Tuesday, 25 February 2014

My Talk For EDAW 2014

So tomorrow is my talk for EDAW and I am not ashamed to say.... I am terrified!!  
Public speaking is not something I am very good at.  I tend to talk too fast, mumble, get my words muddles up and my mouth gets so dry I just can't get the words out.
I practised at a friends last night and by the time I'd finished, my breathing felt like I had just sprinted a mile!!
Some of the speech I had prepared was taken from this blog and reading it aloud made it all real again.  It was difficult to disguise the breaking of my voice as I held the tears back. 
I shall be addressing a Womens Institute group from the Somerset village of Cheddar.  They are a traditional 'Jam and Jerusalem' W.I, in total comparison to the Shoreditch Sisters who I interviewed for Body Gossip last Summer.  I do hope they take it easy on me.

So here it is.  My talk in full.  For those of you who have followed my blog for a while, or bought my book you may  recognise parts of it.  Wish me luck and I would appreciate any comments.....

Eating Disorders Awareness Week 2014
SWEDA stands for Somerset & Wessex Eating Disorders Association and they are a small charity based in Somerset. Unfortunately for anyone living in rural Somerset this is in fact one of only two eating disorders support group in the area, and that area is big!!! I have been attending SWEDA on and off for about the past 15 or so years and they have been a crucial part in my recovery. SWEDA isn't just a support group, they educate schools and local GP surgeries, and they have telephone, email and computer helplines as well as offering low cost counselling to sufferers,and retreat days. They are a necessity to sufferers and carers in my local community and beyond.
But why does SWEDA work? It worked for me to be with people who knew what I was feeling, how I was hurting and who didn’t judge. You had hope when people were obviously getting better. It is also important for carers to have an ear to listen. Eating disorders not only affect the person, but also those close to them.
Another reason why an organisation like this is needed is because the NHS referral system sucks big time!! Often you cannot get referred on straight away if your BMI is not at a certain level, therefore waiting for months, and not everyone can afford to go private.
SWEDA is needed because ultimately eating disorders kill. People die. They have the highest fatality rate of any mental illness.
Shocking isn't it?

So, when you hear the term ‘eating disorder’, what do you imagine?
Do you have a picture in your head of a young skinny girl, severely emaciated or an overweight person who can't pass the fridge without eating the contents. I asked my Husband the same question and he could only give me the example of an underweight person; and that is after living with me for 15 years!
During Eating Disorders Awareness Week I would like to share my story of what It is like to live with an eating Disorder and recover, and also to dispel some of the common myths surrounding the illness.

So what is an eating disorder? The medical definition is “any of a range of psychological disorders characterized by abnormal or disturbed eating habits.”

For the majority of people eating is second nature. The most you have to think about is what you are going to cook for tea tomorrow. The physical act of eating is not a challenge, is not something that fills you with fear or keeps you at awake at night.
So let me ask you something?
When you have that custard cream with your coffee are you terrified of losing control and eating until you are physically sick?
Do you punish yourself to get rid of the calories by pounding the streets at night or exercising in secret where no-one can see you?
Do you spend your day counting calories, restricting your food and feel bad, guilty or worthless if you don't get it quite right?
This is how I and others with an eating disorder felt on a daily basis.

So what types of Eating Disorders are there?
The most commonly known is Anorexia Nervosa. Anorexia is an illness which stems from low self-esteem and an inability to cope safely with worries and problems. Sufferers of Anorexia have an intense fear of gaining weight so severely restricting their calorie intake. They may also exercise excessively and abuse diuretics, slimming pills or laxatives. People with Anorexia generally have a low body weight.

Bulimia Nervosa: Bulimia is also a disorder linked with self esteem, emotional problems and stress. You may constantly think about calories, dieting and ways of getting rid of the food you have eaten. Bulimia is actually more common than anorexia, but is more of a hidden illness, because people with bulimia usually remain an average or just over average body weight. Bulimia can go unnoticed for a long time.

Binge Eating Disorder: sufferers find themselves unable to control intense compulsions to binge eat in a manner very similar to Bulimia Nervosa, but unlike Bulimia do not try to get rid of the food. Consequently people with Binge Eating Disorder tend to have higher body weights than those with Bulimia Nervosa. Many people with Binge Eating Disorder also describe fears around body weight and consequently can be highly distressed (and depressed) by their constant struggles with eating and weight gain.

