Sunday, October 04, 2015

Guest post: Eritrea and the refugee crisis

I am reposting a piece my brother wrote for a parade service this morning. He discusses the current refugee crisis through the prism of his experience of spending two years in Eritrea, one of the countries whose regime is leading people to risk their lives in attempt to find safety elsewhere.

"Today’s collection goes to the charity “All We Can”, which used to be the Methodist Relief and Development Fund. The work done by All We Can is focused on eradicating poverty across the world. This includes supporting refugees in different parts of the world.

There has been a lot of talk in the news recently about refugees. While Syria has been the focus of most of the recent discussion because of the current unrest there. However many of the refugees come from Afghanistan and Eritrea. All three of these countries have different issues, but the common factor is that people are leaving their homelands because they have no choice.

I am here to tell you briefly about my experiences. If you had asked me in 2004 where Eritrea was, on a good day I might have told you it was near Ethiopia, on a bad day I might have told you it was part of Ethiopia, if anything at all frankly!

Anyway, having lived there for two years, it made an impact on my life that I can’t describe. I met some amazing people, but it gave me a glimpse of the everyday difficulties that people in Eritrea endure and some understanding of why the second newest country in Africa is the second largest exporter of refugees to Europe.


Agordat market, 2008


My job as a Teacher Trainer meant that I lived in a town called Agordat and worked with teachers local teachers, providing support. Two of the teachers I worked with were Tesfeldet and Ahmed. They had young families, and lived a long way from the rest of their families. They were all in their thirties and had all been signed up to teach as part of their National Service when they left school (in reality they were the lucky ones – many were made to be soldiers). National Service in Eritrea involves doing a job that you don’t choose, in a place that is usually along way from your home town, and there is no time frame, so it goes on interminably.

Tesfeldet’s situation brought this home to me. During the summer of 2007, he and Ahmed, along with many other teachers, were picked up from their homes one day and taken to the Danakil Depression – known to be the hottest place on earth – with temperatures often over 50C. They were made to do military training, which included walking 30km a day, carrying 5 litres of water and not being allowed to drink it.

Tesfeldet ended up in hospital for 4 weeks following this experience. On his return to Agordat, he was told that he was being moved to a remote, rural school. When he told them that he refused, he was told that he would be put in prison.

Ahmed was a skilled teacher trainer, who was extremely committed to his job, however his salary per month equated to £30 a month, which is not very much by anybody’s standards. He shared with me, when he was confident that I was not a spy, that, if he was allowed, he would like to be a farmer in his hometown, which was a two day journey away.

Another teacher, Hailab, was separated from his wife and two small children, who lived in the capital, Asmara, a 5 hour bus journey away. He was the head teacher at a Methodist School in Agordat. This was an anomaly, because most religion and organised activity is frowned upon in Eritrea (there are no scouts or similar). Groups where 5 or more people meet regularly are deemed to threaten the government as they could be politicised. There are 4 recognised religions; Islam, Orthodox Christian, Catholic and Lutheran. The Methodist Schools are tolerated as part of the school system, however any evangelising results in arrest and unlimited time in prison, which is usually a shipping container near the Danakil depression. I visited the school one day to discover that only the ladies in the school were present, the 4 male teachers (and church leaders), including Hailab, had been rounded up and taken to prison.

They had been visited by 2 boys, who were looking for shelter for the night. The boys’ families had sent the boys to escape from the country before they got rounded up like all other young people about to do Year 13 at school. The young people are rounded up before Year 13 and taken to military training school, where they do extremely harsh military training and school studies. Their end of year results determine what their national service will be – doctor, lawyer, teacher, soldier. Anyone found to have harboured or known that people have escaped from the country is imprisoned.

The authoritarian regime in Eritrea has spies everywhere and they do not tolerate anyone doing or saying the wrong thing – they listen in on phone conversations, they follow people and listen in on conversations between friends walking down the street or sitting in cafes.

I can’t tell you what Ahmed, Tesfeldet and Hailab are up to now: there is only limited, censored internet in Eritrea, and they have probably been moved on more times than I care to think about. Every time I see boats arriving from the Mediterranean or I see people being interviewed by the press, or worse still I see the body bags on the beaches, I wonder whether they reached the point of it all being too much for them. I wonder how they are managing to make ends meet in a country that is becoming increasingly isolated from the world, and where the cost of living continue to sky rocket due to lack of resources.

I think about Jesus and his message about the sheep and the goats – whenever you helped one of the least of these you did it for me. I wonder "am I doing enough to help people who have nothing through no fault of their own, but because their lives in their own countries have just become intolerable?"

I ask myself "what more could I do?"

For more information about people experiencing the situation in Calais, having fled Eritrea amongst other countries, read this post by Alison Thompson who, with her son Dan, has been taking supplies over the Channel to them: http://www.alisonmthompson.co.uk/making-friends-at-the-calais-refugee-camp

Saturday, February 07, 2015

Cake pops!

