I can only say that the C-PTSD (Complex Post-Traumatic Disorder) came on with a vengeance from sometime on the evening of the 23rd until early evening on Christmas Day itself. It was quite frightening as I have never felt like that before: raging PTSD symptoms on full pelt - the works. And I had no control over it. Well, that's not strictly true. I had a choice: either to hide under the duvet for 48 hours or emerge and 'do business as usual'. I chose the latter as I didn't want to spoil everyone else's Christmas and we were entertaining the family at our house.
Looking for information on eating disorders in boys? Worried that your son has an eating disorder? How can you tell if a boy has an eating disorder? In 2009 my 15-year-old son developed anorexia. Now, aged 28, he is recovered & studying psychology in order to help others. This blog tells the story of my son's recovery from anorexia as well as raising awareness of eating disorders in boys.
Wednesday, 28 December 2016
Friday, 23 December 2016
A not so 'silent night' (or day). Woohoo, it's Ben's birthday!
It's Ben's 23rd birthday today. Before he developed anorexia back in 2009 this day was usually loud and noisy with the sound of umpteen boys laughing, yelling and generally messing around up in Ben's attic room. You see, Ben's birthday parties were legendary. Indeed so many friends were invited that his parties had to be held in two shifts - countless friends one day followed by countless other friends the next with a sleepover inbetween. Then, during the years of the eating disorder, the house fell silent - apart from the final birthday sleepover when his anorexia had begun to rage and we had Ben hurtling downstairs in the middle of the night screaming and weeping because something had upset him. The following day was subdued as the boys' parents collected them from our house. The contrast between emaciated eating disordered Ben and his normal friends was heart-breaking. His friends stopped coming to our house after that and Ben's birthdays were solitary affairs with just the family. I remember his 18th birthday being especially poignant as he told us how down and depressed he felt - to be 18 and have no friends to celebrate with...
Boys get eating disorders too, you know!!
Someone please hand me a megaphone because I want to yell out loud that MEN AND BOYS GET EATING DISORDERS AS WELL AS GIRLS AND WOMEN!!!!! Because, in this study that was pointed out to me this morning, it's all about women and eating disorders. Again. No mention that men and boys struggle with anorexia, bulimia, etc, too.
Tuesday, 20 December 2016
Surviving Christmas / The Holidays when your son or daughter has an eating disorder
Needless to say, the combination of Christmas / The Holidays / Hanukkah or whatever your festive celebration and an eating disorder like anorexia or bulimia can be a nightmare. No, not 'can be'; it IS a nightmare. I know. I've been there, done it. I've watched my son starve himself in the run up to "all that food" and then meticulously check how much he ate on Christmas Day, counting calories to ensure he didn't 'overdo it'. I've watched him eat a little too much and then punish himself afterwards for being "greedy" and "binging". I've been on Serious Red Alert in the knowledge that the slightest thing could result in banging, crashing, yelling, moaning and slamming his head against the wall.
Monday, 19 December 2016
Dr Julie O'Toole, I want to shake your hand about the misuse of BMIs for diagnosing eating disorders
I am LOVING Dr Julie O'Toole's blog and, in this recent blog post, she echoes what I have said about BMIs being used as an indicator of the seriousness of an eating disorder both at diagnosis stage and throughout treatment. She gives a terrific example of how reliance on BMI charts could prove potentially dangerous when assessing certain adolescents, especially those whose pre-morbid BMIs were above the so-called 'norm' yet who ate healthily (i.e. they didn't overeat). The same could apply to young people who carry a lot of muscle e.g. many males. Say the individual then goes onto lose a substantial amount of weight very quickly (for whatever reason), begins to get hooked on the idea of continuing to lose weight and gets taken to see the GP or pediatrician. The GP calculates the patient's BMI and the only alarm bells that are ringing is that this patient's BMI is too high and they might need to lose weight. See why this could be dangerous? Especially if the patient is presenting with typical eating disorder symptoms?
Excellent advice on how to weigh an eating disordered child
Every week directly before our hourly CAMHS session Ben was weighed in an ante room. He was told his weight. It might have gone up slightly - or down. If it had gone up, even by a tiny amount, the entire CAMHS session would be hi-jacked by panic and anxiety that his weight was ballooning out of control and that we were "making him fat". Worse, that his weight would continue going up and up without ever stopping and he might explode, Mr Creosote style. As a result he would spend the following week making adjustments to ensure that the needle was pointing in the 'right' direction at the next scales session.
Does anyone out there still believe that parents cause eating disorders?
If so, I would like to direct them to this superb article by Julie O'Toole, MD - Founder and Chief Medical Officer, Kartini Clinic for Children and Families, which sets out the rock-solid scientific evidence for eating disorders being brain disorders and that "parents are part of the therapeutic solution, not the source of the problem". For Dr O'Toole, the "take-home message that biology sends us is that not only do parents not cause eating disorders, schizophrenia, autism, and other brain disorders, they couldn’t cause them if they wanted to".
Sunday, 18 December 2016
Remembering my dear friend Sue - the little woman with the MASSIVE heart
Sue (left) and me (right), Christmas Day 2011 |
Let's try FBT first - it's a no-brainer!
As I say in my last blog post: I am not saying that FBT (Family Based Treatment) is a 'magic bullet', nor that it suits everyone. But there appears to be more evidence for FBT than AFT (Adolescent-Focused Individual therapy). And, when faced with an illness that could kill your child, I'd bet my back teeth that any parent would want to try the treatment method for anorexia with the most evidence of success? It's a no-brainer, really. Like, why in a million years would you choose to initially go for a treatment model that didn't have as much evidence to support it? Especially when, with an illness as deadly as anorexia, your child's life could be at stake?
