And so the third year of my blog draws to a close...

584 posts on, I am just about to come to the end of the third year of my AnorexiaBoyRecovery blog! Around this time, three years ago, I knew I wanted to start writing about my experiences of helping my teenage son overcome anorexia, but I was really nervous about setting up a blog and making our struggle public.

The 2nd letter I would never send to Ben's friends

Back in March, I wrote a letter which I would love to have sent to Ben's friends, but of course never did. Instead I wrote it down here, in this blog. Now I feel that it's time for a second letter which I also will never send, and here it is...

Here's to hope for your Christmasses yet to come

If the 'me' of Christmas 2009 could have looked into a crystal ball and seen our family Christmas of 2013, I would have positively exploded with hope. Christmas 2009 was the first Christmas that ED, the eating disorder demon, sat alongside us, uninvited, at Christmas Dinner (and all the other Christmas meals and festivities). Yesterday, on Christmas Day 2013, I can proudly say that the eating disorder was nowhere to be seen. And I hope that our experience of emerging from an eating disorder, will offer other families hope for the future.

The wrong kind of library is demanding my books!

This has happened with all my books. First I get a request from Edinburgh to mail five copies of the book to the legal depositories of the five UK and Ireland non-lending libraries. Then I have to do the same for the non-lending British Library. This exercise costs me around £50 every time I have to do it, for each book. Yet all they do with these books is to store them in some deep, dark vault for ever and ever. They are of no use to anyone whatsoever. So, in effect, the royalities of the first 25 copies of every book I publish go to fund this pointless exercise. In a digital day-and-age this practice is ludicrous. But it is British law, so I have to go along with it.

To all those of you who are finding this Christmas difficult...

Christmas 2009 was a nightmare for our family. I spent Christmas Eve in floods of tears, listening to Carols from Kings on the radio, something I used to do on Christmas Eve with great joy. Christmas 2010 was a nightmare, too. I remember cooking Christmas dinner in tears - the result of a screaming match between Ben, his dad and me over some food issue. Christmas 2011 was better. It was also my friend Sue's last Christmas and, unable to raise the energy to cook a meal for herself, she spent the day with us. Thankfully last Christmas, at my sister's house, Ben tucked into a big Christmas dinner. The cat came along, too, for the day and we had a fantastic time. As for this Christmas?

Triggers...

Talking about PTSD triggers... Just when you think you've got your head round what's going on inside your head, you get triggered by something. Yesterday's trigger was a link someone had put to a report on Sky News about a university rugby team and their latest star player. Guess who this player turned out to be? If you've read my book, Please eat..., you will know him as Ben's friendly rival, Kieran. Ben's friend and rival on the rugby and sports fields, and in the classroom. Whoosh! A kind of unpleasant explosion went off inside my head.

A curiously liberating week, all in all

Firstly, this week seems to have gone better than expected for Ben at university. He's been socialising and he's been working hard at re-gaining those few lost kilos. His team even won the uni Christmas Quiz at the student union on Thursday night. The week ended with Ben inviting me to take him out for lunch at Nando's where he ate a large plate of chicken salad with pitta bread and olives on the side, followed by two large helpings of chocolate frozen yoghurt, followed by snacking on a large tub of popcorn all the way home. Ben's mood was up and his Monday session with a new counsellor (to work on depression / social anxiety) seemed to go well. The only downside is that his weight has only gone up very slightly. So this week, he is intent on eating even more in a bid to get up to the weight he needs to be at 20-years old. His birthday is a week tomorrow.

"Post" Traumatic Stress Disorder implies that it's "in the past"...

Not in any way belittling the Post-Traumatic Stress Disorder (PRSD) struggles of people who've been through a severe trauma that happened in the past i.e. it has been and gone, and is no more... I'd say that there is another branch of PTSD which is a combination of past and present, which is particularly tricky to deal with or go through. This is when the primary trauma has taken place, but that isn't the end of it. There is still an element, or elements, that are present. So not only are you re-living past events, you are living present day events, too. In other words, it's a double-whammy of horribleness.

So how's the support package going at university?

Not very well, to be honest, after all those positive vibes. And it's not just their fault; Ben isn't contacting people when he could be. He is sometimes, but not as much as he could. And, sadly, he says that the counsellor guy is "rubbish". Plus, we haven't heard any more from Emily as regards the Wargames group.

Let's talk about PTSD (Post Traumatic Stress Disorder)

For over a year now I've been experiencing disturbing thoughts / behaviours which, when I look at MIND's page on post-traumatic stress disorder (PTSD) or post-traumatic stress syndrome (PTSS), appear to sum up exactly what is happening to me. I've known this for quite a while, but haven't wanted to admit it. Why not? Because, curiously, I feel as if what I've been through doesn't "deserve" the label of PTSD. After all, I haven't been involved in a war or an horrific event like the London bombings. And no-one has died. (Except my Dad and my friend, Sue.)

2013 was Meeting New Friends year!

I was just thinking about how many friends and contacts from my enormous eating disorders network I've actually met in person this year, most for the first time! Wow, it has been amazing.

Ultimatum agreed by all

The bad news is that, probably due to the gastric flu-ish bug Ben had the other week, he'd lost weight when we came to weigh him this weekend. As a result his weight is hovering around a too low level. Any lower and things could get tricky. The good news is that he is actively working on re-gaining the weight plus the extra kilos he needs to gain as he approaches the age of 20 in a couple of weeks' time. Because we are all well aware that a further drop could prove tricky, all of us (Ben, Paul and me) have agreed an ultimatum.

Be careful what you wish for...

One of the best things I did this year was to publish my books, primarily Please eat and When anorexia came to visit. Once I got into the swing of things, I was on a roll. I immersed myself in it and loved doing it. And, for the past few weeks, I've been umming and ahhing about what to write next, toying with a number of different routes.

The starfish are being thrown across the sea as I speak!

I am thrilled to see that Laura Collins and Charlotte Bevan have just launched the paperback version of their super new book: Throwing Starfish Across the Sea: A pocket-sized care package for the parents of someone with an eating disorder, now available from Amazon. Read the review I wrote on Goodreads.com...

Because I am passionate about getting the message out there...

... I am doing a SPECIAL OFFER Sunday 1st December. For 24 hours only, ALL Kindle versions of my eating disorder books will be just 99p / 99c each. (A great way to get hold of my 2011 and 2012 blog posts on Kindle!) You can also borrow all books for FREE if you're a member of Amazon Prime. Visit my Amazon page to see a list of my books.

What every parent dreads... but what a mother!

Losing your beautiful child to an eating disorder is every parent's worst nightmare when battling with this horrible illness. It is something that is constantly at the back of our mind as we watch our child disappear and transform in front of our eyes, physically, mentally and emotionally. And, unlike virtually any other potentially fatal illness, eating disorders - and especially anorexia as it advances and begins to consume the young person from within and take hold of their minds - has the patient fighting against treatment and support. It's not that they don't want to get better, it's just that they can't without a heck of a lot of highly skilled professional help. This is made exponentially worse once a young person reaches the age of 18 and is legally permitted to choose whether or not they receive and / or engage with treatment. If, indeed, that treatment is any good.

Update, plus the book I'm about to read

Not much has happened on the university front this week. This is because Ben has been off sick with some kind of fluey bug. Thankfully he has kept eating, and has also put on weight which is excellent news. So, with any luck, it's back to uni next week and, also with any luck, back to the attempt to build up a new network of friends. Meanwhile, he is well enough to cook dinner for tonight and is doing a stew with dumplings, the kind of meal I could never imagine him eating in the Bad Old Days of his eating disorder.

