Honesty Amidst Setbacks

I find it incredibly difficult to be completely honest about how I’m really going. Especially on such a public forum as this blog.

There are perhaps a couple of people I’m always totally honest with – and that is because they are part of my treatment team. Being honest with them is obvious to me. They can’t help  me unless they know what’s happening! Scarily enough there are many people with eating disorders who cannot be honest with their treatment team – in fact, it seems to be very common in the earlier stages of being so unwell, or when the person is lacking in insight. Insight makes a huge difference in this fight – being able to understand that you are unwell, and why, and that the people around you are trying to help you, not persecute you.

It’s quite obvious in the blog world, actually, to come across people who blog about their supposedly ‘healthy lives’, but don’t have the insight to acknowledge the elephant in the room, their eating disorder – and the fact that they are becoming more and more unwell and more people every day are speaking out in concern for them. I can never understand some of these people when they so blatantly ignore the concern and pretend they are fine, or worse, they are well - and it’s often hard to find respect for them. There are so many people, especially younger and more vulnerable people – who read these sites and take on board the messages these sick bloggers are putting out there. If there is one thing I would absolutely loathe myself for, it would be inadvertently causing or triggering someone else’s eating disorder.

But despite it being so easy for me to stand in judgement – we often forget that eating disorders are by nature, an illness in where the person suffering from it often lacks that insight or is in heavy denial. That they often act in ways that infuriate, irritate, frustrate, people around them. That deceit is a classic behavior  born of shame and fear and the need to hang on to their disorder. Being sick doesn’t make someone bad. I’ve lost count of the times I’ve been thought of and told that I was a bad person, because I was too unwell to just eat and keep it down and behave. And I would have done anything at those times to ‘behave’ so that I could stop hurting, worrying or frustrating people – I tried with all my heart to do that. It wasn’t something I was capable of doing at that stage.

One of the main reasons I find it so difficult to be honest with people about how I’m really going, is deep shame. Long before I had the foggiest notion that I actually had an eating disorder, I saw people with anorexia on current affairs shows on TV and just was heartbroken for them, and frightened for them that they were so fragile and that they would die – and I couldn’t understand at all why they were doing that to themselves. It shocked me to think they had actually chosen to do that to themselves and then to continue to do so in the face of imminent death and the pleas of their loved ones. I just could not get my head around it.  I thought they were also incredibly vain, to be killing themselves to just be skinny – I didn’t even see the appeal of being skinny. All my life, I had found skinny quite ugly. Instead, I strived to be strong, and to be able to dance. I was extremely proud of being able to dance at the level that I had gotten to, and at what my body could do. Even as a young child, It had been obvious to me that the worst dancers in my class were the skinny girls, who just couldn’t get anything right and always looked gangly and out of place. Conversely, the biggest girl was also the best dancer and always front and centre. She was bouncy and full of energy and personality.

And I have to admit – I thought they were brats. Sick, scared, lost, hurting brats, but brats nonetheless. I thought they were selfish. I thought they were manipulating everyone who cared for them in order to get attention and mollycoddling. I truly did.

So when I finally had to admit just after my first hospital admission for anorexia (spent protesting that I had needed to lose the weight and that I wasn’t at all like the ‘real anorexics’) that I had anorexia too, it brought incredible shame and disbelief down on me. I couldn’t believe I had an eating disorder. I who had been overcome with fury when other class mates had whispered “That’s what Fiona has” during a biology class discussion about anorexia, who had disgustedly retorted “that’s what spoilt vain brats do, and I would never do something that stupid” had indeed, done exactly that. Talk about irony!

Now I know better. I know that’s not true at all. I’ve never wanted the attention having an eating disorder has brought me. And I didn’t have anyone to mollycoddle me – my family has never cared. My dad, when he tracked me down a few years into my hospital admissions, tried his best, even offered initially for me to move in with them in the Far North – but I was too scared to, at that stage he was a complete stranger to me. And I didn’t want to impose on him and his family. I didn’t want to bring my problems into their world, they didn’t deserve that. He persevered with me – and I stayed with him a week or two here and there over the eight years I knew him – it was such a blessing and a privilege to be given a second chance at having a real family. I loved my stays with them – I was made welcome, treated with kindness and respect, and my little sister was always all over me which warmed my heart – I loved her dearly. (Still do.)

Unfortunately, despite wanting more than anything else to be able to just ‘stop’ being unwell when I was with them, I couldn’t. I tried so hard! I usually lasted at best a few days. In those years, I wasn’t even really able to eat ‘normal’ food, so great was my fear, so I usually had my own food and created meals to eat with them, mostly dinner meals. I tried to make these meals look large and as close to ‘normal’ as I could – hoping that my family would just think I had other preferences and was feeding myself satisfactorily and not worry or be sad that I couldn’t enjoy some of their delicious meals. I wanted them to believe I was happy. I didn’t want them to worry at all. I failed.

A huge pile of lettuce, tomatoes, cucumber, and a million carrots (nibbled mostly during the evenings when I just badly wanted to EAT everything in sight) does not look like a good nutritious meal to anyone. Neither does a pile of brown, terribly overcooked cabbage. I only fooled myself. It was plainly apparent to anyone that I was sick, and even when I wasn’t staying with them, my dad worried. He would phone me (in the days I was still trying to communicate via phone) and ask me how I was doing, and I’d tell him I was going okay, hanging in there. Unfortunately he could tell just by my voice that I wasn’t well at all, he later told me, and instead reached out to someone he thought was a friend of mine – who had given him her details at a time he’d visited me in hospital and she had been there. She wasn’t a friend – I thought she was too for a while, she turned out to be an enemy – she fed my dad the nastiest of lies – told him my eating disorder was to hurt him, to ‘get back at him’ for not being around when I was younger. That it was for attention. That I was dying, when I was very sick but definitely not on my death bed (she also tried to force me to make a will once visiting me – and got promptly kicked out, who does that?!) She also contacted my sister, who was in her very early teens at the time, perhaps even a tween still at that stage – this forty-something year old (really)parent’s basement-dwelling woman, friended a kid. And fed her lies about me too. Told her that if I loved her, really loved her, I wouldn’t be doing this to myself, and that my dad died of cancer – melanoma – because of the stress I had caused him.

I have deeply regretted that I wasn’t honest with my dad about how I was really going, no matter how unwell I was. If I was honest, he wouldn’t have felt the need to ask someone else how I really was, and he might never have been fed such a pack of lies that probably coloured his views of his own daughter, nor would my little sister have been fed the lies that led to her gradually hating me more and more until the last straw was me actually doing something deplorable – shoplifting binge food and getting caught on the morning of dad’s funeral – for which she cannot forgive me. She hates my guts now. What’s more, I just reinforced the lies by what I did. Shoplifting is the thing I hate perhaps most about me. I haven’t done it for a while now – but I haven’t let my guard down and I never will. There have been so many times in my life that I have stopped, for years sometimes – and then fallen down that hole again. The urge to grab food is always, always so strong, even more so when I’m upset, stressed, unwell and definitely, hungry. And the bingeing and purging is the most horrible thing ever, I wish with all my heart I’d never started down that road, a road I feel unable to break free from now. I would never have struggled as much as I have, and I would never have shoplifted food – something so, so wrong to me.

I fear judgement so much. All my life, I have been harshly judged, by my own family, and by society. My own family (apart from dad) never made any attempts to understand me. When I got out of there  they didn’t know me. They had had nearly 17 years living with me from my birth to get to know me – and they didn’t have a clue. This was because they simply did not care.

Everything in my life was something I was judged for. My mother spent my life berating me for all the good things she did do for me – telling me endlessly that if only she didn’t ‘have’ to take me to ballet, the car wouldn’t be wearing out, she’d have more money for other things, she would have more time to spend with my brother and sister. She would have been able to finish her studies and be working now. She would have been a successful artist. She would have fixed our filthy, unfinished house up.  It didn’t matter that she took me to ballet perhaps 3 times a week, which took about 2 – 3 hours at a time tops. That is not the lions’ share of the week. She had all day that we were at school to be an artist, to do her schoolwork, to clean up or fix things and so on – and she instead would sit around watching soapies on TV or working on the growing pile of receipts she kept to create another bill to send our dad of money she wanted to demand from him. She spent all day with my older sister who was home all day too, they were like best girlfriends rather than  mother and daughter. She had time to take my brother to soccer and martial arts and basketball. They weren’t starving for attention or time with her.

