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Posts Tagged ‘anorexia recovery’

 Medication freeYes we are still here! But our journey means the blog is not something that now gets a lot of posts. I debated with making it an advocacy, education blog etc but that was never the point of this blog. There are better forums for the advocacy ED awareness but not here. This is our story, Sophie’s story and I do not want to detract from that. It is also our story told from my view in most cases rather than my daughter’s. Now she is 21 and well, the story is now ALL hers. I am merely a by-stander and whatever or wherever her future takes her, the story is her’s alone now.

As a quick update, she is now medication free. No more anti-depressant!!!! A huge move forward after being on it for 5.5years. Soph has been toying with the idea for several months, but cautious of her anxiety and depression bouts that possibly the medication might be helping. But considering the depths of the ’bouts’ I do wonder just how much the medication was really helping. Teenagers change so much in every way (psychologically, emotionally, physically) as they become adults, that what was started at 15 is very probably not overly useful at 21. Many anti-depressants can also stop working as effectively long-term.

So med free. I demanded she take the weaning off process SLOWLY. INCREDIBLY.SLOWLY. Got the ‘awww mum’ whole drama. But I didn’t want the cold turkey, medication backlash that happens. Coming off medication like these means months before she will be fully herself and functioning without drug related responses. Her brain and body will need to change and readjust to normal state for many processes. She is in effect a very different person from the child at 15. Not just because she is now adult, but also because of the long term medication. The anorexia alone has made her a different person. The medication has made it a bigger difference from then to now. Too many psychological, mental and emotional changes that is over and above normal growth and change.

She’s been med free for about a month. Too early yet to tell how she will go. Life needs to happen for her to see if she can manage herself. She is still home on uni break for a few more weeks, then back to reality. This time round she has been home for almost 4 months, so it will be a bigger drop back into uni life and her living reality. But she is brave and courageous for taking the step that needed to be taken. A new freedom and learning who she is now without any props is the only way to go!

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It gets so frustrating when even treatment centres cannot do the ‘right’ thing by eating disorder patients. LOL, really the fact that you managed to get a coveted position in a treatment centre is a major achievement in itself – that means you actually found a doctor who believes you have an eating disorder and got you a referral to the treatment centre.  What do you do when the whole thing turns out to be intensely disappointing. What do you do when you are released, you are no better than when you were admitted.

So up front, I get why treatment centres treat and run the programs they do. They have many different people, all unique and all not going to respond to just one form of treatment. So the treatment centre to run effectively, also has to streamline what they can and can’t deliver. That is reasonable. I also understand that they can’t also perform miracles. Basically the patient has to be willing to comply in the end with eating and wanting to recover.

But …

  1. They promise to not discharged unless fully weight restored – but they do.
  2.  They work on punishment and penalties – but the rest of the eating disorder treatment approaches don’t (and they are the ones with the most successful recovery stats).
  3. Some patients have been back over 3 times (several patients) – doesn’t that send a clear message ‘it’s not working’.
  4. Therapy is with-held unless fully weight restored. (see point 1 for how ludicrous this is).
  5. For critical patients they can quite easily discharge you after a few weeks, barely beginning your recovery program.
  6. They send you to their ‘preferred’ ongoing treatment psychologists, ignoring your home team. This creates ill feeling back at home and also introduces another unknown person into the recovery program.
  7. Critical patients are thrown in with groups of patients on their 3-4th visit who treat the centre as a party atmosphere. They are exposed to new tricks, manipulations, ways of purging etc.
  8. Treatment centres run down previous care and treatment, without knowing facts etc and make you feel you are even trying to care.
  9. I am not talking about adults either, but kids, young teenagers in these treatment centres.

get serious about treating eating disorders

The goal of initial treatment is to fully weight restore. This is supposed to ground rule wherever you are treated. If you don’t get that much at least, then what is the point of the treatment centre or hospital to start with. You might have just as well stayed home and tried to treat yourself. It also builds a mistrust in the treatment centre and their ability to really help you. Treatment centres should be aware after treating so many patients, that patients only eat to get out. So releasing them under goal weight and believing that they will eat at home, is also to the point of ludicrous.

A few weeks in a treatment centre (unless you are incredibly willing to change) is also not enough time. In anorexia cases and severe weight loss, weight simply cannot be restored in that time, nor can health, mind or any psychology work be done to start to change behaviours. Again all this does is, help the anorexia dig in deeper and become more chronic.

And what really, really annoys me, is the treatment centres and professionals who think you CANNOT do psychological treatment when underweight. There is SOOOOO much more to the psychological treatment than just getting cooperation and changing behaviours. If our team had taken that approach, then nothing would have been started til much later. Part of the whole concept of getting Sophie to eat in hospital, was talking about the psychological hold the anorexia had on her. The psychiatrist spent time every week with her, just gently stating the same points and discussing the illness. Whilst Sophie didn’t always respond, the seeds were sown. We could all see that she could begin to glimpse the anorexia as different to her and try to grasp what she needed to do. Of course it was beyond her to try to change behaviour much, but the seeds where there, she had already started on the right track BECAUSE therapy was started at a low weight and in hospital.

