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Posts Tagged ‘recovery from eating disorders’

and I mean, ALWAYS. Never give up.

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My vent did produce positive steps and thought from my daughter. We talked about how it impacts on the house, that I was sorry for the vent,  and how confused and helpless she feels at this stage and how helpless and frustrated I am. For now we take the softer line as we try to sort out where we are in this phase. Sophie, after that must have done quite a bit of thinking herself and decided being helpless wasn’t where she needed to be and she had enough in her to take back some control.

She got her distraction toolbox out and sorted through that. She came up with a couple of newer ones to add, even if it means ringing me, just to say she is struggling. So far she has managed to find something, even if it is small, to distract her from the bigger binges.

She also came up with the idea of instead of raiding the cupboard and fridge, to have a cup of juice each time instead. Seeing as I buy 100% juice it is a good choice in many ways. It has given her a sense of control, she doesn’t loath herself so much if she has 4 cups of juice, and of course, she doesn’t feel guilty she just ate her way through the family’s food. We are also putting into action for her to choose a food treat each day, look forward to that, savour it when it comes. She has always had something each day for ages, but to put a different context on it and make it ‘special’ may make her feel she doesn’t need more treats.

It doesn’t mean the emotions and issues that prompt her to binge are gone, but until she is able to work through those, she is learning to find her own strength in giving the ED boundaries and rules to adhere to. She is in control of the ED, not the other way around. It is a very, very positive step forward and the one that has been needed for a while to push recovery into stronger position.

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Rules are a part of life. We all have them – we just don’t recognise them as rules. Boundaries, guidelines however we call them, they give us parameters, safety and peace to negotiate life. Our rules are based – usually – on common sense, past experiences, socially/morally/ spiritually acceptable rules. They make  sense to others. We understand and communicate through our rules. A lot of our rules are also similar to other people’s rules. They form a part of seamless, acceptable society.

But as one of my readers pointed out and from our own experience, the rules that those with eating disorders apply to their lives are so different. They can actually block communication – often very effectively. They don’t make sense, they aren’t rational or based on previous experience. They just are. Unconnected, unreliable, untrue and damaging. Try having a conversation and getting agreement with someone who has an unrealistic rule. You get blocked, they get defensive and unmovable.

The most important point to know is this: Rules made whilst having an eating disorder have only one reason – they protect, enable and strengthen the ED. No matter how warped or illogical the rule, they make perfect sense to the sufferer. Why – because the ED is in control.

The rules change too, what applies this week, may not apply next week. They shift according to the need of the ED. If the ED is feeling vulnerable or left out, a new rule or a changed rule will suddenly appear out of nowhere seemingly. I know our counsellor (like one of my reader’s counsellors) has said, “that’s a new rule from last week – what has happened in the last week”.

Sophie had the rule (and it is still there though not as strong), that food must be on the table by 5.30 or she must not eat. Rule 2 – foods must be weighed; Rule 3 – if she didn’t look pretty she didn’t deserve life; Rule 4 – everyone knew she was dumb …. Really the rules just go on and don’t make sense. They don’t rely on any realty. What is very clear though, is that my daughter could discern that my rules, others rules where OK, she knew her’s were off-centre, but was powerless to change them and didn’t even want to. It was OK for her to follow these weird rules and it was OK for us to have our rules.

Pointing out the difference in her rules to ours, pointing out the irrationality only made Sophie feel even more screwed up. As she as often said “I already feel weird and different”. As in ‘don’t keep pointing out how far I am from reality and normality – it doesn’t help’. And truly I guess, it doesn’t. It is only in the safety of counselling that the rules can be explored. It takes time to break down the rules, to find new healthy ones. As far along the recovery road as we are, there are still rules that are not normal nor safe in her mind.

When weight is low and the eating disorder is strong, fighting the rules is very difficult and almost a pointless exercise from a carer’s point of view. All you can do is be there, gives hugs, give love, keep her/he safe as possible and wait it out. Heartbreaking but true. What you can grasp hold of is that it doesn’t last. As long as constant therapy and support is given the rules change, life becomes guided by the normal, safe rules most of us apply.

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How do you know if your son or daughter is going to be the one to gain full recovery?

How do you know if they will be one of the luckier ones that have the eating disorder for a few years?