The last couple of years I lived there she didn’t even have to take me to ballet or pay a cent for me aside from absolute basics – food and clothing. My ballet was paid for by scholarships and sponsorships I’d won, and I got myself there using public transport. My days were long – a school day for me was up at 5am, chores, breakfast, cold bath, try to iron dry damp clothes I had to wear. Catch bus at 5.55am. Transfer to train, for nearly an hour. Transfer to another bus to school. We started dancing at 8am with Limber, followed by usually ballet class, then jazz or tap or repertoire or pointe or contemporary or something else afterwards. I danced during the class breaks, and danced afterwards til everyone had showered so that I was in there mostly alone to avoid the bullying that was happening all those years. Showered and caught our bus to school to begin academic work at about 2pm, going through til 4.30pm. Then reversing the transport home, at 6.30pm where there were more chores, homework, and endless family battles to navigate. I would practice most nights and end up either lying in bed all night exercising or falling asleep at about 3am at my desk, to repeat the next day. This was six days a week, there was no time for me to get a job and between the ages of 14 to 16, I was still extremely immature and probably wouldn’t have been able to find anyone to employ me anyway. (I did try – volunteering during my holidays and canvassing local businesses for work with my resume.) My mother, who was paid a single parent pension, an allowance for me for my disabilities, and maintenance from dad – refused to supply most basics for me aside from food – and very cheap food at that, usually buying food for the family and cheaper food just for me. She even refused to buy me a school uniform, and the school supplied me with one out of their spares cupboard, kept for accidents, four sizes too big and stained. One of my school teachers helped me tape the fronts of my shoes together and paint over the tape so they stayed on my feet. I also tried to keep my shoes together by nailing nails into the sole from the inside – and ended up walking painfully on them all day as they worked themselves upwards. (And I was grateful – it was a uniform, just like everyone else had.)

My point is, my mother was not only needlessly cruel, she seemed to blame everything on me. I was just a kid, and one who had been tightly controlled too, so that I was very emotionally immature, and she was my mother. My PARENT, who was meant to feed me, clothe me, look after me. Instead, she taught me that I was some horrible, unworthy and inherently wrong creature not worthy of what other people took for granted, and the bullying I suffered due partly to  my constant scruffiness (especially during ballet school where most of the others were from affluent backgrounds) and partly due to my ineptness socially, just reinforced this. I grew up deeply ashamed of myself as a person in every way.

My own family never cared enough to really find out who Fiona was, and they made it clear I wasn’t even worthy of being understood or accepted,  and so they certainly didn’t even try to learn about or understand eating disorders. They believed every stereotype there was – to them, my eating disorder was a sign of me being the spoilt naughty selfish girl they’d always told me I was. In later years they accused me of using a ‘made up illness’ to basically be a lazy bludger, never working, never achieving anything but sponging off the taxpayer, and this stung deeply. They of all people, knew how hard a worker I was, and how I surpassed all expectations, winning a local Australia day award among other acknowledgements for my striving and perseverance. They used their words and their cruelty to basically ally themselves with the eating disorder and strip me of the last vestiges of self – invalidating my past, and stripping me of even being able to hang on to knowing I was a hard worker and an achieve who was capable of better things than this, or that it wasn’t laziness that had stopped me in my tracks. That my whole life hadn’t all been a complete failure.

It makes sense to me that if your own family judges you so harshly, what can you expect from people who don’t know you? I went straight from leaving home into the arms of the man who raped and stalked me for years. It was a very familiar situation for me – and it felt like all I deserved. I’ve met quite a number of people who were more than happy to feed my insecurities like the so-called ‘friend’ who lied to my dad and little sister, and a certain number of ignorant people who don’t seem to realize that not everyone is born with the privileges they take for granted, that some of us have to really fight to even survive let alone enjoy the milestones that they are assured of achieving. In my own heart, I feel like the biggest failure ever, I reflect on my life and see missed opportunities, on so much hard work thrown away, and so much support and belief from people I failed in some way – let down, failed to meet their expectations, or cut off. I feel as though at 35, I haven’t even achieved as much as most teenagers have, and that there is no way I will ever be able to catch up to them, let alone those of my own age group.

I’m just so deeply ashamed.

I’m reminded constantly by those who have taken the time to get to know me, and who genuinely care, that I have come a long way, that I can’t afford to compare myself with anyone else, because nobody else has had to fight the same things I have in my life – same as there are so many people out there who have faced circumstances I have no idea of and for me to judge them on their face value at any point of time that I come in contact with them would be so wrong, and totally belittling how much they HAVE achieved – just in a life completely different and therefore with different milestones and measures of progress to mine. And yet, I am so scared of others judging me harshly and finding me a failure, a loser, that I judge myself the most harshly of all.

And here is where honesty comes into the equation – I’m already ashamed of the fact that I have an eating disorder. My shame when I am struggling more than usual or I relapse is many times greater than that. Throw in the harsh judgement towards people with eating disorders that I often come across online, particularly if they blog about it, and the shame of having fallen from my position of being able to say “Here I am, I am proof that a chronic severe eating disorder doesn’t have to kill you or mean you can’t turn things around.” and most importantly of all – “There is hope” – and it’s extremely hard to face up to people and be honest with you all about the fact that I’m not doing all that well any more.

I don’t consider myself to be fully in relapse – but I’m borderline. I’ve slowed down, perhaps stopped the weight loss, but I can’t seem to get it to go back up again – and what’s more, am sitting just above what used to be my discharge weight from hospital back when times were bad. And as always, ED brain has taken over – I struggle to keep hydrated, struggle to eat, struggle with bingeing and purging. Physically I have lost a lot of strength and the chronic pain I worked so hard to rid myself of is plaguing me again. And I’m so angry at myself – I know how hard I worked to get where I was – and now, I’m no better than I was on leaving hospital during those bad  years again. I am so disappointed in myself, and so scared not only for myself, but more so, for Shalimar. What if I get so sick again, what will become of her? I don’t want to send her back to the pet motel all the time – she’s getting old now. She deserves so much better than this. And I don’t want to miss out on sharing a single moment of her life with her. I missed too much of her life when I was in hospital. I’ve let her down, most of all. She depended on me and I am not living up to those responsibilities.

And I’ve let you down, the people who read my blog. It was supposed to be a journey of hope, reclaiming a LIFE, of proving that just because everyone has expected you to die, doesn’t mean you have to.

Here is where I am going to take on board my own message. I am going to believe in hope, and I am going to remind myself that it is always within our power to change our behaviors and our thoughts, if we desire to enough. The more I walk on my chosen trail in a forest, the more worn and visible that trail becomes, and the less visible the trail I’m no longer walking on becomes as nature reclaims it and grows over where it used to be. Same with my mind – the more I practice new ways to think and new behaviors, the more natural they become to me, and the less natural the old ones will be, too. It’s called creating new neural pathways. It’s also called not giving up, being stubborn, and fighting to live – all things true of me.

I have so much to live for – even more now. I have less than two months to go until I am officially a uni student again. And I’m finally realizing that my hopes and dreams and goals these days  might be vastly different, but they are still things I’m able to be passionate about, and my life still can be for good, rather than have been pointless.

I’m not going to live up to the expectations of the people who taught me I would never be anything more than a loser.

I’m going to fulfil my own expectations – and those of the people who truly care and want the best for me. I’m going to fight and make this life truly count.

Thank you for reading, I hope to be able to bring a more positive post next time.

 

(Image sources: 1, 2)

Ugly Beauty Whinge

My eating disorder is an ugly beast of an illness. It’s made me old, dried out my skin and hair, ruined my teeth. Sucked my bones of nutrients, damaged my organs, and stolen the light from my eyes, the smile from my lips.