Read a transcript of my talk

You can read a transcript of my talk from Friday here: http://bevmattocks.co.uk/anorexia_talk.html

Driven by love, not red-tape

I have spent the last couple of days mixing with some of the most amazing, loving, caring, passionate and selfless people I have ever met. Of course I've met some of them before (for example at the 2-day Nottingham FEAST conference in November last year), and I already 'knew' many of them from the online community of people that are passionate about making a difference in the world of eating disorders: parents, former sufferers and professionals. And, although eating disorders is such a massive topic that a one-day conference, like the National Carers Conference in Eating Disorders I attended yesterday at the Institute of Psychiatry, run by Professor Janet Treasure, Gill Todd and the Maudsley & Kings College London, can't ever hope to do more than chip away at a huge iceberg, it did a bloody good job! But what stood out for me most, on reflection, is this...

On the whole the Daily Mirror article was accurate...

So how much of my published interview with the Daily Mirror this week were my words and how much were the Editor's words, after the (very nice) journalist agreed the final version with me, but did warn me that the Editor would give the final go-ahead before publication and, sorry but no I couldn't see the post-edited version... (Note, our bit features further down the article.)

Walking unaided... hopefully...

As a result of my 'tough talking' the other night, Ben made an appointment to see Rob which is schedule for this morning. He is also seeing the university GP, hopefully for some meds and other solutions to help with the depression. Also, he went back to Sheffield yesterday, seemingly OK, and stayed there overnight. So watch this space for news...

Why it was so hard to fight for Ben in 2010...

There are several reasons - these are just a few of them...

The benefit of hindsight... how I wish I could help the 'me' of 2010...

Continuing to take a look back at my ATDT forum posts from when I first joined the community... Throughout March 2010 I am still having problems with getting CAMHS to realise that Ben's eating disorder is as serious as it is. The CAMHS team comprises a psychiatrist, a nursing specialist and a dietician who we see every so often but never at the same time as the psych and nurse. I am having real problems convincing them that Ben is seriously sick. He has lost around one quarter of his pre-anorexia weight; he used to be a big, burly rugby player - a 'forward' - before the eating disorder struck and, by March 2010, he's a shadow of his former self. And, at the end of January 2010, his pulse plummeted to 29, which I understand is a pretty dangerous level. Yet CAMHS appear to be happy with Ben's 'progress'...

Looking back at my first ATDT forum posts in 2010

On the 9th March 2010 I discovered the Around The Dinner Table forum which supports parents and carers of young people with eating disorders. And I posted my very first post. I was worried sick because, after just a month of treatment, CAMHS didn't seem to think that Ben's case was too serious. Already they were suggesting spacing out our appointments to fortnightly and the psychiatrist had gone on leave for three weeks.

What frustrates us is that his psychiatrist doesn't think his problem is too severe. His BMI isn't bad and when he's with her, his behavior is quite normal. As a result she's started spacing our appointments further apart; we have a 4 week break between our next two appointments. Despite trying to argue the case with her, she's adamant he isn't too bad. As parents we feel as if we've been pushed off a cliff and into free-fall... 

and

The CAMHS team really don't think he's seriously bad and it makes me mad because I know differently and he's pulling the wool over their eyes... now psych has gone off on her hols for 3 weeks too so we're all at sea... Last time we saw her she was all smiles and congratulations as B reached a 'healthy weight' for the first time. B took that to mean he can maintain his weight now at what, to me, still looks very thin and not at all like the strapping sportsman he once was...

This was the beginning of the fight for me to get Ben fully weight-restored as opposed to settling for just within the healthy range according to the official charts, which wasn't anything like the pre-eating-disordered Ben.

And, as you will know if you've read my book Please eat..., shortly after this Ben admitted that he was deceiving CAMHS - or, rather, the eating disorder was deceiving CAMHS. He, or 'it', was "play-acting" at the CAMHS sessions, pretending to be perfectly OK.

Yet the moment we'd leave the CAMHS unit - woosh! - all hell would break loose as he'd undergo a Jekyll-and-Hyde-style transformation into 'the demon'...

Some home truths and a lot of 'effs'

When Ben pinged back yesterday evening... again... I played the strong, silent type. Indeed the only words I uttered between the station and home were "Could do," in response to his question "Do you want me to put your chicken dinner in the oven?"

A spot of deja vu...

So I dropped off a silent and uncommunicative Ben at the train station yesterday, university-bound. Then I went swimming, came home, had lunch and answered the doorbell... to Ben who wasn't saying anything about why he'd appeared on the doorstep, but "the soup and baguette I had in Pret were awesome!" A throw-back to the time he went AWOL on a school trip to Manchester.

Proud of him

Well, his week wasn't as I predicted. I predicted a doom and gloom week as Ben is given a 2-week extension on his decision on whether to stay or go. But, so far since he arrived home yesterday evening for a long weekend, he's been relatively upbeat, which is a major improvement on this time last week!

Rewind to 27th June 1996, Ben goes to nursery school...

Thursday 27th June 1996: Ben's first day at "Ding Dong  Bell School" (as he calls it). (This is going to hurt me more than it hurts you...) Here I am visualising him heartbroken, thinking I've deserted him... I primed him well and asked him where he was going today, then where I was going (shops!) (the easiest thing to say!). Then the fact I was coming to get him after lunch. Thus far, no-one's phoned to beg me to come and pick up an uncontrollable toddler who's trashing the place and bashing other kids...

"Beverley is such a worrier..."

"Detach... detach... detach..." I have been saying to myself, over and over again, for the last 24+ hours. And it is so very difficult, especially since I've had no news from Sheffield during this time. They say that "no news is good news", but unfortunately that's not the case with Ben and uni. Well, not at the moment at any rate. And I am a natural worrier. I always was. Like the time my little sister got locked into our Granny's bathroom when we were small.

Over to Ben...

So we saw Rob today, the former psychiatric nurse who now works for the student counseling service. As planned, I kept quiet unless Rob asked me something. Ben conveyed everything to Rob really well. So where does he go from here?

The time has come to practice emotional detachment

Emotional detachment or detachment with love is something that's practiced within the sphere of addiction i.e. carers or loved ones of individuals who are addicted to alcohol, drugs, gambling, whatever. It is the point where you detach yourself from attempting to protect them, to change their behaviour or do things for them. (Termed 'enabling'.) It is the point where you make the conscious decision to ignore that phone call for you to pick them up from the pub or where you refuse to pay the fine for your addict child with the result that your child is forced to spend some time in jail.

The cruel legacy of the eating disorder

One of the key things with an eating disorder is that it tends to isolate its victim. Before Ben developed anorexia over the first few months of 2009 when he was 15, he was top-dog within his social group. He had a lovely set of friends. He was hugely popular. But over the summer of 2009 he began to cut himself off from his friends. Very quickly, throughout the rest of 2009, Ben isolated himself. By early 2010 he couldn't even bear to be in the same room as his peers. Within a month or so we'd removed him from school altogether.

36 hours later and I am EXHAUSTED!

It went from Ben in pieces, rock-bottom depressed, about to quit Uni and hide himself away for the rest of his days... 36 hours ago... to a hopefully successful fix and a relatively relaxed and happier Ben. Thankfully no eating disorder was evident at any part of the proceedings; indeed he scoffed back 700 calories over lunch in Starbucks without batting an eyelid.

'Motivational interviewing' works so well!

I always think it's a bit of an odd term: Motivational Interviewing... It conjures up an image of job interviews, with the interviewer kind of attempting to get some sort of sense out of the job applicant! But, of course, motivational interviewing isn't that at all. Gill Todd and Professor Janet Treasure describe it really well on this website. And, motivational interviewing is what works so very well with Ben and me, when we walk and talk - or, in the case of  Sunday, have a coffee and blueberry muffin in Starbucks, and then walk and talk through our good old friend, the local park.

