Saturday 31 December 2011
... which will mean a new PDF for 2012 to sit alongside the (almost) complete PDF for 2011. This PDF is my attempt to make it a little easier for you to read through my blog entries in chronological order and / or click through from the index to any specific entries. Thank you to all my blog followers and all the lovely comments and feedback you've sent me over the past year. I wish all of you a wonderful New Year. May it bring all that you wish and hope for, and may it be enormously better than 2011.
Thursday 29 December 2011
...Although a dear friend of mine succeeded admirably in her latest blog post: http://extralongtail.wordpress.com/2011/12/29/fluffy-bunnies-and-eating-disorders/ We, ED-connected friends across the world, are starkly aware that young people are dying from eating disorders; my blogging friend has learned of four deaths in the past six weeks alone - and one of these was tragically on Christmas Day.
Wednesday 28 December 2011
Over Christmas I've been thinking that no matter how much I like our treatment team (now just one person: our psychiatrist) and no matter how much we are 'on the same page' of the 'same hymn sheet' these days, there is still one sticking point - and, the more I think about it, the more it seems to be a pretty big sticking point.
Tuesday 27 December 2011
A couple of minutes ago I got news that ED has taken yet another victim. Worse, this family lost their beloved child on Christmas Day. On a day when the whole Western World was feasting this family was watching their child die of starvation. On a day when a 'Slimming World' leaflet came through my letterbox, I found out about this terrible event. The irony... My heart goes out to that family. I hate this killer illness.
Wondering what to write following a much better Christmas than last year and definitely the year before, there was the temptation to write about what a wonderful Christmas we had. OK it wasn't perfect and the ripples of Ed are still there, notably on his 18th birthday on the 23rd, but I could have gone down the happy and thankful route. Then I read my dear friend Charlotte's latest blog entry and was prompted to write something very different.
Thursday 22 December 2011
18 years ago this evening things were moving... fast. I'd been having contractions for 24 hours and had already been down to the hospital only to be sent home because I wasn't ready. Then at 10pm my waters broke and it was back to the hospital for a LONG and PAINFUL labour until Ben decided to appear at lunchtime the next day - cooincidentally his Dad's birthday, too.
Wednesday 21 December 2011
Ben wanted to go to Edinburgh for his 18th birthday, so we did - and we've just come back. I was aware of the ED being there in the background a little bit. Not a lot, but definitely there. And it got me thinking that we still have issues that need ironing out before we can truly claim that Ben is 'recovered'.
Friday 16 December 2011
Thursday 15 December 2011
Funny how, for the first 12 months of our relationship with CAMHS, I felt as if we had two completely different agendas. I had serious problems consolidating the messages I was getting from my various professional and lay ED contacts and those I was getting from our CAMHS team. At times I felt totally at odds with them. Often I used to wonder whether they were colluding with the eating disorder rather than kicking it into touch.
Wednesday 14 December 2011
You know I'd never have known about this if I hadn't delved a little deeper and done some trawling around the Web... The fact that Ben's first choice of Uni now has what is called a Disrupted Studies Form which deals with exactly the kind of issue I've been ranting on about. It's brand new, introduced this year.
At the end of my last post a thought popped into my head. How come the government encourages universities to accept LOWER grades from students who come from 'disadvantaged' backgrounds like inner city estates and / or from families with low or no income - and YET there is no (obvious) policy of doing likewise for students who are disadvantaged because of lengthy and / or serious illness?
The thing with anorexia or any other eating disorder is that it's not like a physical illness. Sure, people can 'see' that you're losing weight at a rapid pace, but I believe that most people just don't realise that there is a mass of other really nasty stuff going on as well: messy emotions, erratic and sometimes violent behaviour, irrational thinking, compulsions, obsessions, personality change and a total inability to cope with normal life. It is not simply a 'diet gone too far'. It is not something that 'any sensible person' could 'just snap out of'.
Tuesday 13 December 2011
Last summer the tail end of the eating disorder helped Ben to flunk his AS level exams. As a result he has no less than FIVE resits in January. And he needs to get good grades in order to get the grades he needs in this summer's all-important A level exams. So, basically, if he doesn't do very well then he can kiss goodbye to his university choices. No pressure, then...
Friday 9 December 2011
I had a frank and useful conversation with Ben yesterday about whether or not he feels he will be ready to live away from home at university and successfully manage his own food and recovery. We need to decide over the Christmas period because, if he'd prefer to put our home city as his main choice, then we need to apply pronto for a special scheme that takes into account interrupted studies and the need to attend a local university.
Thursday 8 December 2011
Not wanting to labour the point too much I decided to stop at Day Ten and move onto something more current which is the continuing niggle over whether or not Ben will be ready to leave home for university in September 2012.
Sunday 4 December 2011
Saturday 3 December 2011
Friday 2 December 2011
Thursday 1 December 2011
Wednesday 30 November 2011
Tuesday 29 November 2011
Monday 28 November 2011
Sunday 27 November 2011
Saturday 26 November 2011
Friday 25 November 2011
... "The Nightmare on Christmas Fair Eve".
Christmas is a challenge for anyone suffering from anorexia and their family, to say the least. So in the run up to Christmas 2011 I thought I'd write 12 entries on whatever comes into my head about our own experiences of Christmas (x 2) living with an eating disorder plus how different this Christmas will be. Watch this space...
Thursday 24 November 2011
Thank you to those who left comments on yesterday's blog about the problem of integrating back into social life and school. Without a doubt, an eating disorder changes people; not just in the way it devastates lives, but in the way you - and those caring for you - emerge completely different.
Wednesday 23 November 2011
No matter what Ben does, his school friends still treat him differently and it's continuing to get him down. After much deliberation about it at CAMHS and at home, we are almost reaching the point where we wonder whether it's never going to happen and that this final year at school is, from a social perspective, a complete write-off.
Friday 18 November 2011
It's been something to do with the adjusting to our new life without the ED, or at least without 99.9 per cent of the ED. Suddenly it's as if we've emerged into the open sunlight after years of living in a dark underground pit. Or as if we've been released from jail and are having to adjust to life on 'the outside'. It's not easy. In fact it's quite a learning curve!
Tuesday 1 November 2011
Or, to move away from the house renovation analogy, our arch enemy the ED reared its ugly head a little bit this morning with: "I feel awful because I've just binged on top of my usual breakfast" when I reminded Ben that he needs to see his tutor in period 4 at school today to finalise his university application form.
Tuesday 25 October 2011
Out of the blue on Sunday morning I found myself en route to the church I first went to almost two years ago (during the long wait for treatment for Ben's anorexia and while Ben himself was rapidly and dramatically falling off a cliff). I only went to that church for three months. Although I was crying out inside - no - SCREAMING inside for help in a way only a parent can, I found the people I met at that church didn't or just couldn't 'get it'.
Monday 24 October 2011
This thought came to me this morning. For us, recovery from anorexia is like renovating a house - one of those 'Help My House is Falling Down' type houses on that telly programme. It's been a heck of a job to get it looking anywhere near normal, not to mention all the essential and time-consuming structural work you've had to do behind the scenes.
Friday 21 October 2011
This week has been really weird for 2 reasons: (1) I feel as if we've definitely reached a watershed in terms of recovery and (2) this watershed is exactly one year on from when we reached our original watershed i.e. Ben completely turned a corner in terms of working with us towards recovery rather than against us.
Sunday 16 October 2011
The closest I can get to describing how I've been feeling over the past week or so is this... It's kind of how it must have felt to civilians adjusting to life in peacetime after World War II. Suddenly the threat is gone: no air raids, no killing, no worries that Hitler will invade, etc etc. Yet for some people, I imagine, the adjustment to peacetime wasn't easy. Okay, so maybe I'm completely wrong, but I'm trying to find a parallel for how I feel at the moment.
That's what I was wondering, so I had a chat with Ben yesterday to see what he thought. I explained that we'd achieved so many of the things the contract had set out to do e.g. getting Ben out of 'limboland', ensuring he doesn't cheat on calories, easing him back into school, getting the exercise under control, putting on weight and doing daily challenges e.g. eating fear foods, etc. So, this far on in recovery, was the contract still valid?
Thursday 13 October 2011
Two years ago Ben and I went to the fifth form parents' evening. It wasn't brilliant. Ben had been away from school for quite a while, unable to face anyone or anything, let alone a school full of teenagers. So going along to the 2009 parents' evening, two years ago, was a bit of a challenge - for both of us.
Wednesday 12 October 2011
Phew, I am tired! Over the past few weeks I've been collating all the written information I've kept about Ben's journey into anorexia: around 24 months of info comprising forum posts, blogs, letters, notes, lists, emails, charts, etc etc.