When I’m acutely ill, there is absolutely no point in painting my face, or dressing with style. Instead I dress to camoflague a body that shocks and disgusts and incites passerby to stare and spit. I don’t believe that clothes  ’look better on the hanger’ than on a fleshed body – as many claim they do – but the hanger sure beats my body. My body makes clothing ugly.

I don’t want to stand out in any way. I seek to hide. To slip by unnoticed. The hell I live is beyond the imagination of most who haven’t been there, and I don’t want them to glimpse my shame and despair, lest I infect them in some way – pull them in and drown them with me.

It is not a glamourous life.

I have quite a number of friends with eating disorders, severe eating disorders, just like mine, who have modelled, or do still model. Or aspire to model. I see their facebook pages every day – I see the continuous stream of photographs. Smiling, laughing, posed to perfection.

Here the wind whips my hair. Here I shake my hair as I laugh joyously. There I sink my teeth into a huge dribbling wedge of melon. I sip delicately from a glass of wine, or twirl on pointe shoes. I am glamourous in evening gown, or I’m an adorable pixie in a summery dress that shows off every single rib. Even in the dark emo shots, I am a glorious ethereal creature. Everyone wants to be me. 

Yes, even me. I have lived with my eating disorder for most of my life.  I know first hand the utter hell they live, even without having read their cries of utter distress on a daily basis – and yet, I want their lives so badly. I want to look like that. To be so beautiful. So glamourous, so perfect. To have people want to photograph me, to make inspirational posters from my own likeness. I want to look amazing in every single thing I wear no matter whether it is a hessian sack or there not be much more than bones to hang it on. I want to go to parties.. and I hate parties, I freaking hate them.

We are fighting the same illness – and yet we are so completely different. I know the majority of this I see is a sham – it’s a mask. A carefully maintained and perfected facade that hides the fact that these girls have shattered bodies, shattered dreams, shattered lives and shattered psyches. There are many ways of hiding – hiding in full view can be as successful as being completely out of sight.

I don’t understand these girls. And I doubt they understand me. But they make this monster look desireable. They make me want it – someone who has been there. What must those who have not yet experienced the reality of this think? I’m not talking about taking care of one’s appearance. I’m talking about flaunting something deadly, fully in the knowledge of what message is sent to others.

It is sweet deadly poison.

 

Flashback to 2009 – Hospital Days.

I was searching through my hard drive and came across some old writing – not journal entries so much as little random bits here and there. Times that I must have gotten on the computer and just let the thoughts flow.

This essay was written in 2009. I’d just been discharged from yet another hospital stay, and ended up in the same old spiral as I’d been falling into for years. The desperation and feeling of hopelessness in this saddens me now. During those years, I knew no way out. All I had to look forward to was more of the same, until my body gave up.

There was a better ending than I anticipated – I’m pretty sure that it was after this admission that I started begging the hospital team to help me gain more weight than I usually did – to the weight that I am at today. I had a couple more admissions to achieve that – but I did, and I have maintained – whether that is a fluke or not, it’s given me another chance at life that I really don’t think I deserved. But that I’m determined to make the most of.

Please be aware that this is a highly triggering piece of writing. It talks about hospital treatment, weight loss, food, eating disorder habits, death and hopelessness.

Monday, 13 July 2009

I was discharged from my 125^th hospital admission on Friday afternoon, 10^th July.

It was a nightmare in many ways and lifesaving in many others. For the first time I made a significant breakthrough in that for the first time in about a decade I was able to keep everything down (and eat everything too). I struggled most with the crap going on around me (petty molehills become mountains that lead to major arguments and tantrums in the stuffy HDU microcosm) and the crap going on in my head – either totally overwhelming, spending too much time sucked back into the things I never want to remember – or totally vacant.

When you’re too Ill to be sedated and so are restrained in bed in order to protect your PICC line and the TPN; when you’re too immune-compromised to be transferred to Wattlebrae as they now have swine flu there, but as soon as you fight off one infection you pick up yet another; when you’re traumatised already and undergoing way too many more invasive procedures; (the worst I think was one of seven PICC insertion attempts – in the ICU, without anaesthetic. They couldn’t get it past my shoulder and were yanking it out of the socket and kept cutting the site, then stitched it into place – I felt like a fish that’s been hooked. All that, and the x-ray showed it wasn’t viable anyway, didn’t reach my heart) – you lose yourself and become a body that seems to be everyone else’s piece of meat. Indeed, I often wondered if any of the Treatment Team ever considered what they do to my spirit? It’s shattered even more each time I’m there, ‘til I wonder if it wouldn’t be a kindness to actually let my body die. What point dragging this broken mess back to life again and again if there’s no quality of life and you’ve killed the person inside the body? My whole life has been spent being punished by others, punishing myself… and then I go to hospital where they punish me again for all of that.

I concede inferiority – all my life it seems I’ve been trying to convince people I’m not as bad as they think. But if I’m the only one who believes that (and I don’t, anyway) – then they’re right. There’s something very terribly wrong with me and always has been.

All my life I’ve been running from something. From danger. From violence. From myself. This time, I ran from Death. Or was it the fear of death? Whatever it was, it got me stuffing myself with my entire meal plan in a shock turn-around, and keeping every bit of it down. Of course, it was agony, in my mind and body. This body hasn’t had any solid food really stay in it for nearly a decade and it struggled, strained, raced, sweated. My mind thumped me in every way, every moment of the day. We’re trapped now. We have no choice. But I’ll get you, I’ll make you pay, when you are free from here. The eating cut the expected couple of months on TPN to just a couple of weeks. And I was home by the end of the week it was ceased.

No preparation. No maintenance. Just straight from two months in a bare hospital room to the chaotic big wide world.

I hoped I’d be able to keep things going. I want to LIVE. I know that if I can’t nail it now, I will die. I’m desperate to survive.

It’s been a mess. It’s been like ‘imploding’ – fragile, newly-bolstered hope caving in unsupported by any confidence within. Social phobia returning as strong as ever – now I know why it’s so hard to remember what the world’s like when I am hospitalised. I don’t look people in the face anymore, I go about anything I do with my head down in shame and fear. Withdrawn. Even at home, I don’t take in my surroundings much anymore. It’s chaotic and too busy on my eyes. They like to be closed, and words don’t come easily anymore either. I try so hard to be there for my beloved Shalimar yet it seems I am so vacant in my mind, she can sense it. And it frightens her as much as it does me.

I like that word – ‘imploding’ – for describing this parasitic eating disorder. It is like one is collapsing in on oneself as the disorder eats away more and more of your inner core. You pull away from others, curl into a protective shell as small and invisible as possible. In trying to feel ‘safe’, you find yourself increasingly alone with what’s trying to kill you, more endangered. ‘Exploding’ happens, too. I would describe that as the ‘fighting’ stages of this – when you’re resisting it’s pull as much as you can and it’s fighting you back. You fight to get the food in, it explodes it back out. You fight to save your body in every way you can, and it finds more and more violent ways to undo any good you’ve achieved.

Where to from here? I’m a mess. No matter how much or what I buy from the supermarket, when I try and put it together in my head, it doesn’t make any sort of sense. That’s if I am successful at the supermarket. I can write a concise list of what and how much I need, but being faced with aisles of cans and boxes and bottles, so many colours, so many numbers and letters and names and varieties and sizes and so on – I just freak out. Brain goes off. Autopilot takes over, I come out with a basket of stuff I haven’t a clue why I bought it and what to do with it. And none of it’s anything I even feel like eating. (Four packets of plain pasta… a bunch of different seasonings reduced to clear… one of every different variety of non-dairy milk in the UHT milk aisle… three tubs of margarine which I don’t eat and haven’t anything to put it on.. What can I do with that? )

The fruit and vegie shop’s still chaotic for me, too. If I can haul myself out there early enough in the morning, there might be a fair variety of stuff on the ‘reduced’ rack and that takes away the problem of actually choosing stuff. If it can be cooked and it’s colourful and tastes ok, then I’ll grab it. I end up with a lot of capsicums, apples, eggplants, tomatoes and sweet chilli, but that’s ok. I like them. The staples that I’ve always been addicted to – pumpkin, cabbage, carrots – are in season and plentiful. The hardest part is craving sweeter, water-rich fruits – they aren’t very easy to find at the moment. Lettuce used to be wonderfully refreshing when I could eat it raw, but even if I can (and I did try) at the moment my mouth is sore after just a bit of chewing and full of too many ulcers. Not to mention it’s fricken cold!

