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spaghettiJust eat! It’s really that simple”

The well meaning eyes of family and friends cast along the frame of an ED sufferer; pupils travelling the ridges of the clavicle, the skeletal hands and down the birdlike legs.

Just say, I CAN do this

Just make up your mind that you’re GOING TO do it and then DO IT

Lots of ‘justs’. Lots of good suggestions. Lots of spilled frustrations.

So why isn’t it ‘that simple’?

Surely it’s not rocket science…

Well…. in actual fact, although it’s NOT about rockets, there is quite a lot of science involved; physiology to be precise.

When someone is well below a healthy weight, the list of psychological blocks to recovery may be a mile long. However, unbeknown to many, there are also many physiological reasons. Chemical and hormonal shifts in the brain that induce behaviours which can make it incredibly difficult to behave in a ‘normal’ way around food. Experts in the ED field will tell you that a full recovery isn’t possible until weight has been restored to the point where a patient’s BMI is between 20 and 25. In fact, many argue that it is ONLY when a patient reaches a safe, healthy weight (and so, BMI) that recovery can begin.

I agree.

One of the strongest pieces of supporting evidence we have for this idea comes from a ground breaking, wartime,  experiment into the effects of starvation, performed by Dr Ancel Keys.

In 1944, as war raged throughout the world, Keys recruited 36 young men (mostly conscientious objectors) all deemed to be at a peak of physical fitness and mentally / psychologically healthy.  Over a period of a year, he studied the behaviours and mind set of the men as he systematically cut their calorie intake and increased their levels of exercise . By the end of the ‘starvation phase’, the men had lost around a quarter of their body weight and their physical appearance was skeletal.

Photographs of the subjects reveal bodies not dissimilar to those who had suffered in concentration camps. Certainly, the men appeared to have been subject to a lifestyle which denied them of their most primal need; much like the self inflicted discipline exercised by those with Bulimia or Anorexia Nervosa.

For someone attempting to recover from an eating disorder, the most pertinent revelations of ‘The Minnesota Experiment’ lie in the fascinating changes in behaviour displayed by Keys’ subjects. Behaviours and attitudes practised in secret, cloaked in a horrible sense of shame, perhaps feared by the sufferer to be so ‘odd’, so far from ‘normal’ that nobody should ever find out… Behaviour that actually, The Minnesota Experiment, proved to be a direct result of the human body being starved and therefore, some way beyond the sufferer’s control.

Keys documents that the more the men starved, the more overwhelming was their obsession with food. Food became an absolute priority while the rest of the world, family, politics, opinions, religion etc, all faded into obscurity.  The men were restless, their minds unconsciously forcing their bodies to forage for food, allowing little sleep as the need for nutrition overrode all other basic needs.

Interestingly, all the men developed ‘abnormal’ eating patterns, becoming ritualistic, taking up to two hours to eat a meal, cutting food into tiny pieces,  mixing food with liquid to make more of it and hoarding food so they could take it back to their bunks and graze on it. Moreover, the thinner the men became, the less able they were to judge their size as being thin or underweight. A few of them even went so far as to express thoughts that others were too fat. Spot the quandary of an Anorexic.

There were many, many physical effects, most of which an Anorexic will experience as par for the course, but in order to explain why it’s so damn hard to ‘just eat’, I wanted to draw from the physiological findings of Keys’ experiment. The state of semi starvation, of extreme self denial, is in itself, a trap. Being below a healthy BMI produces its own set of barriers to eating, making the initial ‘pre recovery / weight restoration’ phase about as difficult as it could be.

It’s really not as simple as it might seem.

Certainly, during the period of re-feeding, the men ate happily (obviously not suffering from an ED) but my point is that whilst starving, the men underwent such changes to the chemical balances in the brain, that food became an absolute obsession and habits previously unheard of, became commonplace.

When an Anorexic tries to recover, they not only battle the mental blocks that the illness creates, they also have strange, unseen physiological blocks.

(Another terrible hidden suspicion of The Anorexic, that their appetites will become insatiable once they begin to refeed, is also borne out in Keys’ evidence, producing yet another barrier).

I could go on and on about this great study in starvation, but it’s all for another post. What I want to convey is that, despite all appearances, recovery is never as straightforward as ‘just eating’. Refeeding, within itself, is fraught with unconscious physiological blocks and hurdles.

