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slippery slope of anorexiaWe have been down to visit Sophie – my half semester visit to check she is going ok and to help with homesickness.

When she was home in July, I blogged how she had lost weight. Not in any danger zone, but certainly dropped a size. I hoped this was just her adjusting and her normal body shape and weight sorting itself out.

First impression when we saw Soph two weeks ago – “shit, she lost a lot of weight”. Dropped another size. Now there is NO room for movement in her weight. Loss of weight from here is the start of the slippery slope.

The complication is the trigger weight is not known. We used to know what weight would trigger the brain into full anorexic behaviour and make it difficult to pull Sophie out. Because of height, muscle and body changes during recovery and getting older, we don’t know what weight will start the trigger.

She had a good talk to me (whilst walking around the Victoria Markets). Makes it less intense for her this way. She admitted to having the voice back in her head and having to fight it. She admitted to having fear foods again and balking at eating them (or just not). The voice isn’t just telling her not to eat, but that she is a loner, is weird, no one likes her, she isn’t good at art – the whole sad, sorry and destructive stuff the anorexia does.

What can I say when I am so far away? Basically not a lot, except let her know I am her support and can listen. But I can’t make her eat and my encouragement is all I can give. I can only advise her to see her counsellor (thankfully she has done this twice since we left). What gets me most is that Sophie can see this happening to herself. She doesn’t want it to, doesn’t want to go back into anorexia land. But finds it so hard to fight back and gain back control from the voice. So easy for the anorexia to slip back in.

What made it turn up again? Nothing really. The internal issues she has, have surfaced more and she needs to deal with them. These are the same issues as before but she really has never broken free and forward progress seems to be very slow over time. Maybe the issues she sees are something she cannot solve as they are her character and personality. She misses home, misses my foundation support but also knows she has to stand on her own feet and fight this herself. The weight loss from sickness and not eating as well as she could, is probably the main trigger. Normal life just doesn’t happen in many respects for those in recovery from an ED. You always have to watch your health, stress, eating habits. It can be so easy to start falling down the slope again.

Supporting someone from a distance is tricky. Sophie is paranoid and super sensitive at the moment (all anorexia traits). She asks for advice and then tells me I don’t get it or understand. She dumps her emotions and then hangs up. The ‘fix’ she wants I cannot provide. The answers lie within her but she can’t or won’t face them. Supporting someone in an intensive uni course is also very difficult. The distraction tool box she has is based on her having free time to do some of the activities or take a break. When you are studying full time (5 subjects a semester and art being far more time intensive than essay writing) where do you find time to delve into the distraction box. We talked about this last night but it needs more exploration.

Whever this goes, we do it together. Praying and hoping the slippery slope doesn’t happen.

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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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“Learn to separate yourself from the eating disorder”

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

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

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

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

1. Give it a name

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

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

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

3. You still have a voice

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

4. Make third party statements

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

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

5. Notice your vulnerable triggers and times

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

6. Don’t beat yourself up

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

7. Believe

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

 

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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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black and white thinkingWhilst black and white thinking can make decisions and life simple, it stunts both growth as a person, expression, communication and the ability to perceive or discern what is around us. Another way of explaining black and white is polarised thinking.

I have been watching my two. Both are black and white. What I didn’t appreciate is there are levels of black and white. You would think black is the extreme end, but no, we get black black and white white. One child is black/white – the other is black black/white white on the same things.

Being unique beings, my two also have differing things that trigger the black/white thinking. Communication can be difficult and understanding each other’s perception is challenged because one is polarised on an issue the other isn’t. Then in trying to find common ground, they try another tactic which can trigger a polarised position in the other child.

Frustrating yes, confusing yes. For all of us. I mostly see all the shades of grey when dealing with others which in itself can be disabling. Procrastination and indecision haunt me, because I am always seeing all the different sides and choices. When dealing with myself, I am more black and white, hence the depression.

For good reading on black/white thinking, polarised thinking the links below are very good at explaining what it is and how to change thinking patterns. Those with Asperger, eating disorders, depression, anxiety, BDD etc, all suffer from this pattern of thinking and it challenges the recovery process.

http://psychcentral.com/lib/15-common-cognitive-distortions

www.cci.health.wa.gov.au/docs/ACFE3E2.pdf

http://www.php.com/how-explain-black-and-white-and-gray-thinking

http://www.health.com/health/gallery/0,,20591880_8,00.html

 

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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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I wanted to share this lovely post from one of my readers. As a mum with two children struggling with an eating disorder she gives some great advice, hope and strength to those of use following a similar path. The reality of living with an eating disorder in the house is different for everyone. It is tough, frightening, painful and like living in some private, hellish parallel universe. What is also frightening is how strong a link there is from eating disorders developing and fathers who are absent, abusive and neglectful.