I really have to pull away from relying pretty much on just fruit and vegies though. They aren’t going to keep me alive – especially if I can’t keep them down anymore again. I’ve spent about $150 this weekend alone just on Up&Go drinks, Sustagens, etc – Nutrition Australia can’t get any supplements to me till tomorrow – though I rang them this morning and they might be able to get a few Resource+ drinks out to me today. But I can’t stomach them very well and they’re about a third of what’s in a Resource+. (360 calories and all your nutritional needs in one little popper) My taste buds must be screwed, too – it’s not helping that everything tastes like mud.

Whoa. All I do is complain! It’s a blessing to be alive, to be free again, to be back with my Sweet Shalimar. To sleep in my own bed again, wear my own clothes, keep my own times, be warm, have privacy, watch TV with teletext. Have nobody telling me that a few mills more of boiling water to soften my weetbix will blow my 1.2L fluid allowance for the entire day (since supplements and liquids in meals are counted, thirstiness is something I feel all the time in hospital) and nobody measuring my urine output, having to wipe my bum, wash me, even worse forgetting to wipe my bum – you end up smelly and damp from drip-drying into your undies. All dignity goes out the window in hospital. Not that I had any left.

I want to make the most of everything wonderful in my life. I want to stop taking it all for granted. It’s a miracle that I’m still alive, and I’m blessed with the most wonderful friends and some family. I have Shalimar, a place to live, clothes to wear, shoes for my feet, food to eat (theoretically, anyway) and all my basic needs. The biggest blessings are the people I love so much, and what’s left of this beautiful Earth. Je’aime la Nature.

I’m scared, God. I know I don’t talk to you very much anymore. Like everyone else, you’ve been shut out. It’s so hard to break down the barriers I keep rebuilding every time I manage to smash them down, and I’m tired, very tired. But please, my God, please hear my cry. Please have mercy – I don’t want to die, not this way. Please, I had hope that I could get around the mess in my head, that I had turned it around, but I find I am as trapped as ever. Will I ever be free, will I ever overcome this? I’m a survivor yet this battle is proving to be the most arduous I’ve fought. Terrifying how one’s own mind can be a stronger, deadlier foe than the physical dangers I’ve battled.

I can’t stop hearing [consultant] saying “You WILL die”, if the TPN was unsuccessful. I can’t help remembering how much of a struggle it was to insert a PICC line anywhere – my veins in both arms have been ruined now. I’m lucky to have even been alive to see another hospital admission – nobody thought I’d pull through last time and they all warned me that my body wouldn’t survive even one more physical relapse. What terrifies me is how sick I still really am in my mind. My body was bumped up about 10kgs really fast – but now I’ve lost nearly half of that in a weekend. Nothing was done for my thinking or my mind or learning how to care for myself. I’m trying so hard but as trapped and scared as ever, so powerless. Still fighting – ever fighting – but the feeling of hopeless futility is stronger than ever. I’m going down again already – and it doesn’t look like there are any options left now that will help me live. A long time ago, if I’d helped myself, I’d be far better off today. Now I’m beyond the point of having any control over this or even knowing how to fend off the blows in my head, the battering it gives me every breathing moment (even in my dreams/nightmares). Now there’s nothing left to even physically save me if I’m ever admitted to hospital again.

Please help me God. Help me help myself.

I didn’t survive all I have, to die of a piddly pathetic eating disorder.

 

 (image source: 1, 2)

Review – The Heavy

The Heavy – Dara-Lynn Weiss

I wanted to know Dara-Lynn Weiss’ side of the story, after a furore broke out last year over her putting her young daughter on a strict diet. Here is my review from Goodreads.

I’m actually glad I read this book – even though I expected it to be a complete food-and-weight-obsessed take on how to handle helping your child with a weight problem. I feel like it’s given me a lot to think about, changed some of my views on this delicate subject, and given me Dara-Lynn Weiss’ side of a story that you had to have your head in the sand to have missed when it broke last year.

Weiss famously wrote an article in Vogue magazine about how she put her then six year old daughter, Bea, on a diet, when told by her paediatrician that Bea was clinically obese. She was absolutely vilified from all quarters. There were supporters of her side – but they were mostly drowned out by a worldwide cry against her – she was called abusive, disordered, cruel, a bad mother, people said that child protection should be notified and so on.

I have to admit, I was one of those who was horrified. After reading Weiss’ book, I’m still not ‘with’ her, but I’m not against her either. What is certain to me in reading is that her actions came from a deep love for Bea and only wanting her child to have the best life possible. Bea was definitely aware of her size, aware and sad to be ‘different’ from the other kids, already had experienced comments and teasing. And there were also the health issues to consider. Obese children do mostly grow up to be obese adults. Now I know that a lot of people will argue the health at any size and Obesity isn’t necessarily unhealthy points here – but let’s just put those picket signs down and remember that this is the story of one mother, and her own daughter, a daughter she is charged with making health decisions for. Parents struggle with so many difficult choices when it comes to health – to immunise or not, for example – and judgement is rife. But it comes down to her right to make the choice for her child, depending on what she thinks is the best choice.

Weiss did take Bea to a nutritionist – in fact, she started out doing everything the way I’d probably have hoped someone whose child was obese would do – take the whole family to the nutritionist. The entire family have various issues and they work hard to follow the plans given to them – at this point their program is of the ‘green light, red light’ kind where they are allocated certain numbers of green lights and yellow lights to eat each day, and taught which foods and how much of them constitute each green, yellow or red light. Fruit and vegetables were ‘free’ as snacks.

I think this is where Weiss strays off the path. She has said that she has her own disordered relationship with food – and it’s obvious throughout this book. Weiss panics if Bea is wearing different clothes when she’s weighed – for example jeans instead of leggings – because of the weight difference. She refuses to allow Bea a snack before an after school appointment at one stage in case Bea weighs slightly heavier. She obsessively plans and re-plans her and Bea’s food plans, and obsessively embarks on a mission that many people with full blown serious eating disorders will remember well – to find out the calorie counts of as many different foods as possible, and to seek out ever lower calorie items. She gushes about the use of frankenfoods and artificial sweeteners in place of real nutrition because ‘low calories trumps nutrition’ and panics over lapse as small as 100 calories or so for Bea. This is not normal behaviour.

Especially, this is not normal behaviour for so young a child. Bea is growing. She’s 6 years old, 7 years old. Not only is she growing, but her relationship with food IS going to be affected by this for the rest of her life. And she IS pulling against the forced restriction. She’s constantly asking for snacks (fruit being free) to the point of having four or five or six snacks of fruit between each meal, and binge eating fruit into the night to the point of being uncomfortable. That is the behaviour of someone who is either starving, or deprived. I know from my own feelings of deprivation and consequent lashback into bingeing or hoarding food – that it can stick with you for LIFE. Bingeing and hoarding behaviors are also very common in foster children who have been deprived of food or food has been tightly controlled.

Then there is Bea’s lack of honesty when quizzed about what she’s eaten away from her mother. She’s scared of ‘owning up’ to having had three slices of pizza at a pizza party and tries to tell her mother she had only one at first. And when an unplanned ‘event’ happens in which Bea is faced with an array of food without her mother and herself having a ‘plan’ of what she can eat – she eats pretty much some of everything. Given that the point of some of these events was for the children in Bea’s class to try out food from other cultures, sampling a little of each offering was actually normal behaviour, but Bea probably would have been aware she was doing the ‘wrong’ thing, and definitely aware when she had to ‘own up’ to it to Weiss.

