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Archive for the ‘Resources’ Category

With thanks to FEAST for this post. They have spelt it out perfectly. Why add to it!?

Defining Recovery

defining recovery from an eating disorderThe goal of eating disorder treatment is full recovery: living life free of eating disorder thoughts and behaviours. There is always hope, even for patients with chronic illness, but the best path to recovery is early intervention and firm and unyielding progress toward full medical, emotional, and cognitive health. Although they are extremely serious brain illnesses, anorexia and bulimia can be successfully and fully treated.

No patient or patient’s family need ever settle for treatment that isn’t working, is stalled, settles for less than 100% recovery, or stops before the patient is fully self-sufficient.

It is important for parents to know that full physical, emotional, and cognitive recovery is not unattainable or rare. In fact, if properly treated an eating disorder can be short in duration and without long-term medical consequences.

And although it has become common to say that it takes 5-7 years to recover, this is a statistic based on older treatment approaches and drawn from the most severe cases. Recovery is rarely achieved in less than several months, but treatment that languishes or settles for low weight goals should be reexamined.

It is also common to say that one never completely recovers from an eating disorder. This is a disabling and self-perpetuating myth.

FEAST was founded by families who have supported or are currently supporting loved ones through the recovery process. Many of us have seen children and young adults go from gravely ill to full remission of symptoms, living healthy normal lives.

FEAST believes in full recovery.


SIGNS OF RECOVERY
published by Cris Haltom in the EATING DISORDER SURVIVAL GUIDE, May 25, 2006
(adapted from sources below)

1. Eating occurs at regular intervals and is guided primarily by physical rather than emotional hunger.
2. Metabolic rate, if measured, is restored and maintained at a healthful level.
3. The ability to recognize and respond to hunger as a guide for eating appropriately has returned.
4. Weight for height based on age and gender is restored to a healthful range.
5. For females, menstruation is achieved or restored and maintained without oral contraceptives.
6. Skin health, dental health,thermo-regulation, hair growth, and digestion/ absorption functions are restored to normal.
7. Healthy body composition (lean body mass and body fat) is restored and maintained.
8. Caloric and nutrient intake is appropriate for maintaining a healthy weight and body composition.
9. Purging behaviour, e.g., self-induced vomiting and laxative or enema use, is absent.
10. Use of diet pills or appetite suppressants is absent.
11. Excessive exercise is absent.
12. Binge eating behaviour is absent or rare.
13. The ability to tolerate a wide variety of foods so that a good balance of high- quality protein, carbohydrates, fatty acids, minerals, and vitamins is maintained.
14. The ability to tolerate natural shifts in weight (one to several pounds) related to such factors such as hydration changes, illness, and season of the year.
15. The ability to tolerate ‘spontaneous’ natural eating – especially out in public.
16. Weight gain does not deter from eating well.
17. Acceptance of genetically-determined body type, size and shape.
18. The percentage of waking hours spent obsessing about weight, food, and/or body image is reduced to 15% or less.
19. The ability to effectively cope with problems in ways other than through disordered eating behaviors.
20. After physical health is restored, the ability to understand and resolve, other than through disordered eating, the issues underlying and driving disordered eating.
21. The ability to recognize signs of relapse and to seek appropriate help if relapse occurs.
22. Triggers for relapse thinking or behaviours can be identified.
23. The family as a whole has moved beyond food and weight preoccupation.
24. The family as a whole is able to identify, explore, and cope with normal adolescent issues.
25. The family as a whole has created a healthy culture around food and regular meals.

SUMMARY: Understanding what to look for in recovery helps parents recognize signs of improving health. Parents need to be encouraged to hope for recovery, even though statistics about recovery can be discouraging. Recovery may take many routes and may include setbacks and unexpected turns. However, all the evidence suggests that recovery should remain the desired destination and the hope for the future.

REFERENCES Coutier, J. and Lock, J. What is remission adolescent anorexia? The International Journal of Eating Disorders. 2006, 39:3, 175-183.    Hudson, J. I. et al as reported in Eating Disorders Review, “BED: A chronic or temporary condition?” 2005, 16:6, 7.     Peterson, C. and Mitchell, J.E. Self-report measures. In Mitchell, J. and Peterson, C. Assessment of Eating Disorders. 2005, 98-119. New York: The Guilford Press

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The Dirty Laundry Project (DLP)

Dirty Laundry ProjectAt the DLP we celebrate, recognize & honor those whose actions are breaking the eating disorders & mental health “Stigma wall.”