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Hello everyone,

A swift update. My son Jordan [who likes to be called just J] ended up being sectioned and spending nearly two and a half months in the Huntercombe hospital, Stafford, UK. It was a nightmare trying to get him in the ambulance to take him on the 3 hour journey – his resistance and strength was superhuman – quite surprising for someone so weak with starvation. The dents in my freezer where he punched it is testament. I’d even struggled to disarm him when he’d grabbed a couple of bread knives and tried to stab the social workers. Once inside the hospital, he protested violently, kicked the furniture and finally fell to his knees, sobbing and breaking down totally. It was heartbreaking, but necessary. I was relived that he was finally where he needed to be. He was admitted weighing 8 1/2 stone after losing around 1/3 of his body weight. After admission his blood pressure dropped dangerously low. Thankfully the hospital staff saved his life and put him on the road to recovery. He hated it there, but was determined to do whatever it took to get himself out and he quickly and steadily gained weight. He was discharged weighing 10 stone, which is still very low for his height, but he is terrified of getting any heavier.

He is still firmly in the grip of anorexia and doesn’t really want to recover [although he tries to convince us that he has recovered.] Just like Sophie, for the first month he seemed to be doing well; he was perky and chatty, controlling his own food intake and maintaining his discharge weight. However he is now slowly losing weight again, even though he eats somewhere between 1700 and 2000 cals per day. He goes through periods of food obsession. At first he would only eat a variety of just a handful of ‘healthy’ foods; that changed and his calorie intake came largely from ‘healthy’ fluids, including lots of milk; now he’s gone to the extreme of eating mainly unhealthy food and drink, such as energy drinks, kitkats, fish and chips from the chippy and black coffee. He sees the CAMHS team regularly, but under duress. He refuses to co-operate and will only agree to being weighed and having a very brief consultation. He began haphazardly taking his anti depressants, just before stopping them completely, insisting he doesn’t need them. He refuses to see the medics and have tests re his curved spine and sleep paralysis, saying that he can’t stand being touched during examinations. Despite all of this, the old happy ‘normal’ J that we used to know – the one that used to joke around and the one who you could have an intelligent conversation with – does still exist and emerges fairly frequently. He is very changeable though, one minute he’s laughing and feeling optimistic about the future and making plans/setting goals and the next he’s angry and depressed and saying he didn’t ask to be born. He is frequently argumentative, aggressive, verbally abusive, selfish … it’s as if he’s possessed by the devil. I’ve learnt to keep my composure and walk away from him when he’s being nasty, telling him I refuse to talk to that other voice/creature. After a short time he will calm down and be nice and reasonable again and all the harsh words will have been forgotten. He never apologises though and has a complete lack of empathy for anyone else. The good thing is, he is truthful and admits his dieting had got out of hand, that it was all about control, that he does hear the ‘anorexic voice’ [saying, for example, that he used to grab a handful of cereal, put it in his mouth, but was then compelled to spit it out], that we had all been right, but that he had refused to listen, believing that we were all lying to him… He says he forces himself to ignore the Ana voice as he has no intention of ever getting sectioned again. He jokes that he’ll be visiting his younger sister Melissa in hospital when she gets sectioned. He tells me to stop worrying and that although he hates food, he knows he has to eat. He is aware that there is a strong chance of relapse and says he’s not going to let that happen. How can any parent not worry? Due to being malnourished for so long he now has low bone density and a curved spine and he has weakened his heart. He also has very poor short-term memory and constantly repeats himself. The hope is that he will settle at college next year, build up his confidence and find some happiness [he did try a college course this September but it was all too soon – all the anxieties and doubts flooded back and overwhelmed him and he had to drop out]. Thankfully he has a lovely supportive friend.

