Thursday, May 31, 2012

HfC 31 Reflection

The prompt is: "Reflections
Think back/look back over the previous thirty days. How did you find this challenge? Did
you find anything difficult? Were you pleasantly surprised in some way? Did you learn
anything from your writing? Did you read other people’s blogs? Did you learn anything
from others? If you could write one sentence to express what you want people to know
most of all about eating disorders and recovery from this blog challenge what would it be?
And why?"

This challenge literally was a challenge for me: it forced me to try to articulate my current state both with recovery and with the anorexia, which, in turn, helped me to think about why certain aspects of recovery are hard for me; it asked for a regular commitment to blogging which I've never previously achieved; it helped me overcome my reluctance to write about ED stuff in a public forum and (unbelievably for me) it prompted me to share one blog post with my facebook friends. The incredible response from friends is something that I will always treasure: both through personal messages and through comments on the link that I posted.

Reading blogs from a selected few other participants has been particularly valuable in re-igniting my hope that full recovery is possible. Some bloggers are inspiring in sharing their recovery and that is helpful to *all* of us with EDs, given the likelihood that the people we meet again and again in treatment are not the individuals who have achieved successful recovery - and therefore it often seems as though there are no recovered anorexics.

The one thing I'd like people to take away from the challenge is that all of the bloggers are very different, just as it's impossible to stereotype or pigeonhole people with EDs: we're all individuals. We experience illness in different ways and recover in different ways. The most important thing is to start to redefine experiences that seem like set-backs as just another step on the long journey. Eventually we will get there. We must hold on to hope.

Wednesday, May 30, 2012

HfC 30 Someday


I'll pick up some food in the supermarket without turning it over to read all the numbers. I might even put it in my basket.
I'll be able to plan holidays without even thinking about the food there, let alone feeling crippling anxiety about it.
I'll look at the yummy pastries, cupcakes and muffins in Starbucks or Costa and be able to choose one. I might be able to order it. I might be able to take a bite. Someday I might be able to eat the whole thing.
Someone might fall in love with me and I'll know what it is to be in love.
My dreams of being a mummy might come true; I'd be able to knit for my own baby instead of lots of things for other people's babies (because when I knit those things, happiness for my friends is intermingled with my own sadness about not being a mummy myself).

Someday I will no longer simply be existing: I will be living life abundantly and enjoying this amazing world.

Tuesday, May 29, 2012

HfC day 29- My song

Mary, Mary: Can't Give Up Now

This doesn't need any explanation. I heard it a few years ago when a close friend sent me the link and it speaks to me every time I hear it.

Monday, May 28, 2012

HfC day 28 Reality Check

I have lots of stories that fit into this category because anorexia does things to your body that are deeply unglamorous. For example, losing control of my bowels in the street because of muscle wastage. Diarrhoea in hospital at the start of refeeding - when on bed rest and not allowed to shower - then collapsing when I stood up and having to go to A&E aware that I probably stank of Veg Tikka (that day's lunch on the ward) and poo. Undignifiedly being wheeled into A&E by a health care assistant because of being on bed rest and therefore not allowed to walk. Her taking me into the loo with her because of being on obs ... so I had to watch her wee (and of course, when on obs, someone is always with you when you go to the loo, or wash or shower or sleep or dress or everything). Then seeing a gorgeous junior doctor and wishing I could impress him or at least feel equal to him but knowing that, to him, I was just a mental health patient in a tracksuit, smelling of tikka and diarrhoea with a painful hip that needed x ray to check it wasn't fractured. With hindsight, another factor that I didn't understand at the time was that I was emaciated. And emaciation is ugly. Hairy faces but hair loss on the head. Bed sores if not sleeping on an air mattress.

Other ED behaviours are similarly unglamorous: peeing oneself during self-induced vomiting; being sick in a dirty public lavatory because of the desperation to be clean inside; panic mounting in supermarkets while staring at the calorie counts and fat grams, knowing people are staring... I could go on.

But I won't. And none of this should ever be used by people with EDs as evidence that they need to work harder at being "ED" : these horrible situations (bedrest, collapsing, emaciation) are *not* success at being thin. They are truly distressing experiences and something that no one should have to live through.

Furthermore, I know that the severity of emotional distress in EDs can be as appalling for people of any BMI, whether it's 11 or 32; whether they have AN, EDNOS, BN, BED.

A positive picture to lighten the mood. The kind of fun that I couldn't have when all those awful things were happening :-)

Sunday, May 27, 2012

HfC day 27 I can't believe...