Monday 10 October 2011
12 months ago Ben was sitting in front of our CAMHS team. For the first time since he'd started treatment eight months before, they came down like a tonne of bricks and insisted Ben increase his weight, starting immediately. The reason? The previous day Ben had collapsed at school and been rushed to hospital again with a dangerously low pulse rate... the second time this had happened in eight months.
Thursday 6 October 2011
While some parents may wish to put the whole eating disorder experience behind them and move on, for me it's always been different. Since late 2009 I've been making notes, writing forum entries and lately this blog, all with a view to putting this information to some kind of practical use in the future.
Wednesday 5 October 2011
The last three days have been quite tricky. Sunday was the same as the previous Sunday in that Ben's mood hit rock bottom as Monday's school loomed ahead. He didn't sleep on Sunday or Monday nights, and on both Monday and Tuesday he phoned me at break time. On Monday I picked him up at lunch, but on Tuesday I persuaded him to stay for the full day. Oh, yeh, and on Monday night he and his dad had an almighty row...
Monday 3 October 2011
On Friday evening Ben and I met up with another mum (and daughter) I've 'met' through the Around the Dinner Table forum (for parents of young people with eating disorders). We were joined later by another woman I've got to know through this circle, someone who has recovered from anorexia and who I've already met for coffee a couple of times.
On Friday Ben claimed his insomnia was 'cured', after a reasonably good couple of days at school. His mood was up, too. But by Sunday it was back down again, just like last Sunday. And of course with it came the insomnia which meant that by this morning (Monday) Ben was in a hell of a mood. In fact the only words he said to me this morning as I took him to the school bus were "Shut up!" Better than "Shut the Eff up!" I guess...
Friday 30 September 2011
Two years ago when he was spiraling into the eating disorder at a rate of knots, Ben was obsessed with comparing himself with another boy at school. So much so that Ben used to get incredibly upset and distressed about how this boy was stealing the limelight whereas Ben was disappearing into the background. If it wasn't so obviously distressing for Ben, his descriptions of this boy's apparent behaviour would have been funny...
Thursday 29 September 2011
"Look at my hands!" said Ben in the car as we were waiting for the school bus this morning. "Look how great they look!" He spread his fingers out to show me. Smooth, healthy, blemish-free hands "except where I nicked myself with my model knife", he added. I'll tell you why this brought tears to my eyes...
Tuesday 27 September 2011
Yesterday was another difficult day with Ben sending emails at breaktime and lunchtime. In the end he asked me to pick him up, so I did, but I insisted it had a 'caveat' and that would be to spend the afternoon having a brain storming session about what to do next...
Monday 26 September 2011
... and I'm astonished at how identical our experiences are. Virtually every thought that goes through Harriet's head has gone through mine in the last 26+ months. Virtually every ED behaviour exhibited by her daughter, Kitty, was carbon-copied in Ben.
Saturday 24 September 2011
The insomnia is back. The anxiety-fueled sleeplessness that wouldn't go away last year and which started the moment Ben returned to school last September. So far, this term, things hadn't been too bad on that front. But now the insomnia is back and, just like last time, it's all because of school. Also, in the place of last year's and the previous year's regular texts, I'm getting emails from Ben as he sits at a school computer filling in his time during free periods, breaktime and lunch.
Wednesday 21 September 2011
And, yes, we are still doing it. And, yes, it is still doing what it's supposed to do. And yes I am quite a few quid poorer as I've 'traded in' all those yummy scrummy points for cash!
As a freelance advertising copywriter working for countless organisations in very different market places, cramming up on information is second nature. Often I have to get to grips with a client's entire business pretty much instantly in order to write a meaningful website or whatever. Everything from scientific instruments to complicated software platforms... I've crammed up on them all. Likewise it was second nature to cram up on baby and toddler care during Ben's first few years of life. But eating disorders proved to be altogether different...
Tuesday 20 September 2011
That's what some people may be asking if they've read the post below. How come (a) I didn't drag Ben to the GP sooner, when his unusual behaviour and weight loss started to manifest itself and (b) I didn't fight tooth and nail to get him referred right away to CAMHS? How come if an eating disorder is so serious and potentially deadly didn't I do either of these? This is why...
In the world of spiraling rapidly downhill with anorexia, 22 weeks is a heck of a long time. A heck of a lot can happen and the chasm can be a heck of a lot deeper than it was several months before. So, in theory, there's a heck of a lot further to climb back than if the issue had been addressed urgently when we first took Ben to the GP in September 2009. And meanwhile we, who were completely ignorant about anything to do with eating disorders, hadn't a clue what to do or even if we could do anything to prevent our son jet-propelling himself into a physical and emotional hell.
Monday 19 September 2011
Thanks to Ed-Bites for providing a link to this insightful article which talks about the role parents play in helping their child recover from an eating disorder plus the guilt that many parents feel.
This is what Ben's dad said over and over again - and still does on 'bad' days. It's also what I used to say sometimes. "Did I overfeed him as a baby or as a child? Was it my fault he developed an insatiable appetite and got a little bit plump towards the end of his primary school years?" The general consensus of expert opinion is that parents DO NOT 'cause' their child's eating disorder; an eating disorder is far too complex to have such a 'straightforward' single cause. (See what the experts say on this video.)
Sunday 18 September 2011
Ben was a 'screaming baby'. If he didn't have a bottle in his mouth he would scream blue murder. With a bottle in his mouth he was as happy as larry, and he'd take at least 60 minutes to finish each bottle. This meant I had a breather of an hour or so before the incessant screaming would get me down so much I'd shove another bottle in his mouth...
Friday 16 September 2011
One of the first things I did as Ben plummeted downhill into anorexia was to look for support: practical support, emotional support, spiritual support, any support! And, like some people, I was drawn to seeking it in the church despite the fact I hadn't been to church for 25 years or so... But it didn't turn out quite as I expected and one year ago I stopped going. Tonight, however, I've accepted an invitation to be at the launch of community event the church has been working on for some time - and I feel a bit strange about going back...
Thursday 15 September 2011
For the first half year or so of living with the anorexia, I lived a double life. Here at home and with the few people 'in the know' I was living a nightmarish life as the mum of a teenage boy rapidly descending into anorexia and all the frightening behaviours and medical problems that come with it.
Wednesday 14 September 2011
If I was to choose one memory of where I had no idea that Ben was displaying typical signs of someone already hooked by an eating disorder, it would be this one (click here) - from another blog I wrote in the summer of 2009 and reproduced in a post on this blog in May.
As I thought, it's school that's the problem. And, also as I thought, it's the social side of things that's causing the most angst. The main problem is that Ben feels he's being ignored and sidelined. Or if people DO talk to him, then it's only because they "feel sorry" for him. One thing that really got him down the other day was everyone whispering about a party at someone's house this weekend. When Ben asked about it the reply came back "Oh it's way too complicated to explain..." And let's face it, no-one wants to be in a situation where you have to ASK to be invited...
Tuesday 13 September 2011
One week into the academic year and, to be honest, things seem identical to a year ago when everything went pear-shaped on the return to school. Yesterday he was as gloomy as hell; today his mood has reached rock bottom and he won't talk about it. Already he's making excuses to get out of all the activities he planned to get involved in this term. And, predictably, he is isolating himself...
Back in February 2010 we had our first treatment appointment with CAMHS. We were presented with a 'typical eating plan' comprising 3 meals and 3 snacks a day. We were also presented with suggestions of typical foods and quantities. Over the next few weeks I made a note of exactly what Ben ate. I also made notes of his moods / food behaviour which read like this:
Monday 12 September 2011
It's funny how the human memory manages to 'forget' or at least 'blur' many of life's traumatic experiences. It sounds strange but, for some reason, I find it really hard to recall how I really felt - day in, day out - during the Bad Old Eating Disorder Days.
Sunday 11 September 2011
Yesterday I had a chat with Ben about how this first week at school has been. I also weighed him because, if you remember, I agreed that - for the first 3 days back at school - Ben could reduce his calories by 100 a day. Why did I agree to something that may appear as 'colluding' with the eating disorder?
Saturday 10 September 2011
Well everything went much as described. I got my flowers, the New Parents chatted away, the Headmaster gave his usual speech (7th time I've heard it now...) and a lot of free wine was consumed by those that weren't driving. And I wore my 'normal parent' hat all evening. Except when talking to those few people 'in the know', out of hearing of anyone else...
Friday 9 September 2011
Tonight I will act normal. As I help out at the school PTA's Welcome Evening for new parents not one of those parents will have any inkling of what I and my son have been through over the past 26 months. I will chat happily with parents, answering questions like "What year is your son in? Has he enjoyed his 7 years at the school?" just like a normal person. To them, I will just be a normal parent, a normal member of the school PTA, no different from anyone else.
