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Posts Tagged ‘recovery’

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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What they don't tell you about eating disordersWelcome to all my new followers. Thank you for joining me. Whilst it’s lovely to have you hear, it means though, there are more and more searching the internet to find support, resources and answers when facing an eating disorder.

Thinking back on our experience and what we have travelled through plus what others have shared, there is a list of things that aren’t told to you when you start this journey. You find them out yourself the hard way and often alone. Some come as a surprise, others you realise are normal but you didn’t think about it. So I thought I would list them, just so it’s out there and because medical support teams don’t tell you.

  • You (the carer) are often the front-line and sometimes only line of care. Funding and resources can make it very difficult to get what you may need.
  • This is going to be a long journey. You won’t just get well after the first ’round’. It will take years in some cases.
  • You need to treat yourself for self-care just as much as you care for your loved one. It’s essential to survival.
  • Your marriage or significant relationship will be tested to the max. Take care of it.
  • This is NOT your fault. It’s not your parenting or your family. It is a genetic pre-disposition.
  • How exhausted and OVER it you will be. How refeeding is draining. That you will have a list of appointments on a weekly, fortnightly, monthly basis that you might have to drive miles to.
  • You will find yourself up against schools, doctors, clinics, friends, family. Most have a ‘warped’ idea of eating disorders. You have to explain and educate just to get the care your loved one needs.
  • You will need to swat up on symptoms, treatment, research. No one else will teach this. As you are the front line you need to know this stuff.
  • There are not enough resources or funds in place to provide what your loved one or you will need. That includes treatment centres and hospital beds. And a lot of written resources are often out of date (badly).
  • You are not alone – even if it feels like it. There are many of us on the internet, facebook and other medias who are travelling this journey and can support you.
  • Your child will become a totally different person – loud, rude, violent, abusive, manipulative and lies. This is the illness not your child.
  • Logical, clear, rational thinking will not be part of your loved ones thinking. The illness is in full residence and they are not able to eat, care, stop or save themselves when they are very ill.
  • When really sick, they smell. This really threw me. My beautiful daughter smelt like death – sour, old and decaying. The body is breaking down and the smell starts from a relatively higher weight than you think.
  • Watching the lanugo (fine hair) grow on your child body. Also quite freakish for a parent. It’s the body’s way of keeping warm when there is no fuel to feed it or enough fat to warm it.
  • Night-time heart rates go much lower than day time. Whilst doctors do the medical observations they only ever do day-time, standing and sitting ones. At very low weights the night-time heart rate is actually very scary and can be dropping into intensive care levels without you knowing it.
  • Medical professional won’t know it all. Medications are one big area they are in the dark about. It’s trial and error, of sometimes many medications tried or grouped to find something that might work.
  • That relapse is every parents nightmare, when in actual fact it can be monitored and cared for quite closely by an aware and caring team.
  • There will be a before ED and an after ED state for your family. It will affect everything and the way you live and think for years to come – even when your loved one is fully recovered.
  • Eating disorders are a family illness. It will affect all the members and relationships within.
  • How quickly your loved one can develop an eating disorder and become critical.
  • The blood results will stay ‘normal’ for ages then suddenly drop at the last possible minute. Make sure you have medical support around you.
  • Hope is real and full recovery possible. Even good levels of recovery are better than the original illness.
  • Associated and long term digestive problems, bowel problems, bladder problems, over health problems, teeth, bones, Vit D, Vit B, calcium levels.
  • Despite all the pain, fear and the enormity of it all, you will be given strength to do this.

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This is another choice of words that aren’t used correctly or appropriately. Very much like my post on preventing an eating disorder. It gets bandied around so much that it sounds like it’s a simple choice. That it is something totally within your control at whatever stage of an eating disorder you are.

Eating disorders are a mental illness. They do not conform to normal thinking standards.
The normal decision process is compromised. The lower the weight – the more compromised.
If this was any other illness, medical intervention would happen regardless.