Beating Eating Disorders (BED)

There is so much more to eating disorders than the way someone looks.
Eating disorders are a seBeating Eating Disordersrious mental illness. This disease affects millions of people all over, and has the highest mortality rate of mental illness. Often times, people with eating disorders are afraid of being judged due to the stigmatism and for that reason keep it a secret. Would you keep the diagnosis of cancer a secret? NO!!! This mental illness deserves the same kind of attention and respect as every other medical/mental diagnosis.

Eating Disorder Parent Support (EDPS)

Eating Disorder Parent SupportEating Disorder Parent Support (EDPS) is specifically and only for adults who care, or have cared for a loved one with an eating disorder. We are here for peer-to-peer sharing, support, education, guidance, encouragement, and to offer HOPE as we support our loved ones toward recovery. We welcome parents, spouses, and adult siblings, who are involved in the care; however, we are not a site or a support network for sufferers themselves.

Website: http://eatingdisorderparentsupport.weebly.com/
Facebook: https://www.facebook.com/groups/EatingDisorderParentSupport.E/

International Eating Disorder Action (IEDAction)

International Eating Disorder ActionInternational Eating Disorder Action is a coalition of parents, carers, survivors, sufferers and others, established so that members can take ACTION on issues relating to Eating Disorders (EDs).   We have members in over 15 countries and address issues globally.

Our goals:  1) to increase awareness and knowledge of EDs as treatable, biological, brain-based illnesses that that are neither the fault of, or chosen by sufferers, nor caused by parents; 2) to advocate for national Eating Disorder strategies and treatment systems that use evidence-based services; 3) to demand legislation and funding parity; and 4) to address groups/companies overtly or inadvertently fuelling Eating Disorders by glamorizing them or profiting from them.

Website: http://iedaction.weebly.com/
Blog: http://internationaleatingdisorderadvocacy.blogspot.com.au/
Facebook: https://www.facebook.com/groups/IEDAction/

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(… or reflections on our anorexia journey)

The uni break went so quick. One minute she is home, next minute gone. lol, well almost. She went back earlier, so excited for the new unit, then realised she was back way too early and desperately homesick this time. She came back home, instead of toughing it out. She said she had a much better chance of not falling into depression or anxiety by coming back home. As always I observe everything she says and does. Sophie’s maturity surprises me to the level she has achieved (within a mere several months), her insight and empathy (so apparently missing) is finally blossoming. Doesn’t mean she was always calm and not hysterical at times, but a definite switch. Before she went back, the aspie side of Sophie was all organised. Doctor appointments made, counselling appt made, new referral appt with ED specialist made, classes sorted, disability needs sorted. She just ploughed through it all. This is the plus side of having aspergers.

The new ED specialist is more of a counsellor but has the insight and understanding of what having an eating disorder in your past means for you presently and how you relate and cope with life. Whilst Sophie has to travel to this centre, I am pleased she has taken this on board as an extra coping and learning tool.

It is also time to start weaning her anti-depressant medication. Five years is a long time to be on the medication, and now is the time to slowly (painfully slowly) wean her off and see how she responds.

For me it’s been a time of great reflection. 5.5 years into this, 5 years from diagnosis, 3.5 years from full weight stabilisation, 1-1.5 years with no anorexia behaviour or thoughts. It’s been an amazing ride, that only those who have been here know how crazy, mixed up, painful, the intense highs and the intense lows. Moving from small picture, every moment, every day stuff to big picture stuff that encompasses months. Being part of a new parent support group too, has been part of this reflection. I have had to think back to the very beginning, remember things I thought I had put away forever. It’s actually been a painful journey for me, but it has honed my thoughts and beliefs about eating disorders and taught me to be far more articulate and to advocate on a higher level.

Thought I would put together a summary – seems a timely thing really.

our anorexia journey

Biggest Mistake
* under estimating how long, painful and soul destroying this journey is
* feeling guilty that I had somehow caused this

Biggest Misunderstanding
* that we could get through this in a couple of months – not years

Biggest Regret
* not demanding more from the health system around us or challenging the wrong beliefs at the time

Biggest Fear
* wondering if at times I could continue to care for her
* her dying before we could turn this around into recovery

Biggest Lesson
* how quickly you go from health to critical and in a hospital bed
* how you can never never negotiate with an eating disorder
* your child is totally separate to the eating disorder behaviour
* comorbid illness are a part of eating disorders and make the struggle to recover harder and can become a part of life afterwards

Biggest Myth
* you don’t have to be skeletal to have anorexia
* relapse is a valid and normal part of recovery not something dangerous, fearful or not normal
* tube feeding is not a shame or psychological issue. Not now. Older women struggle with this and parents have their own hangups about this. The reality is very different for those in their teens who are tubed fed.