I can't believe that I:

* have the two most amazing dogs in the world who love me
* have some wonderful friends
* have people who love me, despite all my flaws
* came through some difficult times and that those setbacks didn't set me back from carrying on with uni and going on to postgraduate study
* got my PhD

Thursday, May 24, 2012

HfC day 24 - off topic

I didn't fancy writing about today's prompt but instead thought it might be worth sharing something that I heard yesterday on Radio 4's excellent programme All in the Mind. They reported on a study that has used those 3D body scanners (more commonly seen in airport security) as a tool for overcoming body image distortion in patients with EDs. It sounded like a potentially fruitful area for further research and a big advance in previous ideas for challenging distorted body image. For a while, video diaries were used in the unit where I was a patient but I found those to be distressing (standing in your underwear looking at a life size version of yourself projected in front of you). Some friends did gain some enlightenment from it, becoming aware that their bodies looked underweight. However, I think I was in a position where I hated seeing myself and hated standing in a room in my underwear with 2 or 3 fully dressed therapists so much that the size perception thing completely passed me by. I imagine that with the body scanners, patients can be fully clothed and then see the scan image as a 3D picture that shows size alone. So I'd definitely be open to participating in something like that.

Anyway, if you fancy a listen, have a look at the All in the Mind website

Wednesday, May 23, 2012

HfC day 23 Quotation, quotation, quotation

I have a few quotations stored on Facebook that mean something to me about EDs/recovery. The first mostly expresses how I feel about accepting who I am and what it means to be me, therefore not judging or berating myself for things that have happened in my life: One must still have chaos in oneself to be able to give birth to a dancing star. - Nietzsche

The second is from a childhood icon and just makes me smile: 'Never eat more than you can lift.' (Miss Piggy)

I came across the third when research Middle English texts for my degree. It's from a book of advice for religious people and speaks against excessive fasting, using the metaphor of a lamp without oil to describe fasting that is not accompanied by acts of charity:
'þat fastingge withoten elmesse is of mith
As is þe lampe withoten olie and lith.' (MS Advocates 18.7.21 after Isidore)

My final quotation comes from the wonderful 'Number One Ladies Detective Agency' series of books by Alexander McCall Smith. The main character, Mma Ramotswe, is Botswanan by birth and is proud to live there. She is also proud of her "traditionally built" figure: 'Mma Ramotswe had never been able to understand that, and considered it one of the worst features of modern society that people should be ashamed to be of traditional build, cultivating instead a look that was bony and positively uncomfortable. Everybody knows, she thought, that we have a skeleton underneath our skin; there's no reason to show it.' (Alexander McCall Smith, Miracle at Speedy Motors)

Tuesday, May 22, 2012

HfC day 22: keeping me

In previous blog entries for the challenge, I've mentioned the difficulty that arises from feeling that anorexia is inextricable from my identity. I don't want to write a long post for this one, partly because it is something that's particularly pertinent to my experience of the ED and therefore something that I feel uneasy about sharing too widely. So instead, here are a few random thoughts:

  • When I was in therapy for the first time, pretty solidly from April 1999 to Sept 2001, one of the really important issues that we dealt with was the fixed idea I had that people only recognised me because I had very long hair, I was skinny and I always came top in exams at school and won the form prize. I didn't really have any concept of a sense of self beyond that. The amount of identity that I gained from exams is very clear from the fact that the descent into crisis (described in the previous blog entry) happened in the year after I left school. Without school and exams to define me, who am I? The answer seemed to lie in the skinny bit: I'd been restricting my eating for the past 8 years or so in order to maintain that shape (which stood for lots of things: childhood, vulnerability, control, disgust at my own body). Once the school bit of identity had ended, there was more room for the anorexic bit to take over. My therapist was really proud of me when I had my hair cut at the beginning of 2000, because it was a sign that I realised I was an entity separate from the parts that had been so important. 
  • It's not a coincidence that lots of people with EDs have low self esteem. Problems with self esteem are indicative of a lack of self identity and the ED can provide that. I've heard a psychologist refer to an evidence base suggesting that this is more acute with anorexia because, bizarrely, it is "desirable", whereas it's more common for people with BN or BED to hate the diagnosis and not want it to be part of them.
  • In hospital last year, some friends made me a poster with a drawing of me and lots of words to describe me. The caption was Linda ≠ anorexia. I stuck it up on my bedroom wall.
  • Finally, last year when I refused to participate in body image group, I set myself a project. I made a sketch book in which I used old photographs to draw images of myself from babyhood to the present. The process of drawing helped me to see aspects of my quiddity - my me-ness - that are noticeable at all ages and, crucially, at all body sizes. Indeed, it also pointed to something that a wise dietitian once told me: she said that when she first saw me in the summer of 2003 when I'd been admitted to hospital and was very poorly, I was a shadow, who sat curled up hiding in the hood of my sweater. She couldn't detect a personality at all. But then, as refeeding happened, she said it was like a butterfly coming from the cocoon, and she grew to understand why lots of the nurses and medical staff remembered me from previous admissions and had said nice things about me. 

