Friends

We can argue about methods, we don't all agree on details, and I've a fairly strong feeling that we're not all always talking about exactly the same thing at least some of the time, but what the internet and real life community that is FEAST has always done is to give parents the chance to connect, to talk to make friends.

There are formal ways of doing this. FEAST are working on more of them. There have always been informal ways of doing this. Connecting with others is soooo worth it.

One of the first people I met online was Mary. We had daughters with eating disorders. That was about all we knew we had in common. They weren't the same age. They weren't the same eating disorders. Nevertheless we talked, we laughed, we made friends. We visited each others homes. We continue to share pictures of children and grandchildren.

It's not evidence-based, its not without its risks, but making friends, having company in this journey, has surely got to be the best!

when we went waterfall hunting at Mary's House

Coming out fighting

I started this blog in 2005 when blogging was beginning to be fashionable. Like many a blog it has become moribund over the last few years but I have resurrected it from time to time to emphasise that I still support FEAST. The last couple of weeks seem to have produced a sort of blogging diarrhoea in me so here goes again;

I can't remember at which conference I added the boxing kangaroo picture.  It is, of course, a reference to Janet Treasure's animal analogies. The kangaroo is too nurturing, holds the patient too tight, doesn't let her her (and in these things it usually is her, not him and never they) develop their own identity. Knowing how very easy it is to fall out of the "system", to have glaringly obvious needs ignored rather than met in a chaotic system that often appears more mentally unwell than the patient I bloody well will hold me and mine close and what's more I'll fight for them. I do realise though that just punching people, however tempting it might be, isn't constructive and won't work.

I know a boxer. Boxing hasn't revolutionised his life. He struggles and is as an adult dependent on his parents. But boxing gives him a status, an interest, a purpose. It could be dangerous but it really isn't because he doesn't lash out, he trains, he uses technique, he knows his equipment. I admire him. I am going to follow his example. The good and the bad of this conference has reinvigorated my fighting spirit, but I'm going to train hard and buy a new pair of gloves, not just hit out. I will be much more dangerous that way.

As a very brave person has just tweeted "empowered people are dangerous. They know how to survive"

Oh THOSE people

My intention after my initial back to blogging post was to write three posts, one on each of the reasons why I am still FEASTing and then publish the lot (and be damned to indifference or "what's a blog?" I expect).

However today, while I have proper work to do on the most important part of why I was ever FEASTing in the first place, meeting friends from around the world, I have become distracted, much as my eldest granddaughter does by the sweets and toys in the supermarket by discussion on treatment types and exactly what FEAST is.

I have heard that FEAST is "American" (sadly an insult as used at the time). It is not. The board and the professional advisors come from as far afield as the USA, Canada, Australia, New Zealand, Israel, the UK and Greece. Members come from more countries than that.

I have heard that FEAST has fixed ideas perhaps particularly as to cause. In the same day I head that FEAST has rigid ideas about eating disorders being brain disorders and food being the magic bullet, and that FEAST is clinging on irrationally to agnosticism as to cause - they can't both be right.

I have heard that FEAST is only about one form of treatment. It isn't. Members have used many forms of treatment or found none. Families have gone dancing off into the recovered sunset after successful treatment (be that outpatient, inpatient, residential treatment or a combination) others of us are still not quite there and may even after years be wondering quite what we are treating. Some families have lost their children.

I could blab on forever, but I don't have to. All I have to do is to post this. THIS is what THOSE people believe although there's a lot more detail on the rest of the website
https://www.feast-ed.org/

1. Eating disorders are biologically based mental illnesses and fully treatable with a combination of nutritional, medical, and therapeutic supports.
2. Parents do not cause eating disorders, and patients do not choose eating disorders.
3. Parents and caregivers can be a powerful support for a loved one’s recovery from an eating disorder.
4. Blaming and marginalizing parents in the eating disorder treatment process causes harm and suffering.
5. Patients should receive evidence-based treatment, when available.
6. Families should be supported in seeking the most appropriate treatment in the least restrictive environment possible.
7. Food is medicine: all treatment should include urgent and ongoing nutritional rehabilitation.
8. When the family is supported, the patient is supported.
9. Siblings and parents are affected by a family member’s illness; their needs deserve full attention, too.
10. Parents have a unique capacity to help other parents with support, information, and the wisdom of experience.
11. F.E.A.S.T. is committed to a coalition-building model of advocacy work that requires mutual respect among caregivers, professionals, and patients. 

