that we hate and resent, not our child. They do personify it and at times I have questioned my continuing love for her but I KNOW that I love HER but I really HATE what I see and there is a huge difference. if I feel really angry I am not afraid to say that I hate her illness and what it does to her and all of us. Re holidays etc. Taking the food is the best option and lower expectations of how things are. In our family my husband and I have learned that it is better if one of us deals with her at a time thereby giving eachother a break plus the tension around what each of us might think is the right or wrong thing to say, is not present. The AN cannot come between us. I am sure you are coping just like everyone else copes and it is never easy. Good luck and don't feel guilty, we all love our poor children but boy do we hate the Hitler that is in their heads....
Registered: 1452437794 Posts: 1,364
Reply with quote #14
" And thanks to all of you for the "keep going" support. When my husband or I leave the house to run an errand, the one staying home often says "So, are you coming back?", half seriously acknowledging that leaving sometimes feels like a good option."LOL !!!!! You are doing a great job in such extreme circumstances, no wonder you feel like you are losing compassion, this illness drains the life out of you. I hope things move forward for you soon and your D gets further into recovery asap. It is great that you have found a better team. Best wishes. x __________________ Son,DX with AN, (purging type) age 13 in October 2015 , (4 months immediate inpatient) , Now Phase 2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Registered: 1363671262 Posts: 647
Reply with quote #15
Hi Very Tired,
I know what you mean it gets hard to be on top of our game emotionally when the illness drags on. D just turned 14 and fell ill 4 years ago this month. She is not in remission, we have to plate her food and cook hi cal, though she is still growing taller by the day so that may be part of the challenge. But in any case it will be 4 years in March from when we started treatment. I am so very tired too. I have had times when I just feel frustrated especially when her behavior peaks up, which has coincided with weight loss or failure to gain, it seems. One piece of advice people have given me is to do as much fun with her as you can to keep the positive predominating. Of course you are well versed in separating the illness from your daughter. But it is human to feel burnout when you are at the 3 year mark on this hard trudge. Best of luck and know that you are not alone... and that you will get there!
F.E.A.S.T. Outreach Director
Registered: 1185889110 Posts: 5,864
Reply with quote #16
Frankly, that it exhausts us and we struggle to keep up our spirits strikes me as a sign that we're still normal! We're talking about living under stresses that we never dreamed we'd face, in an unpredictable present, not completely certain future! When that becomes normal then ED has really won!
That said, it isn't sustainable to be in crisis mode and miserable (and it IS) 24/7/365. So with extraordinary effort and dissapointment and worry we need to add in more than equal amounts of extra self-care and positivity. Not just keeping the oxygen mask on, but adding a SWAT team of support. Take the moments of respite that appear. If something seems "selfish," like a special outing or pair of shoes or bubble bath re-frame that as battle pay and DO IT. It helps, I find, to pretend you are your own twin sister. What would you do for your twin sister if she was going through what you are? What might delight or distract or soothe her? Do that. Because it is ED's intention, and he is highly qualified, to wear you down and to test your compassion. Fighting ED often includes fighting the way he steals our sense of what normal was in the first place, and how he makes you misidentify the problem. And, ironically, that leads to more ED and less happiness later. Those of us with recovered kids can ALL relate to your fatigue and waning compassion: it goes with the territory. But what you are doing NOW is what keeps all that from being permanent. What you are doing now, and your exhaustion is a sign of how hard and well you are doing it, is what will make future holidays and dinners and vacations so incredibly sweet. __________________ Laura (Collins) Lyster-Mensh F.E.A.S.T. Outreach Director
Registered: 1323616425 Posts: 749
Reply with quote #17
Dear Verytired, I have been so moved by your post, I've been thinking of you as a soul sister. What pops out to me is a sense that you have great strengths. Your love and your joy are there. You and your husband are supportive of each other. You are rich in resources.