For me, personally, despite this knowledge, and armed as I am, I still stand on the wire, looking at that vast expanse that is ‘no man’s land’, weighing up the risk, trying to see where the mines are set, where the searchlight falls.

It’s been ten years raging, this war.

gripping barbed wireI still want to fight…

…but the real enemy

lies in the woodland

on the horizon

I still need to make it to.

THAT’s the pathology of an eating disorder.

THAT’S the physiology of starvation.

Loss – A Reaction

I have an ongoing relationship with Satire. A kind of 'well you can't choose your family' relationship. Which is fine, so long as I keep him to myself and chose not to share his perspective too often. Satire, I've learned, is best applied to matters of a political or sociological nature. Not really appropriate for matters of the heart and soul.
Trouble is, Satire is a quite indiscriminate... I can't shut him up.
And so, as I find myself explaining that I lost my friend last Tuesday, I inwardly cringe at the familiar voice that tells me how VERY careless I must have been, to actually LOSE a friend, in THIS day and age where mobile communication is EVERYWHERE.
Whilst my kin continues to emphasise the absurdity of a whole genre of 'death euphemisms', my listener is looking questioningly at me, poised to offer condolences, dewy eyed as I further explain the tragic circumstances of my friend's death.
And they were tragic. A sudden accident, and the young man who helped me through some really tough years of my life is gone.
Just like that. (I know... I know... I hear Tommy Cooper too)
The news broke over me just like canvas on a tent frame. All in a moment the world was muted and time passed unnoticed.
I stayed in the tent for a few days. The thoughts almost entirely about him and the family he leaves behind. I could hear the noise outside, the people's laughter, other news, frank discussions but none of it seemed relevant.

Sitting there, I think random thoughts.

  • First: how am I supposed to 'be'? - Is my reaction 'normal'? Do my meds keep me numb?
  • Second: How can the world just... carry on? Why doesn't everyone know?
  • Third: My grief isn't allowed because in the wake of the enormous loss his wife and children are facing, my own is so pathetic
  • Fourth: I live some way away. How do I support them? How can I help my god-daughter?
  • Fifth: Sadness and grief are not the same thing. Sadness is only one part of grief
  • How fast death can sweep life away. How precious life is while we have it
It's helpful to make this concrete. Writing it is easier than I thought.
This is the sort of post that might finish with one of those cloying one liners you see stitched on cushions and stencilled on laminate... Vintage schmaltz on distressed furniture.  I'm angry at death for being so cruel. My faith affords me the certainty that my friend is in a FAR better place, and it IS a small comfort. But my heart is definitely a little broken and as always with these things, Satire's hand ensures I go spiky above sorry.

 

Dear ___________,
agony1

It’s hard to  know where to be
gin because I cant remember where or when the beginning was.  What I DO know is that you’ve no idea how hard I’ve had to work just to keep things balanced.

I want you to stop and shut up and LISTEN.  I’m going to try to tell you about what you’ve done and what you’re STILL doing. It’s a hard thing. Bear with me.

Despite your attempts to poison me and to harm me, I fought to stay healthy. I cleaned your blood, carried it round, battled illnesses, healed up your wounds.

You crossed what had become a very blurry line around ten years ago.  Then the real brutality began. You fought me with systematic, dogged determination; tried to change me, control me, reshape me with the tools of death you fast learned to use.

The irony of the fact it began with a health kick hasn’t escaped me. When you cut out the cigarettes, I was overjoyed! Clean breathing at long last. I’d been clogging up with thick tar, and in some ways, I think I’d resigned myself to the blackness, and to the knowledge that it would continue to seep and creep, until it covered all my tender healthiness.

But you cracked it! And I began to work at cleaning it up, helped greatly by your exercise and your healthier lifestyle. It was so good for a while.

Up until you stopped feeding me.

At first I wasn’t worried. I don’t even know when I first noticed. Those workouts of yours grew progressively harder to sustain. When I began to flag, instead of the little rest I was used to, you pushed me all the harder. After sprinting half a mile, you’d ramp up the speed. For a while, I thought it was normal; y’know, a good technique for burning my fat and making muscle. I trusted that you knew your stuff. I figured you’d stop when I reached my optimum, and I worked so hard for you, did what YOU wanted. Stretched to the limit, I kept going, convinced you’d be satisfied with my performance.  It’s hard to acknowledge just how far you fell from my expectations and it’s quite impossible for me to understand.