Eating disorders are very complex which means that there can be variations in the typical signs and symptoms. When someone has some or not all of the signs for anorexia or bulimia, they may be classed as having eating disorder not otherwise specified. Regardless of the physical symptoms Eating disorders all have one thing in common, the emotions and feelings that are underlying.
So now we know what Eating Disorders are...lets look at what they are not!

Eating Disorders are not a phase.
Eating Disorders are not a life choice.
Eating Disorders are not attention seeking.
Eating Disorders are not just about food.
Eating Disorders are not caused by the media.
Eating Disorders do not just affect Girls.
Eating Disorders are not a life sentence...recovery is possible

Current research shows that 1.6 million people in the UK are affected by an eating disorder, of which around 11% are male.
Of these 10% of sufferers have Anorexia.
40% have Bulimia. 50% fall into the the category of EDNOS of which binge eating disorder is included.
One in five of the most seriously affected will die prematurely.


I was one of the 10% with Anorexia and a survivor.
As long as I can remember, even as a child I have never been heavy. I was what you may class as naturally slim. As a teenager I even attempted to buy 'weight on,' tablets in an effort to gain a few pounds, so my preoccupation with food and weight loss later in life was a surprise to most.
I was born on march 17th 1967 in Middlesbrough in the North east of England. My parents were North East born and bred, both came from typical working class backgrounds and had typical Northern values.
I arrived several weeks early with a weight of just over 3 pounds!! having to stay in hospital for many months until I had reached my healthy weight. This was not the only time in my life this was to happen!!!

Fast forward now to several years later, I'm 11 years old and in secondary school. The next 5 years were to be some of the worst days of my life.
I was a very nervous and quiet child which to some made me a pushover and an easy target for the bullies.
I was small for my age, skinny and lanky, national health glasses and an extremely unflattering uniform. What little self confidence and self esteem I had was soon to be bashed and taunted out of me. I couldn't escape when passing the school gates either, I was taunted by kids I didn't even know. I didn't feel able to confide in anyone and although I loved my parents dearly parenting does not come with a manual and most of us learn from experience.....
I reached puberty late in life and whilst those around me were blossoming and trading in their vests for ladybird bras I was lagging behind and this didn't go unnoticed!
Our school P.E department had those horrible communal showers and we had an evil teacher who would insist that we all showered together after games. This was embarrassing enough but even more so when you had a chest as flat as an ironing board. One day whilst showering a group of girls turned the water temperature up full making sure I had to run out. They had of course hidden my towel and my clothes and left me standing there naked, in tears whilst they all pointed and laughed. This was one of many incidents too many and hurtful to mention.

