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Posts Tagged ‘relapse’

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 And a lot of written resources are often out of date (badly).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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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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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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Relapse is not a failure point. It is not a weak point.
It is not the fault of parent/carer or sufferer.

Relapse is very much a normal part of having and recovering from an eating disorder. 

From the outset eating disorders are not like any other illness. There is no definite point of recovery. There is no magic medication or treatment plan. There is no knowing how the illness changes or affects your loved one. No straight path back to health. That is the first point that must be clear to all. The second point is that the huge majority of sufferers will relapse. Third point, the relapses will get longer apart and not as deep. There is light at the end of the tunnel.

Because of it’s nature and the way the illness works in the mind there are many ups, downs and u-turns in recovery. Relapse is normal and a part of this. How strong the relapse and how many times relapse happens is just part of the unique journey to recovery. It cannot be predicted.

Re-entering a treatment centre or hospital again, is not a failure point either. If that is what it takes to keep your loved one safe, then that is what happens. It is not a bad thing or a shameful thing to go back into treatment. It is about keeping them safe until they are ready to have another go at recovery.

The brain for sufferers doesn’t begin to even breathe or start to function until correct BMI weight is gained. The longer correct weight is maintained, the more the brain will improve and the separation from the eating disorder can occur. It is a 6 month minimum of correct weight to achieve the beginnings of this. You need at least a year of correct stable weight to really start the forward progress of recovery of both mind and body. These 6-12 months means that no relapse happens in between either, otherwise you extend the period of time needed to repair. So you can see how difficult and long the process is just to begin to repair brain and body.

All parents/carers stay on tenter hooks during this time. One day at a time towards victory. There are many down turns and then picking up the pace again. As long as the down turns are not viewed as defeat. It is part of the essential lessons and learning of how to learn to push away the eating disorder. It is learning why it is your ‘safe zone’ and what things trigger the need for the safe zone. It is essential these points are learned, and often relapse is the only way to learn them.

The reason for this almost repeat post of some time ago, is the parents I have met who are terrified or shamed that their son or daughter can’t get well. That they should be further along and not relapsing, or worse looking like they may need in-patient treatment again. It is what it is in the end and you can’t fight against it or change it. Accepting the path recovery takes, means the less emotional baggage you carry.

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illogical behaviour of eating disordersThe eating disorder is an illogical system of thoughts and behaviors, attempting to solve deep self-esteem and identity problems and give a sense of control over one’s life. Those surrounding the individual with an eating disorder need to understand: logic doesn’t work, love does. Find ways to express your love, without over controlling or domination. When your child is over 18, this is all you can do – express love and support. For those under 18, yes parents/carers can have more power to get help, therapy and intervention. BUT even then we too must not over control or dominate to the point our loved ones have no ability to think or move. It is such a fine line at times.

Parents and carers find eating disorders extremely difficult to understand and accept. Seeing someone you love starve or damage their bodies is stressful, and, often, parents, spouses, and others begin to become intrusive in their efforts to get the person to eat or to stop purging. Soon, the individual may see these loved ones as enemies trying to control her rather than help. The more you push, demand, control or manipulate the further you will push your loved one away. You are only building a great wall between you that is not going to help or promote recovery.

Giving love and support means during the whole illness, no matter how long it lasts or how deep or shallow the relapses. Our 15-16 yrs old will grow to be adults often with the illness still active. Our young adult children need just as much love and support, more because that is all we can give them. Even once the brain is re-nourished and you can see your loved one making decisions, don’t expect them to make logical or rational decisions about food or eating. It will take a long time before food and eating become normal – if ever. Forget logic, just give love.

Most of us learn the fire is hot when we get burnt. We only do it once – although some of us have a few tries before we finally learn. Logic says ‘don’t touch, I get hurt’. Eating disorders are not like this. Sufferers don’t learn to not do it again. Relapse occurs over and over again, year in, year out. Some never even make the recovery stage for years. Just because your loved one does get to a great place in recovery, don’t expect logic to suddenly click in, and they decide to never starve, purge, binge again. It will happen, and logic will have nothing to do with it. Asking logical questions, expecting rational answers won’t do anything except make your loved one feel ‘odd one out again’, ‘weirdo’, ‘failure’. Eating disorders are an illness that defy logic every single time.

Sophie relapsed for a few weeks just now, and yes she will do it again. Logic will have nothing to do with it nor be able to stop her from sliding back into eating disorder comfort.

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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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