I do love my child and I truly think she's knows that. At times, I just have such a hard time showing her any sympathy. I imagine there are 2 reasons you might worry about low compassion: 1) if it is not useful to your daughter and 2) if it affects your wellbeing. We don't know about 1) for sure. I have seen the power of connection and compassion. But as you'll have seen from others' replies, sometimes a business-like briskness may be just what's needed at a particular moment, and it would work because she is secure in your love overall, and you have a loving family, and fun, and holiday plans and all those life-enhancing things you are including her in. As for 2), having an open heart feels great and makes you well and powerful, though it's also a chicken-and-egg thing. When you're receiving too many arrows it's really normal and human to close up and go into self-protection. When I notice this in myself I go for patience and self-kindness, and maybe seek out friends or listen/read stuff that nourishes the soul, and eventually I find myself opening up again. Someone mentioned guided 'compassion' meditations I've created for this very purpose. Anyone who is drawn to these free resources, you could start with the longer step-by-step one: youtu.be/kRFz6rB8bHE?list=PLVgyQbyKQSBHUbIDLlc7t3v7bN0lmLcve and the playlist will show you the others.
Kristin Neff (self-compassion.org) is another provider of free audios that can make you feel more like yourself, and another hero of mine is Tara Brach and her podcast talks.
You and others might be amused by the next few minutes on this video, where Marshall Rosenberg (creator of NonViolent Communication), armed with puppets, demonstrates the difference between love as a warm cuddly feeling (a changing emotion), and love as a constant deep truth within you, which is very evident in your moving post. Here's the link, starting 1 hr into the video: __________________ Eva Musby, mother, author, resources for parents at http://www.evamusby.co.uk Also Youtube videos for parents on https://www.youtube.com/user/EvaMusby/playlists
Registered: 1398657817 Posts: 255
Reply with quote #18
I certainly can relate to a lack of compassion. And to be honest, sometimes, that is a good thing. I believe that ED is very manipulative, and when our kiddos know we will give in because we feel badly for their situation, it will use it.
I have no idea if that is happening in your case, but I believe it happened in mine. I was so concerned with her emotional well-being that sometimes I parented out of fear (still do if I'm not careful!) instead of drawing a line in the sand when it's truly for her own good. Being detached but firm in keeping her on the right track may be just the thing you need to do to keep going. And in DBT, it's also a good way to keep emotions cool and calm, which is so vital to fighting ED. You are normal. Just the fact that you are still fighting and here expressing your worries about being compassionate is proof positive that you are an awesome mom. You love your D, but sometimes, that love has to be shown by being firm, businesslike and devoted to getting the food in. It's also ok to be frustrated about the impact on the family. I have another D also, and there are times I get so mad my ED D seems to suck the air out of the room with her drama, attitude, crises, etc. You sound like you have a great H, which is a blessing. You have this. We totally get it. It does get better. I promise. __________________ 17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Registered: 1475622423 Posts: 40
Reply with quote #19
I have read and re-read the posts and you are describing my life as it is, every day remains a battle ground and simply it is only yourselves on ATDT that understand buy my husband who remains calm in the constant storm has saved many refusals to eat and inticed the food to go in. D is eating but is wrought with self contempt on a daily basis- shouts at every dinner " you are giving me way more than every one else" so much so we as a family expect this outburst we are one year into AN of a 14 year old girl nearly 15 whom really wants to recover and develop but is very pubertally delayed, this is a considerable worry as she is not at her peers stage of development i read that until she is well oestrogenised she will not make a recovery . compassion is running thin due to my closeness to her (possibly similar personalities-taking things to heart) i understand where you are coming from. we go a pound up one week and a pound down the next and it is soul destroying. with you in spirit and trying keep calm and carry on A.
Registered: 1454180612 Posts: 3
Reply with quote #20
Thought I'd post a happy update about our beach vacation. We took a redeye and arrived mid-day. We put on our swimsuits and started to head out to the beach. This was a very relaxed place. Less than 20 guests, private beach, not a sexy bikini in sight. Mostly middle age and older. My daughter put on her swimsuit and a rash guard and then just started to lose it completely.
