Friday, August 30, 2013

Inversely related?

I wonder whether my need to "talk" online in inversely related to the amount of talking I'm doing offline. Certainly, over the past few days, with no voice beyond a painful croak, I've spent long periods of time reading (discovering new blogs and tweeters that I haven't "met" before) and writing in response to their posts.

Actually, it would be more true to say that the reading has made me do a lot of thinking. And since I can't talk, my thoughts are constructing themselves in the form of written responses. It occurred to me this morning that I may as well seize the moment and put some of these thoughts on the blog.

Yesterday's reading started with seeing a tweet from Another Mum that linked to the blog of another mother of a teenager with an ED. I read. And read. And read some linked blogs. And read some suggestions that emerged after I commented on one post.

It isn't possible to write a single blog post that covers all the scattered thoughts I've been having since. But essentially, I learned a lot about Family-based Treatment (FBT), the Maudsley model and the way that many parents of children/teenagers with EDs now support them through the process of recovering... and unsurprisingly this raised, for me, all sorts of memories and questions about how my family were treated when I first became ill.

A year before I became ill.

 I stopped eating, aged 10. It was deliberate. But it took me years to admit it was deliberate. At the time, I said that I couldn't swallow. I was admitted to the general children's ward of a local hospital at the point at which I could no longer walk. The eventual diagnosis I was given was ME, after 6 months in hospital, plenty of Fortisips and Fresubins, physiotherapy and not much else, I started walking again. I was discharged from hospital. And that was that.

I've never really accepted the ME diagnosis, except insofar as my decline began about 6 months before I was admitted to hospital when I picked up an ear infection. At the time, the ME advocacy community (I joined Action for ME and another group) were very adamant that no psychological element existed within ME... and I knew that my problems were primarily to do with my sadness and anxiety. I'd become unhappy at school since a house move and not eating (and then not walking) met my needs: I didn't have to go to school because I was poorly so I didn't have to see the girls who were unkind to me or the teachers who expected my emotional maturity to meet intellectual ability.

It's clear, with hindsight, that the team of professionals at the hospital weren't sure what was going on. I was under a paediatrician and paediatric psychiatrist. But I didn't see the psychiatrist very often. She spoke to my parents a few times and told them how she thought they should be bringing me up, for example stating that unless they paid to send me to an independent girls' school, I'd be unable to leave the hospital school because I was unsuited to a state secondary school.

It also feels as though there was some awareness of anorexia among the team. One doctor proposed putting me in a side room, under a regime that was the currently-accepted treatment programme for anorexia (i.e. bare room until you gain a kilo, then you perhaps get access to a tv for an hour a day). Luckily for me, this didn't happen. A month after I was admitted to the general ward, a bed became available at the psych ward in the local children's hospital. My parents and I together decided that the move wouldn't be sensible at that point because I was settled on Ward 20 at EBH. Perhaps this was our mistake. Perhaps if I'd gone there, my refusal to eat would have been addressed differently. Perhaps if I'd gone there, I'd have had follow-up after discharge and the eating disorder wouldn't have been allowed to fester in secret for nearly a decade. But "what ifs" are something that I try to avoid, even though I think I allow myself incredulity that the medical professionals did no follow-up at all after a 6-month stay in hospital for a serious, if somewhat confusing, illness.

However, the main result of my reading yesterday was a small glimmer of realisation that the experience of spending 6 months in hospital aged 11 and 1 week, even with regular parental visits, is major. Some parents in the ED advocacy world describe such IP admissions as a "parentectomy"... and that term transported me, in all its painful rawness, to the first night I spent alone on Ward 20. I was told off for being selfish when I cried for my mum. It taught me that I shouldn't need people or be dependent. Rationally, I understand that this is a bizarre belief for an 11-year old to internalise. When a child is in primary school, she is allowed to want her mum or dad. She isn't a grown up.

I was struck on these blogs at how involved the families are in their daughter or son's treatment. And it made me wonder whether that "parentectomy" is one of the reasons why the notion of having family involved in treatment seems so alien to me. In my experiences of adult IP treatment, even as a teenager, parents coming "too often" or being "too close" wasn't just frowned upon but was written down as an observation in the notes as evidence of potential inappropriate relationships. I know this because I've read those nursing notes and been shocked and angered at how judgemental the phraseology is.

It feels as though the concrete has set in my case. We have 24 years now of my ED being my own demesne, private to me. Neither my parents nor I would know how to cope with the FBT model.

But I'm glad it's there. And I hope beyond hope that time will prove that it can prevent EDs from being as longterm as they have been for many people of my own generation.

Thursday, August 29, 2013

site traffic

This amused me.

The search terms that have resulted in hits to this blog.

And the leaves that are green...

I put a link to a post from May last year on Twitter yesterday and now feel embarrassed that the latest entry is 3 months old.
Sending that link reminded me that I needed to reply to an email from Beat. Their media volunteer co-ordinator had emailed me after I filled in the survey about disparities in care while at university. She asked for a paragraph to describe my experiences. Even when I tried to split it into two single paragraphs (each relating to one of the two occasions when I was referred from BSHMFT to CPFT), my response was a "loose, baggy monster" of an email.
But I don't know that I could condense any further since both of those periods under the "care" of CPFT were loose, baggy monsters of failures.
I don't think I've talked much on here about the first referral, back when I went up for undergrad in 2001. At that time, there wasn't an adult eating disorder service in Cambridge. So I went to the "low weight clinic" of a consultant who specialised in personality disorders, Dr Jonathan Dowson. His advice to me during the 18 months I spent on his service included buying full fat milk so I'd put weight on ("if there's no room in the shared college fridge, put it on your windowsill overnight or buy a new one each day"). He also wondered aloud why I couldn't just get better because "you're an intelligent girl".
By the end of 2002, I knew I needed better help than this and managed to get re-referred to Birmingham. On that occasion, flexibility meant that I didn't have to give up university: the Cambridge GP, Birmingham GP and BSMHFT came up with a compromise whereby I could be a long-term "temporary resident" at the Cambridge GP, maintaining my registration in Bham... and therefore my eligibility to be seen by the ED team up here. In a pre-echo of the events of 2010, this arrangement turned out to be crucial because when I finished my Part I exams in June 2003, I was very unwell. It was lucky that everything was in place for me to be seen immediately when I returned home because I needed to go into hospital.
I've no idea what would have happened if I'd still been reliant on the "low weight clinic" at Addenbrookes. Maybe advice to add cream to my full-fat milk?!

Talking about the past is incredibly easy in comparison to talking about the present. The title I chose for this post immediately came into my head and it's not hard to analyse why. It's the end of August, the holidays are ending and, as Simon and Garfunkel sing, "the leaves that are green turn to brown". But I suppose it's also symbolic of my emotions at the moment.
I have had a pretty rough few months with my physical health. No one can say definitively how much it is related to my ED.
Yet sitting here, exhausted after coughing all night, with no voice to speak (let alone to sing), I'm caught in a disparity between believing that this is a time for newness (a new term for ballet! could I find a job or a new evening class? should I plan to move out? what part should I audition for in the new show?) and feeling that my body will not let me do any of that.
I am aware of the paradox: the desire to punish my body for failing me will only make it fail me more. And I am also aware that my "insight", much praised by doctors and other MH professionals over the years, doesn't always translate into the necessary action.