Category: Agony


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?

It’s that time of the year again.

The first brush strokes of autumn begin to tinge the greens and yellows of late summer. The air grows a little cooler; the sun, a little whiter and dawn’s breaking, slower and quieter.

And then there are the spiders.

Scaffold-legged, they run amok in our houses, apparently mo’t measured the fear of a fully signed up member of Arachnophobes Anon against the brazen tap dance of these too-quick-for-comfort creatures.

I digress hopelessly.

The fact that I fall apart when faced with a spider contrasts markedly with the way I react in a crisis. Put me in a room with the spider and I break into a cold sweat. I experience weakness in my major limbs. Paradoxically, when faced  with a REIMAG1372_1AL shock or crisis, I become almost ultra cool… Weeping and woe-ing makes me impatient and I will veer away from any kind of hysteria.

Today though, I was shocked to the core and though nobody would have known to look at me, inside I was choking on my own words. Words that wouldn’t form to express, to heal, to challenge, to cut through layers of psychotic deception.

Sometimes, words won’t do. They don’t hold enough power.

Then, there is nothing to do but fall to your knees and cry out. Cry for help from one who is bigger than the chaos outside and more powerful than the feelings within.

Today, I cry. I cry for a friend whose mind has descended into the hell of psychosis. The first episode.

I couldn’t help.

The irony is, as we sat on her hospital bed, she told me that her Anorexia has never been so good.

Straight swap? I wish I knew more about the mind.

For whatever reason, I feel the need to preface this post with a declaration that I do not buy the Daily Mail. Finding it, all too often, a thinly veiled excuse to propound nationalistic views, I frequently have to remind readers that the world is not really that bad a place unless they believe all they read in this trussed up tabloid.

I was, however, drawn to the full page article about a long suffering mother, who, five years after her daughter’s tragic death, has made the decision to release the girl’s diaries. Diaries that record the tortured journey of Loredana Verta, a bright, talented sixteen year old, who was dead within three years. Heart attack.

Rightly or wrongly, some of  this young sufferer’s innermost thoughts and feelings are laid bare in newsprint for all to see.

The workiarticle-2713000-202CA0CA00000578-585_634x910ngs of this girl’s mind are utterly consumed by the illness. Her writing is littered with scribbled self loathing, capitalised screams of  “I HATE ME… I HATE MY BODY”.   Most teenagers feels like this at some point. Hormones, skin, peer pressure, perfection culture, fashion… It’s all there to taunt the aspiring, spot laden, hormone raging teen.

Except Loredana’s thoughts are all centred on weight loss and weight gain and wrongly perceived fat.

To my mind, what is more haunting than the poisonous self hatred, the desperation, the pleas to God and the cries for help, are the words of a grieving mother, who says,

“Lorry thought she could live with the condition – that as long as she was thin, she would be OK. She didn’t realise that anorexia is a deadly disease. It is a killer”.*

For long term sufferers, ‘old hands’, Anorexia can be so ingrained, so deeply habitual, that we forget that it is something UNnatural… an invasion. It becomes like Stockholm Syndrome… It’s is our natural fall back position.

It KILLS.

Let’s get real.

It is deadly.

We think it won’t ever happen to us, and yet, why wouldn’t it? It killed Loredana in just THREE years.

Of all psychiatric disorders, Anorexia is the biggest killer. TWENTY PERCENT of sufferers die prematurely.^

I hear my wake up call.

Can you hear yours?

 

* Emphasis is mine

^ Statistics according to B-EAT

I can stand for ages in the ‘greeting cards’ section of supermarkets or gimmicky gift shops reading the captions under funny cartoon pictures of penguins, small pen sketched characters, or black and white photos of men and women from a bygone era. More often than not, there will be something that makes me laugh loudly enough that I have to throw a couple of sidelong glances to check that nobody within the immediate vicinity is looking at me as though I am obviously mad.

A lot of the cards will adapt a formulaic linguistic structure; “X knew that she / he was _________ when he / she ___________” .  For example, ” You know you’re getting older when…” followed by the punchline, …” ‘happy hour’ is a nap”.

Amused?

Have a few more…

You know you’re getting old when…

  •  the candles cost more than the cake

  • you and your teeth don’t sleep together

  • you have to scroll to your date of birth

  • your friends start having kids on purpose

  • an ‘all nighter’ means not having to get up to pee

You get the picture?

Right.

I was trying to tell a friend a little bit about the treatment I receive at the unit I attend daily in order to restore my weight and, hopefully, recover a little bit of my mind… (I hardly dare type those last seven words). My friend couldn’t really grasp the fact that I wasn’t feeling proud of myself for managing to stick it out for the last nine weeks. She felt that I should be happy to be gaining weight and ‘getting my life back’.

Careful not to sigh, I resigned myself to the fact that there are many people who will never comprehend the fact that recovery from an eating disorder is a long and rough-road-ahead-signtorturous process. It is one of the few illnesses where, the ‘better’ you are doing, the worse it feels. I can only liken the dichotomy between wanting to be well again and wanting to starve as having my left and right limbs tied to two opposing poles which are subsequently pulled in opposite directions. It is torture.

Just like the greetings cards, I had a flash of this image with the caption, ‘You know you are in recovery when…”

And there are so many ways I could finish this sentence that I could be here all night… But I guess the truth of it is, you know your’re in recovery when:

  • your actions are a direct contradiction to the voices in your head.
  • you want to use a wood plane to shave the flesh from your bones
  • the treasured silence of your starvation turns to desperate, strangled sobs
  • just being in your body feels so horrific, you writhe and twist and rail
  • you meet ‘weigh days’ with a dread that simply cannot be put into words, and then a weary resignation.

You’re gonna have to forgive the starkness of the description. I don’t think there’s a way I can ‘soften’ the truth about what recovery from an eating disorder must entail in order for it to be real. Recovery can be
half-hearted. You know you’re not doing it right when, for example,  you are compensating at home for the food you eat when you’re there. Or, you’re getting out and sticking your fingers down your throat. Or you’re going running or over exercising.

You know when you’re doing recovery right when you’re living in hell.

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?