Let me describe Ben's university room to you

Ben's university has two purpose-built large residence 'villages', constructed about 5 years ago on the site of the old 1960s tower-block halls of residence I was so familiar with in my student years. Ben lives in one of these 'villages', approximately 30-minutes walk from the university and on a regular bus route (although why 2 different bus companies have to run this single bus route is a crazy mystery to me, meaning that Ben's season ticket for free travel on First Buses isn't accepted by Stagecoach Buses...) Anyway, to Ben's room...

How's Ben doing at university?

The Good News is that Ben's weight is up; he is successfully managing to eat more, which is so fantastically excellent, considering how easy it would be for him to give in to the lure of the former Anorexia Voice as he struggles to settle in at university. And it is a struggle for him. But, considering he missed out on years of social skills as the eating disorder kept him isolated at home, he is doing marvellously.

Two weeks on - an update on university life

I've been AWOL for a bit, haven't I? It's now two weeks since I wrote about the Nando's visit, so here's an update on life at Sheffield University...

It turned out to be a relatively good week, thankfully!

Today - Friday - I met up with Ben in Nando's in Sheffield for lunch before driving him home for the weekend, tons of dirty washing and all. Yes I was apprehensive, but I needn't have worried. After a rocky start to the week, things seem to have gone relatively well. Okay there's a ton of reading and studying to do, but that's to be expected. But he's been doing it, and he's been eating, and he's been socialising.

He's having a tricky week...

It's the first week of lectures and things are a bit tricky. OK, doubtless they are tricky for virtually every new student, but I know that Ben is finding it particularly tough - and he isn't in the best frame of mind.

I am so proud of my son I think I may just explode!

So he made it! He got to the end of Intro Week at university and has come home for the weekend, for a breather and some 'space'. And it was a very happy, vibrant Ben that I picked up from the railway station yesterday evening followed by what seemed like hours of Ben recounting all the things he's done this week and people he's met. It could have been so very different, couldn't it?

Or, an even better way to play this 'game'...

Even better, a 'game' where he has to guess what's on my list - and say it aloud (to reinforce the messages in his head). He gets points every time he gets something on my list - and extra when he comes up with positives that aren't there!

"Imagine a game," I plan to say to him this weekend...

"Imagine a game where the prize is £1000 to spend on Warhammer products, however in order to win the £1K you are only allowed to make positive statements. Any negatives result in lost points. The idea is that you look back on the the week that's just gone and make statements about how it's been, what you've achieved, how you've felt, etc - but they have to be positive. OK, let's start..."

Welcome to the rollercoaster...

Up we go... woosh! Down we go... lurch! Then up again... And all the time feeling sick to the pit of our stomachs about what's going to happen next. This week sure is turning out to be a rollercoaster, but - thus far - both Ben and I have managed to keep Ben hanging on in there and on track. From what I can see from the pics someone's posted on his FB page, yesterday afternoon was a 'high' on the rollercoaster stakes. Let's  hope things stay up there for a while... or longer...

The firefighters may be on strike today, but not firefighter #1 i.e. meeee!

So I got a phone call at 9am from Ben, so upset I couldn't tell what he was saying, so I had to ask him to breathe and repeat slowly. It seems that this morning he had what turned out to be a phishing email from someone pretending to be Student Finance England and he provided them with all the details they asked for (ouch!)... only to get an email a few mins later from the uni warning that a phishing email was going round, by which time it was too late. He was beside himself, so I calmed him down as best I could and called his bank to put a block on everything, followed by student finance. Then I grabbed my car keys and drove down to Sheffield where we spoke to student finance's fraud team and went to the uni branch of his bank to sort everything out. By lunchtime everything was duly sorted out. New bank account being set up and new student finance log-in, etc. Phew.

A very productive day all in all

Today was the day I drove down to Sheffield with some extra things for Ben and an opportunity to touch base with him. It began with a pretty depressed Ben meeting me in the student residences car park. I dropped off the stuff and we walked down to the cosy cafe in the Botanical Gardens, which is the cafe we sat in last year (if you've read Please eat... it's the cafe where he broke down in tears about hating being at uni - and so did I...)

Let's rewind to September 1977...

It's September 1977 and I'm en route to Sheffield Polytechnic to begin an HND in Business Studies. I couldn't get into halls of residence and so - after looking around at some truly awful accommodation including one flat which was basically just a room with 3 or 4 bunk beds! - me and a girl from my school found a flat owned by a rather unpleasant (and, worse still, racist) lady called Mrs M. (Who, being racist, made sure we were white females before allowing us to sign the tenancy agreement.) Unfortunately there were literally no other options, so we had no choice but to move into the dreadful Mrs M's poky little flat.

Night of the Negative Vibes...

We didn't get 'the phone call' until 6pm, but immediately I recognised the tone... Exactly like last year... Ben rock bottom and in tears, with a small voice with short "Mmn"s every so often... He couldn't be bothered to go out to the event at the Union "because it will probably be sh*t". He had "nothing in common with his flatmates", those he's seen. "Two of them keep themselves to themselves with their room doors shut." He hasn't been to see his friend W who's moved into the student flats down the road "because he's going to a paid event this evening with his new flatmates". Etc etc etc etc...

Reporting back

So... There we were, doing a repeat of last September which felt kind of weird. Same apartment complex, different block / flat, bigger room - nice and sunny, with 2 windows, a fridge, sink, 2 hobs, double bed and large bathroom, plus shared kitchen / living area with 4 other boys. We met one of the boys who seemed nice, if quiet (and looking oh so lost!!!), and his parents. Yet, predictably, our son just sat in his room, unpacking in complete silence before sitting at his desk, logging onto the wi-fi, and gradually spiralling downwards into deep, dark depression.

Keeping a low profile in the run up to uni...

Without a crystal ball I can't possibly predict how university is going to turn out - in this, Ben's second attempt, starting tomorrow. I've been keeping a bit of a low profile on the topic because, well, that's just the way it seemed to pan out. Remember how I was so excited last year? Packing stuff and excitedly discussing intro week events, buying tickets for Ben to go to events and so on? Well, this year I've done none of that. Apart from dragging out last year's luggage which has been stashed away under various beds, on shelves and in the spare room, and going through it, I've done very little. Except the odd bit of nagging e.g. "Have you found out when W is moving in?" (W is an old friend from school who left at the end of the 5th form and is going to Sheffield, too.)

Thank you everyone who rallied round with FB comments and emails

It's made me quite teary, actually, when I think of how many people responded to my blog yesterday when I was feeling cr*p. I am so grateful to have such a wonderful network of virtual and real people (I know, you're all 'real', but you know what I mean...) I am feeling so much better today, especially after a swim, sauna and session in the jacuzzi (even if I did get told off by the pool attendant for sitting in it 'too soon'!)

So what's going on inside my head?

I only wish I knew. Which is why I'm booking back in with the counsellor I saw for a number of sessions last year when things were getting a bit too much like a cat's cradle inside my head. This, and the fact that I'm just getting over a goddamn awful bout of gastroenteritis (yuk!), and the fact we were on holiday last week, is why I've been keeping a low profile recently. But I decided it's time to put pen to paper again, so to speak.

The Woman's Hour emails...