How do you know if yours will struggle for years or a lifetime?

How do you know if Maudsley will work for your loved one? What if they become adults before you complete the treatment? What if Maudsley does work, but later on they relapse at university?

Bottom line – you don’t. There is no guarantee when you start this where any of you will end up. Eating disorders as a mental health illness are unique and linked explicitly to each person and their personality. Two people using the same treatments will not end up with the same outcome.

It is a stressful and unknown time for both sufferer and family. But not trying and not moving toward recovery is also not an option. Despite how you get there or how long it takes,  recovery is a real hope and it can and does happen for many people. You simply cannot ever compare your journey through this with someone else’s. All that does it setup of guilt, inadequacies, failure, anger, etc. It’s a no win situation. Sufferers feel they are letting their carers down, carers feel like the sufferer is not trying enough.

If you try to find outcomes or quantify/analyse how long or what ‘type’ you may is pointless. Setting the bar too high or low is detrimental. The best you can do whether carer or sufferer is to start recovery. Don’t stop, don’t look back or around. Just stay focused on you and your environment. If parts of your treatment aren’t working, find other ways. If a therapist has stalled in their approach, find another one if need be. Don’t align yourself with other sufferers who could cause you to relapse.

As a carer and parent, I look at other girls around my daughter at their stages of recovery. I know many of these parents all used the same techniques, FBT, similar support team compositions, even using same therapists etc. But each girl is different and in very different stages of recovery. Some have stalled, some creeping forward, some falling backwards, some making big decisions forward. You simply cannot predict how your loved one will respond. And most importantly you MUST work with what you have. I have learned not to put any expectations on the questions I outlined in the beginning of this post. I cannot and it wouldn’t be fair. After this is Sophie’s life we are talking about and as such, the bottom line and responsibility belongs to her now.

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I must admit I am finding this stage of Sophie’s recovery difficult. She looks well, but inside she isn’t. It is so easy at times to only go on the outer appearance. I know the rules but they can get side-lined in the midst of everyday life – when you need a decision from your daughter and she is incapable of making one.

I don’t want to make the choices for her anymore and I don’t want to be her only companion. It is time for her to start the breaking free process, and as much as it bewilders her and angers her, I really can’t keep doing this. She has the beginnings of tools, enough weight, and safety nets around her to allow her to make mistakes, learn, move forward etc. Our blessed counsellor yesterday didn’t let the ED highjack the session, instead she used the horrible last week as examples for how to build tools and resources for coping.

I find myself getting irritable and frustrated about the seemingly lack of progress and having Sophie still needing me to do everything and wanting to do nothing herself. I get impatient with her lack of decision and feeling hemmed in by her constant following. I am thinking it is time for tough love whilst still being in the background. Sophie is like a tree that you just planted out of a pot into the garden. Nothing happens above the surface for ages. The action is all below the surface. The roots and foundations of the plant are being built – then when ready the surface changes suddenly burst forth. This I think is where we are. Circling through a what seems to be a never ending cycle of restrict/recover and being stagnate, but underneath the changes are slowly happening. The role of her team and me is watering the roots and watching protectively from the side-line.

Thank you to my commenters’ that remind me that we are not alone, that this phase is par for the course for many of you. That is encouraging and helps me to refocus. As I replied, it is only a year ago that I started this blog, so much has changed in a year, and we are in fabulous place compared to last year. This is just the next step towards the next step. That we sit here longer than some of the other steps is just part of the whole process.

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Counselling day. She wanted to know why Sophie when she was sick, went straight into restricting mode. As Sophie said, it was so easy. She didn’t feel like eating to start with because she was sick (like all of us), but for her she just kept going. And it didn’t bother her, or ring an alarm bell. It seemed OK to do so, natural. And she would have kept at it unless her psychiatrist hadn’t told her to stop now.

What she found was three things, firstly how easy it was to restrict and not mind, but also that restricting didn’t produce the full positive outcome it used to. The eating disorder no longer works the same way and she finds it not as useful a tool, but that doesn’t stop her using it. In other words, the life jacket has a hole and it ain’t gonna do the job any more. And finally that she was not capable of deciding to stop herself, she was content to let it go on. It took the psychiatrist and myself to put the stop sign up.