Biggest Support
* those I met going through this journey who were travelling it too
* having an amazing, strong, recovery focused team of five professionals

Biggest Surprise
* the inner eating disorder voice in my daughter’s mind. Like getting to know the devil himself.

Biggest Problem
* health professionals who still do not know how to diagnose or treat eating disorders
* the lack of resources (both money and treatment) for parents and sufferers to access to get treatment and recover.
* the different approach, government understanding and health systems in each country that actually hamper treatment when the illness itself is the same regardless of country.

What I did Right
* early detection, early intervention
* standing with her despite the horrors of the illness and behaviour and walking with her to recovery

What Benefits Did We Gain
* obviously my daughter’s life and health but also gaining a deep, close and open relationship with my daughter
* gaining some wonderful new friends who truly understood and still stand by us
* an intimate and highly experienced understanding and knowledge of eating disorders that we can share with others

What Did We Lose
* the years my daughter cannot get back of her normal growing up time with her peers
* friends

Before Anorexia
* my daughter was anxious, highly strung, a perfectionist, a misunderstood kid with her peers
* I thought I had a plan mapped out for some kind of normal existence like every other family raising teenage kids
* I thought I was already a strong mum because of domestic violence.

After Anorexia
* my daughter knows herself so well compared to other kids her age. Whilst this is a plus it is also a negative, as she struggles to find a close friend
* I learned I am stronger than I thought, I learned a deeper side of me, and I learned the dreams I had no longer ‘do it for me’. I search deeper.
* I am still finding who I am now, I no longer want the same dreams. I still struggle to find my way around a kitchen after so many years tied to anorexia cooking and preparation.

The Blog Role
* ended up being far more than I ever thought, and gained me so much privilege to talk to others on all levels in this journey. Thank you!

What would I do Differently
This is very personal. It would be to leave our dysfunctional family domestic violent life instead of waiting til further into recovery. I had planned to leave just before my daughter started down the slippery slope. I thought (wrongly) that staying might have been better for her health. It would have given full FBT a better chance and a safe environment that had no anger, expectations, eggshells etc in it.

Family Based Therapy
That eating disorder recovery is NOT a one-size fits all. Despite the best statistics, FBT (Maudsley, FEAST, FBT types) don’t always work for some families. This is not a point to be guilty about or feel like you have failed. It just is. Means you just go and find what does work for your family and how to care. As long as there is forward progress into recovery then you are going great with whatever you are doing.

Families are not to blame
I will keep saying this shouting it from everywhere. Eating disorders are genetic based. Families do not cause eating disorder and are not to blame for an ED developing.

Overall
My faith took a pounding, became far more realistic and more honest. Like David I adore but I will question and ask.

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This wonderful post offers a deeper side of distraction. When your list is working for you, when maybe you are further along and its time to dig a bit deeper in the emotions and mind. I love the part of breaking things down into small manageable pieces and dealing with emotions in bite sized chunks. It helps you not be overwhelmed by it all, solving small pieces and gradually stringing them all together.

————————————————

From: http://susanschulherr.com/eating_disorder_recovery_blog/2009/09/coping-beyond-distraction-expanding-skills-for-living-in-eating-disorder-recovery/

Most of you are working on learning better ways to handle distress than turning to your eating disorder. This is an excellent project! Your success with it will go far to help you build a solid recovery.

Many people—with or without eating disorders—turn first to distraction as a way to manage difficult feelings. By distraction I mean diverting your focus from the upsetting thing to something unrelated, to get your mind off the upset. You’ve probably figured out that your eating disorder has been an unhealthy version of distraction. But maybe you’ve also found that listening to music, gardening, going to the movies or laughing with a friend can be healthy distractions.

I personally like distraction as a coping mechanism. I wouldn’t want to face life without it as an option. I find it can be a helpful choice when:

• I need to quiet down so I can consider a problem or upset more calmly and clearly
• I’ve worn out the usefulness of thinking about a problem for the time being
• There’s nothing I can do about a problem or upset

Several potential drawbacks go hand–in–hand with using even healthy distractions to cope, however. Most of these have to do with misuse or overuse.