Dear Bev, I am writing to you from the BBC Radio 4 programme ‘Woman’s Hour’. Next week we are doing a mini-series about parent bloggers. Next Wednesday we will be looking at campaign bloggers – bloggers who use their blogs to publicise specific issues related to bringing up children. Your blog about your son’s anorexia really struck a chord. Would you be free to come on the programme? Would you be free to have a chat over the phone? My number is XXXXXXXXXXXXXX. It would be great to hear from you. All the best, 

Dear Media, What you don't realise is this...

Dear TV, Radio, Magazines, Press, etc... What you don't realise when you cancel a planned news item about boys with eating disorders - or even when you don't cancel - is this...

The interviews that never happened...

I'm not sure whether or not I'm still being interviewed on Woman's Hour next week. The other week I was also interviewed for a piece for the Mail Online and spent ages on the phone to their reporter, but I haven't heard any further. Then, a year ago, Ben and I spent an afternoon being filmed for Sky TV news and nothing came of that, either. Are we just bad at being interviewed, simply not photogenic, or is the issue about boys and young men with eating disorders just "not news"? Mind you, we are still appearing on BBC's Inside Out later on this month along with Sam Thomas of Men Get Eating Disorders Too and various experts.

Hopefully I am going to be on BBC Radio 4's Woman's Hour next Wednesday talking about this blog!

I have a clear memory of being with my mum in our kitchen at home, some time in the early 1960s. We'd just had lunch, it was a freezing cold day and the coal fire was blazing away in the kitchen grate. I was probably painting some exotic work of art at the time, aged around 3 or 4, and my mum was listening to Woman's Hour on what was then the Home Service. If my memory serves me right, Woman's Hour was always preceded by a children's story - Listen With Mother - which I used to await with excitement every day. At such a young age, Woman's Hour wasn't quite so exciting, but my mum used to listen to it religiously. And now I have been invited to be a guest on Woman's Hour (which is still going strong all these years later). I must tell my 86-year old mum when I get back from Devon.

The walk we did in spring 2009 brings back memories

Four-and-a-half years ago, Ben, my H and I did a 9 mile circular walk around some of Dartmoor's more challenging terrain. It was the spring bank holiday week in 2009 and already the seeds of Ben's eating disorder were beginning to germinate in his mind. The only problem was that none of us realised this was happening; not me, not my H and not Ben himself. Today we did the same walk and got talking about what was going on in Ben's head during those early days.

Why didn't the cardiac consultant make the connection between a slow heart and anorexia?

Yesterday, while we were being interviewed for BBC's "Inside Out" programme, it struck me again: why the hell didn't the heart consultant at the Leeds General Infirmary make the connection between a slow pulse rate and anorexia when our son was rushed into his cardiac ward in January 2010 (see my book "Please eat...")? Especially as today I came across this excellent article which describes the connection in no uncertain terms. Surely, as a heart consultant at a leading hospital, he should have made the connection?

"No evidence whatsoever for a genetic connection"...?

Dear University Eating Disorders Researcher, Yesterday Ben and I were interviewed by the BBC for "Inside Out", to be screened in late September. As part of the slot, the BBC is also interviewing several eating disorder experts, one of which is you. So I was a little concerned when I was told that, in the course of your extensive research, you had found "no evidence whatsoever" for a genetic connection for an eating disorder. So I would like to point you towards the following resources, which are widely available, and have been compiled by recognised global leaders in eating disorders treatment, understanding and research.

Reading between the lines at the party...

Chit chat chit chat... Yesterday saw my H and me at a large party to celebrate an old friend of my H's 50th birthday, in Kent. The last time I'd seen many of these people was when Ben was little and we lived in Kent, so all of us were doing a lot of polite-conversation catching up. Most had teenage children; indeed many of them were at the party. And all of them were tucking into the massive buffet and taking advantage of free drinks before they left for a night out on the tiles.

Five hours of putting things to rights, from both sides of The Pond

With our already rip-off UK rail fares set to rise yet again, I was lucky enough to stumble across some really cheap last minute tickets to London. So yesterday - Monday - I hopped on the train to Kings Cross where I was met by one of the mums who contributed to When Anorexia Came To Visit. Then a quick tube train to Liverpool Street Station where we met up with Becky Henry who'd been to Norwich to visit the eating disorder charity, BEAT. Then another tube to Covent Garden (where Becky was alarmed to discover the only route to the surface was via lifts / elevators or a spiral staircase). After that, we sat down and talked until early evening when I had to leave to get my train back. What a day!

A great little book for parents who are just embarking on this journey

Jane Smith, Director of the UK eating disorders charity Anorexia & Bulimia Care (ABC) has sent me a copy of her book The Parent's Guide to Eating Disorders. It really is a great little book, especially for parents who are just embarking on this journey and know very little about eating disorders. I've just left a review on Amazon and here is what I've said about it:

11th hour trip to London to meet Becky Henry

Our fantastic network of parents of young people with and recovered from eating disorders spans the globe. Although I feel I know so very many of them as well as any of my local friends, I have only met up with a handful of them 'in the flesh'. Tomorrow I'm meeting up with Becky Henry who wrote the preface for my new book When Anorexia Came To Visit along with one of the mums who contributed her story to the book. The three of us have never met in person, yet we've 'talked' via the Net on many, many occasions. So I'm thrilled to have got hold of an 11th hour cheap-ish train ticket to London and back.

These days, these are the ONLY battles that go on across a table...

Remember those Bad Old Days when I used to dread our evening meals? The days when Ben would down tools and go crazy, usually triggered by something as "simple" as there being too much choice on the table. And he would rant and rave in the hallway, kicking things, banging his skull until I worried I'd hear the sound of splintering bone and yelling in that deep, dark, hopeless way that an eating disorder can sometimes make its victims do? Meanwhile, I would sit there at the table, tears streaming down my face, unable to cope and feeling utterly helpless and terrified?

Our message is about HOPE, but we can't ignore the fact that this is a deadly illness

It's a really hard stance to take: talking about hope with eating disorders and the fact that recovery IS possible. And I am always elated when I hear about another young person who has come through an eating disorder successfully. Yet we can never escape the fact that this is a deadly illness; indeed eating disorders have the highest mortality rate of any mental illness. And today I heard of another young individual who lost their fight. It's the kind of thing that has us all kicking furniture with anger at the way this insidious illness steals victims from a beautiful and promising young life - and from their loving, supportive families.

Preparing to get the word out there to the media

Today I sent the following letter to BBC's Breakfast programme and will be doing a version of it for other media - to get across the messages conveyed in When Anorexia Came To Visit.

My latest guest blog - for NEDA in the States

I am thrilled to have been guest blogging for NEDA (National Eating Disorder Association) in the States about our story: read it here. I've also been guest blogging for other eating disorder sites, too, and Mumsnet, and when I get a moment I will paste in the links here. Bit busy today, having just returned from a lovely day with one of the mums who contributed her family's (positive ending!) story to my new book When Anorexia Came To Visit and who found resources like FEAST and the Around The Dinner Table forum via this blog, well over a year ago.

We must get this book out to the people that need to read it!

My new book When Anorexia Came To Visit describes the experiences of 20 families in the UK battling with an eating disorder and the obstacles they had to overcome in the UK's provision for adolescent mental health. This isn't just a book for parents, it's a book that the health professionals themselves need to read: doctors, Child & Adolescent Mental Health Services teams (CAMHS), psychiatrists, psychologists, therapists, politicians - everyone. The problem is, how do we get it to them?

It is NOT a get-out-of-jail-free card; parents are NOT to blame for their child's eating disorder

There is a lot of debate going on today as a result of my recent Mumsnet guest blog post as to whether or not parents are to blame for their child's eating disorder. Naturally, I state that they are NOT to blame - and no-one, anywhere will convince me otherwise, especially with all the latest neuroscience research coming through showing that anorexia patients' brains appear to be wired up differently from "normal" brains, reinforcing the belief that eating disorders are biological illnesses and not lifestyle choices. But I won't go into all the science here; you can read an excellent article on the subject by clicking this link.