I didn't have a huge amount of friends at school, just a few who knew me in class but didn't know the real me. It was many years before I would let anyone know that person.
I was generally a good kid. Didn't smoke, didn't drink, helped with the jobs at home, had a paper-round, went to Girl Guides, Sunday School, church and did my Duke Of Edinburgh award but still there was something missing inside me. I tried to find it within the church, I became a Christian, read my bible daily, went to fellowship groups and tried to be 'good,'. I did make some good friends during this time, real friends but ultimately when I started college a few years later this was just something else to add to my long list of things to tease me about.
At the age of 18, only a month after leaving college I moved 300 miles away on my own with a suitcase, a tape player and ten pounds in my purse. I had managed to get a job in a little Somerset village with live in accommodation. My new life had begun, or so I thought.
The people I worked with were really friendly although most a lot older than me, the job was good but extremely unsociable. We all worked long hours then spent most evening together in the local pub.
Drinking alcohol was not something I was used to and very soon I had started on the hard stuff. I was still very lonely, a long way from home and the only spirit I was receiving was in a bottle of Gin!!
At the age of 18 I had never had a boyfriend, not for the want of trying!! One evening I had a friend over for dinner, a male friend who was several years older than me. We drank some and without going into detail he pushed the friendship a little too far.! I was made to feel it was my fault, it was a situation which made future attempts at relationships difficult.
I made two very good friends in my first few years in Somerset, one which had a huge impact on my life and things which had happened. I even bought a house with them and went on what was to be be the first of many foreign holidays. We would sit and share stories of our lives, where we were brought up, things that had happened. It was during one of these evenings that I had a realisation, a realisation that made me question certain aspects of my life. With these questions came sadness, more alcohol and a gradual downward spiral in my life.
I would take the long coach trip home several times a year and it was on one of these trips that I had a comment from my Gran.. Have you put on weight? You're looking a little chubby.
It was on the same trip back that the sandwiches cut into little triangles that Mum had made went into the bin when I arrived back.
Now I'm not blaming dear old gran for my eating disorder, that throw away comment possibly triggered something brewing anyway. I was already feeling pretty low, hated the way I looked, I saw myself as ugly and never dreamed that anyone could love me how I was. My life was pretty rubbish and I was going to make it better..or so I thought.
The next period of my life is a bit of a whirlwind involving starvation, bulimia, alcohol, exercise, and laxatives. I have no idea how long it went on for but it ended with a diagnosis of Anorexia and a stay in a psychiatric hospital. I will never forget the day that my friends drove me to the beautiful village of Wells. I had agreed to go in as a voluntary patient to try and make me well again. To be honest at that point I was so physically weak I would have agreed to anything.
It was a stereotypical Victorian 'asylum' building, a huge, haunting but beautiful piece of architecture set in the most amazing grounds and gardens. I was on an open ward in a side wing with patients who were less vulnerable. I can remember being checked in, my bags being searched for any prohibited items then having a full physical examination. At the point any dignity I had, had just left the building never to return again.
The hospital had very strict rules. I was not allowed to exercise, could not do any occupational activities or see the therapist until my weight had reached an acceptable level!! I was to eat three meals a day plus snacks, which was ridiculous considering I didn't eat. I was given a certain amount of trust until a fellow patient used to swop plates with me and leave me with an empty plate. Good old George. After getting caught I then had a Nurse chaperon and poor George got a ticking off.
Mendip hospital was a depressing place to be. I shared a room with 5 other women, some who would wail in the night and scream before they were due to go off for their electric shock treatment, You couldn't bathe after 8pm as there was insufficient staff if you killed yourself in the bathroom and the washbasins were all communal. Hideous. I would relieve the boredom by going to the pub for the evening with friends then finding the front door of the hospital locked on my return. The night staff were not impressed when I had to ring the bell to get back in.
The consistency of care was dreadful. I would be weighed every other day, at different times in different times!! I would even pop into town to the chemists to pick up 'supplies' without being found out. Generally though, I was a good girl, I did what I was told...eventually, and discharged myself before I got to my target weight and buggered off to Holland on a camping holiday.
I met my first Husband shortly after leaving hospital and we hit it off straight away. The first few years were amazing. We went to concerts, theatre, ballet, meals out the works. He was the first man I met who really loved me and honestly didn't care about all the superficial stuff. Despite people thinking we were an odd couple I thought we were a match made in heaven. Things move pretty quickly, we got married, had an amazing wedding and at the age of 24 we had our first and only child. 6 years later we had separated.
I still feel sad that things didn't work out as I see it a a failure but we are both happy now. I was a complete cow for a lot of our married life and I think that's due to me not accepting myself and not liking myself. I was very insecure.
It was a very hard split ultimately due to the fact that a child was involved. This saw my eating disorder again rearing its ugly head, trying to give me some control and order in my life and numbing the painful feelings. This was also the first time my new Partner and now Husband had any dealings with 'it.' This time though I had become more devious and more secretive. This was something I was good at. It was a lot of pressure on him as I had lost a lot of friends through my separation and also through a change in job. I'm surprised he has stuck around for so long and is still with me now.
Its weird how each period of past disordered eating remains fuzzy to me now, chaotic and madness.
I managed a 10 year clear of disordered behaviour. I have probably had the same body image issues that most people out there have, my stomachs too big, my thighs are wobbly blah blah blah.I would have a few hiccups where I become obsessive over calorie counting, restricting food but would generally snap out of it.

