Tag Archive: agony


At thirty, I would have things mostly sorted. I mean, I would probably be settled down somewhere, I’d have a good circle of friends and a supportive and engaging church community.  I’d meet the man who could be my best friend for life and therefore be in a stable relationship and I’d have a challenging but fulfilling career.

At forty, I would be a fully grown woman.Although being middle-aged was a very hazy notion, I suppose I had something of an idea that by this point, I’d definitely at peace with myself. I would be content with my lot, and wise in to the ways of the world. I’d have worked abroad with my other half…. perhaps doing some sort of mission work. I’d be established in a teaching career of some kind. I’d certainly have written a couple of books, and maybe have kids or fostered for a while.

I shudder now at the assured faith of my younger self; my blind faith in the power of adulthood.

I think I must have believed that at key points in my life, there would be some sort of ‘latest update’ that would magically download and install overnight. It’d equip me with new software to enhance my resilience, bug fixes, small but significant improvements to my system. Just like the skin care products which companies like L’Oreal and Garnier so thoughtfully tailor to suit the relevant decade of a woman’s life, I thought I’d somehow just be able to apply certain elements to my life. Elements which would be suited to my age and stage… and again, like the miracle face creams, le28099oreal-paris-anti-imperfections-plus-whitening-cream-for-20-review4these would hopefully just get a bit richer as I got older.

I guess I might have believed that I’d still battle depression, but in my naivety, by late thirties, I would have gained victory over it, managing the dark hours with a quiet stoicism, helping others learn to do the same. Anxiety would probably always be present, but by forty, it really wouldn’t have any significant impact on my life. I’d have learned to combat it using my faith, my wisdom, a range of relaxation techniques and possibly my ole’ friend Pregabalin.

Whatever I imagined, one thing I wouldn’t have believed, is that at the ripened age of forty, I would be sitting in a hospital bedroom, typing a blog about Anorexia.

Nor would I have believed that by the time I got to this grand old age, a whole decade of my life would have been hungrily devoured by the same illness that would starve me to the point of death and leave me with the body of a malnourished child.

I’ve been an inpatient for almost nine weeks now..

You’d think by the time I’d endured four different inpatient admissions and three rounds of day treatment, I’d have got used to the agonies of refeeding. Think again. If anything it’s tougher this time than ever. Not that I’m in a different hospital than ever before, and not that my fellow patients aren’t amazing people who I feel privileged to meet. No… more perhaps that each period of recovery seems to ask for more energy than the one previous to it. It seems to demand more bravery, more patience, a higher pain threshold, more nerve.

At risk of sounding discouraging, I think that the longer a person suffers with an eating disorder, the older they get, the more entrenched it becomes and thus the harder it is to recover from. If there is anyone reading here who is suffering with an ED and is considering getting help, I urge you, please, GET HELP.  Do it before it gets worse. Do it before next week, or next month or your next birthday… Do it now and buy back some time because honestly, it might seem unimaginable, but this illness will sink into you until you are saturated. It sinks in a little deeper with each passing minute and before you can wring yourself out, it’ll rinse you of your strength.

The less time you tolerate this illness, the less time it will need you to fight it and the more of your soul you can save.

Get help.

 

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You know “the grass is always greener…”?  It’s a common enough expression.

But when you think about it, it doesn’t make sense.

WHY green when it’s actually red?

The grass outside my window is no more green than Bob’s my uncle.

I can hear your confusion and I know what you’re thinking. You’re wondering where the hell this is going…  A puzzle. You’re frowning. Figuring out the point.

My point is this: that every time you look at that park, or that garden… you’re thinking that the grass is green. You’re SEEING it with your own eyes. ACTUALLY SEEING it.

So you believe it, right? You can see the grass is green so you believe it. Perhaps you’d even swear to it.

But you are, quite simply, wrong.

It’s not green.

You’re still frowning… or your lip has turned up slightly at the very edge…

What will it take to convince you that grass, as a natural product of this beautiful earth, is bright red ?

Stop and think. Just for a few seconds. What would it take?

Because that’s what everyone else sees.

Everyone else knows it’s red.

 

Have they just been agreeing with you?!

Going along with you… Not daring to challenge your view.

Nice one.

That’d be why you still believe it’s green.

 

I know and understand that you THINK this is madness. I know you SEE green… But it’s red.

FACT: Everyone else knows and sees red. You alone see it as that bright green colour.

red-grass-

Stay with me. I’m trying to make sense (despite all evidence to the contrary).

It can be argued that a certain degree of body dysmorphia is part of the human condition.