Then there are situations like at parties – where Bea wants another dessert or is still hungry, but has already eaten everything she’s ‘allowed’ to have. Weiss cops a fair bit of criticism from the other adults for not allowing Bea another cake or even to have the salad offered because it’s covered in a dressing. I do have to say, the other adults were not helpful. We don’t know what another child’s dietary issues might be. Bea might have been on a special diet for allergy reasons or she might have been diabetic and I’m sure the other adults wouldn’t have been so unsupportive then. And waving a food under the nose of a kid whose mother has just said NO to, is definitely not helpful, thoughtful, or kind.

Personally, I know very little about weight loss for kids. What I have heard (and believe) is that it’s not weight loss that’s important – it’s weight stabilisation – and allowing them to grow into their weight. In calculating what her daughter’s weight goals should be, at least Weiss kept her projected height in mind, but she was way too stuck on 77 pounds. If it was 77.2 pounds, that wasn’t good enough. To her credit, this weight was barely out of overweight into ‘normal’ for Bea’s height, so at least she wasn’t unrealistic on her weight – but just the general obsessiveness and inflexibility was a huge red flag for me throughout the book.

In the end, how is Bea? She’s lost the weight. She definitely seems happier, but at the same time, she still feels like a fat kid – she’s said she will always feel like one on the inside. She still needs to have her mother control her food intake – or it inches up again fast. Over time, though, Bea shows she is able to control her food intake herself and demonstrates this ability on a 3 week camp. This, here, is where I start to worry the most. Although Bea did very well – I feel like she’s too caught up in the ‘restrictive’ and ‘controlled’ eating – and it can very easily tip over into anorexia. That part of things just sounded off, and too good to be true to me.

Weiss was approached by Vogue magazine to write about her daughter’s weight loss journey after she expressed interest in writing a book about it. She was counselled to not include Bea in the photographs, but caved in to Bea’s pleas to be included – a choice she later regretted. I would not have liked to be in her shoes with what followed the publication of that article.

Overall, it was an interesting book, but unless you are already interested in the subject or share an obsession with food, weight, and dieting – it could be extremely boring. The book pretty much is a lengthy account of the process from beginning of diet to end. Weiss obviously has done a good amount of research for the book – but suffers from confirmation bias – in that she’s set out to justify her choices and seems to have cherry-picked whatever research backs her up and excluded that which doesn’t. Despite this, there are some good and salient points that she raises – for example, even the ‘healthy’ choices in restaurants and in school cafeteria food containing far more energy than a child needs in one meal, and actual energy content differing to the provided nutrition statement. I do now see her point in that had she been less strict with Bea, Bea would most likely still be overweight, because there just are not healthy choices there for kids to make – even those that ‘seem’ healthy are far too large or aren’t as healthy as they appear.

I still don’t think Weiss went about helping Bea become healthier the right way, and I worry about whether Bea will end up with a serious eating disorder in the future. But I now see Weiss’s side of things and feel she was justified in making most of the choices she did – and only meant well for her daughter.

ANAD had this to say about the article.

The decision of Vogue to publish “Weight Watcher” in the April 2012 issue about a mother’s story of her 7 year old daughter’s weight loss journey is irresponsible.  Dara-Lynn, mother to Bea, subjected her daughter to a rigid diet complete with mixed messages around food, stigmatizing remarks, and damaging body image comments. Voguemust take responsibility for publishing an article that normalizes disordered eating and contempt for bodies.Experts and advocates in the field of eating disorders and obesity do not support the approach used by mother Dara-Lynn and urge her to evaluate her own relationship with food and body image.

Vogue’s decision to run this article adds to the child’s humiliation and shame. Bea is not an adult who can determine whether or not her journey should be public. With the publication of this story, readers from all over the world are privy to BEA’s story and she will likely be increasingly judged, based on her size, over and over again throughout her childhood, adolescence, and adulthood. This is worrisome for her overall health, including mental status.

Laura Discipio, executive director of ANAD comments: “Dara-Lynn stated that Bea has not exhibited symptoms of intense psychological damage, yet the article reports “tears of pain fill her (Bea’s) eyes as she reflects on her year long journey.” Dara-Lynn was engaging in behaviors that most clinicians and parents would agree were detrimental to Bea.  The methods and tactics used by Dara-Lynn in front of Bea’s peers coupled with public shaming in a well-read magazine may indeed produce long-term psychological damage, including an unhealthy relationship with food and her body. ANAD advocates for overall wellness not weight, including help for emotional, physical and social well being.”

Chevese Turner, CEO of BEDA adds: “Research indicates dieting at such a young age can actually result in weight gain and eating disorders, which have the highest death rate of any mental health illness.  Childhood is a dynamic period; professionals and parents need to think twice before prescribing or implementing a diet. They must also consider that research shows stigmatizing, shaming, and bullying around a person’s size can also result in weight gain and eating disorders. Every good intention can have a negative outcome”

We invite Vogue editors and Dara-Lynn Weiss to contact BEDA or ANAD so they can talk to experts and others whose life of pain and struggles around food began with eerie similarity to Bea’s experience over the last year.  We also ask that concerned people respond to Vogue editors with their dismay at using this child’s experience to sell magazines.

 The Condé Nast Building

4 Times Square #12

New York NY 10036

212-286-8398 or 212-286-2860

Email: talkingback@vogue.com

I would love to hear what you think. Should you ever put a child on a diet? And if you do, how would you go about it? Where would you draw the line and say you had gone too far? 

 (Image Sources: 1, 2, 3, 4)

Community Safety Announcement – ED Watchdogs.

This post comes with a MASSIVE trigger warning. 

In the last few years, I’ve seen so much that’s truly shocked me. And I’ve become aware that the eating disorders community attracts predators of it’s own.

There are some utter scumbags on the internet. And, being the internet, it can be hard, sometimes impossible, to police them.

Ideally, the internet never should be policed. But there are lines that should never be crossed – some of which in this case are paedophilia, rape,  preying on those who are vulnerable.

ED Watchdogs is a recently set up facebook community that is hoping to spread the message of keeping ourselves safe, and of keeping an eye out for each other. The facilitators have spent several years working silently behind the scenes compiling thousands of screenshots, messages and emails, endeavoring to try and remove the worst of these predators one at a time. Reporting them to facebook has been only a temporary measure – they always return. Reporting them to authorities usually results in nothing – not enough evidence. With very real abuse and assault going on – these facebook meetings do cross into real life in many instances – they put in hundreds of hours of work in order to get the evidence to present to police and have them actually investigate.

However this is just too much for a couple of people, themselves members of this community, to undertake alone – and they hope for the community to become their eyes and ears.

ED Watchdogs has an Ask.fm page for anonymous tip offs.

Screenshots and other files can be emailed to ed.watchdogs@gmail.com and if you prefer to stay anonymous, you can use a service like Anonymouse to do so.

I’ll leave you with an example of just what sort of person is among us. (Trigger warning.) 

I would like to take this opportunity to warn you all about the user ‘Myke Nihilist Davidian’.My alarm bells went off about this man a few months ago when I saw hints in his profile information that he may be the type of character to prey on young girls with eating disorders.

~WARNING: The following information may be triggering to those with abuse or rape in their past.~

I confronted Myke about his page and flat out requested to know what his intentions were. This image was the last reply I got.

This is an example of the kind of character we, the ED Watchdogs want to warn people to be wary about.
Please take care.

 

Images courtesy ED Watchdogs.

My Experience Of Body Image

I do a lot of pretending.

I pretend a lot that I’m going better than I really am.

I pretend that I’m happier than I am, or at least, not as unhappy as I really am.

I pretend that I have a lot more hope than I do in reality.

And I pretend that I don’t really want to be ‘thin’.

I don’t know what to say to explain that one!

No, I really do NOT want to be emaciated, or even ‘too thin’. I feel like such a failure, and that everyone can SEE it when it’s that obvious. It’s not a nice look at all, in fact, it can be quite disgusting. Have you ever seen someone who is emaciated’s bottom? There is this big… concave HOLE there. And the anus that is usually hidden by flesh is.. stretched out in the middle of that hole. Too much info right?

