Sunday, 31 March 2013
Everything was going smoothly as regards me explaining The Plan to Ben yesterday lunchtime when - ROAR! - in comes a huge Sherman Tank in the form of my husband who began to say a ton of stuff that was probably best not said right there and then. Or not said at all, probably. Result? Lots of yelling and crying.
Saturday, 30 March 2013
... to bring the Contract back into play BIG TIME to encourage Ben to put on weight in the run up to making the decision about university which we need to do by the end of June. Ben has lost nearly 1kg since I last weighed him 2 weeks ago, and so it's all systems go as far as I am concerned to get the weight back onto him - and more. It will be interesting to see how easy or difficult it is for me to get him to play ball...
... said CAMHS early on in the treatment as I immediately insisted Ben needed to get back to where he was before he lost one quarter of his bodyweight: a big, burly rugby-player. A "forward" in the team. What they were looking at was "manufactured" me - quite short, slim and toned. I looked like the kind of woman that "took care of herself". But this slim, trim figure was entirely due to carefully watching what I ate together with hours in the gym.
Friday, 29 March 2013
A little while ago I re-joined the gym after a four year break although, these days, it's more of a relaxation thing; I spend most of the time in the pool and sauna. Anyway, today, who should I come across but Mrs X, one of Ben's old primary school teachers. Back in the pre-ED days she and I would chat regularly in the gym changing rooms - she on her way back from school and me on my way to pick up Ben from after-school rugby. We also bumped into each other on the ferry back from France following our disastrous holiday in Cognac in summer 2010 and had a long chat up on deck. So today we had a curious conversation (curious from my perspective because of what I didn't say). It went something like this:
Some of us have been discussing fundamentalist Christian "faith-based treatments" for eating disorders which I won't go into here. But the general consensus of opinion seems to be that religion can be a great emotional support if you are a believer, but "faith-based treatments" can never - and indeed should never - be a substitute for modern evidence-based treatments for eating disorders. But all of this has brought my mind back onto the subject of religion - and my experiences with the Christian church during the dark days of my son's eating disorder.
Thursday, 28 March 2013
I won't publish it here because these days I prefer not to mention specific weights (which might be triggering for other eating disorder sufferers), but this week I finally produced a full Excel chart of the changes in Ben's weight during the 26 months he was with CAMHS. It makes for interesting reading...
Tuesday, 26 March 2013
Tomorrow I am at long last meeting with my MP to talk about eating disorders. I'll be focusing on the 16+ issues i.e. the way parents are eliminated from the equation once a child officially becomes and "adult" - and that these "adults" are expected to be capable of making their own decisions as to whether or not they require treatment. Indeed, whether or not they are ill.
Monday, 25 March 2013
I am so very grateful to all the UK families that have come forward to talk to me about their own experiences of eating disorders. What began as a look at the stage between first realising something was wrong with your child through to referral by the GP, is now focusing on the whole story - from beginning to where families are now. It's just the way it's naturally developed.
Friday, 22 March 2013
One thing that is coming across very clearly, and it's something that seems so very, very obvious - so obvious it screams out at you - is that the entire treatment team and the parents need to present a one hundred per cent united front against the eating disorder. We parents already know this and, thankfully, so do some treatment teams. But, again, it's a postcode lottery. We don't know this until we find ourselves in front of the CAMHS team (or whatever) we've been allocated. Here in the UK we don't seem to get any choice.
Thursday, 21 March 2013
I am getting a really, really good feeling about my next book - the one where I talk to families about their own eating disorder stories. It's morphed from being more about the early days (up to referral) to being more about the whole story. It's just the way it seems to be developing And these families are truly amazing!
Tuesday, 19 March 2013
Over the past week I've been busy talking to families about when anorexia entered their lives: how they first realised that something was wrong through to treatment. It's been a real eye-opener - and I still have a dozen or so more families to talk to.