However, whilst for many of us the distortions in our perceptions are not significant enough to cause distress, it’s very difficult to gauge just how accurate our perceptions are, particularly when they involve our appearance. Hence, a person may grow up with a mole on their cheek and barely see it, whilst another with the same mark, may grow up feeling ACUTELY aware, paranoid even, that it’s all anybody notices. Certainly it may be all THEY themselves notice.

Although each case is different, Anorexia and Bulimia often incur constantly shifting distortions in the sufferers perceptions of their body. the extent of this may depend on the individual’s mood, the amount that they’ve had to drink, the whispering voice of their illness, or how full / empty they feel at any given moment. It doesn’t appear to matter whether the ill person is a  tortured artist or a brilliant scientist, the degree to which they are susceptible to absolutely absurd thoughts about food and the body’s relationship to it, remains the same.

For example, as a level headed and rational being, I know that I CAN’T be big in any way because the measurements, weights, body mass I am faced with are completely accurate. The ratio is too low for my body to be fat; too low for my body to be healthy.  The figures are scattered on the green grassy earth.

As a sufferer though, I look in the mirror and that grass is DEFINITELY RED. I can SEE it. DAMN IT! IT’S THERE IN FRONT OF MY EYES

AND YOU’RE STILLSTILL trying to tell me it’s green!

I’m fine! There’s nothing wrong with me! I look normal… healthy.

Some days, my arms look chubby… and my thighs often look massive towards the end of each day… but generally, I look perfectly normal.


Arguing with an Anorexic can be hugely upsetting, incredibly perplexing and downright frustrating. You see one thing, they see another.

Families in particular will suffer the agony of watching their loved one deny the truth; a blank refusal to hear the other side of the story. It’s painful to be stonewalled or to have your words hurled back at you. Few can identify with the desperation and helplessness experienced by screaming at a skeleton whose rock solid belief is that they are ‘fat’ or ‘fine’. Not everyone can trace the ridges of the bone along the clavicle of a loved one who refuses to eat because they think they’ve got plenty of fat still to lose.

My message is convoluted. It’s a poor attempt to somehow explain the complex illusion / delusion experienced by the victim of an Eating Disorder like Anorexia.

I know many, many women who dislike parts of their body, or at least, are dissatisfied with particular aspects of their appearance. When someone develops an ED, that dissatisfaction, becomes a rigidly held belief which apparently robs them of a realistic view of themselves. Much like joining an extremist party or cult, Anorexia transforms the mind in such a way that makes reasoning with them, impossible and unrealistic.

Hopeless as this sounds, my final message is to anyone who is having to watch a loved one starve .

Don’t give up.

It can be heartbreaking and it’s often a long, tiring path, but if there’s one thing that will help to save them, it’s a quiet, pervasive message that it’s the ILLNESS that’s lying to them and not the rest of you. If you’re met with a brick wall, don’t employ a bulldozer. You’ll flatten the person rather than the illness.

Remember the quiet echo of the drip that splashes against a stone surface. Gentle but unswerving,  the message will sink in, and though they may always see a tinge of red, at least they will accept that, mostly, grass is green

water on stone

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.

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

It’s very, very difficult to describe the mental torment that can suddenly twist itself in and around the brain of someone suffering with an eating disorder. I’ve struggled to find the words.

You can perhaps imagine the immensity of my relief when I stumbled across a talk given by an American doctor called Laura Hill. I was searching through TED, looking for interesting talks. when I first heard her. I was amazed when she began to describe ‘the noise’ in MY head, when I am faced with choices about food. I had that overwhelming sense of awe and relief and terror that you get when somebody describes your innermost, thus far unarticulated, maybe even unformed, thought traces… You know the one, right? That whole ‘strumming my pain with his fingers, singing my life with his words’ thing?

What she proceeded to do blew a hole right through me.

She had a tape recording of what she called ‘the noise’. The noise experienced / heard by an Anorexic whenever they have to think about selecting food from a menu, a supermarket shelf, a fridge, freezer, list or lunch bar. She played this raw cacophony of voices, a medley of ordinary conversation, accusatory interjections and deeper inner ‘voices’ commanding, bargaining, questioning.  Listening to it, I feel as though she has somehow wired up my brain and translated every thought, every voice, every snippet of inaudible agony, into words and sentences. It’s the chaos of the calories, the constant mathematical equations, ratios, percentages that need to be calculated in order to work out how much energy is allowed, or NOT allowed. The numbers that fly in and out, unable to find a carpet of reason on which to rest, the foods that fall into the red, the orange and the green zones of safe and unsafe foods; the protein, the fat, the carbs, the fruits; whether I’ve been more active or more sedentary; the form the food takes…. All these factors dart like pinballs across the Anorexic’s mind, making a noise that you could drown in.

It’s noise of the kind that you might expect in the psychotic mind. Noise that, for me,  doesn’t stop unless I make the decision to abstain.