Today I made cake pops for a charity sale tomorrow. It will be raising money for Bliss, a charity that supports families of "babies born too soon, too small, too sick".

Here are some "production photos"!


Cola cake (from Marian Keyes' Saved by Cake) mixed with one or two tablespoons of the cola icing. Roll it into balls (about the size of a ping pong ball) then put into the freezer for 10 mins.


A few candy drops melted over a bain marie. Dip a pop stick in the melted candy then insert into a cake ball, laying the pops flat on a tray. Once every cake ball has a pop stick, put the tray in the fridge for the candy melts to set.


Melt more candy drops over a bain marie (I always use this method after the great microwave candy seizing disaster of 2012). Put your sprinkles in dishes to make them accessible for dipping. 


Coat each pop with a layer of melted candy and hold it over the bowl while it sets enough to no longer be dripping. Then dunk into whichever sprinkles you want.


If you don't have a cake pop stand (I bought this one the other day from Lakeland), an inverted colander works really well to hold the pops while the chocolate dries.





Since these are going for a cake sale, I put them in individual bags 



I hope they raise some money for Bliss and help them in their important work with poorly babies.

Friday, January 09, 2015

Reading so far in 2015


This is a half-baked blog post. I should/would like to write reviews for these books but, if I decide to do that, I know the post will never be finished. And, just as the reason for recording my reading in 2015 so far is to encourage me to read more than I did in 2014, I would like to post on this blog more in 2015. My modus operandi for 2014 seemed to be: have an idea for a blog post > take photos/make plans, etc. > never get around to putting it online. I need to scale down the ambition of my plans and do things imperfectly if I want to do them at all.

Nicola Upson, An Expert in Murder

Julia Spencer-Fleming, In the Bleak Midwinter

Justin Cartwright, Lion Heart

Alexander McCall Smith, The Minor Adjustment Beauty Salon

Cara Trautman, Happy(ish)

Marie Astor, This Tangled Thing Called Love

I'd recommend them all, for very different reasons. The first two are murder mysteries, using Josephine Tey and a female priest (respectively) as protagonists. Lion Heart, leant to me by my aunt, is one man's quest to understand his father through researching Richard the Lionheart. I don't need to gloss Mma Ramotswe (and yes, she probably is my favourite read of the year so far). The last two are US chick lit. I particularly enjoyed the humour of Happy(ish) and, while it certainly conforms to the structural expectations of a modern, funny romance narrative and there's a slight inevitability to the ending, it held lots of quirky side stories and surprises along the way, perhaps thanks to the three-dimensional drawing of the lovely cast of characters. I haven't yet looked to see if Cara Trautman has written more: I hope so!

Last night, I read the last book immediately after finishing Happy(ish) and it was enjoyably satisfying. I then started An Innocent Client by Scott Pratt, returning me to the crime genre. I think it's going to be a bit grittier than Mma Ramotswe!

Monday, December 08, 2014

Sketch Saturday #339

I've always liked making cards but haven't ever thought about how to improve my technique, staying with the glue-and-glitter method that I've loved since I was 4 or 5.

A friend has inspired me to look at new methods and styles so, when making my Christmas cards, I decided to use the current Sketch Saturday template for one of my designs.



The stamp is one of the Winter Stanley collection from DigiStamps Boutique.



I've always previously been all about gold and red at Christmas but colouring in the image with Spectrum Noir pastel shades led me to choose the silver colour palette for the backing shapes.

Sunday, August 03, 2014

It still amuses me...

So I was asked for a link to the blog, which made me come onto the site to check that I hadn't left any metaphorical underwear on display before sharing the address. I then decided to check out the stats and, once again, had a little chortle about my google search referrals.


I suppose it's quite reassuring (?) that people are searching for this blog and ending up here. I hope the pointe shoe and campfire cake people find what they are looking for. This month's stats are all about plum jam. So all my jam making last August has not been in vain, even if most of the jam is still in the Welsh dresser.

Wednesday, July 16, 2014

Blog post for beat


I've been researching severe, enduring anorexia nervosa recently and contributed this to the beat website. It was published today.



PS I know it's been a long time since my last post. I will try to write more soon...

Sunday, January 26, 2014

A big reunion


... in the reception of the hospital where my eating disorder unit is based, I had nearly an hour of cuddles with my "babies". Unintentionally (he was either trying to take a photo or a video), my dad made a gif of them on my knee. And since the easiest way to see a gif is online, it's an excuse to write a blog post.

For those of you who don't know why i haven't blogged since October, the above may explain a little. I've been in the EDU and today was the first time I was allowed to reception to see my dogs.