Why FBT is being adopted in some NHS authorities as first line treatment for young people with anorexia
A couple of years ago when I went to Glasgow to hear James Lock (of Standford University) speak about the evidence for FBT (Family Based Treatment) as an effective treatment model for adolescent eating disorders, I found myself wanting to jump up and down with agreement. But at the same time I also felt immense sadness and fury at the fact that back in the day we, along with numerous other adolescents and their families, were not offered FBT. Back then many UK treatment teams were still adopting the more traditional Adolescent-Focused Individual therapy (AFT) for adolescents with anorexia nervosa. Thankfully times are slowly changing and these days more and more local health authorities are rolling out FBT as first line treatment for young people with anorexia - our home city included. Indeed the evidence for FBT goes back to 2010 (and even further; Maudsley family therapy was initially devised at the Maudsley Hospital in London two decades ago) when, according to Prof Lock, "[researchers found that] family therapy for anorexia more effective than individual therapy".
Saturday, 17 December 2016
Feeling as if the whole world is against you and your gut instinct as a parent
As a parent, you know your child better than anyone else and Ben and I had always been close. So when he got more and more sick with the eating disorder in the early summer of 2010, despite four months of CAMHS treatment, my gut instinct was screaming out that things were WRONG!!
The triangulation gets worse...
How I wish I could go back to late June 2009 and hug the 'me' that I was then. Judging from my posts on the Around the Dinner Table forum, I was desperate. Truly, utterly and completely desperate, feeling totally powerless and lost. This was the month that my son 'took back control' of his own eating when it was decided that 'Mum's Eating Plan' should be dumped. It was also the month that the dietitian was withdrawn.
Tuesday, 13 December 2016
26 months of eating disorder treatment. Total weight gained? 1kg.
Body dysmorphia drove Ben to believe he'd been fat before the eating disorder struck |
Triangulation - the eating disorder's favourite state of affairs
Back in 2010, as we neared the point where my son was given control of his breakfast, lunch and snacks and 'Mum's Eating Plan' was dumped, there was some super-triangulation going on. By this I mean that different people were saying different things. Eating disorders love this. What eating disorders find tricky is when everyone - both parents and everyone in the treatment team - is 'on the same page', presenting a united front against the eating disorder.
Monday, 12 December 2016
The problem I had with getting my son to eat
By March 2010 I was getting desperate and although we'd been seeing CAMHS for a month, I wasn't getting any support with the eating plan that I'd asked them to give me. It was jam-packed with all kinds of things that my son wouldn't eat in a million years. The same goes for the self-help eating disorder books I was busy reading.
On the eighth day of Christmas, the anorexia recovery gave to me... “Eight Christmasses since our first ED Christmas”…
2009... 10... 11... 12... 13... 14... 15... 16... It's eight Christmasses since our first Christmas with the eating disorder. At Christmas 2009 my now 16-year old son, Ben, was on the waiting list for CAMHS treatment for his eating disorder; he'd been on the waiting list for a month and it was a couple of months since the GP had sent off a referral. Ben was seeing a private CBT therapist in a bid to stop his escalating eating disorder falling off a cliff. Despite the therapist's best efforts (ironically the same therapist I'm currently seeing for EMDR therapy), it didn't work. Ben got worse. By the New Year of 2010 he was a shadow of his former self. He'd become volatile and violent, he'd developed a slow, low, monotone of a voice - 'the voice of ED', as we called it, his eyes were dark and blank, he was painfully thin, his skin was dry and transparent, and he had bruises on his back where he'd put his bony body through umpteen sit ups which he did several times a day.
Sunday, 11 December 2016
The letter I'd love to send to Ben's CAMHS psychiatrist but of course never will
Dear Ben's Psychiatrist,
First let me say that the bouquet of flowers we gave you on our final visit in 2012 really was to say thank you - genuine thanks for being such a nice person, for going 'over and beyond the call' when it came to CAMHS sessions running overtime and for truly empathising with my son. As the months went on, any professional disinterest evaporated. I believe you really cared for my son. I know you liked him. And I hope I'm right in saying that, throughout those final months of CAMHS treatment for my son's eating disorder, you treated me as an important and valued part of the treatment team. You listened to what I was saying, especially after we introduced our 'contract' and you saw it was working.
First let me say that the bouquet of flowers we gave you on our final visit in 2012 really was to say thank you - genuine thanks for being such a nice person, for going 'over and beyond the call' when it came to CAMHS sessions running overtime and for truly empathising with my son. As the months went on, any professional disinterest evaporated. I believe you really cared for my son. I know you liked him. And I hope I'm right in saying that, throughout those final months of CAMHS treatment for my son's eating disorder, you treated me as an important and valued part of the treatment team. You listened to what I was saying, especially after we introduced our 'contract' and you saw it was working.
On the sixth day of Christmas, the anorexia recovery gave to me... “Six month waiting list angst - hopefully part-processed”…
This time we're talking about me. Four years ago round about now I began to feel a bit strange - kind of numb and dissociated from what was going on around me. Eventually this was diagnosed as Complex Post-Traumatic Stress Disorder (C-PTSD). Anyway, as you may know, I've been receiving various therapies, private and NHS, and am currently undergoing EMDR (eye movement desensitization and reprocessing) which aims to 'process' some of the most troubling elements of the trauma. The element we've been focusing on most recently is the anger I feel / felt at how long it took for my son to be diagnosed with anorexia (see last-but-one post as to why he was never formally diagnosed with anorexia) and the various obstacles along my way e.g. GP, CAMHS waiting list (potentially up to 6 months, hence the tenuous title of this blog), etc. Suffice to say that although the anger will never go (of course it won't, it's only natural!), it should be a little easier for me to deal with now and here's why...