And then

silence

complete peace.

https://www.youtube.com/watch?v=m0M-lbItSqk

I tried to put together a video using Dr Hill’s sound clip. It’s not brilliant. I’ve never done it before… But it might make someone else feel understood… or give a little insight into what is happening in the mind of a loved one as they try to pick a snack, or a meal.

It might help somebody understand why it is so very difficult to recover. It’s not just as simple as ‘eat’, because just thinking about eating invokes the noise.

What I have tried to do is to argue with this noise, shout back at it, reason with it… But this is rarely helpful and I have often resolved to skip the food in the desperate rush to close down the clamour.

What I am now trying to do, is to allow the noise to exist without giving in to it. Allowing it to happen but still allowing nourishment of some kind. I hope that the practise of this will eventually afford me a ‘quieter noise’, a lower volume if not complete peace. One day, perhaps they’ll research this illness more and find a drug which will block out the noise and the panic, but for now, I will continue to work towards recovery despite the noise.

Does anybody else identify with this? If so, what helps you and how do you deal with it?

ribsAnorexia Nervosa: A disease which manifests in the relentless starvation of the body and the mind; a denial of a basic human need; a refusal to satisfy the gnawing hunger for nutrition.

It never ceases to amaze me then, how an illness defined by such dreadful starvation, manages to devour so much.

And make no mistake, whilst the body turns to bone and the organs starve to standstill, Anorexia is eating.

It eats your flesh and then gnaws at the bone. It sucks on your brain until your mind is an empty city, a fragile ruin where thoughts move slowly and decisions make tears.

It devours your life, your work, your relationships; chews up the potential for a future and spits it out in a dark mess of would have beens and might haves.

It feeds on the hearts of your loved ones; a painful suckling in the darkness of the night, a sharp breaking away in the cold light of the morning.

Like a parasite, it swells and fattens as its cotton – mouthed host withers.

And it only stops, when it has eaten everything; from the body, to the life, to the dreams of its victim.

You won’t find this definition of Anorexia in the BMJ, or the DSM or the ICD.

But I swear, this is one of the truest definitions and criterion you’ll find.

I have just completed my third week of refeeding at the day treatment unit and it has been nothing short of agony, which is a tough thing to be honest about because I want this site to be about positive encouragement and support. I want it to be inspiring for those who are thinking about going for treatment, motivational for those who are sitting on the fence, unsure which way to drop.

However, I also want it to be realistic and honest. Just as I’m not a great advocate of polite, ‘home counties, garden party speak’, I’m not great at literary niceties. It is possible (on reflection) that I value honesty above all other virtue. In the words of wannabe surfboard – wielding  teens the world over, I have to ‘keep it real’.

Back to the concept of agony then.

To any ‘normal’ person (for the purposes of this post, let’s just assume that such a thing exists) the idea that sitting around and eating all day should be anything other than a pleasure, sounds ludicrous! If I offered most of my friends the chance to take a few weeks away from work to join me in treatment,  they would literally jump at the chance! I almost wish that I could offer it as a free gift on one of those LoveFilm ‘friends and family’ type cards for Christmas.

For an anorexic however, the relentless pattern of snacking and sitting and eating and talking, resembles the slow medieval torture of The Rack; the steady tearing of bones from sockets, muscles from tissue and flesh resembles the inner sensations of being torn apart. Sounds dramatic? Perhaps, but I fail to find metaphors which can adequately illustrate the pain of beginning recovery.  Admittedly, being severely underweight heightens the trauma of refeeding, physically as well as mentally, but it’s a pretty horrendous process wherever you are on the BMI scale.

What I think is an important point to emphasise at this stage though, is that despite the immense increase in my calorific intake, in three weeks, I have only gained point 5 of a kilo overall. That’s a pound (in old currency).

We are weighed twice a week on a Monday and Thursday  (an event so anxiety provoking I am woken by palpitations in the early hours of a Thursday morning).  The pattern for me has been a predictable gain on the Thursday and loss after a weekend of Anorexia V Relief at ‘Respite’. The harder you work at the eating, the greater the agony as the Anorexia rears its demonic form, screaming and contorted, afraid of losing even an inch of its grip.

agony1

At this point, there is no comfort.

If Anorexia is being frozen to death, treatment is a hot water bottle that burns if you hold it close.

It flogs as it spares; it blinds as it darkens; it kills as it saves.

And just as the illness commands a dying body to keep dragging itself over upturned shards of glass, so recovery demands that the same body be dragged in the other direction.

Agony.

But

if you have to suffer it,

it may as well be suffering towards recovery.

Right?

There Must Be More of This

imag0351_1_1_1.jpg

…. than I can currently see.

I hope that there is hope.