Bev is looking a little like Shrek...

Grrr... Call me a perfectionist, or it may be down to the fact that I come from an advertising agency background, but I expect my books to print perfectly every time, regardless of the printer. I publish through CreateSpace (owned by Amazon) and, when you order printed proofs, you order them from the States. Every copy I have received from the States so far - copies of both my books - have been spot-on perfect. It's the UK printers that have let me down.

Getting ready for university

Before Ben can return to university in September, he needs the "OK" from the university medical centre. This is because his one-year Leave of Absence was on medical grounds. So, no doubt, he'll be travelling down to Sheffield within the next week or so for an assessment. Goodness only knows what this assessment will comprise of, but hopefully they'll say and do the right things.

It's simple: all we want to do is to get our child well again.

Let's face it. All we parents want to do when we present our child in front of the NHS treatment team we've been allocated is to get our child well again - and as soon as possible.

"I'm happy, I have 'sort of' friends at last!"

... said Ben yesterday. To which I responded: "They're not 'sort of' friends, they're real friends." To which he replied: "Well they're not the kind of friends you can talk about old times with, because I haven't known them that long." "But that doesn't stop them from being real friends," I said. "At some point, your original friends were new friends and you had no common history to be nostalgic about."

University bound in September!

If you've read my book Please eat..., you will know that, last September, Ben attempted university, but was back home within days on an impromptu gap year. Initially we weren't sure whether or not he'd choose to take a second gap year, but yesterday he made the final decision that - yes - he's going to university this September. And this time it's going to work out OK.

No, success in life isn't about what you 'look like': why this report is so wrong...

I love Beat, the UK eating disorders charity, I really do - like most of my eating disorders network. Yet, yesterday, this report was brought to my attention. And, I can tell you, it's raised a few eyebrows amongst the eating disorder community so far. I am not the first person to blog or comment on it...

An excellent cross-section of families from across the UK

There are many Good Things about my new book When Anorexia Came To Visit. The best thing of all is that these 20 wonderful families willingly volunteered to share their personal stories with other families they've never met in order to give them hope. But the other Good Thing is that I believe these 20 accounts represent an excellent cross-section of families from across the UK (looking primarily at restrictive anorexia nervosa).

Paperback version is out early!

Excellent news: When Anorexia Came To Visit is now available in paperback as well as Kindle, across the world. Here is the link to the UK Amazon site: http://www.amazon.co.uk/dp/0957511841

Phew! At last "When Anorexia Came To Visit" is published!!

I've spent the weekend updating the manuscript for When Anorexia Came To Visit where I talk to 20 families across the UK about their experiences of living with an eating disorder - and yesterday I published the Kindle version of 'When Anorexia Came To Visit' by Bev Mattocks It's also available on Kindle at Amazon.com. Just search for the book title or the ASIN number: B00E23AH6I. It will be available in paperback on the 31st July. And you can 'like' my new Facebook page which I set up today! Meanwhile...

Batty embarrasses herself in the hotel restaurant...

I'm still trying to work out the reason why, when served up with a pretty cr*p meal in the hotel restaurant I was staying at during my week's get-away in Somerset and Devon this last week, it set off the waterworks. Big style. And I haven't been so embarrassed or angry with myself since the time the same thing happened in church (described in my book "Please eat... A mother's struggle to free her teenage son from anorexia"). The more I tried to stop, the worse it got! And all because of some soggy roast potatoes. But why?

Just me, a park, some wood pigeons and a squirrel

In my book "Please eat... A mother's struggle to free her teenage son from anorexia", I talk about how - during the most stressful moments of my son's eating disorder - I'd take time out at the end of the garden, watching the vegetables grow. We have a long garden, so it was a fantastic way to truly "walk away from the eating disorder", even if it was only for a moment or two. But there was another place, a place I'd imagine myself going to on those frequent nights when sleep evaded me. Yesterday I went back there - to the real place.

Keeping a close watch...

We still weigh Ben every 2 weeks, just to be sure that things are continuing to move in the right direction - and, over the past month, he has lost weight on both occasions. He is now back to the weight he was in April 2012, just after he was discharged from CAMHS. And, remember, he was discharged from CAMHS at the same weight he was when he started CAMHS treatment. He is 4 - 5 kilos lighter than he should ideally be at his age and height. So I am keeping a very close watch...

Reporting on our first holiday abroad since the Summer From Hell in 2010

If you've read my book Please eat..., you'll know that the summer of 2010 was an absolute nightmare - and it began with a fortnight's holiday in France. CAMHS had told me to back off and not talk about food for the duration. We were told to "go away and have a normal, happy family holiday". Ha ha ha ha, I hear you all say, as if you can take a "holiday" from your child's eating disorder!

Apologies for the long absence!

Ben and I spent a week in Cornwall (the one he won in a competition), spent a week back home before jetting off to our main family holiday in Italy. We came back at the weekend. So apologies for not writing any blog posts. And, in case you're wondering, my new book When Anorexia Came To Visit where I talk to 20 UK families about their experiences of living with an eating disorder will be published at the end of this month. Meanwhile my other book Please eat... which describes our own story is selling steadily on Amazon.

Yes, I agree with this new blog, FBT is dang hard...

This new blog from the Kartini Clinic in the States is really great. And parts of it reflect what families have said to me in my research for my new book "When Anorexia Came To Visit". The thing is, with any other illness with such a high mortality rate, you would automatically expect to hand it over to the professionals and let them get your child through it. You wouldn't think twice about that and you certainly wouldn't attempt to do it at home. However, because - in so many cases - FBT (Family-Based Treatment) for eating disorders has been shown to lead to a positive outcome with anorexia and some other eating disorders, this is what we families are expected to do. And it is danged hard.

Sneak preview of "When Anorexia Came To Visit"

Would you like a sneak preview of my new book "When Anorexia Came To Visit"? While I'm checking the final printed proof, I've uploaded the introductory pages here for you to read.

Thick, calorie-laden Cornish clotted cream on scones with strawberry jam

This is what Ben suggested we treated ourselves to after our coastal walk yesterday (Ben and I are on that free holiday in Cornwall which he won in Dorset Cereals' Spin the Bottle competition).

Ah the dulcet tones of Xbox Live in our living room...

Four years ago, Ben stopped playing Xbox Live with his friends. He used to do it all the time, but over that summer of 2009 as the eating disorder began to take over his life, he just stopped. Instead, he played on the Xbox in solitude. Today, however, he's hooked up to Xbox Live again, laughing and yelling with glee as he "fights" a couple of friends on some game or other.

Anger and a pressing need for change means book #3 is germinating inside my head.

And this time I may write it in collaboration with the UK eating disorders charity ABC (Anorexia & Bulimia Care) with whom I am having a series of very nice, friendly and fruitful conversations. This is part of an email I sent to ABC's Director, Jane Smith, today:

A letter I wrote to CAMHS in 2011 about getting Ben WR

This is a letter I wrote to CAMHS in June 2011, 15 months into my son's treatment for anorexia: As of last Friday, Ben is now XXkg (BMI XX. However I am concerned that, as a result of last Friday's session, Ben now believes he is Weight Restored and that CAMHS consider him to be physically "recovered". I am hoping he has misinterpreted this message.

