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lilacpink85

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Reply with quote  #1 

Hello everyone, I’m new to this site, and hope you don’t mind me just spilling my mind. I just don't know who else to speak to or what else I can possibly do. 

A bit of background my little sister was showing signs of ED 2 years ago, it climaxed just after Christmas when she was taken into an eaten disorder unit as a priority 1 due to her slowing heart rate and dangerously low BMI. It still sends shivers down my spine seeing photos of her from that time.

For exactly a year she stayed at the residential unit, on and off tube feeds, in a wheel chair, self harming – it all happened, and as a family we got through it and were there for her, sharing visits throughout the week so she was never alone. I missed her so much. Most of the family took part in FBT weekly, which was tough on everyone. After 8/9 months it finally looked like she was ready to fight the ED and became stronger, eating what she was asked to – I also fell pregnant and I think this spurred her on to get out of hospital.  Just before Christmas last year she was discharged as an outpatient, my beautiful, happy, confident sister was back. So for a good while things were looking up, and we all started to relax a little. Then six months ago, the food limitation started, she stopped having extras or started making excuses for not being in around meal times.  She spoke to the unit but their attitude seemed to be, they were just waiting for her to get worse again so she would be admitted because the outpatient therapies they were giving her were not working.

 

Now for the last few months we’ve noticed signs that happened before her hospital admission – I think to be honest we’ve all been in denial thinking, no it’s just a bad day, but here we are again, she’s depressed, refusing to eat, becoming aggressive / upset if we try and mention it. The good friends who stuck by her, she no longer wants to see and people who are no good or have hurt her in the past seem to be her choice for company now, it’s like self harm in as many ways as possible.

 

I know I can never fully understand how my sister feels (I have been to conferences and family days at the ED centre) and without sounding selfish, I really don’t know how we can all get through this again, I am a new mum – working full time and I’m so worried it will break my poor mum if she has to watch her little girl go through hell again and take us with her. After all this time sometimes all I want to do when she cries down the phone “it’s not as easy as just eating” is shake her and say “I know but I don’t know what else to do or say – I just NEED you to be better, I want you back!” 

Obviously no matter what we will all be there for her but we don't feel we have the support from the ED clinic. One of the nurses actually said to her once "i dont know if there's anything else we can do for you" You have no idea how terrifying that is when you think that if the worst does happen, there's no one there to catch you.

 

I know no one can fix this and the inevitable is about to happen -  I just needed to write this.  Sometimes talking to friends / family, this has become a topic that is just always going to be “there” or it’s an elephant in the room, I think people even tire of hearing about it sometimes and no one understands how devastating it is or how the smallest step (ie eating a square of chocolate outwith a meal plan) in the right direction can mean the world! I know it’s not easy on any family, but I literally don’t think mine can survive this again and I’m so scared. Thank you for reading xx

eternalhope

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Reply with quote  #2 
Lila, what a wonderful sister you are. She is so blessed to have a sister like you and your family so involved and behind her. I’m sorry it’s been so difficult. I understand your fears. It’s one day at a time. Stay strong and keep faith. With all your knowledge, you’ll know what to do this time around. It just takes time. Thinking of you and your family from across the pond. God bless.
tina72

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Reply with quote  #3 
Hi and a warm welcome from Germany. I am glad that you found us here.
The story of your little sister is sad and I can understand that you are scared at the moment. How old is she? Is she living at home?
I cannot give you much advice as I am not so far on the journey. My d was dx in January and WR in Juli and we are doing Phase 2 at the moment (giving her freedom back slowly, working on fear food and eating outside). But there are a lot of experienced parents here who will join in soon and give you better advice how to handle a relapse.

How did your family react when she began to limit food again? What you explain seems to be a classical relapse. The answer has to be gaining weight again. No other way. She cannot want to eat and she cannot want to get better. That is part of the disease. Her fear is bigger than her will. ED is telling her what to do.
If the ED clinic doesn´t support you with refeeding and has given her up, you need to change that. We all had experiences with bad "professionals" and no help/therapist is better than a bad one. Can you tell us where your sister lives? Maybe there are parents out of your region who can give you some good tips?

"I know no one can fix this and the inevitable is about to happen." Don´t give up. Recovery is possible even with long history of ED. You can get help, you just need to find it. And she needs someone to live with her or come back home if she is adult. Or go to IP again. There are many possiblities. Food is the medicine and the only way. It has worked once and it will work again. ED is an elephant in your room, but you can get it out.