Tuesday 6 September 2011
Remember how it was on your child's first day at 'big school'? A small child in an over-large, brand new school uniform. New shoes shiny and unscuffed. Sports bag with crisp folded sports kit, sports shoes without a micro-gram of mud. En route to a kind of Utopia High School where everyone is friendly and bright, excelling at sport and great at music. And in this Utopian setting your child would thrive on every level. It may only be Day One but in your imagination he's already Head Boy - a handsome, strapping 18 year old admired and respected by staff and pupils alike, a star of the rugby team and an ace at cricket. He'll emerge with a string of A star qualifications, be snapped up by the best universities and come out with a brilliant degree before embarking on a fabulous career and family life...
Monday 5 September 2011
This morning I drove my sister to a physio appointment at the local health club / gym where I used to be a member in my past life as a 'normal' person. Sitting in the Starbucks coffee shop in the foyer I watched people go by, gym bags in hand. Some were new faces, others I recognised by sight. It was a strangely unsettling reminder of my past life 'before all this stuff kicked off'...
Thanks to F.E.A.S.T. for this video interview with leading eating disorder experts from across the world. F.E.A.S.T.'s international conference in November 2011 is calling for "an end to the era of shame and blame: parents do not cause eating disorders and patients do not choose to be ill. Evidence-based treatment and family involvement save lives".
Sunday 4 September 2011
Saturday 3 September 2011
The week got progressively worse as Ben's mood deteriorated. It was a combination of school lurking on the horizon and resisting the need to exercise compulsively. Some days were OK, but ED was still there - like on Thursday at Chatsworth House cafe where he suggested 'sharing' our lunch and 'donated' some of his '"full fat" cheese to me.
Monday 29 August 2011
In the run up to the new school term we are fighting the exercise compulsions because that's the main thing that, according to Ben, keeps him awake at night on school days. Why? Because all night long he's trying to work out how he can fit enough exercise into his day while 'sitting around at school doing nothing' (as he puts it). Not only is that incredibly stress-inducing but he is well aware that it isn't 'normal', that it belongs to the eating disorder and that it has to go from his life.
Friday 26 August 2011
The pressure of school on the horizon prompted Ben to explain in detail why school = pressure because it reduces the opportunity to exercise. And reduced opportunity to exercise still = the need to consume less calories in order not to 'balloon out'. So he decided to fill me in on the history of why he had an eating disorder LONG before anyone realised it...
Every summer a teenagers' residential Weight Loss Camp hires the school premises - and yesterday, en route to a meeting with his tutor to talk about his AS exam re-sits etc, and before I could stop him, Ben ended up striding right through the middle of it. It was a strange and unsettling experience. Here was a teenager who was desperately trying to put on weight heading right through a crowd of teenagers who were desperately trying to lose it.
Thursday 25 August 2011
Even though Ben wasn't at his best for his AS Level exams in June (insomnia), he managed to sit them with his peers without any problem at all. The previous year (GCSEs) it was a different story (although, thankfully, no insomnia which didn't kick in until the following term). Also, with the start of sixth form a year ago, he made the decision to go back to school full time. It wasn't a success. Ben pushed himself too hard and quickly reached 'burn out' stage. By half term we'd decided to take him out of school again and for him to go in as and when he felt he could.
Monday 22 August 2011
So we're faced with this decision: would it be easier, less stressful and more enjoyable for Ben if he went back a year at school and re-did his Lower Sixth year? Why? Because last year he missed so much school (at least 60%) that it messed up his AS Level exams (we got the results last week). So it means having to so several re-sits alongside the pressure of studying for the A Levels themselves AND applying for university, etc.
Saturday 20 August 2011
... which is the sheer number of food 'challenges' Ben did while on our mini-break in Somerset and Devon. Included in the blitz on 'fear foods' was: a Mars Bar, 2 packets of high calorie / fat crisps, a Solero lolly, M&S 'ultimate' sandwich and a meal from Pizza Express. Plus, apart from the blip in Bath, everything was very relaxed - a complete contrast to last time I stayed in that apartment overlooking the sea.
"There's nothing I want on the menu", said Ben in the old familiar way... But there was no way I was getting up and leaving. The menu was fine... stuff Ben normally eats at home... and the Georgian veggie restaurant in Bath came highly recommended.
Ben and I have just come back from 5 days in the South West. Much of the time everything was fine with Ben overcoming scores of challenges. ED, the Anorexia 'Demon', reared its ugly head a couple of times: once in Tescos when choosing a 'meal deal' for lunch and once, more seriously, in Bath which I will talk about later on when I've finished unpacking and all the other stuff I need to do! But at the end of the day, we (hopefully) kicked ED into touch.
Sunday 14 August 2011
Thanks for your comments on my last entry, Katie, you always explain things so well. Your experience is one of the reasons why I know it is essential to keep going until Ben is fully weight restored and never to settle for partial recovery as a second-best.
Friday 12 August 2011
I do wish our treatment team wouldn't tell Ben that it's OK to aim for a sub-optimum final weight because this makes it really difficult if not impossible for me to guide him towards a proper weight normalisation. They should watch this video produced for Janet Treasure which focuses on why it's so important to get properly weight restored and not settle for partial weight restoration in order to attain full brain healing, have the chance of a life free of anorexic thinking and minimise the risk of relapse.
Tuesday 9 August 2011
If I appeared a bit aggressive or defensive yesterday, it was to address two comments I received this weekend about (1) my motives for writing this blog, and (2) my motives for working with Ben towards FULL recovery (i.e. not 'almost full' recovery).Yesterday I covered (1) and will cover (2) very soon. But first we're off out to the countryside to take advantage of the only sunny day this week. Watch this space...
Monday 8 August 2011
Some of my contacts have written books on the subject; others write blogs or get into the media. But the ONLY reason that any of us 'goes public' about our experiences as parents of teenagers with eating disorders is to do our small bit to help others facing a similar situation. We are neither seeking to exploit our children's eating disorders nor trying to draw attention to ourselves. We are just acutely aware of how precious little information and help there was for us when we started our own nightmarish journeys into the world of anorexia. Even if we help just one desperate parent to find hope then we've done our job.
Saturday 6 August 2011
Friday 5 August 2011
Time was (in the 'high anorexia' days) when a visit to Waitrose would take AGES. It would take anorexic Ben ages and ages and ages to choose things, picking stuff up and putting it down, getting it as far as the trolley and even as far as the checkout only to back-track and put stuff back on the shelf and start again... And, of course, the first thing he'd look for would be the dreaded fat content and calories. Today, however, we zoomed around.
Thursday 4 August 2011
It's 18 months or so since I first launched my website: Anorexiaboy.co.uk So I decided it could do with a bit of updating. Uninspired by the layout, I also decided to completely change the look. Result? I've spent the last couple of days re-vamping everything on the website. It's not complete and is a bit of a 'work in progress', but I think you'll get the general idea. Let me know what you think or what you would change. Also, let me know if you'd like me to add any useful links to the links page.
Wednesday 3 August 2011
Last summer I found it impossible to listen to the usual chilled summer music on my CD player. For one thing I most definitely wasn't chilled and, another, suddenly I found that lyrics had a whole new meaning for me especially if they were about "missing" someone or whatever. Because I missed the real, non-ED Ben like crazy and - at the time - I had no idea if we would be getting him back...
But this summer the CD player is back on again and I'm able to enjoy all those songs I couldn't listen to last year.
But this summer the CD player is back on again and I'm able to enjoy all those songs I couldn't listen to last year.
Tuesday 2 August 2011
Ben's been cooking some scrumptuous evening meals for us recently. That is, until tonight's meal which turned out dry and 'average'. So he took our plates back into the kitchen to make a few adjustments, leaving me at the dinner table for 5 minutes. Suddenly I was hit by a painful and dramatic flashback to how it would have been 12 months ago...
One of the environmental factors that exacerbated our son's anorexia was the desire for a 'six pack' and the kind of rock-hard muscular body that would normally require working out 24/7/365. Although Ben enjoyed some exercise and was very sporty, he insists he was essentially lazy. So he found a 'clever' way of achieving his goal: by restricting his food intake.
Friday 29 July 2011
Ben and I spent a highly insightful hour sitting at the dinner table last night. One of the topics we covered was the starving children of Somalia and how, back at the start of the anorexia, I could never get my head round why children in affluent Western countries 'chose' to starve themselves whereas many Third World children have no choice.
Tuesday 26 July 2011
Overcoming 'fear foods' and facing other challenges (e.g. socialising, resisting compulsive exercise, etc) used to be a real sticking point - until we introduced the Recovery Contract.
Monday 25 July 2011
Now that our successful week's holiday is over and Ben has finally ordered his new Xbox (putting some of the 'points money' towards it) it's back to reality and working on all those outstanding eating disorder bits and pieces that still remain.