The medical profession would step in and save their lives. But for some weird, unknown reason, the medical profession thinks that eating disorder patients should be treated as normal sick people and can make their own decisions about their health. They assume that as adults (16 and up) anyone has the ability and right to choose, that any intervention is wrong or intrusive or demeaning. They assume that people with eating disorders can choose logically and clearly. My heart is wrung from letters  and stories I am sent from parents with adult children, who are ignored by the medical professional. They are sent home from treatment places and hospitals because they don’t cooperate or discharge themselves. No severely sick ED patient cooperates. It is always a fight as the ED is in control. They are given no ongoing help after suicide attempts or almost heart failure emergencies. They are told over and over again, they simply have to choose to recover – then they will get the help they need. There are a million cute posters and pics depicting the ability to choose. It’s not a blanket, one size fits all. Choosing comes at an appropriate time in recovery.

What heartbreaking bull-shit! At very low weights most ED sufferers  cannot choose to make the right decisions for their health. Their perception and thought processes are compromised heavily by the ED. Their ability to rationalise, make decisions, be logical and to choose a healthy life is radically and negatively challenged. Most cannot do this. Age is not the deciding factor of whether they can choose. Regardless of age, the ED is in full control. They deny, compromise, side-step or whatever to not give up the eating disorder. Many cannot even see it is the eating disorder that controls and distorts their perceptions. It’s not that they love their eating disorder – most of them hate having to live a life that is controlled, miserable and painful. Many do see what they are missing out on, but cannot make the choice to change. If they do manage this, they end up compromising with the eating disorder. “I will gain this many kilo, but not enough to be this weight.” ” I will eat enough to stay out of hospital”. ” I will eat just enough to have a baby”. Forward steps, but not really choosing recovery. It doesn’t matter what age the sufferer. Under the heavy control of the eating disorder at low weights all thinking and choice/decision processes are heavily distorted.

Under 18’s are subjected to early intervention and refeeding programs to get weight back to the correct level and to keep it stablised at this point for a few months. The brain is nourished and it thinks more clearly and is able to make more logical, clear decisions. The longer the stable weight, the better the brain function. Once recovery gets to this stage of stable, correct weight THEN the choice to recover becomes a real thing.  Sufferers are learning by now they are not the ED. They learn they are separate and can continue to separate further from the ED. Choosing to recover from this point is a hard decision in itself. It means leaving the ED, means facing fears of eating and food. It means striking out into the unknown, confronting mental and emotional issues and learning to heal and find other ways of responding to life without retreating to the ED. All this goes through the mind of a sufferer. The strength is in knowing recovery is possible and recovery is real.

Tchoosing to recover from eating disorderhe sufferer chooses to fight back on a daily basis towards a goal of higher, strong recovery. Each meal, each thought, each behaviour becomes a choice – the ED or recovery. It’s not easy. At first the choice is pretty much always lost or is a serious struggle. But it gets easier with each victory – no matter how small. Celebrate each small choice – it’s a step away from the ED. This is choosing to recover. Each day, many times a day. Choosing to recover does not at the very sick, low weights.

Sophie only survived because of medical intervention. If her heart had been that little bit stronger, the hospital would have allowed her to choose!!! Really?? She was too sick to make a logical decision to eat. She couldn’t and wouldn’t. If they had left her to choose, she would have died or been on life support. She was strident in her fear and denial and refused all food. The NG tube saved her life and nourished her brain. Her choice to recover came after her 3 trip to hospital and she had been at a reasonable stable weight for a few months. Her daily choosing to recover started from this point. Choosing to stay strong. Choosing to keep moving forward. Didn’t always happen, but the goal and choice was there.

It’s exhausting choosing to recover, despite the correct weight and with a nourished mind. So many give in for a meal, a day, a week and so on, just to give themselves a rest from the screaming ED voice in their head. It takes a lot to fight back. It is again, a mental health illness, not an illness about weight and food.