Over time, you and I underwent a transformation that nobody, NOBODY could believe. I think it’s fair to say that it simply wasn’t a you that I recognised.

You were brutal.

Whispers of encouragement became barked orders as coach turned to tyrant. I began to dread you.

Your lack of mercy started to take its toll as I struggled to balance your system.

I tried to tell you. I couldn’t help but let you feel the impact of your cruelty. You can’t flog someone half to death and expect the scars not to show. I stopped biting my lip and started to shout, but you lashed me harder, your determination a steel whip, your mission a desperate urge to keep control.

And all this talk of exercise is perhaps an avoidance of the most painful point: that of starvation.

I struggle here.

The louder I cry, the harder you starve. The more I plead, the more you withhold. If I let myself think of food, you give me less, and yet, I’m so hungry, I can’t think of anything BUT.

You’re killing me.

It’s not rocket science. If you don’t take care of something, it’s going to fall apart.  I’m SO tired of having to hold you up. You demand so much of me but give so little; a cruel rider lashing at his horse, numb to the pain of its seared flank; numb to the deep ache streaming down it’s legs, for all that matters is the win and the blinkers of victory blot out the damage.

If I was a separate being, you’d be done for abuse. The cruelty is almost intolerable. You tease me with the broken edges of foods that I crave. You tell me I can have it, then, just as fast, tell me I can’t. I’m starving and you lead me to the fridge fskeleton appleull of food that I’m not allowed to eat. Like an object of worship, you kneel in front of the full shelves, and as I cry that it’s nourishment you only see numbers.  For food has become a mass of calculations that stream through this brain, tangled wit
h the inevitable bargaining script of ifs and buts and onlys… And all the while, my mouth drools.

You’re breaking me. My bones are dry and brittle. Osteoporosis casts shadows on my hips and my spine is wearing thin. I can’t remember how many years since I bore the ache of fertility. This womb dry and cold, no longer fit to feel the moisture of tiny breath.

Every step is painful as bone grinds on stone. Every step is my protest. And yet, you carry on, rising above the screaming soles, too frightened to stop. You run away from me, barely look at me, only glancing to check that your clothes cover your skin.

I am weary, made tired by your disdain. I am weary of being underfed, ignored, tempted, denied.

I am weary of being brought to the brink of health, and then being starved to the brink of death.

I am weary of daring to trust that I no longer have to hunt to survive, then being shot at when I rest.

I am weary of empty promises, of bearing the weight of your illness.

If you continue, we will both die in this civil war and nobody will ever know who won or who lost.

All of me will rot; but, you if you remain, will rise above the webs of half rotted reasons, above the dry dust of me

And it will all

seem

so

completely

senseless.

******************

I didn’t want to seem rude when my very lovely clinician suggested writing a letter to myself. I almost squinted with the effort of holding back on the eye roll, resisted the sideways pull of my lips.

Been there. Done that. Got T-shirts to clothe an army.

But. This was a bit different. Not a ‘ years from now thing. Not a letter to myself, but a letter FROM myself. More specifically, from my body.

I put it here to remind myself why I need to keep eating. I also put it here hoping that it might be helpful in some way, to someone else.

 

 

 

.

 

 

 

… I’ve given up blogging… Anyone stumbling upon this site could be forgiven for thinking that this is just yet another open ended account of a person whose fingers stopped typing, whose mind stopped composing.  I come across them so often. Those who suddenly stop. Dead? Fulfilled? Too busy?

Anyway, as I say, to all intents and purposes, it looks as though I too have joined the unblogged.  The reasons are many but, irritated at the fact I feel something akin to guilt, I am deliberately choosing to keep them to myself. (As though THAT’S going to make a difference).

For anyone interested, what follows is an update.

After thirteen long, gruelling (yes, that is a pun on hospital food) weeks, I finally left the unit where I was an inpatient. In truth, my reasons for choosing discharge over a longer stay were driven by the Anorexia. A fact which I was very open about but also very upset and frustrated at.

