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Archive for the ‘Recovery’ Category

and I mean, ALWAYS. Never give up.

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 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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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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Sophie has been home and gone back to uni. Wow 6 weeks at home just flew. It was wonderful having her for so long. She had the usual depression/anxiety drop down during the peak assignment time, but this time didn’t ring me as much. With her new psychologist she handled it herself. Doesn’t mean it was any easier or less deep, but she made her own decisions and didn’t need to vent to me. I see this as a step forward and wait to see how this semester goes.

This post though is about getting sick. It’s winter here, Melbourne has it’s own strong flu variety this year and lots of other nasty bugs. When http://scu.edu.au/staffdirectory/person_detail.php?person=20601you get sick, it’s normal to cut back on eating. You really don’t feel like food, nor sometimes can you keep it down. If you get the viruses with the killer sore throats or Tonsillitis then you have an extra level added to the pain of eating. You might not eat anything decent apart from some light liquids for anything up to 14 days. It’s the nature of being sick that we all follow.

For those recovered or in recovery getting sick needs extra care. If you are at home or still not fully independent, you then have a team or family support to encourage you to eat. The bottom line for those with anorexia, is you DON’T lose weight. But it’s hard to remember that when you really sick, living independently away from home and figure that you can easily gain any weight loss back or it won’t matter, or being so sick it doesn’t even cross your mind you might be losing weight. Or that it might be an issue if you do lose weight.

After all – if you are fully recovered – you won’t have had any Ana behaviour to stop you eating. You won’t have had any Ana thoughts or heard Ana’s voice either. Your well past that. You may even still see a psychologist, take good care of yourself, see a doctor regularly, have medication for anxiety or other mental health issues. So when you get really sick, you tend to do what we all do – eat when or how much as you are able to.

Sophie learnt her next step in self care and staying recovered. She got the flu and Tonsillitis together – one very sick girl. And she did try to eat and drink. However being unable to eat her normal amount for over 2 weeks, her weight dropped. What it brought home to her, was how quickly during sickness the body can drop in weight. And in the case of a recovered anorexic, weight loss to a certain point can start to bring thinking changes.

As she said, she felt physically ok, and wasn’t anywhere in the realm of Ana thoughts, but her mind ‘darkened’, it was easy to slip back into the habit of not eating a meal or eating enough when getting over the sickness. She found herself a bit defensive about food. Thankfully she was home by this stage, so mother got involved (despite the fact she is now 20 and really beyond me dictating food routines). Yep, I can still be the Food Police. But because she doesn’t want to go back down the Ana path, she drank the sustagen, ate pies, bread, raisin toast, pasta, pizza etc etc. She snacked in-between meals and she brought her weight back up. Not quite as high as I’d like to go back to Melbourne, but still in her good weight range.

It’s a confronting lesson when just being sick can result in weight loss you didn’t plan or want, and the extra strength needed to continue to eat. Whilst recovery teams will tell you that this might happen, until it actually does you don’t plan or really know how you will actually react or be when very sick. Sometimes you learn as situations become a reality for you – rather than a textbook experience. Now she knows.

Third week back in Melbourne she has come down with a similar bug and another round of damned Tonsillitis (sensitive little things once they get sick). This time Soph is more knowledgeable and is eating more and drinking sustagen etc. She also is seeing her psychologist and doctor as well. We are also heading down (we couldn’t do it last semester) for a parent check in of how she is going.

The learning curve can be tricky, sneaky and sometimes ‘left of field’ in recovery, but as long as you take note of the lesson and build toward being strong if sickness happens again, then you have learned another step in the reality of self-care. Getting flu vaccine might also be part of the lesson!

 

 

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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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Truth #1: You can’t tell by looking at someone whether they have an eating disorder. Many people with eating disorders look healthy, yet may be extremely ill.

Truth #2: Families are not to blame.

Truth #3: Families can be the patients’ best allies in treatment.

Truth #4: An eating disorder diagnosis is a health crisis that disrupts personal and family functioning

Truth #5: Eating disorders are not choices, but serious biologically-influenced mental illnesses.

Truth #6: Eating disorders affect people of all genders, ages, races, ethnicities, sexual orientations, and socio-economic statuses.

Truth #7: Eating disorders carry an increased risk for both suicide and physical/medical complications.

Truth #8: Genes play a role in eating disorders, but environment also influences their development. Genes AND environment both play important roles.

Truth #9: Genes are not destiny when it comes to eating disorders. Genes alone do not predict who will develop eating disorders.

Truth #10: Full recovery from an eating disorder is possible. Early detection and intervention are important.

Republished from: http://www.nationaleatingdisorders.org/blog/9-truths-about-eating-disorders#sthash.IcK01qQE.dpuf

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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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