Looking across the dinner table at Recovery

It suddenly dawned on me last night as Ben and I sat across the dinner table eating Italian bean, aubergine and red pepper stew on buttered ciabatta with parmesan cheese (and, in Ben's case, a boiled egg on top) that I was looking in the face of Recovery.

So carers should be screened for depression, say doctors' leaders?

Why has it taken 'the powers that be' so long to come to this conclusion? As parents / carers of a young person with an eating disorder depression is no stranger, as many, many other parents will testify. But, I would like to ask, what good would it do?

Post #2 from 2011: Breakthroughs - the eating disorder is losing the fight...

Recycled post #2: Thursday, 6 January 2011 What do smoked mackerel, After Eight mints, low fat spread and jam on toast, five varieties of biscuit and carrot cake have in common? They are all things that, 12 months ago, Ben would have avoided like the plague but which he’s eaten this week without any problem. And this Christmas, he had a chocolate advent calendar.

Special offer! Get my book "Please eat..." for just £9.99 inc p&p while stocks last

I have 20 copies of my book "Please Eat..." available for just £9.99 each including p&p (within the UK), a saving of £1.68 on the Amazon price (while stocks last).

Okay, maybe I should clarify things a little

I recognise that I wasn't clear as to exactly why I was jealous and angry in this post - or, rather, which camp I felt Ben belonged to: the former or the latter. Great treatment and outcome versus not-so-great treatment and not-so-great outcome.

Wow, this was such a weird experience!

Ben has a history of horrible in-growing toenails. We thought they'd been fixed long ago, but recently they've reared their ugly heads and so it was off to the chiropodist today which was a really weird experience.

I realised I was jealous and angry

Having talked to 20 families for my new book When Anorexia Came To Visit: Families Talk About How An Eating Disorder Invaded Their Lives (published this summer), it became clear that some families had received an exemplary approach to treatment from start to finish - from GP through to eating disorder recovery. Others had received a haphazard, slow, messy, outdated and often counter-productive approach. Guess which approach was more successful?And you know what?

I'm speaking at this conference in November

This is the conference I'm speaking at in November and I've been asked to pass on the details to anyone who might be interested in coming along. It's being run by Professor Janet Treasure OBE and Gill Todd under the umbrella of Kings College London and the South London And Maudsley NHS Foundation Trust:

My very first blog post on 5th January 2011

Recycled post #1: Wednesday, 5 January 2011 Only last night there was a programme on the TV reporting on the pressures of young girls to look stick-thin. But it’s not just girls that develop eating disorders. For the past 18 months, my 17 year old teenage son (who I’ll call "Ben" here) has been battling with anorexia nervosa and this new blog will be about our progress.

My plans for this blog while things are quiet

Things are pretty quiet here (which is a GOOD THING). But I was thinking about this blog which I've been writing for almost 29 months. I know that it's been useful to a stack of parents; indeed the things they've said about it make me blush. Being able to help other families in their fight against anorexia is one of the reasons I put my 2011 and 2012 posts into 2 printed books which I published earlier in the year. However I think I've sold a grand total of THREE!

Updating you on what's happening in our family life at the moment

It's been a while since I've given you an update on Ben. To be truthful, I've been keeping a bit of a low profile in our household on the ED-front. In other words I've tried to keep things as near normal as possible. No mention of weight, no mention of calories, no getting out our contract and "doing points" as we still do on occasions. All of which is a Good Thing.

Nearly there with my new book "When anorexia came to visit"

My new book When anorexia came to visit: Families talk about how an eating disorder invaded their lives, is almost complete! Janet Treasure has written a Foreword, Becky Henry (author of Just tell her to stop) has written a Preface, Laura Collins (Founder of FEAST and author of Eating with your anorexic) has written an Introduction - and then there are 20 individual family stories plus a snippet from my own story at the back.

A huge thank you to "my" 20 wonderful, generous and courageous families!

I continue to be immensely grateful to the 20 UK families that have contributed their stories for my new book When anorexia came to visit, families talk about how an eating disorder invaded their lives. But you'll have to wait a month or so before it's published. In the meantime, here is the draft introduction to give you a taster and to show how wonderful these 20 families are...

Talking to ECHO about their self-help intervention for carers project

As part of the background research for my new book "When anorexia came to visit, families talk about how an eating disorder invaded their lives" I talked to Rebecca Hibbs of the ECHO (Expert Carers Helping Others) project to discover how this is helping parents and carers across the UK deal with the emotional and practical pressures of looking after an adolescent with an eating disorder. (Thank you, Becky, for talking with me!)

A very brief fantasy letter to the medical professionals

Dear GPs, CAMHS, the local hospital and everyone else I came across in the course of my son Ben's anorexia and all those other medical professionals out there, I am putting a book together where I talk to approximately 20 families across the UK about their own journeys through anorexia and you know what?

Life before ED...

I have a huge purple concertina file box by the side of my desk which has been gathering dust for the past four years. It contains a mountain of historical research I was doing, and had been doing for four or five years, which stopped - dead - when Ben's eating disorder arrived on the scene.

This rough intro sums up what my next book is about...

Here is my first and very rough draft introduction for my next book: When anorexia came to visit: Families talk about how eating disorders invaded their lives. So, if you're interested in knowing what this new book is about, the following pretty much sums it up. (It's still a draft and I need to check my facts and sources, but it'll give you a good idea.)

Gah, husbands!!

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.

Batty's BIG CHALLENGE for the week is...

... 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...

"I can tell what Ben needs to look like by looking at you"

... 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.

The conversation I did - and didn't - have with Mrs X

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:

Discussing "faith-based" eating disorder "treatments" made me think of 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.

Finally, a full chart of Ben's weight, from start of CAMHS to discharge

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...

The letter I would never send to Ben's friends

Here's the letter I'd love Ben's friends to see, but I would never send because he would go mad! But it feels particularly appropriate right now...

MP here I come tomorrow...

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.

Still talking to people and still writing...

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.

There MUST BE a united front against the eating disorder

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.

I continue to be in awe at these brave, generous families!

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!

Busy talking to families about anorexia

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.

But *would* you ever need the ED nurse, Ben?

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.

Picking the brains of the Royal College of GPs

... 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...

Talking with a local GP about eating disorders

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...

Experiencing the Post-Publication Blues?

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...

Putting things into perspective

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.

A labour of love is finally published

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...

Why I feel numb

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.

... that one comment can make such a difference...

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."

Phewee, a heck of a long day at the university

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!

Totally and utterly pointless and not what my new book is for.

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.

Disappearing up the proverbial you-know-what...

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...

Update on who I'm seeing, when and why

Firstly, I'm meeting up with my local MP at some point next week (probably) to talk about the issues raised in the letter I posted here a few days ago (primarily over 16s and eating disorders). Secondly, I'm meeting with two of our local GPs to talk about the current situation as regards diagnosing / understanding / recognising / referral for eating disorders. And, thirdly, I am talking with (so far) 17 UK families about their experiences from when they first realised something was wrong with their child through to referral for eating disorder treatment.

Getting out of my comfort zone...

As I just said on my Facebook page: What is it about contacting the medical profession that scares me so much? Is it because I'm "just a mum"...? Obviously if I'm going to write a book about UK families' experiences of the early months of their child's eating disorder, which would include presentation at their GPs' surgery, then I am going to need to talk to the medical profession in order to take an informed viewpoint. So why does it scare me?

My letter to our local MP. Get writing!

Please feel free to adapt this to send to your local MP! (the wording for paragraph 2 is taken from of this report, as are some other facts and figures). Here goes...

And just in case you're wondering about "Please eat..."

I am still waiting for Ben to finish reading it! In the meantime I have sent off for a final printed proof in the hope that he won't have too many changes. So, all being well, Please eat... will be published in early March.

