Category: Re-feeding


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.

 

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.

… 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.

… sometimes takes more courage than to continue a fight.

Image may be subject to copyright

Image may be subject to copyright

Sometimes it makes more sense to submit than to lose everything by fighting a battle you’re not equipped enough to survive.

That won’t please the shiny miracle brigade. Those who remarkably manage to cling to a hope that pays off once in a very blue moon. I’m not saying anything is impossible, just that suggesting that holding out hope can sometimes be a little like burying your head in the sand.

Believe me, this isn’t an easy thing to write on a blog referencing hope in the title; a blog whose very essence was supposed to be hope. A place which might offer encouragement to others, and help deepen understanding about the struggle of recovery, insight into the world of mental health and eating disorders.

However, it would be dishonest to spout rubbish about a recovery that I haven’t yet made. This is where I find myself; admitting defeat. I’ve had to have an honest look at No Man’s Land and an inventory of my fire power tells me that I need to regroup in order to stay alive.

I am being admitted to an ED inpatient unit on Monday. The admission is for a month, at least, so that they can prevent organ failure and minimise the risk of death that is posed by my current BMI. (Body Mass Index, for those who may not know, is a calculation of relative body mass and height, which gives an indication of where an individual is in terms of the healthy weight range of 20 – 25).

I’m lying in the trench, a little wounded and very weary. It has taken guts to submit. I’m losing the battle in the hope that I might still win the war. If I carry on fighting, there’s absolutely no chance.

Tipped out and raked through, the innards of handbag look like an Emin – style installation.

I could write more about this, but this isn’t really the place for theorising about what does and doesn’t constitute a work of art.

I’m focused on one particular thing (though I may list or photograph the contents of my bag for those whose curiosity has been inexplicably peaked).

Amidst the clutter, the handbag holds the main thrust of my last weekly appointment at the Eating Disorders Unit. A folded piece of crumpled paper. A list, scrawled by my clinician in desperation: “Reasons to Increase Weight”.

Turns out that the essence of this list can’t permeate the tan leather of my bag. It isn’t going in.

Which brings me here. Perhaps the skin on my fingertips is more permeable? (I jest)2014-12-08 16.55.06

SO:

I want to increase my weight:

  • To prevent my organs from packing up
  • So I’m not hungry all the time
  • To have more energy
  • To be able to write
  • To be able to get a life?
  • To be able to eat out again.

They’re pretty broad… but it’s hard to think about the possibility of ever being well, especially when the illness has eaten so much of your brain; Worse, your hope.

I’m getting nearer that piece of land between two warring factions. The Anorexia versus Team ED. I should be in there somewhere… perhaps a third party divided between the camps. But I’m not.

Truth is, I’m lost at this point in time. The daylight is fast fading, the guiding lights are all extinguished and I’m stumbling through no man’s land clinging onto a crumpled list of reasons.

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?