Saturday, 10 December 2016
My scrawled comments on the letter speak for themselves
All over the letter I talk about in my last blog post are scrawled comments - my desperate notes for the next CAMHS meeting: How soon before my son can go as an in-patient? How much more does he need to decline? How do I stop him exercising? How can we get him to eat school dinners? Refusal to stick to calories on school days when "sitting around doing nothing". I can't PHYSICALLY force him to eat - what are you going to do because I CAN'T LOOK AFTER HIM, prevent self harm, etc, he is bigger than me. What if he continues to lose weight? One hour a week with CAMHS isn't sufficient! What is the plan? Where do we go from here? Reading between the lines you can kind of guess what was going on inside my head at that point and why I felt so very, very helpless and frightened.
Boys v girls when it comes to 'officially' diagnosing anorexia
I have a letter in front of me from CAMHS which was mailed to me at the end of that terrible summer of 2010 when my son's eating disorder and associated violence, volatility and dangerous behaviours were heading downhill at the speed of light. His weight was heading south, too. I have the weight chart to prove it. Terrified of where things were heading, I wrote to CAMHS and the letter I have in front of me is their reply.
On the fifth day of Christmas, the anorexia recovery gave to me... “Five million pounds”…
Back in April of this year I said to Ben: "I'm so proud of you, all these time-management skills and all that" (in relation to organising his final year's degree studying perfectly and not getting at all stressed. "What's brought that on?" he replied, suspiciously. So I told him I'd blogged about it and rambled on about how proud I was of him - and how many of these time management skills came as a direct result of those months that he spent studying at home for his GCSEs and A-Level examinations.
Friday, 9 December 2016
On the fourth day of Christmas, the anorexia recovery gave to me... “Four life-saving letters: ATDT”…
Back in March 2010 I wrote my first post on the online forum that was to become a true life-saver for me and my family as we pushed to get our then 16-year old son through his eating disorder and out the other side: ATDT (Around The Dinner Table).
On the third day of Christmas, the anorexia recovery gave to me... “Three nerdy housemates”…
One of the most difficult problems to fix with my son's eating disorder was his social life and skills. Right from the start - that summer of 2009 when his emerging eating disorder began to be more evident - he had isolated himself from his friends. The boy who'd been so popular and whose birthday parties had to be held in shifts he had so many friends, became friendless and alone. As his anorexia got worse, he couldn't even bear to be in the same room as his peers. Basically, his eating disorder took over his life; there was no room inside his head for friends.
Thursday, 8 December 2016
On the second day of Christmas, the anorexia recovery gave to me... “Two hearty breakfasts”…
I can't remember when my son first began to have not one but two breakfasts every day. I think it may have been back in 2012 as he pushed for recovery from anorexia after the introduction of our fantastically successful 'Contract' at Easter 2011. And, as far as I am aware, he has continued to consume double breakfasts ever since.
Wednesday, 7 December 2016
On the first day of Christmas, the anorexia recovery gave to me... “A close shave with a train door”…
As my son's recovery from the eating disorder gathered strength and pace, there is one incident that stands out - an incident that, at any time during his eating disorder, would have freaked him out Big Style: the day he caught a train by the skin of his teeth, lost his ticket and successfully dealt with an irate ticket collector. This blog post from March 2015 can be found here.
Revisiting 'The 12 Days of ED (Eating Disorder) Christmas' from 2011
2011 was our third Christmas with the eating disorder. (My teenage son gradually developed his eating disorder over the spring and summer of 2009; then throughout autumn and winter 2009/10 his anorexia began to accelerate at an alarming pace.) At the end of November 2011 (when my son was on the road to recovery from anorexia) I began a series of posts entitled 'The 12 Days of ED (Eating Disorder) Christmas' based on our experiences over the previous 12-18 months. I only got as far as 10 days as more current issues took over the blog. However you can download a PDF of the 'The 12 Days of ED (Eating Disorder) Christmas' posts by clicking here - and if time permits I might do 'The 12 Days of ED (Eating Disorder) Recovery Christmas' for this year, hopefully completing all 12 days!!!
Tuesday, 29 November 2016
Having problems getting your eating disordered child to make positive changes?
A few years ago I attended a conference / workshop for parents of young people with eating disorders. Gill Todd - RMN MSc, former Clinical Nurse Leader at the Gerald Russell Eating Disorders Unit, Bethlem & Maudsley Hospitals, London - was talking about a therapeutic approach known as Motivational Interviewing (MI), used by clinicians to inspire motivation for change and which is believed to be especially helpful for people with eating disorders who may be ambivalent about change. I firmly believe that MI is a fantastic tool to have when you're a parent trying to get your child to take the next step on the road to recovery from their eating disorder. It's a great tool to use when things seem 'stuck', when you feel as if you're going round in circles or when you simply want to SCREAM at the lack of progress!
Sunday, 27 November 2016
Are you a parent or carer looking for support from other parents of young people with eating disorders?
In early 2010, some months into my 16-year old son's escalating eating disorder (anorexia nervosa), I discovered a life-saving resource after a chance search on Google. It was the F.E.A.S.T. website (Families Empowered And Supporting Treatment of Eating Disorders) and its online forum Around The Dinner Table (ATDT). Through this wonderful resource I found the rock-solid support I needed from parents across the world who had 'been there, done it' and also those who were still battling to get their sons and daughters through the hell of an eating disorder such as anorexia, bulimia or EDNOS (eating disorder not otherwise specified).
Saturday, 26 November 2016
Why Red Alert mode is a thing of the past, present and perhaps the future, too.