Thursday, 14 March 2013
Our local university has said that they are willing to transfer Ben onto their degree course if he decides that he isn't ready to live away from home. It's exactly the same as the other university course, at a similar "ivy league" university ("Russell Group" as they call it in the UK). But it would mean that Ben could study for his degree while living at home. He has until the end of April to make a decision.
Wednesday, 13 March 2013
... Who were kind enough to send me a lengthy and very detailed response to my enquiry about GP training on eating disorders. (As a background to their function, the College says: "The Royal College of GPs (RCGP) has the role of setting standards for GP training. It does this by setting the curriculum and assessments for training, both of which are approved by the General Medical Council.") Here is what I feel is the most relevant part of their reply to me...
Last week I had a chat with a local GP about eating disorder awareness which was quite illuminating. Obviously this is just one GP from just one GPs' practice - a large, established practice in the leafy suburbs of a big northern UK city. Anyhow, this is what she said...
Tuesday, 12 March 2013
I think it's because my new book Please eat... has taken up so much of my time, energy and emotions over the past 18 months that now it's "out there" and published, I feel kind of weird... And I guess this feeling isn't unique to me. Also, I've nurtured every word, sentence, paragraph and chapter so very carefully over the past 18 months, that sending my "baby" into the Big Wide World is a real wrench. And, of course, I am worried that no-one will buy it or be interested in our story...
Sunday, 10 March 2013
I am pleased to say that, last night over our evening meal, the talk - from Ben - was all about going to university. It seems as if he's been able to put the eating disorders nurse's "throwaway comment" into perspective. Yes, to him, she's not someone he would want to depend on if his eating disorder made a reappearance (which it hopefully won't). But, with the plan to initially spend half a week in Sheffield and the other half of the week here, we will be able to monitor him. And, for so very very long, he has come to depend on me to be both "clinician" and "carer". In other words, he may never need to see the eating disorders nurse at all, should the worst case scenario happen.
Saturday, 9 March 2013
It was back in June 2011 that the school nurse collared me and said: "You should publish your story in a book to help other parents." "What me?" I said. "I can't write a book!" "Why on earth not?" she said. She collared me again in September 2011: "Had any more thoughts on the book?" And the rest, as they say, is history...
Friday, 8 March 2013
Three and a half years of living with an eating disorder and watching it systematically destroy my son's teenage years - all those years that parents have so many hopes and dreams about - has removed any ability I have to feel disappointed. Last September, when Ben left university, I felt deep disappointment and wanted to throttle the eating disorder for doing this to him, for smashing his hopes and dreams as well as ours.
Ben was in tears this morning. The reason? My (frustrated) reaction to his (frustrated and confused) reaction to a throw-away comment made by the university's specialist eating disorder nurse yesterday. The comment: "Well you look absolutely fine now. I can tell by looking at you."
Thursday, 7 March 2013
Today Ben and I returned to Sheffield, not having been there since that fateful week in September when he jumped ship and decided to take a year off. Like then, we did the rounds of just about everyone we could do the rounds of: accommodation office, student support services, disability support services, student health services and the faculty admissions tutors - between 10am and 5pm and I am well and truly knackered!
Wednesday, 6 March 2013
When I publish my book "Please eat... a mother's struggle to free her teenage son from anorexia" next week, I am publishing it to help other families realise that they are not alone in their fight to free their teenage son or daughter from this devastating and potentially lethal illness. I am not publishing it so six copies of it can sit, unopened and unread, stacked in dusty vaults of the six Legal Deposit Libraries in Great Britain and Ireland.
Monday, 4 March 2013
It's my own fault that I'm juggling so many balls at once, of course. That's me, down to a tee. I always feel I have to be on the go doing something and find it hard to sit down, relax and read a book, say... Then I panic because of the backlog of self-imposed things that need doing. Like I still haven't made an appointment to see my MP. I still haven't made an appointment to chat to the GPs at our local practice. Etc etc...