The inextricability of where ED stops and where I begin is still a big problem for me. But writing this blog entry has reminded me that, for others at least, being Linda is not synonymous with being anorexic.

HfC day 21 (a day late) Healers with Heart

I didn't get round to blogging yesterday; however, I did pluck up courage to share this month's challenge with my FB friends... and got an amazing response. In addition to more visitors to the blog than had ever been on one day before (by about a factor of 10), friends wrote some really touching comments on my FB post and a few even sent messages, which were incredibly powerful and made me feel very loved. Given that the idea of sharing on FB was terrifying to me - because writing about my feelings and then allowing people I know the chance to read about them feels a lot like running naked through a big party of all my family and friends - I was overwhelmed by the encouragement.

However, I don't want to miss yesterday's prompt because, having previously included a letter to Cambridge and Peterborough Foundation Trust, who completely failed to act as "healers" to me, let alone "healers with heart", I want to balance the scales by mentioning the professionals that have helped me.

I was first referred to the ED team at what is now Birmingham and Solihull Mental Health Foundation Trust way back in 1998. My first meeting was with an inexperienced young doctor and I'll admit to finding it traumatic. It was the first time I'd had a psychiatric assessment (I don't remember being assessed like that by the psychiatrist I was under when I was 11). I didn't want anything to do with the service and was cross because she advised against me going off to uni. She was, of course, right that it was not a good idea for me to go at that time, as I realised when I visited a friend in London a few weeks later and couldn't walk unaided down the street. 6 or 8 weeks after that first meeting, things had reached a crisis point. I received a letter one morning saying that the next appt with the ED team had had to be postponed. This threw me into sheer panic: the thought that someone might be able to help me had been my focus and I couldn't cope with another few weeks of how my life was at that stage. My dad took me to the GP surgery. The very young female GP who saw me (a definite healer with heart) cancelled all her other appts for that morning and rang through to Dr Robertson, the lead consultant in the ED team. I think it was a Friday and he said he would see me on the Monday. He advised her on how to keep me safe over the weekend... basically, she kept popping round to the house with Diazepam.

That Monday, I went back to QEPH outpatient dept with both parents. I remember very clearly when Dr Robertson came out into the waiting area, he came straight over to me and said 'you must be Linda'. I had no idea how he knew who I was, but looking back, I suppose I probably looked like someone who was very poorly with anorexia. He spoke to me for a while. I don't remember any of that conversation. Then my parents came in too. He told us that he felt I should go into hospital asap. Unfortunately, he had no free beds on the Reed unit so said he would arrange an NHS-funded bed at the local Priory clinic. We went home with a prescription for temazepam (because I was refusing to let myself sleep - thinking that sleep was lazy) to wait for a phone call with more instructions.

On the Weds, a girl on the Reed unit discharged herself so I was offered her bed rather than the Priory one. Funnily enough, back then the unit was very fixed on its admission days so I had to wait till Monday to go in; nowadays Dr R brings people in as soon as there's a bed and they agree because of the tendency for people to try to lose a bit more while waiting. For me, going in straight away would have saved me a scar on my forehead: I wouldn't let myself sleep even with temazepam and I cut my head open falling down the stairs in the early hours of the morning, attempting to go downstairs and keep busy. Over the phone, A&E advised my mother not to bring me in because they'd have to admit me to a general psych ward and the on-call psychiatrist thought it would be better for me if I could stay at home until going into the Reed. My poor mum (another healer with heart) had to sleep across the doorway to my room for the next few nights to stop me trying to wander again.

I was really poorly when I was admitted to the hospital. I couldn't see it at the time and thought I was too big to be there. I told the person admitting me that it was 'just like when I was the biggest baby in the special care baby unit'. Some of the people from that admission are still there, even though the service is now housed in a new hospital building and the unit has a different name. Dr R, my psychologist, some of the nursing assistants. The NAs that I'm thinking of seem to have infinite capacity to care. They know us at our worst and yet continue to believe in us and continue to encourage everyone to keep going.

It's probably a bit trite to say that I believe BSMHFT saved my life but I think they probably have. On at least 3 occasions. Amongst ourselves, my friends and I can often moan about individual aspects of the service: what is the point of morning support group? why do they keep employing Dr Thingummybob? agency staff should not be allowed to do dining room support... especially if they are going to answer their phone while in there, or stare, or make strange comments.

But beyond the complaints, there is a service that continues to help people and, unlike CPFT, it does not give up on anyone. Within the service there are individuals that to whom I wish I could articulate how strongly I appreciate the things that they have done for me. Some things are big; others might just be a squeeze of my shoulder as I walked out of the dining room after a really hard meal. Through that, they show that they aren't just showing up to pick up a wage but that their hearts are present with them, and with us as we attempt to get better.