Saturday 23 July 2011
Back home - and I am very pleased about how the week has gone. The eating disorder was virtually absent; the only way you might guess something wasn't quite normal was that Ben was counting calories and I was keeping a discreetly watchful eye on things. Also, Ben is still quite thin. But he IS 1kg heavier than when I last weighed him 2 weeks ago. Compare this to last year when we returned from France having taken CAMHS' advice and "ignored" the eating disorder and "taken a holiday" from calorie counting. Ha ha ha ha, I KNEW I was right all along when my gut instinct screamed that was completely the wrong route to take...
Tuesday 19 July 2011
Last summer, in France and ESPECIALLY on a 'get away from ED' break I took to Somerset in August, I was so incredibly stressed and anxious my whole body actually physically 'seized up' at one point (unhelpfully when I was driving down the motorway...) This summer's mini-holiday / vacation in the Peak District couldn't be a starker contrast I am thrilled to say.
Sunday 17 July 2011
It's Sunday evening and it's been raining virtually all day here in the beautiful Staffordshire Peak District which means trying to keep everyone occupied all day ('everyone' includes husband who has been able to come here for the weekend but goes home tomorrow). But, so far, ED has kept a reasonably low profile.
Friday 15 July 2011
Okay, so we haven't made it to France this year and, anyway, last year I vowed I'd NEVER go on holiday / vacation again until the eating disorder was well and truly GONE. But, having said this, Ben and I are about to embark on a few days away in a country cottage in the Peak District. Unfortunately husband can't come due to work pressures, so he's staying at home.
Thursday 14 July 2011
Yesterday saw us back at Sheffield University, this time looking at another department with me taking Ben on an extensive walking tour of my former favourite haunts as a student in that lovely, friendly city. ED came too, however. Okay he was a faint shadow of his former bullying self, but he was there, tagging along with us throughout the day...
Monday 11 July 2011
I know I keep going on about how much of a lifesaver the Around The Dinner Table parents' forum has been for me over the past 18 months, but it's true. I've met so many supportive people through it, from across the globe, and made a number of very good friends here in the UK.
Sunday 10 July 2011
If I had £10 for every time these words have been mentioned over the last 20 months of eating disorder treatment, I'd be rich! I believe our slow progress on the weight gain front, indeed the lack of progress on the weight gain front, is entirely due to our treatment team's insistence on letting Ben "make his own choices". All the modern evidence points towards this as being the anorexia treatment equivalent of being prescribed leeches "to draw out ill humors from the blood"...
Thursday 7 July 2011
He's still having serious problems integrating with his friends and finds it all to easy to flee from the problem. Having thrown all the ideas and solutions I can think of into the pot, I really am at a loss for what to suggest next. So I've posted a new thread on the really brilliant Around The Dinner Table Forum to see what the other Mums of teenagers with eating disorders think. Read it here>>
Tuesday 5 July 2011
Monday 4 July 2011
I'm worried that Ben isn't socialising much recently, if at all. Socialising was always a sticky issue with the eating disorder and, after a period of improvement, I worry we've gone backwards on this count. The summer holidays (vacation) starts on Friday and I'm concerned that Ben will spend much of it alone, despite prompts from us to 'find things to do' over the summer...
Sunday 3 July 2011
Yesterday was the school Prize Day followed by the house Sports Day in the afternoon. Last year, at the height of Ben's anorexia, we didn't go to either. But this year we went to both - and Ben was helping out at the Sports Day, so I spent the afternoon sitting in the sun on the grassy bank overlooking the playing fields, just as I'd done 2 years ago when Ben was competing the 1500m race. And just as I'd done 2 years ago I got talking to the mum of the boy who Ben had beaten in that race. "Haven't seen you around for AGES!!" she exclaimed, reminding me of how she and I used to gossip merrily away during our sons' rugby matches every Saturday morning.
Friday 1 July 2011
All are currently being cooked by Ben - a bizarre combination of smells, but no doubt delicious when they're all finished! In the 'high anorexia days' he wouldn't have eaten ANY of these things. There are still 'no go' foods on his list, however...
Thursday 30 June 2011
Thank goodness I can trust Ben to not only prepare his own food but also prepare and cook our evening meal, exactly as per the recipe with nothing 'omitted' and to successfully and accurately count his calories BECAUSE all hell has broken loose now my 89 year old Dad has finally been discharged from hospital. Aaaarrrgggghhh!
Monday 27 June 2011
Helen is one of the many excellent friends I've made through the ATDT Forum (for parents of children and teenagers with eating disorders). Although I've never met her 'in the flesh', we've talked over the phone and internet many, many times, comparing notes on where our children are on the road to recovery from anorexia. And today someone pointed out this article where Helen and her daughter talk about their experience at WalesOnline.co.uk
In the last blog entry I alluded to the surreal way we sat on the beach in France last summer. All around us families were going about a normal, enjoyable, fun day at the beach while we were in some kind of invisible, nightmarish 'bubble', cut off from the rest. This was how it was for us for an entire year, reaching a nightmarish height last summer.
Sunday 26 June 2011
Okay, let's not beat around the bush. I admit it. Meeting an old gym friend today I felt a twinge of envy as she talked about her forthoming summer vacation in France - and it's the first time for donkeys' years that we haven't been to France, too. Why no French holiday? A combination of vastly reduced income and increased cost of living coupled with a reluctance to book another holiday after last July's disastrous trip to the Cognac region with Ed, the Eating Disorder Demon, in tow.
Friday 24 June 2011
Actually he had no choice because I didn't have a car yesterday, so I couldn't have collected him early. When he got home he was fine. He'd managed his lunch (even if half of it was from Sainsbury's) and done a load of socialising and getting involved in activities. Also, he made up for any missing calories later in the evening. So a successful food day, too, at school. School dinners use to be one of my major worries!
Thursday 23 June 2011
I wrote this on 12th June 2010 when Ben's weight was 58.9kg (today it is 55.5, 3kg lower). This was the period where Ben began to refuse to do the Eating Plan and I wasn't supported in continuing with it. Also, we all thought he was consuming 2400-2500 calories a day when in fact he was eating far less. That's because managing your own intake is a fantastic way to eat less while appearing to eat more (food in trash bin, 'guestimating' weights and portion sizes, etc etc). Passing over the food control to Ben started with his breakfast, hence the first line of this note...
I've just found a copy of a note I sent to the psychiatrist one year ago following Ben's 'melt-down'...
Last night Ben had another serious breakdown similar to the 'roof' incident a couple of weeks ago. Yet again he went into that 'manic' state of mind where he has 'no emotions' and starts to talk in a deeper, slower, almost drugged kind of way, saying there's no reason to go on, his life is a total waste of time, etc.
Truly, I feel the anger I felt in June 2010 when...
Wednesday 22 June 2011
One year ago today on June 22nd 1910 things weren't too good. There's also something about the sentiment of the following that's curiously familiar (where I start talking about CAMHS and gritted teeth)... I posted this thread on the ATDT Forum the next day. This is what it said...
Tuesday 21 June 2011
Accidentally clicking onto my old local newspaper blog I found this entry following our spring half term vacation in Somerset. Read it and realise that, yes, the storm clouds were seriously gathering... and no-one realised!!! (The eating disorder began to manifest itself more clearly a couple of months later...) Just look what I've written near the end re. 'anorexic'! Aaarrrrggghhh!!!
I wanted to know what messages Ben has taken home from our recent treatment sessions as regards weight gain / weight restoration. With this came lots of positive stuff about the other ways the team has been supporting us over the past 16 months which, I agree, they have. This is reassuring because I wasn't entirely convinced our sessions were doing him any good as he always seems depressed, before, during and afterwards. However he does believe the team is happy for him to settle at a final weight which is "massively lower than what you and dad would like me to weigh".
As you know Ben has come on leaps and bounds on the behaviours / mood front over the past 8 months. He is also managing lots of 'fear foods' which used to freak him out. But I can't help thinking that the treatment has been a bit odd... In fact it's difficult to pinpoint exactly what form the treatment takes. Yes, our 2-person treatment team is brilliant at listening and asking questions. They're also great 'fire-fighters' in a crisis and very nice people, too. The psychiatrist's assistant in particular is very good at taking notes. At first I thought the purpose of this copious note taking was so they could go away, have a meeting and formulate a strategic plan of action. But 16 months on she's still taking notes. We've had loads of promises about the need to focus on this, that and the other, but - unless these things are like some kind of hidden machine working away in the background - I still haven't a clue what the Big Plan is...
Sunday 19 June 2011
"OK, so let's do yesterday's points, Ben. First, I'm deducting 4 points for unacceptable behaviour last night. Also, I paid £10 for a pizza you didn't eat so I'm afraid that will have to come out of your points, too, because - as you know - the contract points are about moving us forwards and I believe last night was a step backwards." "No, it was nothing to do with anorexia," insisted Ben...
After 8+ months of relatively problem-free eating out, who should come along to our Father's Day Eve meal at Pizza Express last night but ED... and it wasn't unlike when it made a similar unwanted and distressing appearance at a country pub back in the winter and at Pizza Express the previous winter. And I have yet to work out how to deal with it...