My daughter is a lover of patterns, creating patterns in her life, sticking to them and using them to solve everything. She is now creating a new pattern – she has learnt to disengage and numb herself out, but without restricting food. She has found it a very useful blocking tool – at school, with her dad, her exams, friends. “meh”, “whatever”, “couldn’t care”. It means she doesn’t have to face the cauldron of feelings that still haven’t been dealt with. She has just moved onto a new blocking technique because the ED no longer fits the same as it did or brings the same positive results.

However, wise counsellor that we have, said her actions show that she is ready and it is time to start digging for the deeper emotional issues. But first she needs to learn tools and skills to help her cope better before they start to dig. Sophie is hedging again and throwing up other stuff that needs doing, busy stuff. Can’t blame her, whatever she has buried deep enough for anorexia to seem such a far better friend is obviously scary to face. She knows she is coming closer to having to do this – it is after all the point of therapy. Next week is supposed to be first skill lesson time so we will see what Sophie manages to find that might block that lesson.

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I am currently reading Joanne Poppink book, Healing your Hungry Heart. A former sufferer, now psychotherapist treating eating disorders, particularly in older women, her book is a delight. Sensitive, insightful and full of a lot of inside information into how eating disorder change and effect people, and recovery insights that other books miss.

Remember how our recovery team likened the journey of recovery to a boat and lifejacket? Poppink likens the beginning and existence of the eating disorder to armor and how and when the armor should be taken off. One thing I noticed with Sophie, was that even though she was a good BMI weight, for her to ‘ditch’ the eating disorder quickly or leave herself unprotected too fast, would have meant she was open and incredibly vulnerable to everything outside herself and inside herself. The chance of major relapse would have been huge had she followed this path. And she was only entrenched for what is a short time compared to those who have suffered an eating disorder illness for over a decade and beyond.  Yet short or long the period of illness, one thing is clear, you cannot force an eating disorder away from someone, nor can you hurry the process. Only when the sufferer has learnt enough tools to be able to handle parts of herself, and can see – finally – how great the cost of having the eating disorder outweighs the benefits it brings, can recovery move forward. The risk is too great, the empty hole the ED leaves is too wide, and so many other illnesses, obsessions, self-destructive behaviours rush to fill the gap.

As Poppink says, “I often tell a new client I cannot take away her eating disorder. I can’t. I don’t know how, and even if I did know how, I wouldn’t. It’s serving a purpose. To strip your eating disorder away would leave you exposed and vulnerable to your unbearable fears with no protection. I would be like taking off your armor in middle battle. Yes the amour is heavy. You are hot and sticky in there. You can’t move quickly. You could drown in a stream. You can’t touch another person or feel another’s touch. But the armor does protect you from arrows and spears that are coming at you from all directions. You take off armor when you can take care of yourself. Then the benefits of your defense outweigh the discomforts and risks. You seek recovery work when you realise the eating disorder you rely on to soothe you is causing more suffering than you can accept. Or you seek recovery when your eating disorder fails and you can no longer use if for emotional relief.

My line in my Tumblr blog also reads, I cannot take away your eating disorder but I can walk this journey with you. No one can force anyone with an eating disorder to abandon the protection it offers. It takes time for the person to open their eyes and see that the landscape has changed. Perhaps the issue has completely gone, perhaps the people who caused it are gone, perhaps you are older and can understand, perhaps you finally realise that the protection is harming you more than it protects you. But like real armor it needs to come off piece by piece. Take off each section, appreciate the feel of air on skin, feel emotions start to kick in, but slowly one piece at a time. What will amaze you, is once most of the armor is off, you will wonder in some respects, why the hell you ever put it on. It pinned you down, was rigid, inflexible, uncomfortable, painful and isolating. Yes it protected you but it created a hell all of its own.

Parents, carers, treatment teams, friends, family – anyone who demands that time is up, you should be better, you should be moving on, that it’s time you got over it – need to understand that you can’t. It is very frustrating those around you when it seems obvious to them. But to you it’s not obvious, logical, rational – all you know is that you are protected for some reason. But hanging onto the eating disorder, making it last longer and longer, will only increase the hell you live in. With support, love and acceptance you can beat this and remove the armor, climb into the recovery boat and head to shore.

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