Sunday, May 20, 2012

Sound of Silence - part 2

I wrote my response to today's prompt after midnight last night. So it was essentially written in a liminal space between yesterday and today...
But reading the prompt's title, The Sound of Silence, so late at night has meant that the song inside my head today has been Simon and Garfunkel's Sound of Silence. This reminded me of another Simon and Garfunkel song that has always resonated with me because it partly manages to articulate something about the way that my anorexia has functioned for me. The anorexia creates the 'walls, a fortress deep and mighty'. Walls that protect. Walls that isolate. Walls that provide me with safety from the pain of emotions and of experiencing the real world.

I've built walls, 
A fortress deep and mighty, 
That none may penetrate. 
I have no need of friendship; friendship causes pain. 
It's laughter and it's loving I disdain. 
I am a rock, 
I am an island. 
[ Lyrics from: ] 
Don't talk of love, 
But I've heard the words before; 
It's sleeping in my memory. 
I won't disturb the slumber of feelings that have died. 
If I never loved I never would have cried. 
I am a rock, 
I am an island. 

At the worst times, the thought of someone penetrating the walls, of trespassing on my island, is terrifying.  But so is the thought of being trapped in the loneliness of illness forever.
One particular line that speaks to my situation is that 'I have my books/ And my poetry to protect me'. There have been many times when I've used my love of books to authenticate some of my need to restrict myself from other enjoyment. I went for about 6 years without watching television and a similar amount of time unable to allow myself to sit with my family in the sitting room. I suppose it was about isolation. And about the control of not permitting myself certain simple pleasures.

I have my books 
And my poetry to protect me; 
I am shielded in my armor, 
Hiding in my room, safe within my womb. 
I touch no one and no one touches me. 
I am a rock, 
I am an island. 

The song's final couplet is paradoxically truth and a lie... Anorexia does numb the pain for a while but as long as pain exists, we know we have to face it sometime. And maybe we do need to cry.

And a rock feels no pain; 
And an island never cries.

I've felt myself retreating a bit this week. I've been choosing alone. As I write this, I guess I know that I have to fight the urge to build walls, to become an island. Anorexia's armour may feel safe but it endangers us: our health, our relationships, our lives.

(all lyrics cited are copyright Paul Simon. And if you don't own a Simon and Garfunkel album, you should really buy one. They are amazing)

HfC day 20: the sound of silence

This prompt is weirdly apt for me because I wanted to write something about the silence here for the past few days. I've missed out on several days of the challenge consecutively. And it's hard to explain why, because admitting publicly to low moods and feeling emotionally fragile is terrifying. (I do see that I have actually admitted it in that last sentence). How many times when asked 'how are you?' do I/ we say 'fine, thanks' even when fine is far from the truth? I even did it at my last GP appointment; my GP seemed so thrilled that I was fine that I was then unable to tell him how I had been struggling with feeling very low and worthless.
Maybe the difficulties that have prevented me from writing, alongside the realisation that it feels impossible to admit how things really are, point to something about the functionality of EDs: if societal pressures make it difficult to talk about sadness, mental pain, emotional distress, the "obvious" option is to turn that pain inwards even more and to make it tangible in ED symptoms. For one thing that an emaciated body achieves is to communicate distress. When spoken communication has failed, our bodies can graphically illustrate the extremity of our sadness.
Indeed, one of the conversations that I've had with others who've been through treatment with me is that when refeeding has made our bodies look "normal", people assume that everything is ok. For some recovering/ed anorexics, I hope that is true. But for many of us, treating the body is one part of a picture that rarely happens exactly simultaneously with sorting out all the thoughts and crap inside our heads. Someone with a BMI over 20 can be hurting inside as much as someone whose BMI causes doctors to write bed rest plans.

When it's properly 20th May (as opposed to nearly 1am on the 20th before I've actually finished with the 19th), I will try to write the post that I'd planned in my head - I've been wondering why I have not shared my participation in this challenge with all my Facebook friends. Most of them are aware about my ED because I have never tried to hide my experiences. But I think I'm scared of letting them read the very personal thoughts and details of things that have happened...

Wednesday, May 16, 2012

HfC day 16 Fat is not a feeling...

This prompt made me laugh because, about a year ago, there was a big to do in the ED unit where I was receiving treatment. Two nurses had started a body image group (compulsory part of the group programme). The trouble was that neither of them had experience of running this group ... and it's the group that tends to cause the most anxiety and distress among patients. I stated outright that I would not attend, having previously had very bad experience of such groups but after the first session, all my friends came out fuming.

The session was based on the very same statement as this prompt. But when the girls (and all the patients on the unit at that time were female) offered their thoughts on alternative feelings in a brainstorm, the nurses claimed that things like 'guilt', 'fear', 'disgust', etc, were not feelings. Apparently they'd read a book that stated that there are only 4 human feelings. Therefore, they wanted everyone to fit their emotional experience onto one of the 4 feelings that are "correct". I think we can all agree that fat isn't a feeling, even though feelings of fat are incredibly real when one is experiencing them. But to tell people that they aren't experiencing guilt or fear or self-disgust because those aren't "correct" feelings is bizarre, to say the least.