The expected rate of weight gain was a minimum of 1 kilogram  per week. If this wasn’t achieved, the weekly ward round discussion invariably resulted in an ‘increment’ being added. In the language of the real world, it means that another 300ish calories were popped into your meal plan, so in addition to your 70g serving of breakfast cereal, you’d have 2 pieces of buttered toast in the mornings, or a pudding after your lunch, then another at dinner… All these options discussed, argued, wept over, refused over a patient’s admission.

My second time in this unit, I got as far as a second ‘increment’ and was defeated by the addition of puddings.

Many readers will scoff and shrug at this point, unable to comprehend the absurdity of the Anorexic dilemma. I get that. I too find it ridiculous that, in an underweight, malnourished state, I refuse to eat a small bowl of apple sponge and custard (though honestly, you could fill walls with the stuff) because I am terrified of what it will ‘DO’ to my weight… I’m scared that that bowl will be the thing that layers itself onto my thighs, adding inches, smears itself around my insides, pushing me outwards, thickening my stomach, disguising my waist.

It’s craziness.

“Not very PC!” cries the world of mental health.

“Not very empathic!” cry the sufferers

But it is. I insist. It is crazy. Which is why, like it or hate it, Anorexia Nervosa is a mental illness, not just a fad or a phase, not an addiction, not a lifestyle choice, not a decision taken by the vain. It’s completely mental. It’s a trick played in the mind of an otherwise very rational being. It almost borders on psychosis; the infliction of unreality, the blindness, the invasive thoughts and sensations.

Recovery though, that IS a decision. It’s one I made when I chose to go into hospital, despite my knowledge that I would have to face my worst nightmares. Despite the fact I would end up crawling on my floor, doubled up in an unspeakable and inexplicable agony.

I’m not saying I want a medal. I’m not boasting. On the contrary, when the going got too tough, I ran. But I’m home in a better state than when I left. What I forget every time though, is that the freedom that looks so appetising (pun-tastic here) from the confines of a prison, isn’t freedom at all. I remember now that the prison isn’t a locked hospital ward. It’s not twelve bedrooms down a squeaky corridor, or a cramped obs room where you sit in stillness til your time of rest is over. The prison is inside. It’s there when you’re ‘out’ as much as when you’re in. The difference is that the freedom you smelled on the inside, comes from not pla
ying by the rules you have to abide by when you’re in.

Fprison-bars-handsreedom for me, right now, is what I get when I skip a snack or skimp on a meal. Freedom is exhilarating, dizzying, confusing. It’s less calories than I had in hospital, less carbohydrate, less fat. And I feel great… in the moment…

But in an cruel, ironic twist, I’m still a prisoner. And it’s at the times when I most celebrate my freedom, that the walls move closer and the chains get tighter.

In my last post I think I may have explained that I was accepting a third round of inpatient treatment, which I hope will go some way towards explaining my temporary absence from the blogsphere.

It’s been four weeks.

Four weeks of a graded increase in food.

Four weeks of setting up my small bedroom and equipping it with things that will make it look less like a hospital and more like student digs.

Four weeks of adjusting my routine; of getting used to eating six times a day,  of sitting still in a crowded communal lounge for a total of four and a half hours each day, often subjected to death by American ‘comedy’ interspersed by the even more torturous Jeremy Kyle show and Hollyoaks.

Four weeks of sussing out the eight other patients; logging their individual idiosyncrasies… getting to know who experiences distress at the mention of the weekly menus,who cant touch anything after eating for extreme fear that there exists a phenomenon whereby calories can be transferred onto any object she touches.

Four weeks learning to tread carefully around topics others find ‘triggering’, learning who responds to a hug and who shrinks from it, leaving and receiving little notes of encouragement and kindness.

Four weeks of interacting with different staff nurses and health care assistants.

Four weeks of twice weekly ‘weigh ins’; the unavoidable moment of fear, where figures flutter round, and then pierce, the early morning brain fog.

Four weeks and I feel hopeless and despairing because the pain of weight gain, albeit gradual, feels increasingly frightening and I just don’t know if my courage can hold out for the long haul.

record-player2

… And we’ll all sing along like before…

Goes the song.