Yesterday at my therapy session we were talking about how, given certain triggers, my mind and body instantly 'ping' back into Red Alert mode - something I was doing on a daily, if not hourly basis when my son's anorexia was at its worst, and also right up through his first year at university - a period that was very tricky and accompanied by several mentions of the 's' word which put the fear of God into me. I told the therapist that reactions like this are very difficult to fix as they are not necessarily in the past. The anger against the GP and other medical professionals from that period in Autumn / Winter 2009 is in the past and therefore more straightforward to process using EMDR (Eye Movement Desensitization and Reprocessing) techniques. That's what makes it different.
Monday, 21 November 2016
Okay, so that's enough of sifting through notes from 2009. Let's look at the anger...
So why did it take an emergency admission to the cardiac ward at our local hospital to get my son finally seen by CAMHS (Child & Adolescent Mental Health Services)? (At the end of January 2010.)
Autumn 2009 - notes for the private psychiatrist
The following is from my book (Please eat... A mother's struggle to free her teenage son from anorexia) about the period when I was getting desperate for treatment for my son's escalating eating disorder. He was on a long waiting list for CAMHS (Child & Adolescent Mental Health Services) treatment and so I felt the only option was to go private.
Autumn 2009 - some notes I made at the time about my son's worsening eating disorder
Here is a collection of notes I made during the autumn of 2009 - the period when my son's escalating eating disorder was beginning to get more serious. Some of these are what I posted on a forum at the time (not the Around the Dinner Table Forum; I hadn't yet discovered that.) I've pasted it in here as an example of how I thought we could possibly 'fix' the eating disorder early on - and also to show how he was changing. I think this must have been in the November because it talks about a referral being underway.
Processing all the anger using Eye Movement Desensitization and Reprocessing (EMDR) therapy
Over the last couple of Eye Movement Desensitisation and Reprocessing (EMDR) therapy sessions, we've been attempting to process all the anger relating to that period between September 2009 and January 2010 - the period that starts with our first visit to the GP followed by several more visits to the GP in an attempt to get my son's escalating eating disorder diagnosed and treated. There is a heck of a lot of anger inside me - and I can feel it welling up now as I write this blog post today.
I am angry with the GP for not diagnosing an eating disorder, failing to inform me about treatment for eating disorders and failing to refer my son urgently for eating disorder treatment. I am angry with the NHS for putting my son on a massive waiting list for eating disorder treatment. I am angry with the hospital (where my son was admitted in the January when his pulse plummeted to 29bpm) for not recognising the link between an eating disorder and a slow pulse rate (Bradycardia) and also for not understanding that it was critical that my son ate food while he was in hospital. And I am also angry with myself.
I am angry with the GP for not diagnosing an eating disorder, failing to inform me about treatment for eating disorders and failing to refer my son urgently for eating disorder treatment. I am angry with the NHS for putting my son on a massive waiting list for eating disorder treatment. I am angry with the hospital (where my son was admitted in the January when his pulse plummeted to 29bpm) for not recognising the link between an eating disorder and a slow pulse rate (Bradycardia) and also for not understanding that it was critical that my son ate food while he was in hospital. And I am also angry with myself.
Saturday, 19 November 2016
Doing a talk for educators / school staff? Here's a link to my recent presentation.
A few months ago I did a talk about eating disorders to staff at my son's old school. I adapted the PowerPoint presentation I'd used for parents at an eating disorders conference in Edinburgh earlier in the year (Eating disorders are not just a 'girl thing'). I know that many parents of young people with, or recovered from, an eating disorder do talks at schools, colleges, universities and other educational institutions, as do former eating disorder sufferers themselves. So I've uploaded a PDF version of the school talk I did (slides only, not the script, I will upload that at a later date when I get around to it). It's far from perfect (and makes massive use of these fantastic PowerPoint tips for the visuals), but it may give you some ideas / inspiration??
Click here for my PowerPoint presentation as a PDF.
Click here for my PowerPoint presentation as a PDF.
The thaw continues... positive news!!
The following is an edit of a comment I added to my Around The Dinner Table forum post about PTSD in parents and carers after the eating disorder has gone:
I must say that EMDR, administered and monitored properly, seems to be doing the trick. It is evidence-based. At first I was mega sceptical - it sounded like some kind of weird mumbo jumbo technique, but it does work!
I must say that EMDR, administered and monitored properly, seems to be doing the trick. It is evidence-based. At first I was mega sceptical - it sounded like some kind of weird mumbo jumbo technique, but it does work!
Friday, 18 November 2016
A week of moving mountains!
This week I have felt sooooo much better. I am feeling again. I have more motivation. I just feel free, like I've pushed my way out of a dark room and into the spring sunlight. I've done things I've found impossible to do over the past months: I've blogged, I've agreed to go away on a long weekend break with my husband (rather than heading for the safety of the back bedroom!), I've done some cooking, I've even made big inroads into reigniting my freelancing business after not being able to face work for months. I've also felt calmer, deep down inside which is where it's so important - the place where I was constantly anxious and on 'red alert'. My sleep has been more refreshing. Yes, I've still had nightmares unfortunately and I am still shouting in my sleep, but we're talking small steps, and this week has definitely been a move in the right direction.
Tuesday, 15 November 2016
Progress - self-help to get me through the PTSD
I am reading 2 books simultaneously, both by world-leading experts and pioneers of research, development and treatment of PTSD and its cousin C-PTSD (Complex Post-Traumatic Stress Disorder - which I am currently suffering from, triggered by the years of battling to get my son through his eating disorder). One is Professor Gordon Turnbulls Trauma - From Lockerbie to 7/7: How trauma affects our minds and how we fight back and the other is Bessel van der Kolk's The Body Keeps the Score: Mind, Brain and Body in the Transformation of Trauma. Obviously, with something like trauma, no two causes are the same. Also, in the second book, there is a lot of emphasis on childhood trauma and abuse. But the point is that, regardless of the cause of the trauma reaction, the symptoms and treatments of PTSD and C-PTSD are very similar.