Melissa [now 15] is sliding down the same slope as J. After battling with her E.D and, for months being able to maintain her weight of around 8 1/2 stone [which is very low for her height of 5ft 8″], she is now losing weight again and struggles to tip the scales at 8 stone, fully clothed. She used to be a healthy 10 stone and a perfect size 10, but thought she was fat. She is very rigid in the handful of different foods that she allows herself and in her calorie intake, which is now only a few hundred per day. She still thinks she’s fat even though she is very thin. Thankfully she has a lovely CAMHS counsellor, who sees her weekly and her teachers/mentors at Bryn Elian school in North Wales are bending over backwards to support her – she is allowed to leave early and go in late on some days, has been able to drop unnecessary subjects and is allowed to learn maths at home. So the reduced school stress has resulted in an improvement in her confidence and mood. She is motivated to complete year 11 and pass her GCSEs and go to college next year. Hopefully she can stay healthy enough. Frequently though she gets so depressed, tearful, argumentative, nasty and even violent. Her eyes glare and something ugly speaks. It really isn’t her as the real Melly is gentle, loving, caring, helpful, beautiful and a joy to have around. Ana-Melissa sometimes threatens to self-harm. We have spent endless hours just talking and cuddling and crying together. [She’s so different to J who doesn’t do hugs]. Despite the fact she has many lovely supportive friends and lots of male admirers, she struggles to be happy. She feels constantly cold and her hair is falling out.

Their older brother and sister Andy and Shelly seem to have given up and feel that Mel is just an attention seeking difficult teen. It is difficult trying to convince them that neither J or M want to be this way, that they cannot help it, nor can they fight it alone. At least Mel had the strength to ask her school teachers and everyone else for help. I try to stay calm and understanding and supportive and positive thinking, however I’m not supermum and I sometimes can’t help raging and effing and blinding back at them. And yes, I’ve told them both to just grow up. I do get over my angry outbursts and frustration quickly though and both J & M know that I’m just releasing tension and that I’ll always be there for them, will always love them and will do whatever it takes to help them both back to health and happiness. My GP and the CAMHS team have told me to expect to be the punching bag and that this will be an up/down struggle for years, maybe a lifetime. There was only one time when I totally lost control, and that was when after the millionth time of going round and round in circles with Melissa I finally blew my top and yelled that I couldn’t take it any more. She had been my rock during our worst times with J and now she was sapping all my energy. Rather than hurt her or smash up the house as I so deeply desired at that moment, I stomped my way upstairs to my room, sat on my bed, gripped the quilt and, from the pit of my stomach, just screamed and sobbed and rocked backwards and forwards, yelling “why, why why”. This went on for a good 10 minutes until I had burst blood vessels in my face and I had nothing left inside of me. Shelly came up with a cup of sweet tea, spoke soothing words to me, told me everything’s going to be ok and helped me pull myself together. Meanwhile Melly ran outside and we found her sitting and just staring into space. Anorexia is an ugly powerful destructive demon. Daily I pray that J & M find the strength to overcome it.

If I could offer any parent advice I would say get your GP [pressure him/her if need be] to refer your child into the psychiatric services as soon as you know he/she is showing signs of a worrying eating pattern, and once there, if things don’t improve, push for admittance into an inpatient eating disorder unit/hospital. Remember, our kids will not/cannot just ‘snap out of it’. I was so angry with the old GP [we’re with a much more sympathetic and helpful one now] because he just dismissed us, saying nothing could be done unless J wanted help. He had a mocking, couldn’t-care-less attitude and told me I had no choice but to just wait until J got so ill that he’d be rushed into hospital, but by then it might be too late. I just sat there, stared at him with a look of shock horror and told him he has to get us some help. I didn’t move from my seat and just kept repeating that he has to help us. Eventually he said he would have a word with his colleagues at the local hospital and see what could be done. A few days later he phoned me to say that he had put a referral through to the Child and Adolescent services, but warned me that the waiting list was long and that we could be waiting weeks. Thankfully it only took 2 weeks.

My love and prayers go out to all who struggle with an eating disorder and all the families involved. It really is tough on everyone with all the stress and worry and constant walking on egg shells, not to mention the endless meetings with all sorts of professionals – psychiatric nurses, psychiatrists, doctors, family therapists, dieticians, school teachers/mentors/educational welfare officers… all this on top of having to earn a living.

Sorry I’ve gone on a bit! It helps to get the thoughts down. Mel also finds it therapeutic to diarise stuff that has happened in her life in relation to her father and what led to her eating disorder. She says that when she is older she will publish it on my website http://www.sharonkilby.co.uk/site/ The site exposes corruption in North Wales and the people responsible for forcing my children to live with their abusive father almost half their lives.

I have been shocked to learn that eating disorders are not so uncommon anymore. It seems that everyone knows someone who is suffering with one. Melissa knows 4 people in her school year who are sufferers. My boss knows 2 people who are anorexic, a friend of mine knows 2 anorexics [one of them fully recovered and went on to be happily married with child, the other person didn’t recover], my solicitor has an anorexic in her family… My God what is happening to our youngsters? Maybe EDs are symptomatic of the sick insane, evil society that we are forced to live in [more on that in my site.]

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