Saturday 19 January 2013

Like pushing you-know-what uphill...

Ben's major worry, ever since he began treatment for his eating disorder, three (yes, three!) years ago has been that his weight risked spiralling out of control. When the scales showed a slight gain (because it was never more than a slight gain), that heralded the start of the "spiralling". He risked going up, up, up and away into the upper stratospheres of obesity.


But, of course, this has never happened.

Not in three long years.

Sure, during those years Ben himself changed dramatically.

He went from heavily resisting treatment and help, and plummeting even further down the rabbit hole, to eventually turning a corner in the autumn of 2010 when - following the second admission to the cardio ward and CAMHS' threat to hospitalise him - he began to work with us, not against us.

He went from eating a massively unbalanced and unhealthy diet to eating an incredibly healthy, fully balanced diet. His skin tone improved, he lost the dark rings around his eyes and he gained some flesh around his bones. He had more energy and his mood improved. He felt better and the eating disorder rages and behaviours gradually began to fade away, surfacing occasionally, but - thankfully - only occasionally.

The only problem with this healthy balanced diet was that there was never enough of it.

Not really. Not in my opinion.

But Ben was happy because he felt in control. He still had this morbid fear of his weight going up and up, spiralling out of control. And he still does.

Yet, really and honestly, his weight isn't much different from what it was three years ago.

Especially today when the scales showed he's back down to what he was just after Christmas when he lost 2kg.

To be honest, I am sick and tired of this battle to get the evidence into Ben's head that there's as much chance of his weight spiralling out of control as there is of me becoming President of the United States. I have spent three years battling with this (not counting the months in the lead-up to CAMHS treatment when former rugby playing Ben lost one quarter of his original bodyweight).

I am sick and tired of being the "dolphin" who carefully suggests increasing his calories so this lost weight creeps on at a rate that - oh horror of horrors! - he can "cope" with. This is all we ever heard at CAMHS. Ben needs to increase at a weight he can "cope" with. Otherwise who knows what may happen.

Well, I'll be damned, his average weekly weight increase over the entire 110 weeks he was with CAMHS was... as Batty checks back at her diaries from 2010-2012... drum roll...

...ZERO!!!

A great big fat ZERO.

And... cue another drum roll... his average weekly weight increase between then and now has been...

Another great big fat ZERO.

Yes, I know that, during his 110 weeks with CAMHS his weight went up and down - and for six months it went EVEN LOWER, heading towards in-patient admission levels - but the fact is that he weighed the same when he left CAMHS as he did at the start.

And he is still that weight today.

I am so very, very, very weary and sick and tired of trying to gently push this weight up... of quoting all the science and stuff... of sitting him in front of one of the UK's top ED dieticians who also quotes all the science and stuff... of saying that we agreed in the new 2012 Contract that he would increase... of encouraging him to increase his calories significantly... because, Goddamnit, his weight is NOT going to spiral out of control.

And yet he still pretty much maintains.

"I want to see some serious weight gain over the next week," I practically barked at him this morning. "I want to see at least 2 kilos on you by Saturday."

He promised to increase his calories.

I've heard that so many times before.

I just feel as if I'm banging my head against a brick wall in the week that he assured everyone that he didn't need any further help because he is managing just fine by himself.

His head is okay, thankfully. His mood is okay, thankfully. It's just that he finds it impossible to gain weight, remain at that weight and then gain some more. Until he reaches his natural set weight, whatever that weight is.

7 comments:

  1. Batty, it's Cathy Z.

    Has anyone told your son that the reason why he is terrified of his weight spiralling out of control is because he is underweight relative to his 'set-point' weight and (to put it simply) his brain is instructing him to eat more? He is craving food (hence the fixation on it, the cooking to enjoy food vicariously etc.) because his body needs more of it.

    This is a Normal Physiological Response! It is not a sign that he is an inherently greedy person.

    Once he reaches his body's 'set-point' weight (i.e. the weight that is appropriate for him and at which all his organs function optimally) he will no longer crave food in the same way. He may still enjoy food (most people do..), but he will need more food to maintain that extra weight gain that equates to a weight that is healthy for him. At his healthy higher weight he will need more food on a daily basis; not less.

    The food cravings are not a sign of 'greediness', but a NORMAL physiological signal to consume more food energy.

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    1. Oh yes, Cathy, I have told him this... so did U... but it's just not going in...

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    2. It doesn't go in because he is so fearful. Even if he understands this logically, he still gets a fear response at the thought of eating more, or when he does eat more.

      My own situation has been very different. I didn't fear weight gain but I feared food itself - for various reasons. Most recently my fear has related to a fear of contamination and a fear that someone may have touched the food with dirty hands, or that the food is out of date etc. Unlike Ben, I have never feared becoming obese. Even so, I have had Big Fear Responses to the thought of eating and to eating per se, even though I recognise that these fears are illogical.

      The only way to deal with this is to eat the food and see what happens. Once we observe that we don't get sick (my fear) from eating, or 'fat' (Ben's fear), then the anxiety levels fall.

      Much of our brain functions unconsciously. Perhaps Ben has some unconscious fear that if he gains weight that he will not be the sort of person he feels he should be? (I don't think this is uncommon in AN...). When you have those fears, the AN serves as some sort of unconscious excuse - to yourself. You can blame things on the AN...

      Sorry this is so difficult for you :( xx

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  2. Hi Batty, it's Lisa R/Breathingmom. I'm wondering if, since you've done everything humanly possible to make Ben understand the need for more weight, perhaps now it's time to use your leverage as a parent? You've been a beautiful dolphin (and you're now a very tired dolphin.) I know you've worked with contracts. Would it help to have a mini-contract that says his weight needs to be up x amount in x period of time (a relatively short period of time) OR y happens. Is there something important to him that could be at stake? What do you think?

    Cathy's comments above sound right on target. The mental torture/anxiety about food WILL lessen for Ben if he has enough of it. But since he's in the grip of that disordered thinking, he can't make himself do it. Is there a way you can set things up so that he HAS to?

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  3. Yes, Cathy and Lisa, I think the leverage will be university. This is something we will be deciding within the next few months. I have already built weight increase into the new 2013 contract. But to be truthful I am sooooooo tempted just to take a bit of time out and let him get on with it...

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  4. Hi Batty, Lisa again. I wonder if university is soon enough. It sounds like Ben needs help THIS WEEK with eating enough to gain the weight you see that he needs. Is there any leverage you might have that is more immediate? I know you're tired, and if you need a break, take the break and then come back stronger. But once you're ready to fight again, I can't see the use of waiting a few months. Is there anything you provide as parents that he counts on, and that you could tell him is not available if he does not gain the 2 kgs or whatever he needs within a week or 2 weeks? My daughter (much younger at 14) does well with immediate consequences. She has something she desperately wants to do this summer, but I know it's not soon enough to use as leverage because she's not capable to doing something today for a goal that is so far away.

    I am so sorry that you were not able to get the full on Maudsley support that was needed.

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    1. Hi Lisa, Thanks so much for replying. I agree with what you say. Thanks for pointing this out. I will give it a go! Things are much better today. xx

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