Irritating when your internal MP3 is stuck on the same track and no matter how hard you shake it, it won’t stop. Trying to get away from it is just about as effective as trying to go on holiday without your head. And don’t we all wish we could do that at certain times in our life. Take enough hallucinogens and maybe it’s possible, but they’re not exactly cost effective and the insurance you’d need to take out is ridiculous.

No.
No way around it but to play enough music to flush this one out of the system.
This particular musical ghosting is a song by Del Amitri (who for some unknown reason, I always confuse with Dire Straits). An especially depressing number, aptly named, ‘Nothing Ever Happens’.

I guess it’s the theme of repetition that lends the song to my worn out inner ears; and for good reason.
On Wednesday, I retrace my tracks to the very same unit I was in over Christmas.

Yep.
That’s right.
Wednesday will see me standing outside what is going to feel like Hell’s doors.
And to be clear, it’s not that nothing will have changed, because I have. My illness has. My thinking has. I’m not on exactly the same rung of the ladder as I was in December.
What is hard, is that it’s the same old hole. The same darkness. And, pretty much the same distance to the light. (So maybe I AM on the same rung…)

Hence, ‘we all sing along like before’.

Last time I came out  ran away because I couldn’t stand the increases in my diet. I left with a BMI of 15. Clearly not recovered in any sense really… Although it felt like it.

I want this to work… which means that I will have to work. Very hard.

It will be bearable, though it won’t feel it.
It won’t kill me, Ironically, it could save my life. But it won’t feel that way because the process of weight restoration will involve the slow death of a part of this illness, so it will feel like it.
In all the darkness, I must somehow manage to fix my eyes on a light I will not always see.

In order for recovery to take place, you have to believe that, just as there is always a sun and a moon, there is a new life beyond, and there is a different person behind, the illness / addiction.
The courage it takes to make this leap of faith is immense and for me personally, I don’t know if I can sustain it.

This week a young girl I was an inpatient with was cremated. A shockingly stark reminder of Anorexia’s power to take lives. It’s so easy to forget the facts. Eating Disorder charity BEAT are clear that “Anorexia has the highest mortality rate of any psychiatric disorder, from medical complications associated with the illness as well as suicide. Research has found that 20% of anorexia sufferers will die prematurely from their illness”.

Hard to deny the seriousness of this illness. Yet, it is so often misunderstood and misjudged.

Star Fall – for S & C

Same sky, different star

Eighteen years

fly fast

Moon behind the clouds August 2015

Moon behind the clouds
August 2015

Sometimes glimpsed

on clearer nights

your incandescence

burning bright

Other times,  faded,

harder to see,

a thin ship to sail

on the widest of seas

Sometimes the darkness

covered your face

but couldn’t extinguish

the core of your blaze.

Now, I search the sky

ravage constellations

cry

eyes blind, stream like rain

calling to see

your star again

I reach out

tear black canvas

fingers finding

vacant nucleus

this dark hole,

from which your star fell.

And I howl

at the heavens

And the heavens say to me:

Cry not

for those who fall

for stars who drop

don’t land at all

At once caught up

by beams of sun

the point at which

we’re all begun.

Drawn close to heat

and now they shine

with greater brightness

all the time.

Firefly ©2015

I’m not going to write about all the reasons why I was the least likely host site for Anorexia to burrow into. You’ll just have to trust me when I tell you that nobody could believe it, me included.

However, just ONE of the reasons why I am an unlikely candidate, is the fact that I have always been regarded as being “a block of sense”.

It’s true, I have suffered with lifelong anxiety, something which has only really been acknowledged in more recent years, but as a general rule, certain phobias aside, I really am an incredibly pragmatic, diplomatic, rational thinker.

I don’t mean that I can do all the lateral thinking puzzles that MENSA books torment people with. I don’t have an endless chain of resolved Rubik’s Cubes.  And I don’t sit down everyday to complete the Times Cryptic Crossword, just for kicks.2000px-Rubik's_cube.svg

No.

However, I DO have a high proportion of common sense and very level head.

I don’t mean to blow my own trumpet, and again, you’ll have to trust me when I say that arrogance isn’t something that has been a strong feature of mine, but at the end of a long chat last week, a struggling friend looked at me quizzically and asked, “how did you get to be so wise?”.

