Thursday, 20 July 2017

Processing anger - and the cardboard BMI calculating wheel

During the 18 weeks I was with Steve, my EMDR (Eye Movement Desensitisation and Reprocessing) therapist, we processed a ton of stuff relating to my son's eating disorder. (We picked out the key issues that were haunting / bugging me still in 2017 in the hope that, by focusing on these, other issues may get processed at the same time.) One of the major issues was anger. I mean, ANGER. Even A. N. G. .E. R. Anger at those in the medical profession who made my life more difficult as the parent of a teenage boy with anorexia and, I believe, may actually have prolonged my son's eating disorder.

Thinking about C-PTSD again... trying to make sense of it...

I thought I'd share something I posted on the Around The Dinner Table Forum (for parents of young people with eating disorders). A while ago I started a thread aimed at parents like me who may be suffering from post-trauma-related symptoms after years of battling with our child's eating disorder. It seems I'm not alone in experiencing typical PTSD symptons (or, rather, C-PTSD - Complex Post Traumatic Stress Disorder). Other parents are struggling with this too. So here's what I wrote today (in the hope that it might strike a chord with someone and help in some way):

Saturday, 15 July 2017

In many ways I've fixed the PTSD but in other ways it's still very much around

It's not surprising, really, that some of us parents will find that the eating disorder comes back to haunt us in the guise of medical issues either with our body or with our mind. In his book The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma, world trauma expert Dr Bessel van der Kolk talks about how trauma literally reshapes both body and brain, "compromising sufferers' capacities for pleasure, engagement, self-control, and trust".

News release going out to local press / media in Yorkshire

Leeds mum invited to join the board of national men's eating disorders charity

A Leeds mum who became a campaigner after her teenage son developed anorexia has been invited to join the Board of a national men's charity tackling eating disorders. Bev Mattocks Osborne, who spent several years fighting to get her son through anorexia is joining the charity Men Get Eating Disorders Too (MGEDT) as a Trustee. Men Get Eating Disorders Too was founded in 2008 by Sam Thomas as a response to the lack of awareness and adequate information and support for men and boys battling with an eating disorder.

Thursday, 13 July 2017

Honoured to be invited to be a Trustee of the Men Get Eating Disorders Too charity

I've known Sam Thomas, founder of the charity Men Get Eating Disorders Too, for some time. We occasionally meet up at conferences and so on. Sam does an amazing job. Not only is he the founder of this incredible charity but he campaigns tirelessly across the country, on TV and radio and in the press to raise awareness of the fact that men get eating disorders. If there's a report about males and eating disorders, then the chances are that the reporter will be interviewing Sam!

Monday, 10 July 2017

Lots of things to catch up on!

It's all been a bit quiet here recently. That's because I've been focusing on fixing the C-PTSD (Complex Post-Traumatic Stress Disorder) which I've been battling with for at least 3 years. After several therapists and therapy models, both NHS and private, I do believe it's finally been fixed (fingers crossed, famous last words and all that...) 18 sessions with Steve, my excellent private PTSD therapist (using EMDR - Eye Movement Desensitization and Reprocessing), seem to have worked wonders. Of course it's early days and I'm taking things slowly as I gradually rediscover who the heck I am after all this time and where I go from here. "Gradually" being the operative word. So more on this shortly...

Sunday, 21 May 2017

"Unpleasant scenes at A&E......" - a post from 8th October 2010 on the ATDT parents' forum.

October 2010 was a pivotal moment in both the CAMHS eating disorder treatment and Ben's attitude towards recovery. But it began badly. One morning the (other) school nurse called me to say that Ben had fainted in the sixth form common room and his pulse was abnormally low (again). There followed a massive battle for me to get Ben to A&E because he refused to go, claiming he had faked the fainting.