Sophie sits beside me as I write this. She agrees with it all, and has verbally said some of what is written. She said she could not choose to recover until her body and brain had reached a stage of feeling better and thinking more clearly. Her thoughts – when she is an adult and if this happens again, I have permission to get full medical intervention and tube feed her again. She knows and agrees that there was no way she could have ever made a decision to save herself at the low weight she was. Adult sufferers are not different to teenagers. We just give them rights that do not exist in the realm of eating disorders, and with faulty medical care, old beliefs and myths they remain where they are, attached to the eating disorder.

believe in recovery

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You can have all the help, support, treatment and therapists but the bottom line about recovery, relapse and healing is this:

To beat anorexia you have to eat

This isn’t the “just eat” type of comment. It is the deep, caring, understanding statement that in the end says “the only way to fully fight back is to eat”.

It means fighting against the voice of anorexia and the deep fears it has created in you – the food rules, the list of forbidden foods, the safe foods, the fat fears, skinny is best rules.

Eating is a normal activity. It is an essential activity for life and health. The mind and body need to be fully nourished for us to perform at our best. Eating is meant to be flexible, intuitive, fun, enjoyable, social, delicious.

Sticking close to the safe food list not only slows or stalls recovery, but it tells the anorexia that it is still in control and winning. Having a strict routine of counting calories, weighing food, using certain bowls and utensils, eating slowly, missing meals is also telling the anorexia it is still in control.

To beat anorexia you have to eat. You have to break down the rules and fears.

The rules and fears aren’t real. I think this is the hardest thing to realise. That other people do not have these rules and fears in their heads. It is the anorexia and only the anorexia that is making up these rules and fears. It distorts your thinking and your perception. It creates denial, smoke screens, irrationality and lies.

The biggest freedoms from anorexia are literally not having the rules, routines, fears and bondage that you live with on a daily basis.

Beginning to eat again is not an easy process. I truly know how hard it is. Sophie had so many rules and fears. It took months and in some cases years for her to confront the fear for each and every food. The fears are not a blanket approach – each food on the forbidden list had it’s own fears. For someone who only had 6 safe foods, Sophie’s forbidden list was formidable. For her it was a matter of finally deciding to choose recovery and be committed to it. It meant facing one new food at a time. Some foods were easier than others. But it did get easier over time. As the anorexia lessened it’s hold, Sophie found trying new foods and adding them to her diet was not as hard. Telling herself constantly that the fears and rules were all false also helped. It’s like reprogramming your mind.

Forever etched in my mind is her look of delight and amazement when trying a strawberry for the first time in years.
It was a truly magical and amazing moment.

Whilst you are confronting the anorexia and learning to eat again, this is where the therapy and support come in. Help to encourage you and let you know you are not having to face this alone. Treatment to help you unravel the hold the anorexia has on your mind. Meal plans to help you learn to eat again.

Do you want to beat anorexia? Claim back you life? Finally have freedom?
Eating = healing

eating = healing

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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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I love this post from Stacy’s Heartprints of God

Makes you remember there is much to be thankful for and to realise everything is always part of a bigger picture.

 

1. Life is a gift. Don’t save it. Unwrap it and live every minute of it.

2.Mercy given doesn’t always come back to you from those you’ve given it to, but it does come back.
3. God can use anything in your life for His purpose and His glory. Let him work.
4. Yes, we are different – unlike anyone else. That’s what makes me, me and you, you.
5.  God can. God will. God does.
6.  Stepping out of your comfort zone is a good thing.
7.  God paints a new sky each moment. Look up. And, do it often.