Grossed out yet? Imagine LIVING WITH THAT. Still want to be thin?

And yet, I would give anything to go back to being almost 15 kilograms less than I am now. I don’t care how gross it might be. I don’t care about people looking down on me or treating me horribly because of it. I don’t even care that it might kill me. I am too much, and I will always be too much. At least in my mind, I am too much. I know in reality I am not, far from it. But to me, always too much. Always. And even at my lowest weight, I never even started to not be too much.

My body image is SO distorted. Even when I was at my lowest weight, on a good day I would see a normal, maybe rather fleshy person. On a bad day, I’d practically be able to roll myself around. And yet, under all that, my wise mind was constantly saying “But I’m too thin. I know I’m too thin. The ‘numbers’ say I’m too thin. And yet what is this incredible fleshy hulk I’m hauling round with me every day?”

Every now and then I’d catch a glance of what I called “Michael Jackson” in the mirror – a glimpse of how I truly was – and scare myself terribly. But that lasted for a glimpse and a few moments post-glimpse – before “too-much” loomed over me again, threatening to squish the ‘me’ right out of myself.

Okay, I know my nose is bigger and it’s REAL, but yeah. Scary stuff.

One of the common myths is that people with anorexia and/or bulimia enjoy their disease, enjoy the ‘thinness’ that many of them achieve. I think the reality would be closer to we don’t even get to experience it let alone ‘enjoy’ it.

How do I really see myself?

Imagine your body is SO heavy and huge that you find it hard to move. You find yourself very weighed down. Sluggish. One of the reasons my dancing started to fail in uni was because, yes I’d gained some weight initially, but after that, even though it was plunging DOWN, I felt heavy and unable to MOVE properly due to having so much flesh stopping me. It was a complete utter delusion.

You can’t walk with your legs together because your thigh rolls prevent that.

You can’t put your arms down properly to your sides because the rolls of fat under them and on your torso are too huge.

And it all feels SO REAL. So completely utterly REAL.

It’s not just about the body image way of being ‘fat’ either. It’s about being that aforementioned ‘too much’.

I experience the world as though I’m towering over everyone around me. I am more tall than I am short, but I’m not THAT tall, and I still feel this way when the person next to me is actually a lot taller than I. The same with width – I feel monstrous next to everyone else, even if the person beside me outweighs me by 100 kilos.

Even without the comparing of size, I just feel too much ME.  I’ve spent my life trying to squeeze myself out. Trying to disappear. To be invisible. Apologising for taking up too much space, for being so wrong, for being so grossly overimposingly massively HERE.

The way I experience my own size against that of the world has also see-sawed along with my actual weight, except that it’s strayed ever further than reality each time. The first time I ever lost weight, I felt tiny, I could feel myself and see myself shrinking. The world became huge, but only in relation to my own size.. Then I was refed, and although I grew, oh boy did I grow bigger, the world seemed to stay the same size. Each time I went down after that, the world got bigger while I stayed the same size. And each time I was refed, I grew bigger and the world stayed the same size. Can you understand that? We were becoming more and more skewed the more I lost and gained, I growing ever bigger, the world ever smaller.

Whoever invented those carnival mirrors, I wonder if they knew what this was like to live with?

This is just how I see my own face! My brain stretches it out so that it appears smeared.

So my problem is, I guess, that it’s so hard to live in a body that you feel so wrong in, one that you constantly wish you could literally unzip and step out of.

And while I struggle so much with my body image, I guess I have had to get to a place of maturity – listening to my wise mind and rationality over my discomfort and my desire to strive for something I find more pleasant to both see and be. 

Not everyone has reached that place.

Eating disorders are NOT about food, shape, weight – that is surface stuff. That is the language of our culture. That is the language we fall to first, when we are not happy, worried, anxious, have problems, and have no other way to express them but “I hate myself, I am so ugly, I am so big, if I lost weight, my problems would be better.” But food and weight and body image issues are often triggers for eating disorders to begin – and for the malnutrition that they cause to trigger the cognitive deficit and irrationality that leads to it becoming a mindset and something that overpowers us easily.

It’s very dangerous to be constantly giving us images to which we are expected to conform when they are physically not even possible for most. So many of us are struggling to even accept ourselves, let alone find ourselves acceptable in context of the rest of the world… and we are bombarded by reminders that apparently we never WILL ‘size up’.

What do you think of this?

And here I will end my ranting and leave you. Do you feel you ‘size up’ or are you too much? Is your body image distorted, or normal, or can you even tell when you only see what YOU see? How do you know if what you see is the reality?

If you have an eating disorder – how much do you feel it’s about food, weight, body image? Do you find that if you take those issues away, you still are stuck with your disorder and the problems that are underneath?

Do you find yourself yearning for something that is forbidden and dangerous? How do you deal with that?

And – if I don’t get to post again before midnight tomorrow - HAPPY NEW YEAR!! May 2013 be the happiest and most positive year all of you have lived to date – with better things on the horizon. xx

(Image Sources: 1, 2, 3, 4, 5, 6, 7 taken from Facebook.)

It’s arrogant to say anorexia is a personal choice rather than a mental illness

It’s arrogant to say anorexia is a personal choice rather than a mental illness.

 

This.

I and many of my friends were greatly offended by a recent article by Rachel Cusk . It presented pure fallacy, a personal observation of what Anorexia is all about by someone who had never had any personal experience – the closest she had gotten was a friend working with anorexic patients. She got it SO WRONG .

This rebuttal sets the record straight.

If You Could Have A Say…

For almost 15 years, I had no say about when I was admitted to hospital, or what happened if I needed to be admitted. I had no say in any decisions to do with my health.

Recently, I’ve been offered a little bit of that power – an opportunity that I think many of us who are fighting eating disorders and caught up in the health system would give anything to have.

As I am a ‘complex patient’, my case manager is now required to have plans drawn up for every aspect of my management. Usually my admissions have been planned – I’ve been becoming too unwell, or medically I’ve become unstable, my case manager and/or GP has contacted the ED specialist unit at the hospital, and because they know me, it’s pretty much been a case of “Okay, she’s coming in at x time, see you then.” All that’s remained has been for them to bring me in.

However there have been emergencies and crises, as there will be when someone is battling a long chronic illness that has so many volatile aspects to it.  And without a written plan in my files, they have been difficult and even traumatic. There was the time I was taken to hospital by a case worker who was standing in, for chest pains. The registrar didn’t check me out – instead, he gave me a few lectures about how people with eating disorders are manipulative, spoilt brats who just want attention – and told me to go home and eat a sandwich. I really did have heart problems – ended up in hospital with them a few days later – but that experience is just one of many similar, not just for myself, but for friends I’ve talked to.

It’s scary that many of us will not go to emergency under our own steam, because of the fear of being treated with no understanding, even being accused of attention seeking or malingering. Often staff in emergency aren’t aware of what to actually test for medically – beyond basics like electrolyte levels, and even that at times has been something that if I haven’t reminded them of, would have been overlooked. One of my friends who had to attend for her self harm was stitched up with no anesthetic, because obviously, she wanted the pain, right? (No, she didn’t, and it traumatised her.)

So having a chance to control some of what happens in this situation is truly an opportunity I don’t want to waste. It also might go to abate some of the fears I have of ever being in hospital again – that I will always be at the mercy of others, never have a say, just be reduced to a body, because I have a mental illness and therefore I don’t get a say.

As far as my health goes, my case manager is going to help me take out an Advanced Health Care Directive. It’s a good idea to have it done now, and have it signed off by a doctor to say that I was mentally able to make my own informed decisions at the time that it was made. When I’ve been in hospital, there has often been a point at which things have been too much – too traumatic or too painful – and I’ve wanted to be able to say “No more”. Indeed, I’ve begged them at times to let me die – because at that time, there was truly not much hope, I had tried everything and tried it many times. I was tired, I was broken, now medical help had just become more abuse – and I wanted them to just be kind to me now. But because I was mentally ill – I was told that I didn’t know what was best for me and was incapable of making those decisions.