UK parents, I need your assistance please!

Back in the summer of 2009 when my son, Ben, began to show classic signs of anorexia, I had no idea that boys got eating disorders. As a result I didn’t recognise the warning signs. I knew something was wrong and that it appeared to be getting worse, but I had no idea what “it” was. As the parent of a teenage boy you don’t expect your child to get anorexia. You don’t even think about it.

I am LIVID, LIVID, LIVID. And I know I am not the only one.

Today I read an article in the Daily Telegraph about yet another 18+ teenager with an eating disorder that has been failed by our current system of allowing 18+ young people with serious eating disorders to make their own decisions about whether or not they have eating disorder treatment. Worse, this young woman was discharged because "at 18 she was deemed to be old enough to care for herself". Having reach that magic age of 18, she discharged herself. Within months she was dead.

Letter I wrote "to anorexia" in Feb 2010

I've just unearthed a letter I was asked to write "to the anorexia" at the start of Ben's CAMHS treatment but which was never followed up at a subsequent CAMHS session, so it ended up in the cobwebby archives of my PC. Here it is, and it's going into my book:

Ben is going through my final proof... slowly...

Last summer, Ben and I went through the manuscript for my new book: Please eat... with a tooth comb. However I've changed and expanded it quite a bit since then. So now he's decided to go through it all again, so I ordered 2 final printed proofs which arrived the other day: one for me and one for him.

I'll say it again... I am NOT exploiting my son or his eating disorder, and he agrees with me.

Me: There's this girl... She's a former anorexia sufferer, or still has anorexia... and she wrote on my Facebook page saying simply 'Exploitation at its finest'. I can only assume she is referring to my new book. In the past she has suggested that I may be 'glorifying' eating disorders and 'publicising and exploiting' your eating disorder, Ben. I deleted the post. I just wondered what you thought about it, Ben...

University is going out of its way to help - wow!

Wow, what a superb package Sheffield University has put together to help Ben ease back into university in September (if, indeed, he chooses to return). And here it is, in all its awesomeness!

Yesterday's debate in parliament about eating disorders

It's Eating Disorders Awareness Week and, yesterday afternoon, a group of MPs spent three hours discussing eating disorders. I watched it, from start to finish, and was riveted. I believe you can still watch the three hour discussion here. Well worth viewing if you have the time - or just listen to it on your PC while you get on with something else.

Ben and I, both with red pens at the ready

Ben has decided that he wants to read "Please eat..." before it's published, so I've ordered two final printed proofs - one for him and one for me. Then we can both go through it. Hopefully he won't want me to change anything; we both went through the draft last summer, page by page, which is why I've incorporated his comments into the final book. Fingers crossed he'll be okay with the additional chapters as I don't want to change anything at this late stage when I have dotted all the i's and crossed all the t's!

I am still here! Just...

At the moment I'm not blogging as much as I used to because I'm busy going through (the third?) printed proof of my new book "Please eat..." Now, please don't groan and tell me off for ranting on about my book yet again, but - really - this final stage is crucial. I must get it right. Also, I'm ecstatic about all the great reviews that are coming in - from professionals, other authors and parents. So when is publishing date?

Why I am donating the first 8 x royalties to eating disorder charities

Some authors give away books for free, but I've decided to donate the first 8 x royalties to two of my favourite eating disorder charities: Men Get Eating Disorders Too and FEAST (Families Empowered and Supporting Treatment of Eating Disorders) (which also runs the awesome forum: Around The Dinner Table for parents and carers of young people with eating disorders).

Sermon #6: Happy to settle for 'good enough'? Noooo!

Carrie Arnold's 6th point on her excellent and informative list is: 6. There is hope for recovery. Many people with anorexia recover and go on to live happy, fulfilling lives...and you can be one of them.

Sermon #5: Not a 24-hour emergency service

Carrie Arnold's 5th point on her excellent and informative list is: 5. Anorexia is deadly serious. Eating disorders have the highest death rate of any psychiatric illness. The "best" anorexic is the dead one. Not a nice topic to write about, but here goes...

Sermon #4: Anorexia is not a BMI

Carrie Arnold's 4th point on her excellent and informative list is: 4. Weight isn't the measure of how sick you are. Not that weight and health have nothing to do with each other, but you can be very ill with anorexia and be at a "normal" weight. Remember, you can drown just as easily in six inches of water as you can in six feet or six miles. Now this is the point that really hit a nerve with me...

Sermon #3: the anxiety-busting course that left us in stitches

Carrie Arnold's 3rd point on her excellent and informative list is: 3. Anorexia often brings "friends" in the form of co-existing conditions such as depression and anxiety. Although it makes recovery more complicated, it doesn't make recovery impossible. Staying healthy means managing both anorexia and any other mental illness you might have. So the topic for my #3 sermon is: anxiety and how an anxiety-busting course helped Ben, but not in the way it was supposed to..!

Sermon #2: Food is medicine, but how do you get it into your child?

Carrie Arnold's 2nd point on her excellent and informative list is: 2. Food is medicine. You have to eat in order to get well. You don't have to like this, and eating may make you feel worse at first. That's okay. Keep eating. So the topic for my #2 sermon is inspired by my Text for the Day which comes from my new book:

10 sermons inspired by Carrie Arnold's excellent list

My dear friend M posted this link on Facebook to Carrie Arnold's very excellent list on the FEAST website: Ten Things I Want Sufferers to Know About Anorexia. I was going to write about just one point that hit a nerve with me when I thought, heck, why not do what I did the other Christmas (with the 12 Days of ED Christmas) and write a post a day based on it. So here goes... #1...

And Batty is still tweaking away...

One day, very soon I promise, I will have a manuscript that I am one hundred per cent happy with. I know the text of Please eat... so well by now that I could recite it aloud, off by heart. But that's the problem... I am getting "too close" to it. Thankfully one of my reviewers has picked up on one or two things in the 6 chapters I've posted up on the web as a "taster". She has also kindly offered to have a read through the whole manuscript. When I eventually finish tweaking, that is...

Ouch, I thought, reading this supplement in the Radio Times, this isn't good...

We get the Radio Times, the 'thinking person's' guide to what's on British TV and radio every week. It was Ben who pointed out the 8 page supplement stapled into the centre of next week's issue: The Fast Diet by a doctor that's been on TV quite a lot. Ouch, I thought to myself, this isn't good...

I need your help, dear blog followers and friends!

I need your assistance! When my new book "Please eat..." goes live on Amazon in early February I need (a minimum of) 20 good reviews! And I'd be so, so, so grateful if you would do a quick Amazon review for me when the time comes. As I said on a thread about books on the ATDT forum: I'm keen to get this book out there, as its message that boys get eating disorders, not just girls, is so, so, so important. And, no, I don't plan to make any money from this, it is purely a labour of love!!! But to get it out there, I need some great reviews, on Amazon!

"How do you feel about using your real name, Ben?"

This is what I asked him yesterday. For the past... ages... he's been involved in a project run by Oxford University - an online project aimed at helping young people deal with and understand more about a wide range of teenage illnesses and conditions, one of which is teenage eating disorders, in boys as well as girls. I can't remember when Ben first met their researcher for an interview, but it was ages ago. Now, to coincide with Eating Disorders Awareness Week (11 - 17 Feb), the website is finally going live.

Phew! Busy sorting out a new website

I decided that my main anorexia boy website is a bit overloaded with information so, taking professional advice from another writer, I decided to launch a separate website focusing exclusively on my books, and primarily my new book "Please eat..." which will be published very soon. This new website includes links to excerpts from my books, for example you down download / view the first few chapters as PDFs, which is a great way to get a taste for my books without committing yourself. You can view the first 6 chapters of "Please eat..." here (please note this is a PDF of my second proof and not my final proof which is still being proof-read, so apologies if there are any errors).