If you have questions, ask them. If you need to vent, welcome in the club. We understand what you are talking about.
Tina72
lilacpink85

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Reply with quote  #4 
Thank you so much for your replies, it means a lot you even reading my post.
Yes luckily she still lives at home, she is 23 but tends to want to spend a lot of her time on her own in her room.
I think the initial reaction was frustration to be honest but only through fear that we knew what was / is to come and it's hard to even bring up the topic without an arugument breaking out and that's the viscous circle we don't want to say too much to push her away further but we need to be there for her and try and help or get her to get help. She knows she's struggling with the ED again but I think she thinks there nothing else that can be done for her while I know that's not true - after her previous experience I don't blame her feeling this way. It's just hard to know what to do. She is going to therapy but won't tell us much about the outcomes of the sessions or how she feels after, she's clammed up.
What I do find difficult which some maybe able to help with - is just how to have a normal conversation with her without ignoring what's going on. Or what to say when she says she's finding it hard? My instinct is to tell her she needs to fight it but I know that's easy for me to say, or to tell her she looks ill but again thing is playing into the EDs hands. She's missing out on so much of life - she has a good job which she loves a big circle of friends and a loving family but it's not enough at the moment [frown] and I'm worried she loses it all this time around (not her family obviously) and sinks deeper.
sk8r31

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Reply with quote  #5 
Welcome lilacpink, & hope you will find the support here at ATDT that will help you through this difficult time.

I can well imagine how scary it is to see your little sis going backward when she has made progress this past year in working on recovery.

For the moment, if you can focus on as much self-care as you are able, it will set you up to be better equipped to help your sis when you can.  As a new mum, you must be tired and overwhelmed at times, and likely stretched to the limit at present.  Put on your own oxygen mask, and do what you can for yourself, so that you'll be able to be supportive where you can.

It may help to look at this blog post by Carrie Arnold, who is a science-writer and in recovery from an ED.  She was helped in her recovery as a young adult using FBT with the support of her family.  In the post, she discusses the 5 Day Intensive program offered at the Center for Balanced Living, and its director Laura Hill.  This TED talk by Laura Hill is very informative as well.

In addition, the book Decoding Anorexia by Carrie Arnold is also a wealth of information.

Sending strength and support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
tina72

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Posts: 409
Reply with quote  #6 
Discussing with AN is senseless. She doesn´t see that she is sick and she needs help. You need to help her although she is not wanting it and that is the big problem with adult patients.
So what are your options. She still lives at home. She loves her job and her friends. So maybe you can get her there. You can set a contract on rules about living at home. If she wants to live with you, she has to eat lunch and dinner with you for example. You cook and plate.
If she loves her job, you can tell her that she won´t be able to do her job good when her brain is malnurished and she isn´t able to think well.
Therapy is not helping unless she is weight restored. That is lost time. She doesn´t have AN because she has a bad life or experienced something terrible. She has AN because it is genetic and she is malnurished. It is a metabolism disease and you would not send a patient with diabetes to a therapist, would you?
Food is her medicine and you will have to find a way to get it into her. Easier said than done at that age, I know. But that is the only way to recovery.
Tina72
LauraCollins_US

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F.E.A.S.T. Outreach Director
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Reply with quote  #7 
Sending caring and hope to you: you are a wonderful sister.

When I read your description of the situation it struck me that you may have been operating under a belief system about your sister's illness that could be painful to you and ineffective for you. And it sounds as if your sister's treatment providers have given you that mistaken impression.

Eating disorders are not a choice, they are a brain disorder more like OCD than anything. Your sister and your family and her providers DID do marvelous work getting her fed and back to normal functioning of her brain and eating but they forgot to tell you that the underlying predisposition is still there. She didn't THINK her way into the disordered thoughts and behaviors and she didn't THINK her way out, nor can she simply THINK her way to not relapsing. The predisposition is going to be lurking and waiting for chances to come back, and it isn't conscious or willful. It takes having loving family that recognizes the thoughts coming back and ACTING on her behalf without judgement or disappointment. No, health systems won't usually bring a patient back into care until they are quite ill again, which is wrong in my opinion but based on funding issues AND a mistaken idea of the illness. But families do not have to worry about that. Any amount of disordered thinking and relapse is appropriately urgent, and deserves full on support. Meal support, emotional support, medical support, psychological support. 

If you think of your sister's disordered thoughts as you would OCD thoughts, and her behaviors around food as you would OCD behaviors, it may help. These thoughts and behaviors are treatable, and it is possible to live entirely free of them, but not just by force of will.

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Laura (Collins) Lyster-Mensh
F.E.A.S.T. Outreach Director
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