Friday, 11 November 2016
'Processing' five crucial months in Autumn/Winter 2009/10
Something that's been coming to the surface loud and clear over the past week or so is the anger, helplessness and powerlessness I felt during the months from September 2009 to the end of January 2010 when we were trying to get my son diagnosed and treated for his escalating anorexia. This helplessness and panic has come across in my nightmares as well as in the daytime, which is kind of strange because I've been feeling pretty numb at the same time.
Thursday, 10 November 2016
And now it's time to fix me!
I've been blogging and it's been difficult (because of the C-PTSD which tends to make me panic at the prospect of doing 'big things' and retreat), but I've made myself do it. Taking a tip from the Recovery Contract which my son and I did to help him through the final years of his eating disorder, I've drawn up a list of challenges and am rewarding myself every time I do one of them. £1 goes into my piggy bank to go towards a self-soothe activity, probably a fully-body massage.
Post-eating-disorder - a definite shift for the better in my son
Anyone who's been in my situation, as the parent of a young person recovering / recovered from an eating disorder, will know: reporting something like this feels a little like 'tempting fate'. However here we go... Since the early summer or even earlier, I've noticed a definite shift in my son. A shift for the better. A shift that's pushed him over that '99.9-per-cent recovered' mark that I've found myself referring to over the last couple of years. A shift that has pushed his eating habits into the ranks of the 'normal' and his appearance from 'still on the thin side' to absolutely fine. A shift that has lifted a huge weight off my shoulders as I worried about relapse and / or that tiny remnants of his eating disorder may still remain.
Wednesday, 9 November 2016
Textbook case of Complex Post-Traumatic Stress Disorder (C-PTSD)
I've been busy reading up on Complex Post-Traumatic Stress Disorder (C-PTSD) - "a type of post-traumatic stress that results more from prolonged stress than it does from one-defining, life-threatening event" and how it differs from 'Simple' Post-Traumatic Stress Disorder (PTSD). Although there is overlap, C-PTSD symptoms are slightly different - which is good news for me as, for some time, I struggled to understand why my particular brand of PTSD wasn't a textbook case. Take my nightmares, for example, and flashbacks, neither of which are visual carbon-copies of the actual trauma itself, more 'representations'.
Sunday, 6 November 2016
"What you need to do to fix it is..." says my husband, helpfully...
"What you need," he said (having just returned from 10 days on the Goan coast), "is a holiday. We'll fly to Goa and you can spend a couple of weeks relaxing on the beach, maybe have a massage or do some yoga... That should fix the PTSD." "No, it doesn't work like that!" I explained for the Nth time running. But at least his 'helpful advice' for curing PTSD is better than: "Snap out of it / wake up and smell the coffee / get a life / there are people far worse off than you." At least he doesn't say that kind of thing.
Example of a flashback nightmare-in-disguise
Last night I was kept awake by Bonfire Night revellers until 3am. Yet from 3am onwards I managed to squeeze in 3 nightmares: (1) a Pure Evil nightmare where a serial murderer is on the loose, (2) a 'moving house' nightmare (regular anxiety-generated theme) where the removal men are about to arrive but I haven't packed anything and keep finding things that need packing, have run out of boxes, etc etc and don't actually WANT to move house in the first place, and (3) an example of a flashback nightmare-in-disguise. Flashbacks - and flashback nightmares - are a classic symptom of PTSD. However my flashback nightmares have always been slightly different from the 'textbook' version.
Friday, 4 November 2016
Who we were and who we are now
Seven years ago my life began to change in a way I could never in my wildest and most frightening nightmares have imagined. My 15-year old son was hurtling downhill into anorexia nervosa and getting worse by the day... hour... minute. The medical profession wasn't listening to me; after having finally got a referral from our GP for my son to be treated for his eating disorder we were waiting for a reply from CAMHS (Child & Adolescent Mental Health Services). I expected that reply to come by return, but it would be another three weeks or so before we would hear anything. And even then it was only to be told that my son was being put on a waiting list and it could be 18-22 weeks before treatment for his eating disorder began. It was the start of years of battling to get my son well again: battling with the illness and battling with the medical professionals.
But what of the 'me' I'd been before?
But what of the 'me' I'd been before?
Wednesday, 2 November 2016
A blog post I never published while suffering from nightmares
I came across this draft blog post which I never published - from April 2016, on the subject of nightmares and lack of progress from the professional therapy I'd been undergoing. Really, it's as true seven months on as it was then. The difference, though, is that I don't feel quite so helpless and I'll tell you why in another post very soon, once I've 'tested the water' so to speak because I don't want this to be another "This is it, I feel soooo much better..." (end of 2nd paragraph). In the meantime, here is that draft post from mid April 2016:
One small step at a time - progress!
This morning the cat woke me up from my slumbers demanding to be fed and I was abruptly jetpropelled from the land of dreaming to the real world. I was dreaming. Not a nightmare, but a dream. Some paper had been blown off my desk in the breeze and Shirley ('Sheila', the school nurse in my book) picked it up and read it. I was busy explaining to her that, although not brilliant, this was the first piece of creative writing that I'd been able to put together for MONTHS, if not YEARS, and that it had been really difficult to write, yet easy in a way, as that part of my brain felt as if it was thawing from the ice of numbness, dissociation and general deer-in-the-headlights inability to do very much except knit.