Thursday, October 17, 2013

Converging

A couple of news stories were doing the rounds on Twitter yesterday. Firstly, there was the news of Thorpe Park's Asylum Horror ride, described thus: "Enter a chaotic environment of noise, light and live action, as The Asylum opens its doors to new patients. Watch your back as you encounter dead ends, hidden corners and eyes that watch you from the shadows".
More worryingly, it was reported that there is a dangerous shortage of mental health beds in England at the moment. 

Both of these stories seemed to converge on my current situation and it's been hard to spend any time on Twitter without a) thinking about what they mean for me; b) not saying more than I'm ready to about where I am right now.

Since June, there has been discussion of whether I should do another inpatient admission. But a recent illness caused my weight to drop to a point where my next appointment with the consultant was brought forward. And when I saw him, his advice was not at all ambiguous: he wants me to go in as soon as a bed becomes available. 

This leaves me in a funny limbo, half preparing for something that seems inevitable, glad that there isn't a bed because I don't want to go in, to be away from my dogs, to have to face those awful first weeks of treatment, not wanting to be rung up with an admission date, yet anxious because I've no idea when that date will be. 

If the wait turns out to be long, it's possible that Dr R may have to look elsewhere for a bed for me. Apparently, changes to the NHS mean that each unit has to accept patients from anywhere in the country, potentially creating a situation where 1) a unit is full in Leeds so a patient from Leeds is sent to Manchester; 2) the Manchester unit is now full so someone from Manchester has to go to London; 3) when a London patient needs a bed, the London unit is full and that patient must go to Birmingham; 4) then Birmingham is full when someone local needs a bed. Obviously, I've no idea what the current situation is in the Birmingham unit or where the current patients are from. My reality, though, is that while in this limbo, I do not know whether I'll end up in hospital just 15 minutes from my home or 3 hours from home. 

As for the two news stories? I asked Beat on Twitter about whether there is data for shortages in specialist services, including EDs, because as far as I could tell, the information reported focused only on acute beds. I genuinely want to know about how far this extends into specialist services because it is impacting on my life.

And Thorpe Park's portrayal of an asylum as a place of horror is simply one of many reasons why it is hard to be open about this forthcoming hospital admission. I'm "lucky" that I've been in hospital before and I know that it is nothing like a theme park ride. But if it were 15 years ago and the eve of my first adult inpatient admission, when I knew I was about to be admitted to hospital but had never been to a psychiatric ward before, I can't even imagine how anxious it would have made me. 

This post is rather fragmentary and not saying everything I want. I've barely mentioned how needing to go into hospital feels like a betrayal of the online pro-recovery community because it means that I'm failing at recovery or any of the other thoughts that have been whizzing round my head since Monday. But I've said something. I've admitted that it's (probably) happening. And that's a start.

Monday, October 07, 2013

A dangerous weight

In my last post, I mentioned that a close friend had given her permission for me to tell the story of how the wait for eating disorder treatment nearly killed her and has left her with permanent physical problems after life-changing emergency surgery.

Jen saw our eating disorder consultant's SHO about 6 months after her GP started the referral process. During this time, her restricting anorexia progressed to binge/purge. In desperation, she had paid £200 to see a consultant privately but eventually the NHS appointment came through. Despite the clear risk factors of someone who was restricting *and* binge/purging, the SHO simply put her on a waiting list for therapy. Her BMI was not very low, which seems to have blinded him to the serious problems inherent in her eating disorder. She saw him 5 more times, once a month, feeling increasingly desperate and yet he always said 'you're on the waiting list, maybe next month...'

A therapy assessment appointment came through and Jen attended the first of six sessions at the end of July but wasn't able to go to her session the following week. Because she was in intensive care following an emergency gastrectomy. Until I met Jen, I had no idea what a gastrectomy was. Just as a tonsillectomy is the removal of the tonsils and an appendectomy is the removal of the appendix, a gastrectomy is the removal of your gastric organ: your stomach. No one can explain the precise reasons behind Jen's experience so I can only describe it from her eyes as it happened. She had binged but was suddenly unable to purge and excruciating abdominal pain began to build.

Jen's boyfriend took her to A&E, where they were told there would be a 4 hour wait despite her being doubled over and practically crying in pain. Eventually she was seen and put on a ward because doctors couldn't work out what was wrong. After another day of tests and attempts to drain her stomach, they decided to operate because of the risk of sepsis. They discovered that about half of the tissue had died (known as necrosis) and the stomach was very enlarged. It would be incredibly dangerous for this dead tissue to remain in her system, because sepsis kills very, very quickly, so the only safe option was for surgeons to remove the entire stomach.