Got it out of my system

If  you hadn't gathered, Batty was having an Angry Day yesterday. Angry at the eating disorder for stealing my son's life. Angry at the snail-like pace of recovery, even though I know there is no other option; anorexia can never be like a bacterial illness where you pop an antibiotic and, hey presto, a short while later you're on the road to recovery.

Eye of newt and toe of frog...

Apply tree resin, roots of white lilies and dried human waste to the buboes, then cut open the veins leading to the heart before applying clay and crushed violets. This, esteemed clinicians believed, was an effective method of treating the Black Death in the Middle Ages.

Like pushing you-know-what uphill...

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

What would have happened if...?

At least Ben is almost recovered so it's not a complete disaster that he is refusing further treatment. But imagine if I'd been the parent of a 19 year old who desperately needed help, but refused? I wonder what would have happened?

"If you don't want treatment then I can't insist you have it," she said...

...Which is true, I suppose. And, yet again, there we were... Ben and me... sitting in front of a clinician with me looking like the over-protective, "pushy" mother and in reality wasting my time and energy, first taking Ben to see the GP and then to get this assessment. Not to mention all the trips to the private dietician and psychologists.

What's the latest situation with my book "Please eat..."?

As you know, I've just published all 300+ pages of my first blog book: Anorexia Boy Recovery, Part I, 2011 and the postman's just delivered the proof for Part II (Anorexia Boy Recovery posts from 2012), which I will proof read over the next few days. But what's the situation with my main book which I've been talking about for well over a year?

Assessment bound...

So tomorrow morning Ben goes for his assessment to see what, if any, further treatment they feel he needs. Call me a pessimist but I'm not holding out much hope... And, if he does get referred for some sort of decent treatment, I expect the waiting list will be hellishly long. So, in an ideal world, what would I want Ben to get out of further treatment?

"I miss her so much!" said Ben the other day...

Back on the 15th December, if you remember, I was worried sick that Ben was heading for a relapse - or worse. He admitted that he was considering suicide and then there was that effing and blinding with the private psychologist when he refused to cooperate with treatment. Later that afternoon I curled up in my bed, in the dark, and sobbed my eyes out, worried sick that we were heading for a relapse - and if we did, that there would be no-one to help us, because Ben is over 18 and legally allowed to make his own decisions.

Why the H shouldn't an 18 year old stay with CAMHS if they want to?

I've been scouting around the Internet looking for various statistics, including average waiting times in the UK for CAMHS treatment, and ended up on the B-EAT website, reading through a forum. The particular thread I found was started by an 18 year old who was terrified at the prospect of being discharged from CAMHS (who she had been with for 3 years). The only reason she was being discharged was because she had reached 18.

Hmn... biographies about eating disorders only at Amazon.co.uk, not .com!

Curiouser and curiouser, as Alice would say (I think). But it appears the "Books->Biography->Social & health issues->eating disorders" section I want to be listed only appears in Amazon.co.uk, over here in Britain - or, at least, that's what my research is showing. Here's their reply from yesterday:

Amazon, "eating disorders" category DOES exist!

Please, please, please dear Amazon... all I want to do is get my book listed under "eating disorders" within the "social & health issues" within "biography"... yet you have insisted - twice - that there is no such category. But here I am, on Amazon, clicking "biography", "S&H issues" and - bingo! - "eating disorders" appears as a category. It's where all the other eating disorder biographies / autobiographies I've read reside. Yet you insist there is no such category! Aaaarrrrggghhh!

A summary of our story in the lead up to treatment

In case you're new to this blog and are unfamiliar with our story, I've pasted in the introduction from Volume II of my new book below (2012 posts - see below right for details). This should give you a rough idea of how my teenage son, Ben, found himself on the road to anorexia (and eventually, thankfully, on the road to recovery).

Brain still pretty mushy, but this is what I've written

Yes I've written that sales letter I'd been putting off - and had a bash at a guest blog for Men Get Eating Disorders Too. Despite my brain still feeling like a lump of cold mashed potato (and probably the colour of the [tasty but disgusting looking] mash-with-chestnut-puree that Ben rustled up the other evening), this is a sneak preview of my draft:

Severe writer's block... durrr... brain like mashed potato...

Sam Thomas of Men Get Eating Disorders Too has asked me to "guest blog" about my newly published book (see right). But my mind has gone completely blank. It's as if I've never put pen to paper (or rather fingertips to keyboard) in my life. The same thing happened when I tried to blog here about a really fruitful "walk and talk" I did with Ben this afternoon. Durrr.... my brain is like mashed potato... I think Batty's brain is on sabbatical.

Published on Amazon today, my 2011 blog posts!

Browsing through a blog can be a real pain, especially a blog that's been going for a few years. All that clicking and searching... phew! And the thing about my blog is that, with each post, I've tried to make it helpful to other families going through the same anorexia nightmare that we went through. So, because I want other families to be able to easily access my story, I've now published all of my 2011 blog posts in paperback, and my book (314 pages) is now on Amazon.co.uk and Amazon.com (See right)

So freaking negative...

I am fed up. Fed up with working like a Trojan to help my son reach recovery from his eating disorder while being faced with someone who is so incredibly negative about the outcome - and life in general - that, frankly, I wonder why the hell I bother. It's not in my nature to give up. After all, this has been my life for the past three-and-a-half years. But, by heck, sometimes I feel like doing so.

Take a deep breath and patiently wait to ask him...

One of the many, many things I've learned in my three-and-a-half year battle to get my son recovered from anorexia is that patience is most definitely a virtue. I am usually impulsive. I react, guns blazing, and think afterwards. Over the years it's got me into one or two scrapes and I know that, as far as eating disorders are concerned, and especially approaching your child about something that's worrying you about eating disorder behaviours or compulsions, needs to be approached with patience, diplomacy and caution - to get them on your side, avoid yelling at each other and getting nowhere.

And here is the description that will appear on Amazon

My final proof is "almost" ready, just a couple of minor tweaks. In the meantime, here's the description that will appear on Amazon:

2011 blog posts available in paperback very soon

I've put our story "Please eat..." on a bit of a back burner while I re-work the last few chapters. In the meantime I've been busy over Christmas getting my 2011 blog posts into paperback to make it easier for other families to read through our experiences. I am just checking the final proof and it will hopefully be on Amazon.com and Amazon.co.uk very soon (all 300+ pages of it!). Watch this space! In the meantime, here is what I say in the introduction:

Another Good Day, with Good Things happening

Ben is embracing our 2013 Plan enthusiastically. We've been counting fats - and they seem to be on target, so that's brilliant. We are still in agreement as regards the updated Contract and I have introduced new weight / BMI tramlines which he must keep inside - slightly higher than last year, and they may rise still further, but - hey - let's do this in small bite-sized stages. This way it's easier to get him used to change.

We have just had such a GOOD CHAT - what a great start to 2013

I've just been through my proposed revised Recovery Contract with Ben and he is happy with it. We also had a long and very fruitful chat, using my newly acquired (but still fledgling) "motivational interviewing" techniques learned from the New Maudsley Approach website. Really and truly this is THE MOST AWESOME way to discuss eating disorder / recovery related things with your child.

Starting as I mean to go on - revised Contract

Batty's first job of the New Year has been to revise the Recovery Contract in line with everything that needs working on at the moment. The aim is to kick-start the recovery process again after being in a bit of Limboland / Doldrums over the past month or so.