Friday 17 June 2011
Well, he managed to do it all and he had his first school lunch for ages. However he chose to sit alone and went for Mediterranean veg "oozing with oil so I left some of it", pitta bread and fruit. Hmn. "I also had a problem sitting around all day doing nothing," he said. "And my performance at the contest wasn't my best to say the least." Actually I thought it was good and Ben seemed ultra-relaxed, but then he always does when he's up on stage singing.
I have no idea how I managed to carry on 'business as usual' with my freelance copywriting during Ben's rapid descent into anorexia, but I did... in a way... until something just had to give, and it did... and I think it has again...
Thursday 16 June 2011
Ben is a fantastic singer along the lines of Michael Buble and the last couple of years he's taken part in the school inter-house talent contest in aid of charity. In 2009 he came first and last year he came second which was amazing considering he hadn't been officially in school since the spring and found it really hard, if not impossible, to be amongst his peers. But there he was, standing up in front of the audience, singing away... And today, if he can manage to stay in school long enough, it's the 2011 Contest and I'm taking my mum along to watch.
Wednesday 15 June 2011
Until my mid 30s I vowed never to marry and definitely never to have kids. I was an independent 'career woman'. If that sounds impressive, it wasn't. I had a pretty checkered past with hideous teenage years where I messed up my school exams, ended up on a dead-end college course, changed friends, boyfriends, apartments and jobs in almost indecent quick succession and went through a particularly 'wild phase' in my 20s. By the time I was 30 I was a decade behind my more 'sensible' peers on every single front: maturity, career, relationships and kids. Then at 34 I got married and by 35 I was expecting Ben...
Tuesday 14 June 2011
Someone from the church I used to go to emailed to invite me to upload a photo onto their new website in answer to the question: "What matters?" This is the photo I would like to upload, but probably shouldn't as it's far too personal and the 'uninitiated', as they say, just wouldn't 'get it' - because, as another boy who has anorexia who messaged me today said, people find it hard to 'get' anorexia in boys. Why this photo sums up "What matters?" to me is...
"Unless you hear otherwise, pick me up at lunchtime," he said this morning. "Any reason why?" I asked. "We don't have any lessons in the afternoon today." "Really?" "Well only RS and then we have two frees." "But you know," I responded, "it's not just about lessons, it's about all the other things that add up to being in school: social stuff, etc..." Anyway, we'll see what happens.
Monday 13 June 2011
... that I got a phone call from Ben at break time saying: "Can you come and pick me up at lunchtime?" So much for doing full school days from today onwards, but there you go... I knew he'd had a sleepless night but I wanted to check if there was anything else that was holding him back from doing a whole day - so when I picked him up, I asked him.
Last summer, Ed the anorexia 'demon', stowed away on our holiday and ruined it. So this year, so far, we hadn't booked anything. Yesterday I tested the water by booking a week in a cottage in the Peak District in July on condition that, this time, we stick to the eating plan / calories. Last year, CAMHS encouraged us to "take a holiday" from calorie-counting and "just eat / act normally".
Sunday 12 June 2011
One thing you quickly learn as the parent of a teenager with anorexia or another eating disorder is that the most obvious and logical solutions to problems aren't workable. For one thing, at what I call the High Anorexia stages, anorexia changes the mindset from normal logical to totally illogical and irrational. Anorexics will swear that black is white - and believe it. Logic tells you this is not true and never will be - so what do you do? That's just one of the 'impossible' problems you regularly get with anorexia...
Saturday 11 June 2011
The great thing about the anorexia recovery contract is that it can be updated whenever you need to focus on a particular problem area. I always ensure this is seen as a mutual thing and never seen as me, the parent, inflicting 'my will' on Ben. This is how we've agreed to update the contract - and why...
Friday 10 June 2011
It was just the psych at CAMHS today and I was able to clear things up about the weight restoration / normalisation levels. Contrary to what the assistant implied the other week, yes Ben does need to be a higher weight and BMI and, at this stage in the anorexia treatment, we'll be working on carefully juggling both the weight gain and cognitive stuff. So that's good news. The bad news is that...
Thursday 9 June 2011
I've just relocated the huge Ben-and-ED file I started back in 2010. In it is our first Eating Plan with comments on the reverse about his moods and behaviours. Here are some extracts (which show how far he has come on since then, thank God!!)
Thanks a million to C. on the ATDT Forum for providing a link to the following chart from the Maudsley Clinic with my pink arrows and markings so you can see what I mean. (Yes I know I'm getting boring harping on about this topic, but I will fight tooth and nail to get him to a proper restored weight, probably somewhere between 62kg and 65kg, if I was to pick a couple of 'tramline' figures out of the ether...)
Updating this weight chart says it all. It starts with our first CAMHS session in Feb 2010, misses a few months between Aug 2010 and March 2011 (I don't have the data), but you get an idea of how he's only HALF A KILO heavier now than he was last August and the same weight as he was at our second CAMHS appointment in Feb 2010. Oh, and he's taller now. No comment...
Wednesday 8 June 2011
Interesting looking back at my ATDT threads from 14 months ago (29th May 2010) when, it appears from the chart I made back then, Ben's weight had increased to 59.3kg after the rapid initial weight gain (which was to go pear-shaped from the end of May onwards as Ben's weight plummeted off the bottom of my chart).
At his last scales session on 27th May 2011 Ben weighed 57kg which is 2+kg less than he weighed then. Here's an edit of what I wrote back then which, from what CAMHS were saying about the weight, rings some spookily topical bells...
At his last scales session on 27th May 2011 Ben weighed 57kg which is 2+kg less than he weighed then. Here's an edit of what I wrote back then which, from what CAMHS were saying about the weight, rings some spookily topical bells...
We're into Week 12 of the Recovery Contract and it's still doing its job - and yesterday saw a massive 7 points awarded including the first Full Day at School (3 points) (yes I know he had to be there because he had 2 exams, but he still managed it perfectly OK). You see, one of the main issues about being in school for a full day is that ED, the Eating Disorder, taunts him for "sitting around doing nothing all day" when he "could be exercising".
Tuesday 7 June 2011
Get set for the Top 20 Biggest Changes in my life over the past 9 months as the mom of a teenager successfully recovering from anorexia (in no particular order, as they're all wonderful!):
As you know, Ben has been doing mornings-only at school since October. Today is the last AS Level exam day and he has two exams, one in the morning and the other in the afternoon which will mean him having to be in school all day. Not only will this mean quite a bit of free time between the end of the am and beginning of the pm exam (having to socialise), but it will also mean returning to SCHOOL DINNERS because, at Ben's school, pupils don't take pack lunches.
Monday 6 June 2011
Just looking back to where we were one year ago and I notice it was the "roof" episode... Ben was at his lowest, mood-wise. He couldn't face school or his friends. He was about to sit his GCSE exams alone so he wouldn't freak out or freak his peers out. He was resisting recovery (to say the least) and his eating disorder was RAGING and so was he...
I'm getting too bogged down with numbers and have already received a friendly "ticking off" from one of my dear friends on the ATDT Forum (who I can always rely on to "call a spade a spade" as we say up North; in fact I might just award her Honorary Northerner Status!) What I should be looking at primarily are the massive changes and improvements in Ben and the fact that his behaviours and thinking have literally transformed over the past year.
Saturday 4 June 2011
We had a meeting with the pscyh yesterday. She is incredibly skilled at being diplomatic and subtle - and also digging us out of a hole without actually appearing to be doing so. I'm not saying she was 100% for us and contradicting the Assistant from last week, but she took elements of each, explained them in more detail to Ben and worked with us on coming up with a workable solution which Ben was able to handle without freaking out.
Friday 3 June 2011
Despite feeling grotty and losing his appetite, I have been incredibly impressed by the way Ben is ploughing on with the usual eating regime. So much so that I gave him extra 'points' on our Contract yesterday. So far he hasn't been sick, etc so what's going in is staying there. Fingers crossed things won't get worse...
Thursday 2 June 2011
It's just what we could do without in our household... H has got a tummy bug and I'm dreading Ben catching it. This is one of the reasons why it's SO not OK for Ben to remain at his current weight without going any higher. I know from having talked to other ED parents, all it can take is just one sickness and diarrhea bug and - ping! - their child is back in the land of the unhealthy weight range or even lower.
It's "Reason 1" of the very excellent Dr Sarah Ravin's article which is relevant to our current situation plus "Reason 6", followed by "Reason 7". See "Reason 1" in more detail here - or click on the link>>
Tuesday 31 May 2011
Thank you to my dear friend, Mamame from the ATDT Forum and FEAST, for this link to Dr Sarah Ravin's latest article. (She is a really clued-up US expert on eating disorders.) The content is particularly relevant to us at the moment as it becomes increasingly clear that at least one half of our treatment team is, unfortunately, living in the past, adhering to outdated theories rather than modern evidence-based eating disorders treatment.