I spoke to a psychologist about it to try to get to the bottom of this '4 feelings' theory. He said that perhaps it was a correlation of a few different bits of psychological research. Generally, he said, there are something like 6 or 7 accepted "feelings" and it's usually possible to plot all the variations and distinctions of individual emotion onto one of those 6 or 7 basic notions. And there's also something complicated going on with how we distinguish between a 'feeling' and an 'emotion'.

I'm not sure where this post is going, except to say that the following week, that incarnation of the body image group ended in acrimony with a rather large argument between the facilitators and the patients. And that, obviously, it is a crucial step in the long recovery process when you realise that very real feelings about your body are, in fact, the way that your brain is coping with very real feelings and emotions about other things, especially when those things are simply too painful to cope with.

My difficulty has always been that I can grasp the intellectual concepts behind theories of illness. I understand it all perfectly on an intellectual level. The problem is in the disparity between intellectual knowledge and emotional belief. One of my uni supervisors (who is a very wise man) talked about this in relation to affective piety in the medieval period, i.e. that sitting through a dramatic version of the Crucifixion can shift someone from understanding the Christian story in theory, as an interesting story in a book, to a place where they believe emotionally in the pain of the sacrifice.

We all have to keep trying to move towards truly believing that fat feelings aren't true, simultaneously attempting to find other ways to cope with the real emotions that we experience.

Tuesday, May 15, 2012

HfC day 15

I want to write today. But I've seen the topic and I can't. I really really can't.

The prompt is to 'write a letter to little me'. Maybe I'm so stuck on the topic because I hate myself for the things I've done to her. Photos of tiny little me show a happy bright child. But even in primary school, all the self-doubt and anxiety was there, and my first hospitalisation came just after my 11th birthday. I hurt inside for that little girl and don't know how to forgive myself for it all.

Here she is. I want for her (or me - little me and me now) to be able to smile like that again and to be free from the pain of negative and self-destructive thoughts.

Saturday, May 12, 2012

HfC day 12: blogger's choice

I skipped yesterday so had considered using that topic for today. But I've actually now had an idea of my own so I no longer need to cheat!

Once again, this may be long and rambling. It will also give me the chance to post a knitting project (the main focus of my blog until this month) and to talk about something that simultaneously is and is not about my ED.

I started ballet at the age of 2 and studied it seriously until I was 18. I hate it when people denigrate ballet for being the 'cause' of anorexia or other EDs because it's so reductive to claim that such complex mental illnesses can be attributed to a single thing. I'm not denying that ballet had an effect on the way that I view my body. I can clearly remember being just 3 and seeing other girls with their tummies sticking out and being glad that mine did not (and promising to myself that I wouldn't let it). Or being 7 and wishing I was wearing tights because the sight of my naked thighs was too ugly for me.

But giving up eating when I was 10 had nothing to do with those feelings. It was about sadness, loneliness, wanting to escape from the world. By not eating, I was able to stay at home, cocooned away from the scariness of school (until, of course, I ended up stuck in hospital and unable to go home).

Throughout all of this, I have loved ballet. I love the way that my body can make shapes and express feelings. So starting ballet again, in an adult class, this February has allowed me to 'reclaim' it as something that is *not* about being thin, but instead, it's about loving being in my body, even if only for the duration of the class. Because as I achieve a developpe or work through a port de bras in the centre, I am fully there, within my body and controlling it as it creates the shapes and steps in the various exercises - and that control has nothing to do with food or starvation or other ED behaviours.

So now for the knitting part! I've nearly finished a wraparound cardigan that I've made for myself (and that's another good step in valuing myself enough to knit for me rather than for friends and their babies, or for charity). Here is a photo from earlier today:

Thursday, May 10, 2012

HfC day 10: words, words, words

The blog challenge today is to think up five words associated with the ED and five words associated with recovery. For help with this one, I asked some friends who have been supporting one another in recovery. Here's an edited version of our conversation:

Me: Today's blog challenge is a list of words. I'm no good at picking individual words so wondered if anyone could help me out! we need 5 words that describe EDs and 5 that describe recovery:
"Only Words?
Choose ten words; five of which relate to your experience of eating disorders and five of which relate to your recovery. What does each of these words mean to you? Why are they important to you? What part have they played in your illness and recovery?"

    • Friend 1: Here are my initial thoughts; I've just listed what comes to mind.
      EDs: darkness, emptiness, loneliness, helplessness, confusion, despair, fear, guilt
      Recovery: hope, light, opportunity, belief, friendship, love, growth, determination, self-worth, value, courage, 'daring to be daring'.