 8. To look your best, all you have to do is smile.
9. “It’s OK” – Say it. Mean it. Believe it.
10.  Faith – You’ve got to have it.
11.  Life is full of little distractions. Keep your focus on that which matters most.
12.  Tears are the words of your heart. Don’t hold them in. Let them speak when you can’t.
13.  Give grace.  To others and yourself.
14. God first. People second. Everything else third.  Always.
15.  Time doesn’t heal all wounds; God does.
16.  Pain has a purpose.  Find it and make it count.
17.  JOY is one of your strongest spiritual weapons. Hold on to it with all you’ve got.
18.  Different isn’t necessarily wrong.
19.  Life can make you bitter or better. The choice is yours.
20.  “I can’t” never does.  “I can” usually will.
21.  What you do doesn’t define who you are.  God does.
22. God gives. God takes. When we live life open-handed, it makes both easier.
23. Laugh. Every chance you get.
24.  We aren’t called to be like other Christians; we are called to be like Christ.
25.  True happiness is found in true contentment.
26.  Accept others for who they are, not who they aren’t.
27.  Let your love for God change the world, but never let the world change your love for God.
28.  Everything can be a gift – even illnesses.
29. You never know who is looking up to you.  Always live so your life points up to God.
30.  Just because you’ve always done it that way doesn’t mean you have to keep doing it that way.
31. Sisters –  (and sisters in the Lord)  are one of God’s sweetest blessings.
32.  Praising God overcomes anything.
33. Be kind. Each word a gift.
34. We can have joy even though.
35. In spite of who we are, (amazingly!) God can use us to touch others.
36.  Meekness is not weakness.
37.  “I don’t know” – it’s ok to say it. Nobody knows it all.
38.  God does indeed grant us the desires of our heart.
39.  Memories – what a precious gift.
40. When things seem to be out of control, God is still in control. Rest in is faithfulness.
41. Eating and/or sleeping can make a “bad day” good again.
42.   Swings aren’t just for kids.
43.  When no one understands, God does. Go to Him.
44.  Say “Thank You” – people never grow tired of hearing it.
45. God is good.  All the time.
46. Live in the moment or you’ll miss it.
47.  Love them anyway.
48.  We are blessed to be a blessing.  Live to bless others.

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peer mentoring for eating disorder recoveryThere is a movement towards getting past sufferers to offer peer support to those sick with an eating disorder or in earlier stages of recovery. Good move and often it helps to talk to someone who really knows what it is like to have been there and who understands totally.

The ones I have been a part of in providing feedback about peer support, are offering training, parameters, guidelines to past sufferers as part of their training before they start to mentor. It is very wise and good forward planning. Eating disorders are so insidious and deeply hidden that it can be easy to unintentionally harm another person and trip them up in recovery. It is also essential to learn how to respond to fellow sufferers, when to block comments, not get involved with the ED talk, be objective etc.

If you are going to offer peer support or mentoring to fellow eating disorder sufferers then please be responsible and think very carefully about your own recovery, where you REALLY are, and what behaviours or words you say might be triggers.

  • are you still underweight
  • are you only in solid recovery less than 18 months
  • are you still doing ED behaviours weekly, monthly, relapsing
  • are you happy to compromise with the ED and let it have a corner of your life
  • do you think it’s an achievement to accomplish goals and still have ED behaviours
  • when eating do you still play with the food on your plate, move it around, shred it and then not eat the carbs or other parts
  • do you eat only salads, fruit, yoghurts
  • the list goes on and on ….

All of the above are normal recovery behaviours, but if you are mentoring someone weaker or sicker than you, the things I have listed can really trigger that person back into major relapse. Even your body shape is enough to trigger someone.

It is seriously uncool, if the person you are offering support to relapses because of the words or behaviours you exhibit that are ED related.

It’s admirable that sufferers want to help others and don’t want others to die, get sicker. It’s admirable to encourage and care for each other. But don’t rush in when you are not strong in recovery yourself or are still exhibiting ED behaviours that will only confuse and harm others.

Some sufferers find support groups or mentoring works for them. Others find it intensely triggering and are better off recovering alone. You can’t put a blanket approach over everyone and think that the support you offer is always going to benefit.

Be responsible, be open, be aware.

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