Sunday 29 May 2011
Seeing Ben and H go off cycling today spoke volumes about where Ben is in the weight recovery stakes. He may be within the first 6% centile of boys of his age, height, etc, but in my very strong opinion he is NOT Weight Restored...
Saturday 28 May 2011
Mixed messages at our CAMHS session yesterday with the psych's assistant. Some of it was absolutely OK, but my gut instinct wasn't too sure about other bits - unless it was the assistant's clever way of making Ben react in a positive way to yet more weight gain... It might be... so the jury, as they say, is out on that... But the Very Good News is that, 10 weeks into the Contract, and over the past 8 weeks, Ben has averaged out at a weekly weight gain of 0.4kg which is almost what the NICE Guidelines recommend. Considering that for MONTHS, he'd lost and then maintained (after an initial fast gain right at the start of our CAMHS treatment last spring), I think that's well worth celebrating!
Friday 27 May 2011
The prices of Ben's favourite Warhammer models go up tomorrow, so yesterday he wanted to do a 'bulk buy' online. He didn't have enough cash so he asked for an 'advance' on the Contract points money. So I thought about it and said "OK, yes, in principle, but it would have to be a 'conditional' loan"...
Thursday 26 May 2011
Thanks for the lovely feedback re. my "cry for help" the other day! Ben offered to clean the house yesterday afternoon in exchange for some new shoes he wanted, so that's sorted for a while. My sis has been visiting my Dad and is going again tonight, so I won't need to go until tomorrow. As you'll see from my other entry, my wonderful friend S has been brilliant; her cups of tea are positively soothing. And I had a word with Ben about his behaviour the other night...
Wednesday 25 May 2011
Laura Collins, the founder of FEAST and its ATDT forum has just recorded a TV interview talking about FEAST and also explaining how parents / carers are central to helping their teenagers recover from this dangerous but treatable illness. See her here>> And read her own comments on her blog here>> It is excellent and well worth watching if you're a parent or carer of a teenager with anorexia or another eating disorder.
I have a friend who I will call Sarah who I briefly mentioned in the last entry. Sarah has Secondary Breast Cancer which has spread to her lungs, spine and liver. She is currently having horrible intravenous Chemo which makes her feel pretty naff most of the time and all her lovely hair has fallen out. Yet Sarah has a cunning way of getting you to come clean with what's bugging you - and also of phoning you when you could really use a good chat with a friend. She is a saint.
You know when you pour something into a jar and you can't get the lid on because there's just too much in it? Well, that's my brain at the moment and I appear to have reached yet another "burn-out". However, as we parents know, it's not like a stressful job where you can just walk out and never come back; we're in this for the long-haul, whether we like it or not and whether we can handle it or not. Basically we have no choice. There are 6 things going on at the moment which are causing a serious power surge in my brain -
Monday 23 May 2011
Today I was thinking back nostalgically to our family holidays before the anorexia muscled its way into our lives. Anorexia wasn't even on our radar; that's something that happened to girls, not boys. Not in a million years of my wildest nightmares could I have dreamed that my wonderful teenage son was developing anorexia nervosa. Maybe if he'd have been a girl, I'd have been alerted sooner. But I thought it might help other worried parents of boys if I listed the warning signs that should have set the alarm bells ringing that all was not right with our son...
Sunday 22 May 2011
Back in 2009 I used to write a regular blog for a local newspaper and I've just had a quick look back on my entries for summer 2009 to see if they shed any light on the early signs of Ben's eating disorder. Here's one I found about his new-found passion for cooking - and there are SO MANY CLUES dotted throughout it that it makes me want to scream to myself "Why didn't the alarm bells start ringing?!!!!!!" Instead, I was simply inspired to write an 'amusing' blog...
Watching a Kentucky Fried Chicken ad on the telly yesterday reminded me of one of the very early indicators that all was not right with our son, back in the summer of 2009. It was early August and H, Ben, Ben's friend and me had gone down to London for my sister-in-law's birthday party - a lively drinks and buffet party at her home. I was vaguely aware that Ben wasn't eating much - just picking at the buffet now and again, and being very selective with what he ate.
Saturday 21 May 2011
Thank you, Giant Fossilized Armadillo, for your comment on my last entry. (GFA has been part of our network of mums and recovered eating disorder patients that have been tremendous help over the past year or so.) And the first thing that came to mind when I read her comment on the cognitive healing which comes with being Weight Restored at a proper, healthy weight was this...
A few months ago it was the table; yesterday it was the heavy arm chair which Ben picked up and threw across the room at our CAMHS session before punching the wall and walking out. Thankfully he eventually returned and we were able to resume our session. Then, to rub salt into the wound, we returned to my car to find it had been "keyed" all the way along the side resulting in what will be around £150-worth of work to put right. So not a good afternoon, all in all...
Thursday 19 May 2011
I get so frustrated that, at this advanced stage in recovery, Ben still stresses about putting on weight. Today I asked him if we could work on doing full days at school once the AS Level exams are over and he starts A2 course work towards the end of this term. "Not if I find I've put on loads of weight next Friday", he said.
Monday 16 May 2011
Because one of the other mums on the wonderful ATDT Forum was responsible for inspiring our (so far) successful Recovery Contract, I posted an update on the Forum yesterday to tell everyone how we are doing. Read it here>>
Inspired by a thread on the positively saintly ATDT forum, I took a quick look back at where we were exactly one year ago today. Here's my (edited) thread for Monday 16th May 2010 plus my responses to the various bits of excellent advice (read the original thread here>>):
Sunday 15 May 2011
This time last year Ben sat his GCSEs. He'd been away from school since March, unable to face it at all. The school arranged for him to sit his exams in a separate room away from the main examination hall. And before each exam he registered in the school Medical Centre rather than the form room. In other words, everything was carefully managed so Ben didn't have to meet any of his peers at what was an extremely stressful time for all of them. Being with his peers would have stressed out Ben and could easily have resulted in him walking out and going AWOL - or just freaking out during the exam which, in turn, would have upset everyone else. I'd drive Ben to school because the eating disorder fueled social anxieties prevented him from getting the school bus and we'd deliberately arrive at school after the other pupils had gone to their class rooms. That's how bad things were...
Funny how for me it was a cause of celebration whereas for him it was a cause of shock... Thankfully he began to accept it as OK after a while as I reminded him that we're looking at gradual weight gain over the LONG TERM and when we pan out and look at the past month the weight gain is actually very manageable. Mind you, I know it's going to be difficult if he puts on a similar amount next time he's weighed. I don't believe he would be able to handle that at this stage unfortunately... UNLESS we pan out to the long term again and the rational side of his mind accepts that as being OK. As any parent of an eating disorder teenager will know, rational thinking goes totally AWOL for quite a few months as the condition gets worse. But the Good News is that it gradually comes back. This is why I am keeping a chart to show the GRADUAL increase over the long term to avoid potential knee-jerk reactions.
Friday 13 May 2011
Blogger is finally back in action after being offline every time I clicked on it... Meanwhile what a week's it been what with the weekend (already alluded to) and my dad deteriorating daily until he was hospitalised yesterday (and still continues to deteriorate...) Meanwhile Ben has cooked 3 evening meals VERY SUCCESSFULLY because I've been too busy sorting out my parents. We've had sausage, butter bean and veg casserole; chorizo and chicken jambalaya with pitta breads; and creamy home-baked ham with leak and mushroom spaghetti - all without "slimming them down" in any way. And today Ben has put on 1.5kg in weight at his fortnightly weighing session...
Tuesday 10 May 2011
Probably at the end and work backwards... Starting with my 84 year old mum who's just called to say my elderly Dad is "playing up" again and she wants to come round to let off steam (he had a seizure in November resulting in delirium; to all intents and purposes he seemed to have made a reasonable recovery but now he's snapped back into old behaviours and making things impossible for her...) Preceded by my back agony which has been hellish all weekend... Preceded by the fact my M-in-Law wouldn't even look at me, let alone talk to me by the funeral yesterday. Why? Because I'd deliberately kept a low profile all weekend, much of the time keeping Ben (and as a result H) away from the chaotic emotional hot-house that was my sis-in-law's house where everyone else was staying because the whole situation was having an horrendous "trigger" effect on Ben's eating disorder behaviours and risked messing up the entire weekend for everyone - yet I think my in-laws probably took this as me being rude and keeping Ben and H at arm's length on what was a very important family weekend. A textbook case of not being able to please all of the people all of the time and ending up pleasing none of the people all of the time...