After the operation, Jen had 10 days of very serious illness, with cardiac problems, pleural effusions and other complications that kept her in ICU. The many months of physical rehabilitation have been followed by years of post traumatic stress: facing the start of eating disorder treatment while also adapting to the challenges of life without a stomach, when food must be consumed "little and often" in order for nutrients to be absorbed by the intestines and many ingredients are cannot be digested. Jen's life is dominated by episodes of hypoglycaemia and constant tiredness, as well as PTSD. Her wait for treatment, lengthened because doctors were too focused on weight, turned out to be very dangerous indeed.

Weighting the evidence

Beat have today launched a campaign to draw attention to the problems caused by the time that people with eating disorders spend waiting for specialist treatment. 
I have been lucky and unlucky over the years with waiting times. I was seen in Dr R's clinic just a few weeks after my GP referred me in 1998 (and it would have been sooner were it not for my insistence that I was going to go on holiday to Seattle on my own whatever any medical professional told me). No follow up resulted from that appointment because I was due to set off for university: since I wouldn't accept the doctor's advice to postpone uni and stay for treatment, she couldn't keep me on. Over the ensuing 4 or 5 weeks, I gradually came to the realisation that I could not go to uni. If I couldn't walk down the road without leaning on my mother for support, how would I be able to manage alone in London? 
So my GP re-referred me to specialist services and an appointment letter arrived. But when a further letter arrived to postpone that appointment, I broke down: I had pinned so much hope onto the thought of getting help, that the prolonging of wait for that help was unbearable. So unbearable that my dad had to take me into the GP surgery because I was unable to cope with being alive. The GP cancelled all her other appointments and rang the specialist who liaised with her over the phone to help her look after me from that day (Friday) until the Monday, when he saw me in clinic and sorted out a bed almost immediately.
Contrast this with Cambridge, where I had to wait months for an "assessment", despite them receiving a detailed referral letter from Dr R, and then had to wait further months on the hilariously oxymoronic "emergency waiting list" for therapy. Their refusal to offer me any help in 2010 followed 4 months waiting for another "assessment". 
In addition to the factor of where you live and how the local service operates, the type of eating disorder someone is experiencing affects the waiting time too. Unfortunately, waiting times can be vastly different for a restricting anorexic than for someone with bulimia, where the severity of their condition is masked by their BMI. It's a situation that dangerously plays into the eating disordered mindset, since one is (essentially) encouraged to reach as low a BMI as possible in order to be taken seriously by medical professionals. Yet the medical complications of eating disorders are not dependent on weight. Heart arrhythmias can kill someone with bulimia even if her BMI falls within normal range. Someone with long-term anorexia can maintain a low weight for a perplexingly long time; this does not mean that they are ok to be left alone with no help.
I have a friend who nearly lost her life while waiting for treatment. She has given me permission to tell her story in the next post.

Thursday, October 03, 2013

In my occasional series...

...that is indicative of the rather random collection of subjects about which I write, here is this week's search keywords:



Disappointingly, "darning pointe shoes" hasn't scored any hits this week and nor has the old favourite "Dr Jane Shapleske". If she googles herself, I'm pretty sure that this blog is not where she wants to end up.

Anyway, sometimes I feel that I should be more focused because rule 1 of "being a good blogger" is to have a coherent theme. But this particular blog has always been about the different parts of me, whether that is darning ballet shoes, writing about eating disorders, knitting, making jam, posting photos of my dogs, reviewing a theatrical production .... and, yes, ranting about the poor standard of care I received, specifically from Dr Jane Shapleske and Cambs Adult EDS, while living in the CPFT area. 

And maybe it's important that I hold onto that variety. Because even though it's tempting for me to focus on the ED or mental health stuff, I don't want it to reflect the way that anorexia takes me over when I'm poorly and leaves me unable to think anything except the anorexic thoughts. So I'm going to carry on enjoying the diverse ways that people end up here, from searching a variety of topics, and celebrating that all of those things are part of me. 

Monday, September 30, 2013

Sectioned

Yesterday, quite deliberately, I entered a discussion on Facebook about a placard used in a protest on Saturday. I don't live in Stafford and I think that some people saw my comment as an unwelcome intervention in their group. But, as other "ticker" watchers will know, sometimes you see a friend participating in a discussion and you want to click "like" on their comment but need to join the group to join or you see things with which you disagree, fundamentally, and become itchy with the need to join in. So I asked to join the group and once that request had been processed, I posted my comment.

Obviously, this blog post is going to be spectacularly meaningless without reference to the placard in question. I don't own the photo ... and don't want to identify those who made it (who I'm certain had no intention to offend). So I've taken a screencap of the sign in isolation.