Recently in the  news there have been two women who have been in this situation – and it went to court. One woman was granted the right to not be fed – (trigger warning, stupid cliché anorexia photo) despite wanting to live. The other was ordered to be fed against her will – despite there being no hope for her and suffering the medical and psychological effects of years of a long, hard battle. Today, I am glad that I was kept alive despite wanting then to just be allowed to die. Because I’m still here, and I have a chance. One of my past doctor always used to say to me “While there is life, there is hope.” And she’s right.

A now long gone friend of mine was resuscitated and her chest was smashed from the efforts, she lived in agony for a while before she died. That terrifies me, because I have severe osteoporosis so the chances are the same would happen to me. I do have heart complications, according to my case manager, so it could happen. I wanted to have a Do Not Resuscitate order at one stage, was knocked back because of the ‘mentally impaired’ thing. NOW, I can have it if I want it. But I’m scared of not being resuscitated, too. As much as I struggle to live, struggle to want to live when hurting and fighting 24/7, I’m scared of dying too. Who isn’t? The thought of having a heart attack and them NOT trying to save my life is too scary to think about.

I want to be able to decide when to no longer push to save me. When I’m to be considered ‘end of life’. That is also such a hard decision. When is anorexia ‘end of life’? Who gets to make that decision? Nobody with an eating disorder should ever get to that stage but it does happen. When you are in organ failure, for example, it’s a bit silly to try and keep saving you, especially if it’s painful and traumatic.

I definitely want to specify that I not be restrained ever again. That isn’t worth it, and I’d truly rather die. I don’t know if that would be acceptable on an AHD, but I can try.

Generally, I get to have instructions to emergency staff about what is helpful for me, and what is not. For example – not to say “Go eat a sandwich” to me! My case manager is putting in details of what medical things to test for (in case they don’t know, but seriously, I hope it becomes compulsory for all front line nurses, doctors, and any other professional health staff to be taught about eating disorders, since they are often the first point of contact for sufferers and how they handle the situation can heavily influence the sufferer’s attitude towards accepting help in the future.)

Very importantly, I can have instructions to care for Shalimar. I’ve always been scared that she would be left alone to fend for herself if I was suddenly unwell and none of my treatment team were around to arrange for her to be cared for. She is to me, my ‘child’ – and she is reliant on me in as many ways as a child.

I’m struggling to come up with what things I would like to have on my plan. I was shocked to be given the chance to have input, and thankful that I have a chance to influence what the future might hold, before I got to a point where my opinion no longer counted – NOT that I ever intend to revisit that state of health again. The most important thing here, is that this is a safety net for me in many ways.

What would you choose to have on an emergency admission care plan? For both medical and psychiatric emergencies? What would you want the people who are helping you to do or not do? Are there any triggers that you would benefit from the staff knowing in advance and so avoiding?

Would you ever take out an Advanced Health Care Directive or do you have one? And what would you have on that directive? What is your biggest fear health-wise?

Thank you for your input! I am so interested to see what you all think.

(Image source – I love this picture, and I love this verse.)

A Little, Empty Life.

One of the hardest things about my life as the eating disorder has shaped it, is that it really is a very small, self-centred, empty life. It’s hard to admit that, and hurtful when others say it, but that’s the reality. You can’t have an eating disorder AND a life. You just can’t.

I’m sure most people with an eating disorder have tried to at some stage. Many probably  still have a ‘life’ of sorts, for now. When you are in the earlier stages, and are yet to experience the full devastation it can wreak on every part of your existence, it can be difficult to imagine that it could bring you to such a grinding halt. Also, some people who have had their eating disorders for a long time have a ‘semblance’ of a life – they have had to learn to live around it or with it – work to support themselves, for example – but it’s just a resemblance from the outside that shatters pretty quickly under gentle poking around. It’s not really life when you barely scrape through each day going through the motions and pretty much become a robot. Wake up, eating disorder stuff and work, go to sleep (or toss and turn if you are one of the many with insomnia). Same the next day. And the next. And pretending on a daily basis to be ‘fine’ in order to be professional at work is exhausting and isolating.

My career was going to be a professional dancer. I’d already come a long way in just a few years, and it was looking like it could be a reality. I had the talent, I had the perseverance and the drive to push myself beyond the pain and constantly keep working beyond ‘normal’ limits to keep achieving in order to use that talent. I’d also had a lot of really good luck that enabled me to have opportunities that most people never get.

Having an eating disorder meant I threw all that away. Years of hard work, of actual blood, sweat and tears – just thrown away. All for nothing. My physical health declined so quickly after I fell over the edge from sub-clinical disordered eating into a full blown disorder that I didn’t even know what was happening until after the fact – in hindsight it’s obvious. At the time, I didn’t even realise that I was sick, and I genuinely thought I had a huge weight problem. I was also in denial, in pain, traumatised and suffering from PTSD, dissociated all the time, and irrational. I genuinely believed that if I lost weight, my problems would be fixed. Even when the majority of those problems had nothing to do with my weight or my body.

Today that doesn’t make sense at all. I can see it’s irrational.  But back then, I couldn’t. Even when I’d lost too much weight, been kicked out of the performance strand in my dancing course at university, and was constantly passing out, and people were remarking on not only my weight loss but now that I’d gone too far and was looking sick,  I still firmly believed that all that would be solved when I ‘got my dancer’s body back again’ which to me at the time, meant losing weight.

Totally ZERO insight. Not a clue.

It all went downhill very fast after that point. A valuable lesson that I have learnt from this  is that it’s so important to have activities and goals that are meaningful and purposeful in your life – to have a reason for getting up in the morning, a reason for being alive at all. A reason to not give in completely and let the eating disorder suck the last bit of life out of you.  The more that was taken from me – not just ballet, but ability to think in order to do the academic classes at university, to have a conversation with people, the stamina and thinking in order to keep doing the volunteer work I’d always done, the steady hand and imagination to keep doing my drawings and paintings, the imagination to write my poetry, and the energy and self-esteem to keep up with friends – the more of it I lost, the more of myself I lost, too.

After leaving home as a teen, I’d become fiercely independent. I’d lived to that point with every aspect of my life completely controlled – right down to what I could think,  what I wore, read, and did with my spare time. My determination to survive in the ‘big bad world’ was such that I strived to budget and manage money, pay bills and look after my commitments without failing. To get myself around the city despite it being unfamiliar, to find my own housing and fend for myself. I did fail to keep myself safe – since I fell out of the family frying pan into the fire of Wanker the rapist and stalker – but for the first few years I did quite well in everything else, especially considering that I had to learn a lot of basic life skills from scratch. In a home where you are brainwashed and tightly controlled, you don’t learn these skills, even when you are actually performing them – because you aren’t ‘practising’ them so much as you are ‘obeying’, like a robot, every command. Thus I had been preparing and cooking family meals, cleaning, washing up, laundering, working in the yard etc for much of my childhood, but found I didn’t even know where to begin on any of these tasks when I’d needed to do them on the outside.

So to lose my independence to the eating disorder was a huge blow for me. And I lost it ALL. I had no say about my life. My finances were taken over by a state trustee and a state-appointed guardian made decisions about my body. As I grew physically less able, Home and Community Care moved in to help me to get out of bed, shower and dress, go to appointments, look after the housework, encourage me to come on a drive to the park or just get out, and most importantly, help me look after my cat, Shalimar. By this point, I’d had her a few years, and I still can’t imagine living without her, now. We have been almost inseperable since the first hour we spent together. Almost, because with me constantly in and out of hospital, Shalimar was in and out of the pet motel. Thankfully a really lovely man who ran the facility I finally settled on for her, cared for her personally and sensitively – giving her cuddles and walkies and treats. But it wasn’t a life for her, and it was the thing I most regretted about being sick.

At my sickest, I even had to be bathed, toileted, and fed. The indignity of it, especially when some of the nurses or aides who are doing it are much younger than you, really stings. I felt so helpless.