Nanny's still FEASTing

I recently lost my keys and in the awkward time between realising that they were lost and the happy realisation that the sofa had eaten them, I had to report their loss to the police. They actually have rather a lot of distinguishing features, most obviously that there are so many of them. Work (three sites), home, car, bike, shed, church, my mother's..... but perhaps the most identifiable is a key ring similar to this but wooden in the form of butterflies, stating proudly that I belong to my two grand daughters.

I do.

I'm officially old. Nearly a year older than last time I blogged.

Hopefully that gives me the excuse to repeat myself.

I STILL support FEAST.
I'm still somewhat of a thorn in the side of people, whether they are hostile or friendly, who think that FEAST stands for one thing, only welcomes one kind of carer.
I am still fascinated by the history of the treatment of eating disorders. This means I will still go on and on about "Maudsley" or "FBT" or "CBT" when others have become bored rigid
I still appreciate most the personal contact with people and the genuine friendships made through FEAST over the years.

Still FEASTing after all these years

I'm feeling fairly old these days. I have grey hair and grandchildren and my response to the recent re-branding of BEAT is the same as my response to many a re-brand "I remember the last time..." 

In spite of feeling old I'm having to work harder in my paid employment than ever before. Instead of winding down for the last couple of years before retirement a combination of the raising of the pension age and pressures on all public services mean that I'm now in the middle management role that I have successfully avoided for years.

I've always been pretty sceptical and by now my cynicism arteries are well and truly hardened. I know there's no magic wand to cure eating disorders and that even when evidence based treatments are available they are often offered at a sub optimal dose in inappropriate conditions. I'm also well aware now, indeed I had my suspicions decades ago, that I'm probably as likely to find helpful advice on how to live with and love more than one of my close relatives here as at an eating disorders conference.

And yet today this tired, cynical old woman was inspired. At an eating disorders conference.

I went to half of a day of this. It isn't fair to comment on the conference because I only saw the tail end of it. I don't think it presented a very positive or game-changingly useful picture but I may well be wrong.

What I can comment on was how delightful it was to meet with a fellow parent and discuss FEAST and the forum, to share how useful the science presented there was to educated parents looking for real information. It's easy to get blase about what's out there - well it is if you are as old and cynical as me. However there still isn't enough support and real information for parents. F.E.A.S.T. wasn't there in our early days. I am glad that it is now. I know that it needs to be for a long time into the future.

Half way through my half day a clinician who I had been half avoiding asked me "are you still FEASTing" I am proud to have given a whole hearted answer of "YES"

another reblog

link

hints and tips

Logging on to Twitter (something I'm not very good at using) this morning I was faced with this.


 

 Do they have any tips on how I can reduce the risk of my child developing mania or asthma?

There ARE things parents, schools, medics, society can do to reduce the risks of all three, but do we see non-specialists confidently sharing them with the world in order to be helpful to all? No, but then again Eating Disorders aren't like other illnesses, or are they?

Someone is wrong on the Internet

 One of the side effects of frantically googling for information on a specific subject is finding "related articles". When looking for the useful study presented at last year's EDIC instead I found this

It's on a site that certainly should be reputable. It's a report on a study by some pretty major figures in the ED world so what's not to like? Well quite a bit to my mind. OK, as a parent of a child who developed an eating disorder I'm defensive. I made a lot of mistakes during her childhood and I regret them all. However I don't think that, on their own, they caused her eating disorder and I thought that such ideas had gone years ago. Yet here's a study looking at only such "risk factors". All links mentioned  (and it does explain that they are not proved) are between potentially fatal illness and parenting and there's nothing about the possible genetic and other environmental influences that may influence the development of little understood and woefully under-researched disorders. Those involved in eating disorders "Prevention" might be as disturbed as those who debate with them. Negative energy balance is tangentally linked, in the "related articles" which all explain what a good thing it is.

REALLY?

well doh!

This isn't really a post. It's more of a repost of someone else's blog, found via a retweet of the same.

I like this piece, although I do wish it didn't end as an advert.

It reminded me of a study I heard about at the EDIC conference last year (Recognising and Managing Physical Problems on a Specialist Eating Disorder Unit) which I can only find in this very difficult format. As the title explains it's about the physical consequences of long term Anorexia Nervosa. They're dire. My first reaction was "well doh of course they are". My reaction now is "why the hell is  this important study so difficult to find. Every clinician should know this and they obviously don't"