    •  i might add "doubt" to recovery. Cause there's always that voice at the back of your head making you doubt whether you can - or should - recover.
    • Friend 2: The recovery words are hard, because I guess some of them are just our hopes rather than experiences...
      (adding to Friend 1's of course!)

    •  Me: I love this! Thank you both because this helps. Maybe our list for EDs should include a few words that remind us how hard it is to escape from - e.g. comfort, safety, identity, control???
    • Friend 2: good idea, because it's almost like you have to not look at it in a judgmental way, but how it makes us feel at the time... although I think for me, it is still fear, panic, failure...
    • Friend 1: yes definitely. Security, predictability, uniqueness, restraint.

So there are more than 5 of each but I didn't want to cut any out because this thread of comments has all been enlightening to me and each word is a valid part of someone's experience and possibly may reflect my own experience in a way that I'm not able fully to recognise in the words that come immediately to my mind.

Wednesday, May 09, 2012

HfC day 9: on being different

Today's task asks us to examine what it means to be different. I think I began to look at that when I blogged about men and EDs, because, to me, it's all about individuality, identity, quiddity.

There is a big paradox because anorexia often functions as a way of gaining or solidifying identity when one's sense of self feels too fragile and it is hard to believe that self could continue to exist without it. Yet it also makes one known as an illness, which smoothes out differences and ends up making every person just another patient or just another statistic.

Funnily enough (and somehow related to this point in a way that I'm struggling to define), I've said to people before that, in some ways, it's easier to be "me" when I've been in hospital .... because everyone has the illness and we therefore get to know one another in a deeper way than ever seems possible elsewhere. It's as though the anorexia isn't the barrier that it usually is, stopping me from being fully me. And so I've been able to make wonderful friends, people whose lives may have been entirely different or spookily similar to mine, but who've known me and loved me through some of our (shared) toughest times.

I'm finding it hard to connect all the thoughts that I've had on this topic. There are two other things that have been on my mind today about difference and individuality. One was after seeing a lady in Sainsbury's. Over the winter, I saw her walking up and down the very long roads into our nearest town, practically every time I was driving past. And that made my heart hurt because I could sense her struggle and I wanted to reach out and tell her that she didn't need to walk and that the layers of clothes and gloves and the hat she was wearing weren't going to keep her warm enough because her fragile body needed to be warm inside and resting. I hadn't seen her for a few weeks until today. The sight of her made me immediately tearful. And I know, deep down, that it's partly because even though she and I are very different and at different stages in the illness, I felt recognition with her. We were in the same aisle, examining the backs of similar products, clearly both hoping that the numbers and words on the packet would give us the magic permission we needed to put the item in our trolley. So crying for her was like crying for me. I'm not sure whether it's for me now, or for me at times in the past, or for that big fear that we (me and all my friends) can only always been a thin line away from being horribly, visibly poorly. I wanted to run away at the same time as wanting to hug her and take her to hospital.

The other thing was the birth of a baby whose mother is connected to me via married relatives. This little girl has arrived in the world with a future ahead of her, an identity that has yet to be formed. At a recent Christening, the minister said that one of the reasons that people love babies is that they represent opportunity and the future because life has not yet had a chance to hurt them. Once we have lived through the disappointments, betrayal, sadness and tedium of a few decades on earth, it becomes increasingly hard to believe that our future can hold anything different from the present. But the hope that this minister gave me was that our futures remain as open as a newborn baby. Just because we have been damaged by the past does not mean that we cannot be "reborn" or repaired to dream dreams and experience new things in the years to come. The danger with eating disorders is that often medical professionals give up hope, perhaps labelling someone as SEED and offering "management" rather than "treatment". It's therefore beholden on those of us who've got that label to continue to hope for ourselves and to carry on believing that we have an unwritten future that can offer us health and happiness.

Tuesday, May 08, 2012

HfC day 8: a picture is worth ...

.... 1000 words

This weekend, my aunt brought over some photos that my great aunt (who recently died) had taken. My mum joked that she'd like to have this picture enlarged because it shows me voluntarily reaching for a sausage roll!

Even though we both giggled about that, I think the photo does represent something about recovery. Having been restrictive in my eating since the age of 10, it's hard for me to remember a time when I freely chose food based on what I wanted at that moment. This photo, taken on my 5th birthday in my Mr Men themed party with a hedgehog chocolate button cake, is proof that I had an identity that was not contingent on restriction. I can see me (as in me the person, the self) in that picture, so I can believe that, once, being me was not all about denying myself food. And the flip side of that is the possibility that I can be me in the future without anorexia forcing me to deny myself the pleasure of the different textures and tastes of various foods.