Firstly, I am jolly proud of myself for not allowing myself to score points from the poor punctuation of the sign or the slightly hilarious decision to censor the word "piss". Instead, I wrote this:
"As someone who has been sectioned, I find the placard upsetting. Sectioning isn't to do with being "locked up" for being "mad" or putting forward "nonsense"; it's to do with very real health problems that can endanger one's own life (which is the reason why I was sectioned; I was no danger to anyone else). 
Stafford Hospital is a very important cause for which to fight and it's possible to fight for it purely on its own merits, without this casual stigma. 
For what it's worth, I very, very rarely admit to having been sectioned in public because of the misinformation, perpetuated in signs such as this, that somehow it means you have been "utter madmen" or dangerous. 
It's not about political correctness or clearcut issues of offence vs. tolerance. To me, it is about taking an experience that is one of the most deeply distressing thing that can happen to people, including patients at Stafford Hospital, and turning it into a joke."
But even though it made me feel vulnerable and criticised, I'm not sorry that I joined in the discussion. I am pretty open about my mental health. Most people who know me know about my anorexia and know that I've been hospitalised for it. But I only rarely talk about New Year's Eve 2010: the day I was sectioned. And this sign helped me to see why. Because it articulates, however crudely, the prevalent view of sectioning. It's about locking up madmen. It's about keeping the "normal" people safe from the "crazy" ones. Or the bad ones. It's Broadmoor or Ian Brady in Ashworth Hospital.

In reality, sectioning is, for most people, miles away from that. The irony for me was that I had been asking for help for the three years prior to being sectioned. Unfortunately, because I had been left to face everything alone in Cambridge, by the time I saw the consultant in Birmingham, I was very poorly. I didn't refuse to go into hospital. But, once I was there, everything was too terrifying. The anorexia was alive and well; I was not.

Just after arriving, I had to go into lunch but couldn't even touch the sandwich because I was afraid of the margarine on my fingers and the feel of it on my hands, let alone contemplate those textures, the fat, the taste, the everything, in my mouth.

Panic attack, running from the room, sobbing in a meeting with a nurse and dietitian. They explained that (with knowledge from previous admissions of how much I struggle with facing food) if I hadn't managed to eat within 24 hours, assessment for section 3 would be put in place.

Later that afternoon, there was a community meeting and other patients, much further along in treatment, were planning a rehab outing to Nandos and the next "takeaway club". Another panic attack, fleeing to my room, needing to flee this place altogether. Needing my dog, needing his love, knowing he'd be wondering where I was. All I could tell them was that I didn't need to be there, that I'd be fine at home. That I'd be fine as long as I didn't have to face all this food, as long as no one was making me eat. That being here would make me poorly.

I can't remember much at all about what happened until the next afternoon. I remember people telling me that I needed to say that I would stay voluntarily. But I knew, knew without a doubt, that they were wrong and I would be better if I wasn't there, if I was home with Benji, if people weren't trying to give me all this terrifying food. A nurse who I'd known for 12 years, now the unit manager, sat with me and tried to engage with my rational brain. My parents were called in (sectioning needs a closest relative) and tried to explain that I had to say I would stay there. Why couldn't I say I would stay there? I had to talk to a social worker. She had long hair. She was nice. I've no recollection, whatsoever, of what was discussed. The doctor on call had been Dr R's trainee on my last admission; he reminded me of the time I beat him at Scrabble.

I don't remember the moment that It Happened. I don't remember being told that I was being held under Section Three. I don't remember trying to leave but being unable to put my shoes on because I was too confused to put them on the right feet (a nurse told me about this months later; he said that was the moment he knew that sectioning was unavoidable and that the Linda he knew wasn't present).

It was probably more distressing for my parents because they weren't too poorly to understand it. They were witnessing their daughter, who had recently completed a PhD, being detained under the Mental Health Act. And this was all happening on New Year's Eve, universally a time of parties and celebrations. I can't even imagine.

So yes, to me, casual juxtaposition of sectioning and madman isn't even offensive: it's painful. And it's not even that I don't have a sense of humour about my experiences. I'm often told that I'm the queen of black humour. But that sign is as stigmatising as the bloody costume with a meat cleaver. It equates mental illness with being dangerous. I have no access to relevant statistics but I imagine that the majority of sections take place because of risk to the individual's own safety, whether through risk of self harm or suicide or because anorexia is driving someone close to death. The implication that those of us who mind about these things need to lighten up or get a sense of humour pisses me off. And I may not be 2000 pregnant women but you still don't want to piss me off.

Edit: if you too have been sectioned and would like to help inform a new code of practice, take a look at this storify by @_sectioned

More from Asda

My brain is in superactive mode this morning and wants to Write All The Things. However, the first thing I must do is to report that I had further communication from Lisa Sutcliffe of Asda on Friday. She was sorry that I was unhappy with her response but said that she couldn't provide details of internal investigations. However, she assures me that they are taking action, which is good to hear.

I've also realised that if I were A Good Blogger, I would have tagged all my posts so that everything is nicely linked for readers who are interested in a particular topic. I will try to a) work out how to do it; b) do some retroactive tagging on (at least) recent posts.