The most common misuse of distraction comes from confusing it with an actual solution. Distraction at its best is only intended to provide a temporary resting place when you need a break from focusing on resolving your distress. When your distress is too intense or you’ve focused too long, a break is a good idea. Bur when you use distraction as a substitute for working out a problem or coming to terms with distress, you run into trouble. It’s the “ostrich with its head in the sand.” You not only fail to resolve anything, you build a reputation with yourself as someone who can’t handle difficult experiences. The next time something hard comes up, you haven’t developed any confidence in yourself. So you’ll be more likely to turn to distraction as a substitute. It’s a vicious cycle.

Overuse of distraction is likely to occur when you don’t have sufficient alternatives for coping with your distress. When you turn to another focus, you don’t come back. You may tend to get lost in your distraction activities. You start to play video games, surf the net or read a novel and suddenly the whole day is gone. Many addictive activities start out in exactly this way.

There are two coping challenges for which you need more and better coping tools than distraction. The first is problem solving. The second is managing difficult emotions.
Let’s consider some alternatives to distraction for times when either challenge is threatening to overwhelm you.

Problem Solving

Everybody runs into problems that seem overwhelming from the start or bog us down and frustrate us as we try to find resolution. You might try one or more of the following techniques which successful problem solvers use to see themselves through to the end:

• “Talking yourself through” confusion, uncertainty and frustration; for example, offering yourself reassurance or a steadying voice: You can do this or You’ll be okay or Just stay with it.

• Reminding yourself of times when you successfully handled other difficulties that at first seemed overwhelming

• Breaking the problem down into small, more manageable pieces

• Asking for help

Managing Difficult Emotions

There are many approaches to managing difficult emotions. All of them have something to offer as you work on developing this basic life skill. The important thing is that you find approaches that suit you—and that you use them! Here are a few examples:

• Dealing with only small doses of feelings at any given time

• Thinking of soothing, comforting responses

• Imagining yourself in a peaceful place or with a comforting person while you feel the feelings

• Learning to sort out and correct distorted thoughts that are making you feel even worse, such as Nothing ever goes my way; I’m such a loser; Nobody will ever love me, and so forth
.
• Engaging in mindfulness meditation in which you learn to observe your feelings rather than be totally in them

• Praying (if this fits with your beliefs)

• Walking, exercising or practicing yoga while experiencing the feelings

• Sharing your feelings with people who are sympathetic and calming

Remember that none of these techniques is likely to provide instant relief. But your effectiveness in using them will get better with practice. And as you get better, you’ll have more confidence in yourself. You’ll be able and willing to take on more in life.

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Learning distraction techniques is part of the journey to recovery. It isn’t always possible to just ignore or shut out the voices. Sometimes you can work out what triggered the voice to be louder or more insistent and you can distance yourself from the trigger. But that’s not always possible. It is important if you can to at first acknowledge the voice, and try to work out what you were feeling just before it got loud, where you were, what happened etc. That can help you identify vulnerable situations for yourself and help you also learn more about you personally. But when the voice continues distraction techniques are the most important weapon you have. Sophie has been working through several worksheets her counsellor gave her, identifying what works for her, as well as a diary of what she does each time the voices get too loud. Sometimes she is dedicated to working on this and other times it gets shoved aside. Her distraction techniques only work as much as her commitment to the task.

Distraction techniques are not a magic wand, you have to be committed to using them and sticking them.

So what are distraction ideas. This is as unique as you are. It is a case of what works for you. CBT and mindfulness /meditation can help but you will need guidance and help from your counsellor to learn these. Others are as simple as:

  •  going for a walk, exercise, dancing
  • playing with your pet
  • sewing, drawing, painting, listening to music, writing
  • beauty treatments (nail polish, face masks, hair colour)getting outside and just moving
  • visiting, texting, ringing a friend
  • watching a movie or favourite TV shows
  • doing something very physical to get rid of anger, frustration etc (belt your pillow, throw a ball against a wall, use a punching bag)
  • cuddling your favourite stuffed toy
  • clean or re-organise your room

The list goes on. Pick and mix them up. Have a few you know work regardless. Try new things. As long as the moment passes and the voices fade. It can exhausting and be a real struggle to just find the energy to do the distraction techniques but it is worth it. The let down you get when you give into the ED voices is far worse.

For more ideas go to 151 things to do before you self-harm (I know a lot of you don’t self harm, but the ideas they give work for eating disorders, depression and lots of other mental health illnesses.