The biggest gain, is creating the relationship between sufferer and treatment professional, whether counsellor, psychiatrist or psychologist. Whilst many therapies points and techniques do need a receptive and working mind, the constant therapy appointments at the early stages of weight gain and recovery is gold. When Sophie left hospital the first time, she already had relationship beginning with her team. She learned through constant contact, this team was committed to her. The beginnings of trust were developing. They may not have been able to change her mind yet, but she knew that they were going to stick with her and bring her through. She also had the gentle repetition of the initial psychological separation from the anorexia already happening.

Running down previous treatment therapies, people and hospital treatments is unprofessional and really unhelpful to both sufferer and carer. There is no ‘one’ perfect fix. Why do professional assume their treatment centre offers the best and only way. Who gives them the right to run down others, particulary when they aren’t even delivering the appropriate level of base care. Different techniques work for different people not a one size fits all. You may not agree with another’s treatment ideas, but that is not to say they are wrong, nor that they won’t work.

If a treatment centre cannot even offer the basic, long term care and much needed psychological care, then what hope is there when your loved one comes home still failing, still underweight, still refusing to eat. Where do you go for help then? In rural, regional areas there are no choices available. In small countries, you are lucky to have only one treatment centre – which if that fails in its duty, then what next. We are not providing appropriate care nor offering solutions when we send home our patients still underweight, with little or no therapy and all we do is create distrust in centres and hospitals, distrust of health care professionals and allow the eating disorders to tighten/deepen their hold.

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recovery and anorexiaThe quote below comes from just one of the most amazing, loving, inspirational young women I have met in this journey.  Her hope in recovery and her inner spirit shine. Whilst she knows she is not there yet, she continues to fight back against the anorexia, encouraging others and shining a light for them. To ‘B’, I am blessed to have you and your mum as part of my life.

 

Each day I choose recovery; I choose to fight against the negative thoughts.
When anorexia says I shouldn’t eat, I choose to nourish myself.
When anorexia tells me I am fat, I tell anorexia it is wrong.
When anorexia tells me I shouldn’t leave the house, I go out and see friends to have some fun, or go and enjoy myself at work.
When anorexia tells me that others are judging me, I ignore anorexia and remind myself that even if others are judging me, that is their problem not mine.
When anorexia says I am weak, I scream at anorexia and tell it I am strong.
When anorexia tells me I am a failure for regaining my life, I tell anorexia to shut up, because I deserve to live freely and I will be free.
Even on my worst days I know that relapse is not an option, and it is not worth it. I am looking forward to the day when anorexia no longer lives inside my head.
Recovery is possible; I have seen it. I am not yet recovered, but I know I am well on my way.
Choosing recovery

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“Learn to separate yourself from the eating disorder”

Heard that yet from your therapist? If you are in very early recovery you are not going to understand what they mean. You and the eating disorder are still very much one unit. Are psychiatrist used this image to help Sophie understand.

  • Cover one hand with the other: that’s you and the eating disorder at the beginning. The ED is totally controlling you.
  • Then slowly, gradually start to move the hands apart: As you recover and learn more, you can start to see two separate entities, yourself and the ED.
  • Finally, your two hands are far apart: you are no longer controlled by the ED, you are your own person.

Both carers and sufferers must learn this separation technique. It is critical for recovery. It removes the blame and the idea the person is the problem. It shows that the eating disorder is a separate voice and thinking pattern to you. The eating disorder is the problem, never ever the person.

One of the best ways of becoming aware of the ED and how it is separate to you, is to learn to externalise the eating disorder. Like it is a separate being. It also empowers you to be able to make positive changes and think encouraging thoughts. It disempowers the eating disorder and the control is has on your life.

1. Give it a name

This may sound weird, but it does work. Give the ED a name. Ana, Mia, Ed, anything. This makes the illness separate to you. You address the illness. You see it as a separate entity to yourself. This gives some distance and makes the illness objective rather than personal.

2. You are not a label (or a victim)

Don’t call yourself or others the ‘anorexic’ or  the ‘bulimic’. Doing this ignores the sufferer as a person. They become a label or statistic. You are a person with a mental health illness called anorexia. All the things that made you unique as a person before this illness are still there and still real. The idea that you are a victim, also removes your power as a person. The word makes you feel you are unable to take control of your own life.

3. You still have a voice

It’s just silenced. That’s what the ED does. Learning to exercise your voice and make it strong again, gives you back the control. Just because all you hear at the moment is the loud, negative and destructive ED voice, that that is all there is. Your voice is still there, underneath, and can be developed to be stronger than the ED voice.

4. Make third party statements

When you don’t eat your scheduled meals, or you choose ED behaviour ask questions that don’t point the finger at you.