Saturday, September 28, 2013

Benji was feeling left out

... because Midge has been all over Twitter and pictured on the Mind blog post the other day.

To make him feel better, here he is. Sometimes with a #mentalpatient (wearing his own doctoral red gown/shrug on the day of PhD graduation, in the garden a couple of years ago, on his trip to Crufts and having a cuddle on an average day). But the first one demonstrates his inherent distrust of French horns ... and the reason why I no longer play: it's hard to practice when a small dog tries to attack the strange metal thing even before it starts making loud noises!






Friday, September 27, 2013

Can you tell?

Yesterday, it was pretty wonderful to see all the photos that people posted on Twitter with the #mentalpatient hashtag. The main point of these pictures was to show that mental illness is (mostly) invisible and that we look like a diverse collection of individuals, like a collection of people. Which is what we are.

Except, with anorexia, that's not always true. Our mental health is illustrated in our bodies, the size of our limbs or the flesh on our cheeks. 

Some of the pictures posted on Mind's and Time to Change's twitter feed showed significant events in people's lives, achieved while living with mental health difficulties. And I considered posting a photo from my PhD graduation, which took place about 8 weeks into my 5th adult inpatient admission for anorexia and a few days after my section was lifted in the ward round. That photo shows that instead of wielding a cleaver or wearing an orange jumpsuit, this #mentalpatient was given her doctorate in a ceremony at Senate House. 

Trouble is that the photos show an ill person. Like lots of (but not all) other people with eating disorders, I struggle with perceiving what I look like in the present moment. Numerically speaking, in terms of BMI or kilos, professionals can define me as underweight when all I can see is the fat on my body and the size of my fat face. On one level, I understand the metaphor used by my eating disorders psychiatrist of colour blindness, that I need to accept that my red is green or my green is red in order not to crash when I am in the world at metaphorical traffic lights (!); but the truth is that real emotional belief is lacking and I am aware only of my largeness.

On day of my PhD graduation, I wasn't aware that I looked pale and (probably) a bit underweight but I can see with hindsight that other people might have seen illness in my appearance and therefore I posted a photo of knitted poodles instead of me!



Today, with time to think and to look at the photographs objectively, I've found one where I think I look ok. I think (hope) that this is not the sort of photo that would be triggering to anyone else with an eating disorder (which is another horrible can of worms when trying to be a positive online presence yet facing very real every day struggles with anorexia). It shows my reality. The reality of living with an illness for most of my life, yet living my life anyway. The reality of multiple hospital admissions ... and multiple degree graduation ceremonies. 

Nonetheless, I'm rather delighted that my knitted poodles have been so popular and have gained their own twitter fans. Given that they are still a standing joke at my EDU, 10 years after the craze first took hold of us all and 5 years after the move to a new building with the demolition of QEPH, it's good to know that they have their admirers. The dietitian who greeted me a couple of years ago with "please don't start another infestation of poodles" will probably never be among them!

Thursday, September 26, 2013

A response from Asda, after a surreal day

Just after 5pm, I received a reply to the email that I sent to Andy Clarke, CEO of Asda. Rather than replying himself, the message had been forwarded to Lisa Sutcliffe in the Directorate or Executive Relations dept. 

I don't have her permission to paste her email here. However it does not differ in any substance from the tweets sent by Asda last night, even including the same phrases: "unacceptable error"; "withdrawn immediately"; we "will be making a sizeable donation" to Mind

So I've replied to request that the specific points I made in my email be addressed:

"Dear Ms Sutcliffe,

Thank you for apologising. If I missed the part of the email where you explained how you will be launching an investigation into the culture of your institution that allowed this product to reach the shelves, could you draw my attention to it now? If you are not launching such an investigation, please give me your reasons for this failure to respond to very real concerns about how an organisation can have a prejudicial attitude so embedded within it that it took outsiders to point out how dreadfully stigmatising the costume was. 

You may be aware that I posted my original email to Mr Clarke on my blog. This has today been reposted by Mind. 

I've promised to keep readers up to date with any responses that I get. Unfortunately there isn't much in your message that is worth repeating since it regurgitates the statements that your company has been making all day."

This follows a day that has been rather overwhelming. My twitter "interactions/mentions" section has been kept very busy, new people have followed me and, as the email states, Mind asked whether I'd be happy for them to put last night's post on their blog.
Personally, I've received a lot of wonderful support from friends online. It's been disheartening to read some of the comments, for example on Rethink's FB page or directed towards Stan Collymore. These comments have the opposite effect to their intentions: telling us that "it's just a joke", we "need to get over ourselves"; "you absolute nutjob"; "the world has officially went [sic] PC mad" simply proves that stigma is real, prejudice against people with mental illness is everywhere and we need to carry on fighting these incidents when they arise.