Monday, May 07, 2012

HfC day 7: everyone's an individual

Today's challenge is about men with EDs. It's definitely true that there are stereotypes that exist about EDs. One in particular is that anorexia affects mostly middle class white girls who are academic overachieving perfectionists. And some people with anorexia may fit that stereotype (apparently: I couldn't possibly comment!); however, just as I've met girls and women from a diverse range of socio-economic, educational and cultural backgrounds who have anorexia, bulimia, BED or EDNOS, I've also met men and boys with anorexia. None of them can be neatly fit into any stereotype.

I knew a teenage boy who was still studying for his A Levels and overcome with the pressure. I hope that he is doing well now.

I got to know a lovely man who was transferred to the ED unit from the older adult ward after they realised that the nature of his eating problems meant that they could not meet his needs. He'd been a sailor and called a spade a bloody shovel. In community meeting, he asked if the kitchen could send up egg on toast for breakfast because he'd never been a cereal eater and wasn't about to start then. Unfortunately for him (but fortunately for the rest of us who were quaking with fear at the thought of eggs at breakfast), the kitchen wasn't equipped to deal with making poached eggs on a mass catering scale. I hope that John has recovered and been able to enjoy his later years without the shadow of his eating disorder.

A man in his 40s has been a service user at the same ED unit as me for the past decade. I genuinely wish for his home situation to change to give him a better chance of recovery.

I'm still friends with a man I met back in the late 1990s at the old REED unit. He's now in his 50s and happily lives in a nearby town with his partner and gorgeous cats. He's a funny man with a great sense of humour and passionate beliefs about politics and animal welfare. This man always has time to support friends, writing letters and sending text messages, even when he's struggling a lot with his own health. I want for him to be well and for his future to emerge as one without anorexia. He has so much to give the world and anorexia tries so hard to take it away.

In truth, I wish similar things for all the people I've met through my own anorexia, even those who are difficult to like and even harder to share a hospital ward with. Today's focus is men, because they are often overlooked .... but the point I'd like everyone to take away is that eating disorders affect individuals, i.e. none of us can be tucked away into statistics or diagnostic criteria. We're all people, we're all different. And we all, including this blogger, need to discover that our identity, our self, our quiddity is enough and is not contingent on the existence of the eating disorder within us.

Sunday, May 06, 2012

HfC day 6: a letter to a medical professional.

Today's challenge is fairly easy for me; I just have to copy and paste from an email I wrote to Tom Dening, medical director of Cambridge and Peterborough Foundation Trust (responsible for mental health care in Cambridgeshire), and Dr Jane Shapleske, consultant psychiatrist for eating disorders at CPFT. I still get angry about the failure of CPFT to respond to my frequent requests for help, so am glad to copy this in a public place.

Dear Dr Dening and Dr Shapleske,

I remain very distressed and angry about the failure of CPFT to offer
me adequate support during the three and a half years I spent as a
client of your services. My most specific disappointment is with the
eating disorder service. Below is the text of a contribution I made to
the Guardian readers' panel on Mental Health Services. My contribution
was published today, but constraints of space mean that it was edited
into a much milder piece that fails sufficiently to convey my anger
about CPFT. So I wish you to read both the published piece
and my original writing.

[Submission to the Guardian]

My anorexia has been with me since 1989. I was admitted to hospital
that November just after my 11th birthday, having given up eating as
part of a part physical, part psychological illness that had prevented
me from going to school for several months. While anorexia nervosa was
mentioned as a possible diagnosis, I was treated mainly for M.E., and
left with lingering eating difficulties that remained part of the way
in which I experienced every day as I progressed through school. But
it was after my A Levels that the anorexia manifested itself in a way
that could no longer be ignored. Instead of starting university after
my gap year, I was admitted to a specialist NHS eating disorder unit.
This multi-disciplinary team in Birmingham were responsible for my
medical care for most of the next nine years, even when I went away to
study at Cambridge, first as an undergraduate and then during my MPhil
year. By this time, I'd had 3 inpatient admissions and when, in the
second term of my PhD, I had to enter the hospital for a 4th, the
consultant suggested that the help that they were able to give me
during university holidays was no longer sufficient and he would be
happier referring me to the Cambridgeshire services so that I could
get more regular support from specialist professionals.
Thus began three and a half years of living alone, working for a PhD
and suffering very severely from my anorexia because Cambs EDS were
not willing to treat me, the general psychiatry teams had no resources
to treat people with anorexia and my GP could only offer help from
within the limitations of her surgery: 10-20 minutes every 3 weeks or
so. For most of 2009 and 2010, I was desperate for help, yet pushed
from one professional to another, rejected again and again by the EDS
who were (in the words of one counsellor I saw) 'prejudiced by the
amount of treatment received in Birmingham, none of which has ever
worked'. The same counsellor called me 'an anorexic with no hope of
getting better' during one of our meetings back in early 2008 when the
Cambs service had picked up the referral from my previous doctor.
In December last year, I was on the verge of [giving up completely]. I had no
hope of getting better (it's amazing how labels people give to you can
stick in your head...), no hope that anyone would even see me to talk,
and no hope that this misery would end unless I ended it myself. The
only thing that stopped me was the thought of my dog finding me and
being afraid and alone.
A week later, I had an appointment with my old consultant in
Birmingham and was admitted to the ED unit here on 30th December.
Unfortunately I was so ill by this stage that [edited because the whole world doesn't need to know the details of that horrible time].
Today is June 1st. Since those dark days in December, I became a
voluntary patient at the hospital when my section was eventually
lifted, attended my PhD graduation (and forced the medics to change my
title to Dr on my notes!) and today got the keys to a flat where my
dog and I can live when I'm discharged later this month.
I'd heard the words 'postcode lottery' many times before 2007; it only
made sense to me when I had to live in Cambridge for my work but was
unable to gain any support there. Literally having to move 90 miles to
access treatment has been a massive wrench. I'm much better now and
hope that I can maintain this progress as an outpatient, but having
moved from Cambridge, I am faced with very few prospects for
employment. It turns out that doctorates in medieval literature are
not a huge draw in the current job market. I'd believed that I'd be as
free as my contemporaries to apply for jobs in other towns and cities
but the past four years have convinced me that, until mental health
provision is universally good, I have to stay here.