I told her to go in a bedroom. I followed her in and told her that I knew she was very, very tired and it was ok if she wanted to stay inside this one day. I told her she could not scream and that I would come in and check on her in a while. I was going to the beach. So out I went and about an hour later she came out and joined us. Of course, we had other food issues during the week, but this was the only complete meltdown. I was so grateful to have made some very happy memories for the family. We're pretty sure we're going back next year. Thanks again for all of the support. On to worrying about how to keep her busy this summer....
Registered: 1369949641 Posts: 1,598
Reply with quote #21
verytired, Great work & fantastic result well done congratulations Mum 1 ed 0!! __________________ ED Dad
Registered: 1396016102 Posts: 4,019
Reply with quote #22
Thanks for posting this happy news! xx -Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
Registered: 1296569362 Posts: 5,520
Reply with quote #23
So happy to hear your trip was fun with minimal ED interference. I'm so sorry this is all so damn exhausting. We have all been in the situation of empathy/sympathy burnout. I will readily admit to at times just sternly barking " just shut up and eat NOW" ( not my proudest moments). But we are all human and we all have those times. I know that ground hogs day feeling of waking up to food, food, shopping, cleaning, food etc and dealing with ED behavior. Bleh. I don't miss it one bit! And I can also relate to lost time and fun with other kids ( I had one older and one younger).
So through my experience and through those of others my advice is to mix it up. You sometimes have to poke the beast to see changes. Maybe time to up the ante with eating out. Maybe time to full on tackle the lingering ED behaviors. It of course always makes things feel " worse" but it is usually short lived. All I can tell you is that whenever my d ( now almost 17- diagnosed at 10.5) and I talk about all of this, she will tell me that SHE was always very relieved when we stepped in and stopped behaviors or required xyz. Of course her ED made her cry and scream and eye roll and fight us but inside she was relieved.
Has she had a period? Is she still growing in height? What is her height? Are you feeding her a ton of fats? I swear high fats were absolutely key to my daughters brain to work. I went through a galling of heavy cream a week and 4 plus pounds of butter. And it's not forever. My daughter hasn't had to eat a high fat high cal diet for 3 years now after requiring very high numbers for those first three years.
If you had inadequate care the first 1.5 years, you can't really count that time in the time line of recovery. You have to start from 1.5 years ago when you switched to a better plan. So really for 1.5 years in she's doing really well! 1.5 years in I was still eating 3 meals and snacks with my d and going to school every day and finding rotting food and fighting ED crazy rants. __________________ Persistent, consistent vigilance!
Registered: 1438737617 Posts: 783
Reply with quote #24
That is so great Verytired. Isn't it amazing when you draw the line and say I'll accept this but until you can give me this, I'm going to the beach. You handled that perfectly!!!
Registered: 1398657817 Posts: 255
Reply with quote #25
In reading your post, first I thought - Bravo! Then I thought... isn't it interesting that there are many examples on here about times we parent out of fear and give in to our children's distress that it makes things worse. But when we stand firm, detach a bit gently but firmly, often times they respond. not just in ED, but in many parts of their lives and conditions, with compliance.
I do some writing with a mental health institution and today I interviewed an OCD team. They said something interesting about their work that has stuck with me today because it was related to distress and anxiety. They said that parents start out by giving small accommodations to their children when they see them in distress because they love them and it hurts them to see their child in that state. But those small accommodations always snowball and get worse. They explained that the family has to change as much as the child for their long-term recovery. They explained that for some families, they are so afraid of doing the wrong thing that they don't want to make those changes or let their child sit with their distress, but they must. It's really the same with ED - the more I see the struggles of our kids who all struggle with anxiety, the more I think of ED as another manifestation of it. You handled it very well and she found the courage to face her anxiety and join you. Great work! Glad it was enjoyable. you all certainly deserved it. __________________ 17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.