Friday 6 May 2011
So tomorrow we're off to London to my H's crazy family for the funeral - and a weekend of haphazard eating and goodness-only-knows-what-else awaits. One thing is certain, it's not going to be a smooth ride as there's always some kind of Extreme Trauma going on with someone in the family which results in the whole family talking about nothing else all weekend. This is a family of High Drama - from the wayward uncle who ran away with the gypsies when he was a boy to various mental health problems (the genes associated with which, I often wonder, may be the cause of our own problems over the last 20 months or so...) - not to mention a host of other dramas which I'd really rather not go into here... Plus all the heightened emotions that a family funeral brings... And meanwhile I have Ben and his eating disorder to worry about... No-one could accuse us of leading a boring, uneventful life... but I sometimes wish we did...
Sometimes I wonder if our CAMHS visits are just opening up a can of worms that is better left on the shelf... What I mean is... Ben and I are pretty close. These days he's happy to talk to me about pretty much anything to do with his eating disorder and anything else, basically because he knows I "get it". We're also very similar people. I know the current issues as regards his recovery and everything is going reasonably well, despite the odd blip which is only normal in what is bound to be a bumpy ride to a certain extent. Basically, I believe I know pretty much what is going on inside his head these days...
Tuesday 3 May 2011
I was having a chat with Ben today about how, in our experience, eating disorders and other mental illnesses seem to affect the nicest and most sensitive of teenagers rather than 'the idiots' (as we call them) who just go out and get drunk. A massive over-generalisation no doubt, but it's our opinion anyway...
I've been mulling over the problem of H's family's haphazard attitude to mealtimes coupled with the problem of not being at home with our usual Eating Plan this weekend and this is the Plan I propose to put forward to Ben:
Monday 2 May 2011
Bit of a busy week what with all the Easter bank holidays, then the Royal Wedding and bank holidays. During this time I've managed to injure my hip somehow and am in AGONY when sitting down and standing up (OK walking or climbing stairs, though...) so that's put a damper on things. Been busy with work, too, which isn't easy when you have a short week due to bank hols and are in agony. Then, over the Easter weekend, husband's grandad passed away so we're all off to London next weekend for the funeral and meanwhile the family fights over what they should have at the funeral, etc. Me, I keep well out of it. Thankfully, everything is still going fine with Ben's recovery and he's back at school after the Easter break. AND I insisted on a permanent increase in daily calories at CAMHS on Wednesday when it was found that Ben had LOST WEIGHT by almost the amount he put on last month. Thus far he has kept to this increase. But there may be a spanner in the works when we go to London at the weekend...
Friday 22 April 2011
Thankfully it was only a "blip" the other day and Ben is now back to his usual, on-the-road-to-recovery self after deciding to talk about it in depth to me yesterday, which was good. And he managed to go over calories by an extra 200 yesterday. But I'd like to get him weighed when we go to CAMHS on Wednesday afternoon to see how things are panning out.
Wednesday 20 April 2011
I get the impression he's resisting calories again after agreeing to increase them at CAHMS (because he'd maintained over the last fortnight we agreed he'd go OVER the required calories as many times as possible). He went over calories on Saturday by 200 but hasn't done so on any other day since then, despite coaxing from me... And over the last 48 hours he's been very "tetchy". Today he flew off the handle a couple of times and ended up in tears after shouting out a bit like he used to do... the kind of shouting that makes me jump out of my skin...
Saturday 16 April 2011
As you know, we've changed the weekly weigh-ins to fortnightly so Ben doesn't become so obsessed with numbers. Interestingly, the last 2 weeks have been a virtual carbon copy of the previous 2 weeks, food-wise. If anything, Ben has eaten many more 'challenge' foods like cake, chocolate, ice cream, chocolate brownies, etc. Last time he put on 0.9kg but yesterday his weight was stable, with no change. So that equals 0.9kg across the whole month, around half the weight gain recommended by NICE, but never mind. As a result we've made some little adjustments to the Recovery Contract.
Wednesday 13 April 2011
On Saturday we acquired a 12 month old cat (a rescued cat from the Cats Protection League) who has been settling into our household extremely well over the last few days. The great thing is that it's taken a lot of the emphasis off the eating disorder, enabling us to be pretty close to 'normal' for the time being. Cats are also soooo relaxing. So far, it's definitely making a positive difference to everything. Ben has been wanting a cat for YEARS...
Friday 8 April 2011
It's Friday which means it's CAMHS day, but no weigh-in as we're doing fortnightly weighing sessions now. The psych has been away for 3 weeks, so it will be interesting to see where we go from here... The Recovery Contract is still going strong and Ben 'spent' some of the points last weekend on some models which he paints - so points really do 'win prizes'! But do they get results?
Tuesday 5 April 2011
I forgot to say that Mothers Day went brilliantly - a zillion years away from what happened last year. Ben wrote me the sweetest poem; the kind that brings tears to your eyes, and hand-painted a lovely card. The previous night's meal at Pizza Express was about as happy and relaxed as you can get - not a hint of the 'evil ED' as Ben tucked into a huge seafood pizza plus a side of plump olives accompanied by a large glass of white wine and followed by an ice cream pud with fudge bits in it. And then he came home and took a large bite out of some chocolate peanut brownies which he'd baked that afternoon. Result? Mama Matty grinning like a cheshire cat all the way back home. A triumph!
Laura Collins is an amazing woman. What she doesn't know about eating disorders isn't worth knowing - or at least you can be darned sure she'll be on the case and know about it before you can say "I loathe ED!" Unfortunately it seems that the media don't know about eating disorders - or at least they've totally got the wrong end of the stick. It's not just mis-information, it could be potentially damaging. Laura's blog from April 4th is well worth a read: http://www.laurassoapbox.net/2011/04/9-mistakes-cbs-makes.html
Saturday 2 April 2011
Last year I spent a large part of Mothers Day sitting alone in my car on top of the Moors 'drowning my sorrows' in a box of Belgian chocolates which Ben had given me earlier in the day, armed with a box of tissues to wipe my tears. In those days I spent a lot of time at weekends, just grabbing some 'comfort food' and my car keys and driving off into the distance because life at home had got too stressful to cope with. I left my husband in charge while I took 'time out'...
Good news; we are 'on target' (or just about) with a 0.9kg gain over the past fortnight - and it's the first time we haven't been weighed every week. (Funny how I keep referring to it as 'we' but that's just the way it's become...) CAMHS thought Ben would get stressed and unable to cope with 14 days of not standing on the scales, but he was fine. Also, the 'contract' is still working splendidly and I am convinced that it is responsible for the progress we have made over the past 2 weeks. "Points win Prizes!" is Ben's mantra...
Monday 28 March 2011
Since my last entry I've been 'cramming' like mad, collating links to research, papers and other stuff about the latest evidence-based eating disorder treatment. Yet again, the fellow moms at the Around the Dinner Table Forum have been awesome in helping me get information together. To say that, over the last 19 months or so, the learning curve has been MASSIVE would be an understatement. These days I know so much about eating disorders that I could sit an exam in it. And many of the other 'experienced' moms at ATDT could do a Doctorate in it with their eyes closed... I am constantly IN AWE at how much stuff they know.
Thursday 24 March 2011
It's early days, but the Recovery Contract seems to be working. More importantly, Ben has taken it on board enthusiastically ("Points win prizes!" he says, thinking of the X-Box Kinnect thing he'll "buy" with however many points I eventually decide it's worth...
Monday 21 March 2011
Okay, so it may or may not work, but I have high hopes for it at this stage in the recovery process. Today I drew up a Contract aimed at steady Weight Gain over the next few months with a view to hopefully getting Ben ready to go to University in September 2012 (that's another topic altogether...) Most importantly, it's about turning round the stagnation we've been experiencing since the summer on the weight gain front (constantly swinging up and down so in reality he's virtually maintained, despite huge improvements on most other fronts) - so he gains some serious weight.
Sunday 20 March 2011
I've just been incredibly inspired by a thread on the Around the Dinner Table Forum about Recovery Contracts. Why has no-one in our treatment team suggested something like this, I wonder? They sound like a really workable idea at this stage in Ben's recovery! It is SO IMPORTANT that, having been in Limboland for a few weeks, we move forwards in a purposeful way. I already laid the cards on the table, so to speak, at CAMHS on Friday re. my Plan for the next few months. As a way of implementing my Plan, setting up a Contract seems like a great idea - and Ben thinks so, too. (Thus far...)
So I went into CAMHS on Friday where we were seeing the nurse (psych is on holiday for 2 weeks), armed with a load of paperwork 'ammo' and a PLAN for the next few months. I went through it, point by point, and on the whole the nurse thought it was all a good idea. Also it follows on from their suggestion last week to start blind weighing or weighing less frequently.
Wednesday 16 March 2011
So I picked up the phone and it was the Deputy Head from school saying Ben had gone AWOL in central Manchester while on the school trip today... For an hour, staff searched the area trying to find him to no avail. Eventually, one hour later, Ben answered his phone, saying he was making his way back to base. Deputy Head phoned me to say he'd met up with the teacher and continued on the school trip.