The last, and probably the worst period of my illness crept up quickly. I was referred to the gym due to problems with my hips and muscle strength. At the same time I had booked a holiday and was worrying about a bikini body, along with this I was struggling with insecurities over a friendship...all combined a sure disaster and a full blown eating disorder.
For the next 10 months my life was a nightmare of depression, self loathing, panic, hatred, fear and anxiety. My life involved around food. I would lie, take to my bed pretending to be ill, say Id eaten, throw food out, binge, vomit, drink too much,overspend on cookery mags, trawl through pro anorexia websites. My face would be puffy from crying and vomiting, I had toothache, sores on my knuckles, hair on my face, it hurt to lie down, I was constantly dizzy, couldn't sleep,freezing cold, joints hurt, stomach swollen, throat hurts, headache, dehydration, vitamin deficiency, passing out, osteoporosis.
All this I thought would make me happy, would make me feel good about myself, would make others like me.........it wasn't about being thin. Yes, I would look at myself and want to be thinner, but it was the achievement, the sense of control over your life,the ability to numb the feelings and emotions and not accept what was happening,just one more pound, then another, then another.
The more I got deeper into it the harder it was to get out. I was taking medication for depression and was sinking further into a dark hole of despair and nothingness. I had no care for myself or even those around me. I was selfish and self loathing an empty shell of a person. I had reached rock bottom.

So how did I recover? This is a question I have been asked many times, a question which has no easy or definite answer. In short, I had to want to recover.
In the long periods of what I would class as recovery I may not be showing classic eating disordered signs but would have the thoughts, horrendous negative body image, low self esteem and a general feeling of worthlessness. My instant reaction to stress or feeling out of control within my life would result in food restriction or purging. It made me feel better, gave me a sense of release from my emotions and a way of numbing emotional pain, all at a cost to my physical and mental health.
My decision to choose recovery wasn't an easy choice. You may find that difficult to grasp, the choice is ultimately live or die, and when I say that I didn't choose to have an eating disorder how can I make the choice not to have one? The problem with starvation is is screws with your head as well as your body. You may think you are in control but that couldn't be further than the truth. Your head is messed, thoughts are not rational, your thinking pattern is all over the place as well as your metabolism. You have well and truly thrown a spanner in your works and it will take more than a pill from the Doctor to fix you up again. The thought of giving up a part of my life, my whole being, my identity was a scary prospect. But this was a choice I made, and the best decision I have ever made. What helped alongside the support of family and friends was my understanding of the illness, the way malnourishment affects your way of thinking, the knowledge given to me on how my body would change through recovery and what to expect. It was during my recovery I became involved in writing. I found it cathartic to put my feelings down on paper. I started writing a blog and became involved in many online recovery groups. I was astounded at what a huge problem eating disorders are and also how misunderstood the problem is. There is a misconception that eating disorders only affect young girls, and an almost glamorisation and sensationalism given to those with anorexia in the media. There was little documented about EDNOS, binge eating disorder or eating disorders in men. The online communities gave me hope and support, it was such an inspiration to hear words from others and to not be judged or misunderstood. To know that true recovery was possible was like being offered a lifeline.

It was through my blogging that I began to write poetry, and use the pen name, 'The Cupcake Queen.' During my eating disorder I had an obsession with baking and would spend hours baking cupcakes for other people. There was always a standing joke in our house that whenever I got thinner my Husband got bigger!!
I compiled the poetry into my book, 'The Cupcake Queen Bites Back,' which went on sale during EDAW last year with all royalties going to sweda.. These will be available for sale at the end of this meeting.

I would like to finish with one of my Poems called 'A Day In My Shoes.'

Don't judge me on what you see,
A lost and broken soul,
Taunted night and day with numbers in my head,
That dinner you eat, it filled me with dread.
Why don't you eat? Its as easy as that.
I wish.....
Don't judge me for what I said,
It wasn't me,
It was the voices in my head,
Don't eat, you'll get fat, you're ugly, worthless,
A failure,
Don't judge me for how I made you feel,
I was keeping myself safe,
I was in control,
Keeping my emotions in check,
Numb, black, despairing of life and living.
A void....
Don't judge me for being, 
Give me a switch,
If I could I would have flicked it ten times over, I would.
And another thousand of times,
For all those still fighting,
And those who have lost......
If I could have told myself how bad it would get,
I would have told myself a millions time over.
I don't judge myself,
So don't you....

Thank you for listening.


Eating disorders awareness week 2019

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