Another great handout, is the Alternatives to Self-Harm and Distraction Techniques pdf from Royal College of Psychiatrists. It is really worth getting. I have given this to Sophie – who actually seemed interested.

Talk through what works for you with your team, family or friend. Write it down so when you so don’t forget. When the voices get loud it can be really hard to think clearly and remember what you are meant to do. Just grab your written list.

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What I won't share

 

To all those who want information for school projects, media blogs, uni projects:

I will not share or comment on:

  • my daugher’s lowest weight
  • pictures of her at her worst
  • a detailed state of her fingers nails, hair or other physical attributes
  • how eating disorders affect your looks
  • my daughter’s detailed list of safe foods or fearful foods
  • BMI weight for either my daughter or make suggestions for your BMI
  • the words healthy, beauty, inner beauty, protein diets, fresh diets
  • dieting or food tips
  • what are better foods or healthier foods to eat

why:

  • it takes the focus of just how dangerous and devasting eating disorders (particularly anorexia) are
  • it diminishes eating disorders to the physical and superficial
  • it is not helpful or useful for recovery or media intake
  • sends the wrong message about foods, health, body weight etc.
  • eating disorders are not an illness about food or weight
  • there are far, far more devasting consequences and ill health from having an eating disorder than your nails, skin, hair etc
  • there are no good or bad foods

However, I will share:

  • the real body and mind breakdowns that occur (did you know the uterus thins out to almost paper and only thickens once the body is repaired and periods start – just learnt that)
  • how incidious, manipulative, dangerous and all consuming eating disorders are
  • that it is an illness of the mind that affects all genders, cultural and social areas
  • that physical health and healing comes when a varied and wide food range is eaten
  • the long lasting effects of eating disorders are those under the skin: the mind, behaviours, organs, bones, teeth, reproductive system, endocrine system …
  • what research has been done and how much more needs to be done
  • what resources (including financial) are not being funnelled into eating disorder areas
  • how eating disorders affect families and relationships
  • recovery and healing that encompasses all areas of an eating disorder.

I have met some wonderful people who are creating great stuff, from documentaries, short films, very informative and balanced websites. But others still have a lot to learn about eating disorders. These are the ones I want to grow and stretch in their ideas of what an eating disorder is really all about.

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Often, we think we need to figure everything out by ourselves. Or we withdraw or isolate ourselves when we’re going through tough times. Eating disorders in particular are even more so at risk for isolation. The illness itself can be described as an illness of loneliness.

But turning to others — the people who genuinely care about us and have our best interests at heart — can give us new, valuable perspectives. It can remind us that we’re not alone. It can boost our mood and ease our pain. Even in the midst of us pushing them away.

building a support system

And having a support system can help us in building a more positive body image and taking better care of ourselves.

Who are the people in your life you can turn to? Who are the people you can count as your support system? Who can become a helpful resource to you (such as a therapist or yoga instructor)?

Here are some ideas for creating your support system and letting others help you:

  • Talking to a friend about your body image struggles.
  • Having a co-worker join you for a walk during your lunch break.
  • Scheduling a weekly or monthly heart-to-heart session on Skype with a loved one.
  • Working with a local therapist or coach — by phone and email — to help you develop a more positive body image and fulfilling life.
  • Working with a nutritionist who helps you develop a healthier, more peaceful relationship with food and your body.
  • Emailing with a gratitude buddy about three things you’re grateful for every week (including one thing that’s about your body).
  • Meditating alongside your partner. Here are several meditations to try.
  • Taking an e-course on anything from practicing yoga to nourishing your body and getting support from both the instructor and your fellow students.
  • Joining organizations or support groups, which have like-minded members.

Sometimes, the people surrounding you might not have the same priorities or principles (for instance, maybe they’re knee deep in the diet mentality and even make rude comments about other people’s weight).

But remember, like I mention above, your support system can come from many different areas: It might be friends or family who live far away but can chat on Skype every week.

It might be a therapist who specializes in helping people heal their body image or self-image issues. It might be a yoga instructor who helps you learn to listen to your body and practice self-compassion.

Today, make a list of at least three people — family, friends, co-workers, professional practitioners — who can become part of your support system. Then reach out to each one.

Remember, you don’t have to heal your body image hurts alone. Because you’re not alone.

Main text from: http://blogs.psychcentral.com/weightless/2014/01/body-image-booster-build-your-support-system/

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