  • How did the eating disorder make you skip lunch?
  • What did Ana tell you today about yourself?
  • That’s the eating disorder voice I hear, what does (your name) think or feel?
  • Who made that statement, you or Ana?

5. Notice your vulnerable triggers and times

Eating disorders use certain ‘weak’ points, situations, times of the day, certain people to trip you up. ED behaviour and slip-ups are always stronger at these times. Being aware and forewarned can help you beat the ED at it’s own game.

6. Don’t beat yourself up

When you find it too exhausting or too hard to separate from the ED and you just let the ED do it’s thing, be gentle on yourself. It takes a lot of time and learning to get the separation/externalisation happening. You have lived for so long with the ED being often the only voice in your head. Your own voice is rusty from dis-use and like any unused item, takes a while to work.

7. Believe

Yes, externalising the ED is possible. It is a real thing and can happen for anyone and everyone. But it’s not a magic pill or wand. It needs commitment and skills but achieving this is a major step forward in recovery. It opens your eyes to the real character of the eating disorder and it shows you the beauty of your own voice. Therapy with a skilled professional really helps with learning this process.

 

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Many of us have read the story of Bronte Cullis and her struggle with anorexia. Last night on A Current Affair they showed where she is now up to with her life. The Melbourne hospital she was originally admitted to gave up on Bronte and could not treat – she was 16. They expected her to die from anorexia. Her family got her into a Canadian treatment centre, ACA followed Bronte and her family to Canada from Australia and have kept in touch with her since then. Weep with joy in her recovery, her life joys and know that this goal can be yours.

To support this, I and many others have seen the same side of anorexia with our daughters: painfully thin, possessed, very sick and being tube fed. But we now see daughters, further along the recovery road and they do not resemble that sick girl anymore and are choosing life as best they can each day.

As Bronte says, “it is not a choice to get sick, but it is a choice to live and not to die”.

Anorexia recovery

Bronte’s Joy Watch Video

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fat is not a feelingFat girl is back. Got no idea what triggered it. Sophie can’t tell me and seems to prefer to just let it slide. Clearly slipping back into restrictive eating is a comfort zone and so much easier than having to face whatever is happening. It means she doesn’t have to make decisions, grow up, or confront the need to be active.

Food intake back to about a 1/4 of her daily needs. A plan of doing this for 2 weeks at least. She hasn’t thought further ahead. Cancelled this week’s counselling appt. Hoping she decides to make next week’s appt.

Oh, and it’s my fault. I should have told her she is fat.

Trying to keep out of this, encourage her only and let her know she has all the tools already to fight this. She only needs to pull out her distraction toolbox, remember the many conversations with her dietitian, counsellor or psychiatrist. It is all there. But for now she is choosing to not even try. I am hoping that like that last slip ups she will get to small health problems and cave in. Too soon yet for that to happen.

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The onset of the Christmas holiday season usually heralds no therapy sessions. For a few weeks you can forget you have to front for counselling sessions, you can believe that you are like 95% of the rest of the population. Then comes the crunch. Back to appointments, back to facing reality. You have an eating disorder, you are in recovery for an eating disorder. Back to telling others how you feel, think and are. That you have a mental illness and most of your peers don’t.

The freedom for a few weeks adds up to far more than what most people think. The reality of who you are and where you are when faced with the beginnings of the weekly, monthly appointments is a ‘hit’ bottom reality check.

Today was first counselling of the year, Friday brings the first psychiatrist appointment for the year. As much as Sophie wanted the appointments, it was also a reality check. Having to talk about what has been going on, facing up to what is happening inside her head and putting it on her team’s radar. Yes the voices in her head are screaming, yes she wants to restrict, yes she is depressed, yes she is paranoid, yes she is super anxious and worried. Is it all the holidays – not sure. It was the most open and honest I have seen her – which I take to be a good thing. Although tonight she is withdrawn and depressed.

As her counsellor pointed out, Sophie is capable of making choices. She can decided to either follow the voices or turn against them. Sophie, left to her own devices, is a wallower. She happily and freely admits that. For her it is easier to wallow in in-decision and self-pity and just go with the flow. Easier than fighting back. It brings me relief that she isn’t going off to uni this year, as it would only set off a major relapse. But then again, it makes me desperately sad that she has this illness that has stopped her doing with others take fore-granted.

She has a choice, she can wallow or do things that distract the voices. But she chooses not too. She has a list of distractions, knows what to do, but prefers not. Prefers to sink slowly under the anorexic voices in her head and let it take control. Slowly and insidiously. When she has structure (like school) she functions. But Sophie on her own, doesn’t function. As her counsellor said, she has to learn to structure her own life, not let others do it. When the external structure is taken away, she is lost, as she has no internal structure. She prefers to let life crash in on her and take it all personally. At times you wonder just where all the therapy and techniques she has learned are.

Don’t know where we are, but it is obviously a stage, a part of recovery, that may need to be traversed. School in less then 2 weeks, perhaps then she might be better. Perhaps then she can learn more about herself and plan for the next school holidays.

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