Monday, 31 October 2016
My C-PTSD: a curious mix of numbness and anxiety
During the months and years when my son's anorexia was at its worst and he was at his most volatile and violent, I was caring for him alone. My husband was working away. Okay, he was back at weekends which did take some of the strain off me, but for quite a long time he didn't 'get it' which raised a risk of him 'undoing' any good that had been done. Eating disorders have a habit of encouraging triangulation within a family and 'taking sides' with the person most likely to allow the illness to continue its destructive path. And so I found myself taking on the lion's share of the care - and, as a result, the flack that was hurled back at me from the eating disorder. There were all the other issues, too, like fighting to get him treatment and battling to find a common ground with his treatment team so we were all 'on the same page' and not colluding with the eating disorder or undoing any progress that the other may have achieved.
Overwhelmed and comforted by the response from other parents
If you're one of my Facebook friends you'll know that I've received a huge response from other parents as a result of yesterday's post about my struggles with PTSD (or Complex PTSD as I like to call it - the brain's response to sustained / prolonged trauma). I am far from unique; other families that have struggled with eating disorders experience this too. Of course everyone's experience is different, just like their experience of eating disorders is different. But I expect there are many common denominators.
Sunday, 30 October 2016
It's difficult to talk about the effect of the eating disorder years on me
I've talked about this on and off for the last couple of years or so - the PTSD-symptoms I've been having following my battle to help my son overcome his eating disorder. For quite a few months everything was relatively OK; I wrote my book, and a second book; I did talks on eating disorders; I appeared in the press, on the radio and TV talking about eating disorders in boys; I attended eating disorder conferences and, of course, I blogged here regularly. Then one day everything changed. I can pinpoint the actual day.
An update for you all - and the fantastic sweater!
I'm well aware that I haven't been blogging very much over the... well, for quite some time... and it's been difficult to get myself to pick up where I left off (more about that later). On the Ben front, everything is going swimmingly. He is back at uni, now studying for his Masters Degree and sharing a house with the same guys as last year. One of his home-based friends has joined the uni this year, so that's added to his growing list of student friends. He's been voted onto the committee of the university fantasy role-playing society for the third year running and has joined two further nerdy societies at the uni. So life is very busy for Ben and such a massive contrast with the way things used to be when he was battling with anorexia.
Thursday, 11 August 2016
Check out my interview in the Yorkshire Post from yesterday
Although I didn't get to see this Yorkshire Post report before it was published (on the growing problem of boys with eating disorders) I think the journalist has done a pretty good job, even though most of my comments have been paraphrased. Also bit of an odd choice of image - child's feet on scales!!?? But, all in all, it gets across the problem of BMIs being used as an indicator of the seriousness of an eating disorder, especially in boys, plus the fact that media images don't "cause" eating disorders but they can be a trigger in some people.
Tuesday, 12 July 2016
How proud am I of my son?
Remember that 18-year old young man who only lasted a few days at university in September 2012? Who found it impossible to cope with the culture shock of embarking on such a hugely different stage of his life when he was still in the later throes of his eating disorder?
Thursday, 2 June 2016
Phew: just reeling from 2 radio interviews this morning
Both BBC Radio Leeds and Radio Sheffield contacted me yesterday to see if I'd do an interview this morning about the rising problem of boys with eating disorders. I think the Radio Sheffield interview probably went better than Radio Leeds, but, then, the angles were different. Phew...
PS: My son finished his University Finals Exams on Tuesday and is now back home, currently singing at the top of his voice in the shower. And, as I've always said on this blog, when my son sings, all is well with the world. :)
PS: My son finished his University Finals Exams on Tuesday and is now back home, currently singing at the top of his voice in the shower. And, as I've always said on this blog, when my son sings, all is well with the world. :)
Monday, 16 May 2016
Talking about eating disorders at my son's old school this afternoon
If anyone had said to me a couple of years ago that I would be looking forward to doing a talk on anything, let alone a talk on eating disorders, I'd have said they were mad! But, strangely, since the eating disorders talk for parents and carers which I did at the Institute of Psychiatry the other year and the similar talk I did earlier this year in Edinburgh, I've discovered that giving talks on eating disorders gives me quite a buzz! How odd is that?! Especially for someone that's inherently shy! It's like some actors, I guess, who transform once in front of the footlights.
Sunday, 3 April 2016
This'll make you giggle
I just said to him: "I'm so proud of you, all these time-management skills and all that." "What's brought that on?" he said, suspiciously. So I told him I'd blogged about it and so on. "Aw, thank you!" he said. Then, giggling (in a little boy's voice): "Okay, mummykins... I've been such a good little boy, can I have five million pounds, please? Like NOW! In CASH!!"
That's another bonus. He's got his fabulous sense of humour back, too.
That's another bonus. He's got his fabulous sense of humour back, too.
One good thing that came out of his eating disorder
My son is currently writing his university degree dissertation and studying for his final exams at the same time as applying for a Masters degree and obtaining funding for it. Phew! But I have to say - his time management skills are awesome, they really are. Top notch. Helped, of course, by the fact that he's passionate about his subject: history. While other students leave things to the last minute and panic, the wheels of his time management ability are turning smoothly and on time. I am so very proud of him - and admire his dedication and organisational skills more than you could imagine!
Wednesday, 23 March 2016
Big flashbacks at teatime....
It's curious how the brain gets 'stuck' in the 'fight or flight'/Red
Alert response, isn't it? Take yesterday teatime for example (or evening meal,
to non-Yorkshire people out there!) Paul and Ben were eating fish in
breadcrumbs, chips and mushy peas. Ben commented on the fact that Sainsbury's mushy peas weren't a patch on Batchelor's mushy peas. Then there was a silence. And the 'stuck' part of my brain suddenly went into FREEZE. I mean F.R.E.E.Z.E...
Tuesday, 8 March 2016
What do my elbow, back and my brain have in common?