Wednesday, 17 May 2017

Why I hate BMI as an indicator of the severity of an eating disorder - or even that an eating disorder exists in the first place

In my PTSD sessions we are going round and round in (necessary) circles as my head tries to process the issues I was having with CAMHS during the first 7 or 8 months of my son's eating disorder treatment. One of the main pictures I keep getting in my mind is of the CAMHS nurse twiddling her cardboard BMI (Body Mass Index) indicator wheel every week. For CAMHS, as with many medical professionals, BMI is still trusted as an indicator of healthy weight, despite the fact that - at a so-called 'healthy BMI' - an eating disorder can be raging.

Tuesday, 16 May 2017

Parent support: what helped us and what might help you

The ATDT forum
I've been thinking about the support that was available for parents when my son, Ben, was sick with anorexia - because I, like most parents, was desperate for help even if that help was just a sofa, a cuppa and a friendly ear. I really hope that there is more support these days because parents really shouldn't have to go through this distressing, confusing and life-changing experience alone.

It's approximately 8 years (spring / summer 2009) since Ben first began to display signs that I now know were relatively typical of a male descending into an eating disorder: anorexia, in his case.

Friday, 12 May 2017

Notes from my meeting with CAMHS in September 2010

In September 2010, I requested a private meeting with the CAMHS psychiatrist. It had always been really tricky to pin down members of the CAMHS team outside of Ben's treatment sessions when he wasn't around. Usually it was a case of grabbing them for a few minutes as they were about to dash off. So I went along to this meeting armed with a clear list, agenda-style, of what I needed to talk about. I remember asking the psychiatrist how long we had, expecting her to say 20 or 30 minutes. When she said "an hour" I nearly danced with joy.

"Son back in school but still isolating himself..." - a post from 20th September 2010 on the ATDT parents' forum.

In September 2010, my son Ben went back to school after months of being at home - into the Lower Sixth Form. It wasn't a great success. The eating disorder was still raging. He found it difficult to handle the fact that he was "sitting around doing nothing" (i.e. not burning up so many calories). He found it difficult to integrate back into his friendship group and isolated himself by studying frantically in the library during breaks and free periods.

On top of this he wasn't sleeping. In fact insomnia became a major problem as the constant maths were going round and round inside his head: input, output, input, output. How much exercise would he have to squeeze in to work off whatever he'd eaten that day... And meanwhile, despite promises to hand back control of his food intake to me (constant promises throughout the whole of the summer), CAMHS simply weren't doing this.

"Still can't get son to eat enough..." - a post from 8th September 2010 on the ATDT parents' forum.

The summer of 2010 was a nightmare on so many fronts - and if you drew a straight line on his weight chart from the middle of May to the date I posted the following on the Around The Dinner Table Forum (8th September), you would see a steady drop in weight. With this came a deterioration of mood and behaviours yet CAMHS were insistent that Ben had arrived at a stage where he could manage his own food intake. In fact they were keen for him to do this right from the start.

Tuesday, 9 May 2017

"Mum hatred, threats to run away, etc" - a post from 3rd August 2010 on the ATDT parents' forum.

The wonderful Charlotte Bevan
Just in case you're wondering who 'Charlotte' is... the mum I refer to in these early Around The Dinner Table Forum posts... she is, or rather was, the most amazing and supportive fellow-mum you could ever imagine. Before she passed away from breast cancer in January 2013, Charlotte Bevan supported many, many families, not just here in the UK but abroad, too. She was almost invariably the mum who popped up first with support, help, advice and a shoulder to cry on whenever new members to the ATDT forum posted for the very first time. She would also call us on the phone whenever we posted up an emergency cry for  help. On top of this Charlotte was constantly advocating for better treatment and a whole range of other things to help families facing an eating disorder. To find out more about Charlotte, click here to go to the post I wrote after hearing about her death, back in January 2013. Meanwhile, below is a post I wrote on the ATDT forum on the 3rd August 2010, during the 'summer from hell'.

Monday, 8 May 2017

At the end of my tether in August 2010...