At the time I shrugged it off, but later I heard it echo and I wondered… How come I have all this wisdom, and yet, can’t apply it to myself. How is it that I can see lights in other people’s tunnels, yet my own is the darkest shade of black? How can I have such insight into the pain carried by others, while I stumble in blind circles? Why can I feel what they feel, but not what I feel? How is it that people are consistently impressed with my intellect, my ‘wisdom’, when all the while,  my Anorexia is behind the scenes calling the shots.

It was my friend’s question that spurred me to write this post, because I want to illustrate something of the devious nature of an Eating Disorder. I’ve heard it suggested that sufferers of this illness choose to be thin in a ‘supermodel wannabe’ sense; that it’s vanity. I’m here to set the record straight. On the contrary, my illness makes me uglier, far less attractive.

I’m writing to explain that I CAN’T EXPLAIN how it is that my rational mind understands that I can’t be fat. It sees the figures on the scales at weekly weigh-ins at the unit. It hears the calculation of my (stupidly low) Body Mass Index, and yet, the Anorexia wraps itself round it all, and perverts it, twists it and denies it.

Lots of people ask the question, ‘do Anorexic’s see themselves as ‘fat’? It’s a massive (no pun intended) concern for those seeking understanding.

I know I’m not fat. Many seasoned Anorexics KNOW this on some level. I do however, feel that I look ‘normal’. I don’t see ‘underweight’. I don’t EXPERIENCE ‘thinness’.

So, I’m shocked beyond belief at a picture my dad takes of me.Picture altered to make background less recognisable.

I can’t recognise the scrawny person in it. She can’t be me. surely?

This is what I want to purvey. This is what I want to educate people about, because I think it’s the hardest aspect for those who watch, to understand. A person may have an IQ higher than the year they were born, but their perception of themselves can be as skewed as the government data on employment. Even with this photo, and the fact that I’ve lost weight since. I still cannot compute that I really look like that.

Such is the complete distortion of an otherwise rational mind. It’s one thing to know something in your rational mind, it’s another to experience it as ‘being real’. In this sense, I make the (somewhat controversial) assertion that Anorexia has an element which is akin to psychosis. This is where the illness becomes a mental health problem, rather than a ‘state of mind’.

 

 

I know I’ve been quiet. A post is long over due…

It’s been so hard to discipline myself to write. My mind is like the end of a badly but piece of rope… I can’t seem to get all the fibres to line up enough to thread them through the nerves that make my fingers form the letters.

In recent weeks, I’ve talked to a number of people who have had little or no understanding of Anorexia. After each, I’ve sworn to write with the intention of educating people who are interested and want to gain an insight into what it might be like to live with the illness, and also to live next to it.

I am going to try to put a post together over the next few days so watch this space!

frayed-rope-1960x900_34210

It’s as simple as that really.

Whether it’s an individual or an organisation, if they have a responsibility, they need to be sensible. That’s why responsibility, the notion of it, is an adult thing. Many adults find themselves saddled with jobs, mortgages, children, pets… You hear people harking back to the halcyon years of our youth; waxing lyrical about the days of freedom; days where their minds, clear of clutter, could imagine and dream and create.

Why do they seem so alluring, these days of growing pains, curfews and restriction?

Obvious right? Because childhood is a time of careLESSness; a time without responsibility.

Children aren’t too great at responsibility. They lack the breadth of experience which provide us with the gift of foresight and hindsight. They forget things because they drift more easily through the mists of their creative minds. They have different priorities and values.

So it’s an adult thing then. And as adults, we find ourselves responsible for rather a lot of things, and (more terrifyingly) for rather a lot of people too. *Note, some find this more frightening than others

And really, responsibility, is just about being sensible. Taking a common sense approach. Using logic and sensitivity.

Why is it then, that in the twenty first century, in what is generally understood to be a ‘civilised society’, do we have media who behave in the most IRRESPONSIBLE fashion?

Can anyone explain it to me?

If it was ONE person, then maybe I’d get it. I mean, everyone is irresponsible sometimes. But a whole group? A whole team of, God knows how many, people? Photographers, an editor in chief, the creative director, features editors…

A whole menagerie of magazine employees, and NOBODY figured that featuring the Yves Saint Laurent advert which clearly depicts a horribly underweight model, would be grossly irresponsible?ysl model

Honestly.

I’ll write more on this, but my initial reaction is this.

They’re just

so

very

silly.