Some people have criticised the charities involved in the debate for fighting something "trivial" when there are so many other mental health scandals that need attention. I think that this misses the point: there are very few MH stories that make it onto the news. And this one has. Therefore Mind, Rethink, TimetoChange, etc., had a duty to get their voices heard. And the wonderful response to the #mentalpatient photos that have been shared on Twitter throughout the day has been an inspiring counterpoint to the outdated stereotype. 

On Monday, my therapist was commenting on how I can usually find humour even in bleak situations. The book I've written about anorexia apparently manages to make people laugh as well as cry. So I feel that my response to that costume had nothing to do with me not having a sense of humour. The charities haven't lost their sense of humour. The thousands of people complaining on Twitter aren't devoid of humour. The truth is that the costume isn't funny. Because, as we all know, the comedians who get the most laughs use observational humour, i.e. comedy based in truth. 

Given that the blood-dripping, straitjacket wearing, cleaver-wielding "mental patient" has only ever existed in bad horror films, it's fair to say that only characters in bad horror films have the association of this stereotype with truth to find it funny.

Wednesday, September 25, 2013

Fighting stigma

Tonight, I saw that Asda were selling this:



Like many others, I tweeted about it and within a few hours, Asda had removed the product from its website. This is a good step. But I'm concerned that the product made it to the website in the first place and have emailed the Asda CEO to express my concerns.

"Dear Mr Clarke,

Like many others, I have been astonished, appalled and offended by the "Mental Patient" Halloween costume on sale via your website. 
I have attached a screenshot and am relieved to see that the link to the costume no longer functions (http://direct.asda.com/george/men/fancy-dress/zombie-fancy-dress-costume/G004314909,default,pd.html) 
I tweeted about it and despite having relatively few followers, my tweet was retweeted 32 times within an hour: https://twitter.com/lapsangsusie/status/382964273896370176

I feel that the culture within your business that allowed this costume to be planned, photographed and passed for publication on your website needs to be examined. I'd suggest that you implement some training to ensure that your company no longer perpetuates such damaging and offensive stigma. 

Personally, I have been very upset by this tonight and I've heard of other individuals with mental health conditions who have been pushed into a vulnerable state after seeing photographs of, and links to, this product.

I look forward to hearing from you, hopefully tomorrow, to explain what Asda will be doing to address the failings within its institutional culture and to protect and respect its consumers, colleagues and employees who live with these misunderstood conditions. 

Yours sincerely,"

If I get a response, I'll be sure to update....
And the tweet that I linked for him "Dear , this is what a looks like. End the . It's 2013 not 1813" with this photo



I don't normally post photos of myself on Twitter but it felt like the best way to challenge a damaging image was to share a normalising image. This is me, with one of my beautiful dogs, on a (rare) holiday. My life might often be a struggle (and seeing that there are people who find mental illness funny or frightening hardly helps with that struggle) but really I'm just someone who is as human as you or your neighbour or the checkout assistant at Asda or even Mr Clarke himself.

"exquisitely on death's doorstep"

Over the weekend, I read this post (and the linked post at The Kartini Clinic's blog along with the discussion about the article on Facebook and Charlotte's second post on the topic). I've been thinking about it ever since.

I have two (at least) separate strands to my thoughts and I'm not convinced that I can create a single coherent post ... However, it's worth a try!

Firstly and perhaps a topic that I should save for another post, I was taken aback by some of the antagonism between adults with eating disorders and the parent advocates. While most outsiders would believe that we are, or should be, all fighting for the same goal, there seems to be a lot of disagreement over how that goal should be achieved. As someone who hadn't really heard of FEAST and their work until a couple of weeks ago, I've found reading some of their posts, advice and research very challenging ... and extremely emotional. Therefore my instinct about the antagonism is that both sides, the adults with long-term EDs and the parents who have children with/recovered from EDs, find the other to be unsettling. A 16-year old with anorexia told me back in June that the thought of becoming me (i.e. if her eating disorder continued) was horrible and going to be motivation in her recovery. Which felt pretty crap at the time because no one wants their life summed up as someone else's idea of The Worst Thing Ever. But it's obvious that any parent seeing adults who've been struggling with the illness for 20+ years would want to do all that they can to ensure that this is not the future for their own daughter or son. Whereas those of us who see the children and teenagers getting better with new models of treatment can't help but grieve for our younger selves. And I can imagine that, rather than facing that grief and sadness, some people might choose instead to challenge the validity of that treatment model.

Hopefully, this is a segue into the other strand of my thinking to do with the reported speech of a clinician who described seeing a patient for 4 years of therapy while that patient was "exquisitely on death's doorstep". Rightly, this report led to a great deal of debate at the time (you only need to look at the comments on the Kartini blog post to see how heated the discussion became).