Back in August I had a bike accident. I broke my elbow and herniated a disk in my lower spine. Meanwhile I was onto my fourth (or was it my fifth?) course of therapy for the PTSD, anxiety and depression I'd developed two-and-a-half years before - a delayed result of my brain attempting to cope with what it had been through during the years when I battled to get my teenage son through anorexia.
It took around 12 weeks for my elbow fracture to heal. Eight months on I am still working on the tail-end of the disk herniation, very gradually easing myself back into normal tasks and even sport (I can't wait to get back on my bike, for example, but will need to rehabilitate myself with care).
It took around 12 weeks for my elbow fracture to heal. Eight months on I am still working on the tail-end of the disk herniation, very gradually easing myself back into normal tasks and even sport (I can't wait to get back on my bike, for example, but will need to rehabilitate myself with care).
Monday, 7 March 2016
Part #4 of my talk: "Eating disorders are not just a 'girl thing'"
So… Just to summarise so far… My 15-year-old son Ben developed anorexia over the summer of 2009. In the September I took him to the GP but it was the end of October before a referral was sent off to CAMHS (the UK-based Child and Adolescent Mental Health Services). It took a further month before I heard back from CAMHS only to be told that it could be 18 to 22 weeks before he was seen, which would take it up to around Easter time. I was told there was nothing they could do to speed things up and we would just have to wait our turn...
Thursday, 3 March 2016
A quick break from the talk transcripts...
After my SEDIG (Scottish Eating Disorders Interest Group) conference talk on Saturday about eating disorders in boys, one mum in the audience stood up. She said: "You've just told our story - it's identical. Except for one thing. Unlike your son, ours didn't make it; he passed away, aged 19." My jaw dropped. And with it came a rush of emotion. Here was I, describing our recovery story. There she was, reinforcing the fact that eating disorders can kill. They are deadly diseases. And no matter how punishingly hard you work as a parent to get your child through it, the eating disorder can claim them in the end.
Wednesday, 2 March 2016
Part #3 of my talk: "Eating disorders are not just a 'girl thing'"
Meanwhile all the warning signs were getting stronger by the day. Mealtimes were becoming difficult; everything had to be perfect, weighed out to the nearest nanogram to make sure he wasn't getting "too much".
Ben began to police my cooking in the kitchen and change recipes, striking through any "offending" recipes with a marker pen, and he would blow a fuse at the slightest thing.
Tuesday, 1 March 2016
Part #2 of my talk: "Eating disorders are not just a 'girl thing'"
Things began to get more obvious over the school summer holidays when Ben was at home and we were with him more.
By this time he was exercising like crazy, every day. He joined our local gym and would run there and back as well as doing all the usual situps, etc.
He developed a big interest in cooking and especially healthy cooking. He'd slim down recipes, cutting out all the fats and carbohydrates and make some quite weird concoctions that tasted pretty disgusting.
By this time he was exercising like crazy, every day. He joined our local gym and would run there and back as well as doing all the usual situps, etc.
He developed a big interest in cooking and especially healthy cooking. He'd slim down recipes, cutting out all the fats and carbohydrates and make some quite weird concoctions that tasted pretty disgusting.
Part #1 of my talk: "Eating disorders are not just a 'girl thing'"
It all started in the spring of 2009 when our son Ben was 15. He'd been quite chubby at primary school and had been bullied as a result.
But at secondary school he got into rugby and developed a new leaner, more muscly physique which he was very proud of.
And because he was the "guy in the rugby team" he was very popular – he had a great group of friends. So during those first two years at secondary school things were going from strength to strength. Life was pretty normal.
But at secondary school he got into rugby and developed a new leaner, more muscly physique which he was very proud of.
And because he was the "guy in the rugby team" he was very popular – he had a great group of friends. So during those first two years at secondary school things were going from strength to strength. Life was pretty normal.
SEDIG Conference in Edinburgh was really good
On Saturday afternoon I spoke at the SEDIG (Scottish Eating Disorders Interest Group) conference in Edinburgh about my family's experience of getting my son through anorexia. It was great to see so many dedicated people together from across Scotland – mainly parents who are still struggling with an eating disorder in the family but also one or two clinicians, and the speakers, chaired by the amazing Dr Jane Morris, Consultant Psychiatrist, Eden Unit, Aberdeen.
Tuesday, 23 February 2016
It's just life... going on as normal. Good normal. Just like anyone else.
Over this last week, my son and I have gone through a heck of a lot. Not to do with his (now thankfully gone) eating disorder, but to do with a GIRL. Let me explain...
Wednesday, 10 February 2016
So much going on at the moment!
If you look back on my blog posts over the last couple of years, you'll notice that they were a bit thin on the ground for a while. That was because of the Post-Traumatic Stress Disorder, etc which suddenly hit me about 27 months ago and which meant that I had to take a break from anything to do with eating disorders because I found it very triggering.
Wednesday, 3 February 2016
So how was my meeting with the guy from Leeds CAMHS?
My home city of Leeds is one of the first areas in England which is pioneering FBT (Family Based Therapy) as the primary model for treating adolescents with eating disorders in the city. It all goes back to Chancellor Of The Exchequer George Osborne's Autumn Statement in 2014 when he promised an extra £2 billion a year of additional funding for the NHS across various services including mental health. Leeds was one of the authorities that applied for funding and they were successful in their bid. So some of this funding is being used to roll out a new service for adolescents with eating disorders within the Leeds postcode area.
Tuesday, 2 February 2016
Yet another anti-obesity proposal that could be lethal for eating disorder victims
Even Adolphe Quételet, who invented the BMI formula, warned of its limitations |
Just as damaging, was the fact that my son's BMI was calculated in front of him at virtually every CAMHS session. So he was constantly being given the message that he was kind of okay and didn't need to put on much, if any, weight. Because if he did put on weight, he'd be getting "too fat".