Friday, May 04, 2012

HfC blogger challenge day 4

The task today is to make slogans for EDs and for recovery. I'm not feeling very inspired in terms of slogans. I'd probably make a useless advertising copywriter.

Instead, the duality of the ED and recovery can perhaps be illustrated in something I once wrote about how I see anorexia as a box. It is simultaneously a safe space, like little Midge's soft igloo that she sits inside, which functions as a retreat from the scariness and sadness of the world.

But that safety comes at a price: it's isolating; it's restrictive; it means that I've never allowed anyone to get close enough to me for me to know love or to have my own children. Retreating into the safety of her igloo leaves Midge a spectator to life in our house rather than a participant, just as I feel as though I witness everyone else's life without ever truly being able to experience the rawness of waking up each morning and truly living. 

Recovery would mean being brave enough to step outside ... and stay there. The most positive way of looking at the past would be to say that each time that I've been into hospital and progressed through refeeding and rehab, I've grown a bit more used to being out of my safe space. And I have to keep taking those steps until, one day, the outside world is a safe place too.

Wednesday, May 02, 2012

HfC day 3: mascot

Wow. A mascot! I've never thought of one before and, at the moment, the only mascots I can think of are those slightly strange Olympic creatures with one eyes and space-age bodies.

A mascot for recovery needs to encompass love: loving me as I am now, but loving me enough to want me to be free from illness.

I suppose, for me, my dogs are my mascots. They give an unconditional love that makes me begin to see that, perhaps, I'm not entirely worthless: if these guys love me so much, there must be something loveable about me. But they need me to be well and I owe it to them to try to be strong enough for them, and strong enough never to have to leave them alone while I'm in hospital. They need a "mummy" who can feed herself as well as she feeds them and who values herself as much as they value her.

Introducing my beloved mascots, Benji (top) and Midge:

Top Ten Reasons to Fight For Recovery

Hungry for Change May blog challenge: day 2.

It's actually really hard to come up with reasons for recovery. I think that this is because it feels impossible to separate out anorexia from my identity, because it's been part of me since I was a little girl. So when I hear the word 'recovery', my mind tends to shout at me 'but then you might stop being you!'

Yet I know that life can be better, that I don't want always to feel this sad and that I want my future to include "normal" things like children, a family, fulfilling work, and that anorexia, as safe and insulating as it may feel, prevents those things from happening. So I'm going to find some reasons ...

1. My dogs: they can't come into hospital with me and can't understand separation; it's better for them if I never have to be hospitalised again.
2. My family: only if my mind isn't obsessed with food, weight and shape can I fully be a member of my family and part of everything.
3. The future: the idea of a future without change is a desolate one; for a future that I can want to be alive for, I have to opt for recovery.

There are more. But this is a hard list to write and without resorting to trite truisms or clichés, this is all I can include for now.

Tuesday, May 01, 2012

I write about Eating Disorders because:

Hungry for Change May Challenge: day 1

I write about EDs because? well, because it's my life. The first time I gave up eating was before my 11th birthday. Since then, I've seen life through the lens of anorexia. It hasn't stopped me achieving things. I got my degrees and my PhD from Cambridge. I have 2 dogs that I love beyond words. I love to sing. But I don't know how to be me without anorexia... Writing is an expression of self and so, how can I not write about EDs?

This is my first attempt to blog about it, but I've been writing about EDs, about being me, about life inside the safe, confining, isolating box of anorexia for years. I'm scared of letting other people read my writing, but I hope that, by doing so, someone might understand a bit more or someone else might feel a bit less alone.