Tuesday 15 March 2011
My very good friend W on the ATDT Forum has advised (re. escaping from 'Limboland') that when she "broke this process down into manageable steps, it was less exhausting and anxiety provoking for me". She recommends "One step at a time - don't worry about the future... Stick to the task that needs to be tackled now" and "When that's solid, move on to the next step". Excellent advice, W, because it's so easy to see EVERYTHING that needs tackling at this next stage of anorexia recovery as massively daunting. A bit like when you realise the whole house is a total tip (like mine is) and you don't know which room to begin with - and, even then, cleaning the individual rooms is daunting because there's so much to do!!!
So, as you'll have gathered, I am keen for us to move onto the next stage of recovery from the anorexia. This in itself is going to take careful juggling of - still being supportive / loving / helpful while introducing a bit of a 'tough love' / no compromise element. If I don't, then he risks staying in a 'comfort zone' rut. It's far easier for the eating disorder to keep away from school and friends at comfortable 'safe' home. It's also far easier for the eating disorder to continue to be very selfish, looking inside instead of outside. So I am carefully nudging him out of both of these comfort zones...
Sunday 13 March 2011
It's been one of those watershed type weekends where you all end up being forcibly moved onto the next level of recovery. Having been in Limboland for a few weeks, I knew we needed to get over the next hurdle but, like many things with anorexia, it doesn't always happen when or how you planned it. To cut a long story short, we're making changes this week with a view to addressing those nasty niggly problems that are still well and truly embedded in the eating disorder. Basically, if we don't, then they will stay and Ben will stay in Limboland for as long as we put off working on them...
Thursday 10 March 2011
Every morning I drive Ben to the bus stop to catch the bus to school. And this morning when he chucked his school bags into the back of the car, I reminded him to put them in the car boot (trunk) instead. Why? Because driving Ben to the bus stop in the Bad Old Days of High Anorexia used to be an altogether different experience... 12 months ago Ben dreaded going to school. He dreaded everything to do with school and dreaded being with everyone in it. Virtually every morning was a battle to get him to the bus. And virtually every morning he'd explode into a massive 'Ed Rage' which meant verbal abuse en route to the bus stop, usually lots of tears and finally the violent slamming of the rear passenger car door as the incredibly distressed 16 year old slunked off down the hill to the bus stop. My car door has never recovered...
Tuesday 8 March 2011
... And Ben has made a stack of amazing pancakes with various combos: lemon and sugar, nutella, yogurt and fresh fruit, and maple syrup - all fried up in oil. I ate one and he ate the rest, followed by a large iced coffee. Then, last weekend, he made a batch of enormous and very delicious fruit scones which we all had with jam and butter. Today he was the first to make claim to our new ice-cream maker to whip up some frozen fruit yogurt).
Saturday 5 March 2011
Inspired by a post on the Around the Dinner Table Forum, I clicked through to this page which features a list of excellent recommended books for parents of teenagers with eating disorders along with reviews. If you live in the UK you can obtain most of them via Amazon.co.uk.
Back in the pre-anorexia days, Ben loved nothing better than to go out with his friends and have a giggle. Yes, he was serious at times but on the whole, he was funny and enjoyed life. Then along came the anorexia and gradually seeped all the heart, life and soul out of him. It sucked him dry of all his humour, enjoyment and good emotions - and at the worst point it was if he had no emotions at all. He'd just stand there like a zombie, staring into space, completely unable to FEEL anything. He was totally numb. And he wouldn't respond if you tried to hug him or tell him you loved him. He'd watch TV comedy shows without moving a face muscle and would be as miserable as sin whenever we were out anywhere. It was horrible...
Funny how at the start you look at the anorexia as if it was a physical illness in that you can ask the doctor how long it will take to cure and they will tell you "Six months max" or whatever. I even found stuff on the internet which reckoned teenagers have undergone a full recovery, from diagnosis to discharge from treatment, in just months. Then it gradually dawns on you that, sorry, but you're in for the long haul and no-one can tell you how long it will last...
It's been a difficult week which is why I haven't been blogging much. The main issue this week (apart from the usual insomnia) has been to make a list of all the other things that the anorexia still controls with a view to working on them one by one to move Ben up to the next stage of recovery (and help to address the insomnia in the process, hopefully). Many of these are things that keep him awake at night - worrying about stuff, planning stuff, etc. Basically, the pychiatrist asked him to picture his life as it will be without the anorexia and list all those things that won't feature in it, which are currently driven or controlled by the anorexia.
Tuesday 1 March 2011
Ah, sunshine, warmth and spring flowers at last - which was a great excuse for a walk in the woods this afternoon to gather some dead wood for the fire (if you remember, Ben is still doing mornings only at school, although he didn't make it in today due to another night's insomnia...) And, also as you may remember, these days walks are great opportunities for nice, positive heart-to-heart chats as Ben opens up about his anorexia. Back in the 'bad old days' we'd do umpteen walks, especially when he was off school last Spring / Summer, and I'd be so frustrated at the lack of progress - or promises to improve this, that and the other which I knew the anorexia wouldn't let him keep.
Monday 28 February 2011
Horrible though it was to recall, it's amazing how far we've come since that summer holiday in France. For example that hellish tension - I remember being on Red Alert virtually ALL the time in those days, primed for whatever Ed the Anorexia Demon would throw at me next. Anorexia behaviour is often referred to as "unpredictable behaviour", but it's actually highly predictable in that you can PREDICT it will happen one way or the other, sometimes several times a day. My nerves were red raw and I'd wake up every morning dreading what that day would bring and long for Ben's Dad to come home at weekends to take the strain off me a bit (in those days he worked away during the week, so I had to deal with everything alone).
Sunday 27 February 2011
After last year I'm in two minds as to whether or not we should book a holiday. So far we haven't booked anything and I'm tempted to leave it until nearer the time to see what happens... Before, we always used to book well in advance to be sure of getting the pick of (reasonably cheap but luxurious) French villas in nice locations, so last year we'd booked well before we noticed that anorexia had muscled its way into our lives.
Harriet Brown is the author of "Brave Girl Eating" and an article on the Telegraph's website today gives you a summary of her experience. (Her book is about to be launched in the UK.) Well worth a read.
Saturday 26 February 2011
After 4 months of forging forward, Ben has reached a plateau and seems to be neither going forwards nor (thankfully) backwards in his fight to recover from anorexia. He is still gradually putting on weight but he's reached the stage where he thinks his current weight is OK and he can't see any reason why he needs to put on any more. This, despite the psychiatrist telling him yesterday that he has another 5kg to go before he reaches the minimum healthy weight for his height.
Monday 21 February 2011
Not everyone advocates calorie counting as a means for the anorexia sufferer to weight gain. But, for Ben, calorie counting was the only way to get him to eat enough food - especially as he prepares his own breakfasts and lunches. However calorie counting definitely plays into the anorexia's hands in that it's a very 'controlling' thing and puts the person in a completely artificial environment. So yesterday Ben announced out of the blue that he'd had enough of counting calories.
My very dear friends and fellow Around The Dinner Table forum members, C and M, have produced a fabulous little video about how to explain the eating disorder to the sufferer's friends and suggesting ways they can provide helpful support. You can see it on YouTube by clicking this link.
What I especially like about this video clip is that it features two teenage boys discussing 'Mike', a friend who's developed an eating disorder, rather than the familiar angle of talking about anorexia as a girls' illness.
What I especially like about this video clip is that it features two teenage boys discussing 'Mike', a friend who's developed an eating disorder, rather than the familiar angle of talking about anorexia as a girls' illness.
Sunday 20 February 2011
As you may have gathered, last week was a tricky week following the 1.9kg weight gain the week before. Ben had found it difficult to come to terms with this and it sparked off all manner of anxiety-related issues throughout the week. However the Good News was that, despite this, he continued to cooperate and eat in the way he should. He admits the 'anorexia voice' was telling him to cut back most of the time, but he refused to listen to it, insisting on ploughing on. I am so proud of him...
Saturday 19 February 2011
The thing is, as I said below, you don't expect boys to get anorexia or other eating disorders. So, as a parent, you might notice that something isn't 'quite right' but aren't sure whether you should seek professional help. Also, there's a misconception that, to be suffering from anorexia, you have to be stick thin. Obviously, during the early period, they might still be within a 'healthy weight range'. So if you visit your GP with your teenager in tow, you might not be taken seriously if their BMI is within a 'safe' range.
Thursday 17 February 2011
I've been trying to pin-point exactly when it was that we realised something wasn't quite right with Ben. It was during the summer of 2009. We'd been in France and he'd been swimming up and down the pool every day (usually 100 short lengths) and also jogging past the vines and back. Swimming wasn't new, nor was jogging, but doing them both in the searing heat was...