My own take on it is rather difference. Having been refused treatment in Cambridgeshire because I was poised in a chronic state from which they couldn't guarantee any tidy outcome to report in their figures for NICE (or whoever it is to whom health authorities are now accountable) and having become suicidal from that experience, part of me wishes to applaud the therapist for offering some kind of support to an individual with an isolating and debilitating illness. Clearly, we can all agree that someone "on death's doorstep" would be better served by an inpatient experience. However, none of us know the reasons why this was not possible for this person. If it was in the US (which I think it was), perhaps there were insurance issues at play. In the UK, my own experience has taught me that some eating disorder services will not offer inpatient treatment to individuals who do not fit their own narrow criteria for admission, even when that denial is condemning a person to an existence that barely qualifies as life.

And that is where I find the clinician's description to be verging on offensive. Because there is absolutely nothing "exquisite" about being desperately ill with anorexia. Whether it's waking up in the morning and feeling unable to face another 24 hours of constant thoughts about greed and fat and food and purging and needing to buy more iceberg lettuce from Morrisons (and being ashamed because it's all you buy and the shop assistants there all give you judging looks as you put the salad, cheap diet cola and sugar-free icepops on the checkout) and walking and being too cold to get out of bed but hating yourself for the laziness if you don't. Or whether it's the physical stuff: bleeding, chapped hands. Body covered with downy hair. Stinky breath. Sleepless nights. Peeing as you vomit. Anal leakage as you walk down the road in Cambridge and have to meet with someone but have no change of clothes and no way to get clean.

I could write more. I could talk about the stuff we all know in terms of organ damage and my friends who've had heart attacks or gastrectomies. Or died.

But it's the piss and the poo that, to me, is the clearest way to deromanticise the notion of a beautiful thinness, an exquisite skeletal existence. Because I imagine that patient, if she'd been speaking at the conference, would not have described those years of hell as exquisite, even if she'd thanked the therapist for supporting her through them and not making her face them alone.

Tuesday, September 24, 2013

Talking to OTs

I participated in a Twitter chat last week with occupational therapists. It was a good experience. The OTs were extremely receptive to hearing from those of us who have worked with OTs from "the other side". Like anyone with a long history of engagement with mental health services, I had many stories to share and writing them down helped me to reflect on certain past events. Some are long enough ago that I no longer feel anything about them (except as narrative); others remain painful, especially one relating to my ongoing pain about not having (and having not prospect of having) children.

After the chat had finished, the facilitator asked whether anyone would consider writing a "Dear OTs" post for their blog. I offered to do so and was published today, along with a very poignant piece from a woman who cares for her husband with BPD.

When it went "live", I retweeted the link and shared it on Facebook. Almost immediately I deleted it from Facebook. And that made me realise that I have some subconscious barriers between the different versions of "me" that exist online. I'm very open about my anorexia but I have only linked to my blog once on Facebook. And there is very little crossover between the people with whom I interact on Twitter and my Facebook friends. I can't even rationally explain why I couldn't, today, cope with the idea that suddenly all those worlds would collide. But it did create a weird vulnerability, perhaps because my letter to the OTs had been so open and because I needed to protect myself a little bit by not sharing it to my Facebook friends.

If I'm rambling, please forgive me. It's been a long day: a morning spent in the cardiology dept of the QE, which began with high anxiety when two nurses decided to treat me like shit because I refused to let them weigh me (I had an accurate weight to tell them and a weight from different scales at a different time wearing different clothes would have set me up for a horrible day inside my head with thoughts of greed and fatness and all that incessant and debilitating ED whispering). 2 hours later, post-ECG, post consultant chat and post blood tests, I was on the way home. Back again on Friday for my echo.

And I'm tired because of things that are too internalised to write here: conversations that I've had that I want to shut out and that terrify me...

Hope for the future?

A new project launched yesterday that could bring some important research to the UK. You can read about it in this article in the Huffington Post by Laura Collins and on Charlotte Bevan's blog. 
The research is described here and can be summarised thus: 
"NGI represents a global effort to detect genetic variation that contributes to this potentially life-threatening illness. The goal of the research study is to transform our knowledge about the causes of eating disorders to work toward greater understanding and ultimately a cure."
For someone who has been living AN since 1989, the idea that there may "ultimately [be] a cure" is so overwhelming that I want to do all I can to help with the project. I've long wanted to donate my blood to add to the database but currently I can't, because I live in the UK. If Charlotte's Helix can source the funding to get the project over here, those of us who fear that it might be too late for us might at least be able to see hope for other girls, boys, women, men, daughters, mothers, sisters, brothers. And it will be a lasting legacy for the advocacy work that Charlotte Bevan has done so brilliantly since her own family experienced the devastation of AN first hand.


To donate, there is a Virgin Money site that accepts donations via PayPal, cards, etc.

Please do what you can to help. Do what you can to help maintain hope in an illness that works hard to drain it from us.