Monday, 1 February 2016
What's the latest news about FBT in Leeds / England?
That's what I'll be asking the guy who's in charge of rolling out FBT (Family Based Therapy) for adolescent eating disorder patients in Leeds when I meet with him on Wednesday. My home city of Leeds is claiming to be a 'pioneer' in the rolling out of FBT in England and so I can't wait to hear what he has to say about plans for FBT being implemented in other parts of England. Already it's being implemented in Scotland - and England was lagging behind. I'm not sure what the situation is in Wales or Northern Ireland.
Tuesday, 26 January 2016
I'm finally happy with my Edinburgh talk!
For better or for worse, I'm a terrible micromanager. And you wouldn't believe the tweaking that's gone into my script and PowerPoint presentation for the talk I'm doing at the Scottish Eating Disorder Interest Group (SEDIG) Carers' Conference 2016 at the end of next month (Saturday 27th February). But I think I finally sorted it out. I think the main problem with my talk (which is called "Eating disorders aren't just a 'girl thing'") is that I've got such a massive story that condensing it into just 25 or 30 minutes has been a bit tricky, to say the least!
Download my blog posts on PDF for FREE - 2011-15
At last I've put all my blog posts (from 2011 when I began writing about eating disorders in boys up to the end of 2015) onto PDFs. So they're much easier to read than clicking around Blogger which can be a nightmare. The latter two years – 2014 and 2015 – tend to be a bit more thin on the ground than the other years because, as you will know if you've been following my blog, I was struggling with Post-Traumatic Stress Disorder type symptoms which hit me at the end of 2013.
Saturday, 23 January 2016
And while we're on the subject of BMIs…
My sister pointed out this article about a friend of hers whose healthy, sporty son was sent home with a letter from school telling his mum that he was overweight. This especially incensed the boy's mother because she herself had been a victim of anorexia as a young woman and understood more than most people about the dangers of the many things that can trigger an eating disorder.
Scottish Eating Disorder Interest Group (SEDIG) Carers' Conference 2016
I may have mentioned this already, but I'm speaking at the Scottish Eating Disorder Interest Group (SEDIG) Carers' Conference 2016 at the end of next month (Saturday 27th February). The title of my talk will be "Eating disorders aren't just a 'girl thing'"; indeed the main thrust of the conference, I believe, will be about eating disorders in males and in particular eating disorders and anorexia in teenage boys.
Sunday, 17 January 2016
Say NO to one of the most dangerous food labeling proposals to date
Join the Facebook page (see below) |
When I told my son Ben (who had a lethal exercise addiction when he was sick with anorexia) about this shocking new proposal, he said:
More about why I am donating royalties from my books to 'Mama Shirls' hospice
In a nutshell, Shirley (the school nurse I call 'Sheila' in my book Please eat...: A mother's struggle to free her teenage son from anorexia), gave so much to Ben and me during his long battle with anorexia in terms of support, love and someone I could trust to take care of Ben when he was at school that I wanted to give something back.
And when I heard her speak on Friday about her voluntary work in Uganda I had a brainwave...
And when I heard her speak on Friday about her voluntary work in Uganda I had a brainwave...
Saturday, 16 January 2016
Going over and beyond the call of duty... massively.
Sister Shirley Crawford speaking at school last night |
Why I'd like to go into Ben's old school to talk about eating disorders
When my son Ben fell sick with anorexia, back in 2009 when he was 15, his school was amazingly supportive. By early 2010 he was finding it increasingly impossible to be in school. He couldn't bear being anywhere near his peers, he was regularly breaking down in lessons and in the school dining hall, he was behaving irrationally and dangerously, he was exercising like mad at any opportunity and he was spending much of his time in the school medical centre rather than in lessons. And, of course, he was eating minimally throughout the day resulting in more and more weight loss.
Friday, 15 January 2016
Why is Leeds swapping the old treatment models for FBT? I can't wait to find out!
I'm meeting with the psychiatrist guy from Leeds NHS a week on Wednesday and I can't wait to find out what prompted Leeds to make the changes and move from multi-disciplinary CAMHS treatment for teenage eating disorders to a specialist eating disorders service for adolescents - and to adopt the evidence-based FBT (Family Based Therapy / Treatment) instead of the methods they were using when my son, Ben, was sick with anorexia.
Tuesday, 5 January 2016
Yay! The doctor from Leeds NHS has replied to my email.
And this is what she said: "It is lovely to hear from you and of your interest in the new children’s community eating disorder service soon to be established in Leeds. It would be very useful to involve you in our local service developments as we recognise that the involvement of young people and their parents is integral to the success of any new service plans. I’ve copied in my colleague who is the clinician leading the service model developments; I think he would be ideal to talk through our Leeds plans with as he has had a key role in identifying the evidence-base treatment to include in the service model." This is so exciting…
Monday, 4 January 2016
A mixture of excitement and sorrow
Excitement to see that my local NHS has seen the light, so to speak, and appears to be pioneering FBT (Family Based Treatment) for adolescents with eating disorders in England. Sorrow because we missed out on this fantastic opportunity. But that's water under the bridge; nothing can be done to change the past. However, hopefully, the future in Leeds looks BRILLIANT. Here is the email I've just fired off to the person in charge:
Sunday, 3 January 2016
A big huge massive snotty kind of blob
No, not me. I'm describing my anger, as suggested by my wonderful therapist (who sadly I will have to leave within the next week or so). I still have a heck of a lot of anger inside me, primarily concerning the way I had to fight CAMHS so very much throughout the 26 months Ben was receiving treatment for his eating disorder. There are so many, many reasons why I'm still angry – but of course much of it is about the past, about things I can't do anything about now.
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