As the summer of 2010 went on I became more and more depressed, exhausted and frightened. We weren't having our regular CAMHS sessions as the treatment team were taking their own vacations. I was also having to rely on emails sent to the CAMHS secretaries if I had any concerns. Following our return from France, I sent the following message to CAMHS as a summary of where I felt things were heading.

"Holiday / vacation... and the eating disorder came too..." - a post from 2nd August 2010 on the ATDT parents' forum.

In early August we arrived back in the UK after the 'holiday from hell' in France and I posted the following on the Around The Dinner Table Forum. I'd been instructed not to talk about food; indeed to take a break from the eating disorder for the duration of the holiday. So every time I mentioned food Ben screamed these instructions at me. Yet right from the 'word go' we had serious issues starting off with a nightmare lunch at a pub en route to Portsmouth.

It was one heart-breaking experience after another culminating, on arrival at at our hired villa, an Almighty meltdown which resulted in my husband in tears threatening to return to the UK the following day. And so it went on... meltdowns... shouting... suicide threats...

"Screaming, shouting and bullying" - a post from 5th July 2010 on the ATDT parents' forum.

I was getting so very, very tired, feeling utterly powerless and my morale was at rock-bottom. At CAMHS I was being given the impression that Ben's eating disorder wasn't too bad yet the hours... days... weeks... months... I was spending with him at home was telling me something very different. Although my gut instinct screamed out for me to do something... to take action and insist that Ben eat... I was getting all these messages that I should be doing the exact opposite and taking a far more relaxed attitude about food: to trust Ben to be eating for himself and to shut up about food.

Hmn... feeling a little murderous... - a post from 1st July 2010 on the ATDT parents' forum.

In June 2010 we received the bombshell that our helpful dietitian was being withdrawn due to funding issues. Very quickly the shock turned to anger and I posted the following (edited) thread up on the Around The Dinner Table Forum. I'd hired a private dietitian to replace her. However I quickly realised my mistake; the private dietitian simply didn't have sufficient experience in dealing with eating disorders and, on top of this, CAMHS were cross with me for going behind their backs and doing this.

Meanwhile I was so very, very angry about everything as can be seen below. I was also panicking and desperate; it was as if no-one was listening to me or taking my concerns seriously. It also shows how difficult it was to contact the CAMHS team, relying on the secretaries to pass on messages which they didn't always do. (Please note that I've removed any reference to specific weights, BMIs or calories.)

Sunday, 7 May 2017

Something's been bugging me all weekend...

Of course I can never, ever expect to read every fellow parent's blog about eating disorders. The same goes for any books they may publish or articles they may write. But I do know why I, and the other blogging mums who I know, do it. To raise awareness of eating disorders (in my case that boys get eating disorders) and to help other parents identify symptoms, get speedy help and to find support from other parents who've 'been there, got through it'.

No other reason. 

The animal instinct to 'protect our young' kicks in when we see our child suffering

I am not a scientist or a physician, but - as a mother of a boy who's been through and recovered from anorexia - I know what a punishingly difficult illness this is to treat successfully. I've read a ton of stuff over the last 8 years as well as attending eating disorder conferences, talking with eating disorder professionals and mixing with other parents who have been through an eating disorder in the family. What comes across clearly is that some treatment models work for some families whereas other models work for others. And some are more evidence-based than others, especially when it comes to treating adolescents with an eating disorder. So, to me, it's not rocket science that clinicians employ the evidence-based model first and if that isn't working, then try something else.

Friday, 5 May 2017

Oh how I can feel the desperation, fear and helplessness I felt back then!! A post from 23rd June 2010 on the ATDT parents' forum.

This truly was the start of the hellish summer of 2010. My 16-year old son Ben was sliding downhill in both weight and mood. I felt increasingly gagged by CAMHS and under instructions to take a back seat, to not talk about food and to focus on things that were "helpful" to Ben instead.

It seemed as if it was very much Ben, CAMHS and the eating disorder versus me. The triangulation continued with my husband who was also taking sides. And much of this in-fighting was done in front of Ben. The eating disorder loved it!!