At that point, to look back at the strong, determined, courageous, talented and highly achieving young woman I had once been – was heartbreaking and very bizarre. No way in the world had I ever imagined such a future for myself. I’d aimed for the sky, and beyond, back then! I had believed that if I truly hoped and dreamed for something, I would achieve it – no doubts – because hoping and dreaming to me was synonymous with going out of my way, pulling out all the stops, not stopping at all until I’d gotten there. In fact, I’d made a point of always setting goals that were higher than I (and most other people who knew me, too) imagined I could ever achieve, because my will and my drive was such that I usually ended up surpassing the more ‘realistic’ goals I’d had that way, achieving more than had I just aimed for the them in the first place.

And here I was now – helpless. Pathetic, weak, miserable and helpless.

Eating disorders will strip even the brightest people of their every hope and dream. It will leave no aspect of your life untouched. You will constantly drop to a new low, feel like nothing could possibly get worse than ‘this’ – and then fall again even further. Nobody escapes this. Even for those who somehow hang on to some semblance of sanity and function for a longer time than usual – it will crumble around you in the end. Because it’s impossible to maintain something that is the very antithesis of LIFE and LIVE.

Many people with eating disorders have to start from scratch when they start to turn things around. The little basics of life have to be learnt all over again, but it goes far deeper. Many of us find ourselves in the body of a complete stranger. If we ever knew ‘who’ we were in the first place, we don’t even begin to know that now. We have lost being a person to become basically a host body to a parasite. Interests, hopes, dreams – they all have to be found all over again. And in the jaded, weary aftermath, it’s difficult to find the cares for that stuff, it seems so trivial compared to the battle we have been wading through.

But it’s important. Essential. You can’t just rip the eating disorder from the person and expect them to be okay. They have nothing. You have ripped away their ‘suit of armour’ and their skin, too, leaving them a quivering helpless mess of jelly and innards that will collapse uselessly in a pile. The way you need to do  this is to replace each old supporting and protecting structure for a new one, before taking the old one away. A new activity here, a new interest there, gradually ease the person from leaning totally on the old to shifting more and more weight onto the new – and hopefully when you can finally take eating disorder from that part of their life completely they will stay standing and keep going.

It’s a long slow process. It can’t be rushed.

In many ways, I’m the same person as I once was. Yet, in many ways, I’m completely different, and I do feel like I’m living with a stranger in the same body every single day – not to forget that my body feels like someone else’s too.  My rebuilding process has involved me being broken down to the very most basic, shattered slivers of myself as I once was. Hopefully this time around, the foundation built will be sturdy and I will be stronger for it. Ballet, volunteer work, reading, gardening, interacting with friends much more, art, and spending precious time with my beloved Shalimar all make up parts of the scaffolding of my new person. And with the therapist in trauma therapy, we are chipping away at the frozen, tormented bits to hopefully reveal and set free the little abused kid so that she can finally grow up and leave the past behind her.

You are not the exception to the rule.

Even if you still have a life, if you have an eating disorder, you will not escape this loss of life. I promise you – you simply will not, can not. And that is why I tell this story. My message to you is, get out now. I read of people asking if they are ready to attempt to get better, are they ‘sick enough’? Do they want to let go of losing weight, or the illusion of control, or of whatever pretty carrot the eating disorder has promised? Maybe there is a special occasion they want to be thin for first, or studies to be finished, or someone to meet. Some goal to have achieved, or some point to have reached where they will ‘know’ they now are ready to change.

My question is – what makes you think you will even have those choices? Or that when you get to whatever the goalpost is, you will be able to change, then?

I listen to someone telling me that they want to time their recovery for after a vacation period, when the harsh reality is that if they don’t start fighting now, they won’t even have that vacation period, and they certainly won’t have a choice about when to be plunged into treatment or hospital. I listen to someone telling me that they have to finish the year’s studies first, and wonder if they realise that if they don’t start fighting NOW, not only will they not finish the year’s studies, they may lose the chance to complete the entire course. I hear someone saying they can’t take time from their job to fight for their lives, and wonder if they realise that it’s take the time, or become so unwell they have no choice about losing it, and maybe not even be ever able to work again. And I listen to  someone wanting to be thinner for some occasion and wish she realised that it’s too high a price to pay for that – this disease leaves you crippled and weak, even bedridden, and in the end, DEAD, and believe me that’s not a good look for anyone.

We don’t have tomorrow. None of us has tomorrow. Or next week. Definitely not next year. We only have today. We can only do what we can do right now. And every moment that we don’t fight for our lives against ED, is potentially a moment in the future where we no longer have a life at all.

Even if you take just one small step today – challenge yourself in just one little way, change just one little thing – to fight your eating disorder – it’s a chance you now have. It’s a little bit of yourself and your life and your future that you are claiming, now when you are still able to claim it.

Keep fighting. 

(Image source)

Was It My Choice to have an Eating Disorder?

I don’t agree that it’s a choice to have an eating disorder. Nobody asked the little four year old me if I wanted one. Nobody gave me a choice. I didn’t want to hide my food or refuse to drink. I was hungry, and I liked to eat. I’d never thought about my body in terms other than “This is me playing!” and that it could wear dress up costumes, could run, jump, dance… I didn’t know anything about eating disorders or weight loss. I’d never even set eyes on a glossy magazine. I idolised my mother and father, and wanted only to be the best ‘good little girl’ I could be so they would be happy with me and love me more, so it wasn’t about having power over them or defying them, either.

As I grew older, still completely clueless about eating disorders, still without a care when it came to weight, I still never had a choice about the eating disorder. There was this thing that just was, in my mind. It was just there, as though it was born with me when I was, and grew as I grew, until it reached a point where I could no longer avoid being influenced by it. This thing told me, no, demanded that I not eat, that I exercise more. I didn’t even really hear the demands at first – later it was like something screaming inside my head. There never was a choice not to do those things – they were what had to be done, and there were no other options open to me. Not a single one.

And so, I obeyed it. It just had to be done, and I just did it. Hunger was unpleasant, pain was unpleasant, but disobeying this thing, that was far worse.

Have you ever felt like you are so trapped that you could thrash and beat at the walls, scream your head off, do everything you could to change your situation and you would be simply wasting your energy and breath? Known that for certain – without a doubt? That was what it was for me. And if I did try to beat it, the consequences always dissuaded me from trying again.

It wasn’t until I was at least 18 years old that I even began to learn about what eating disorders were, or accept that I might have one. You find it very hard to believe you have a disorder when you are just doing something you HAVE to do, that you have no choice not to do. A disorder should go against the grain. A disorder should cause more distress than it alleviates – this was the other way around at that time. To not obey caused instant, lasting, intense distress. To listen, to fulfil the demands on me – I found that soothing. Calming. It made me feel invincible. It reminded me that I was strong enough to withstand the hurt being meted out by the people in my life at that time, because I was used to pain. I thrived on pain. And pain made me stronger. This proved it to me, because my dancing went from strength to strength the more I exercised, and the more I exercised, the less time I had for eating. To feel I was dancing better left me on a high, along with the cognitive and physical effects of starvation, I was in a constant giddy, light headed state of ‘not being there’.

And I didn’t want to be here, there, or anywhere at that time. I’d been hurt so much, and the hurting never stopped. Every where I turned, I was wounded. Like a little creature seeking to just survive, I crawled away to hide best that I could while still being there amongst my abusers. I crawled away inside myself. They saw my shell, they no longer saw me.

 

Indeed, when I left that hell that I grew up in, not a single member of my family actually knew who I was. Not a single one of them knew the real Fiona, only the outer carcass, only the robot who simply humoured their demands and acquiesced to their ways, because it wasn’t worth the extra fighting to do otherwise. Who learnt to never show them what actually mattered to her, lest it became a target too, and used against her.

In all these years, I never chose to have the eating disorder. Not once did I consciously choose to lose weight. I never chose to restrict my eating. I never chose to not allow myself to eat or to drink. I never chose to force myself to overexercise. I did not have a choice at all – ever. Those things were simply things that were as natural and unconscious to me as breathing, as my heart beating. We don’t think about and choose every breath we take or every beat of our hearts. And yet, we breathe. Our hearts beat. The eating disorder ate away at me from the inside out. It was never something I thought about, wanted, or chose.

There are six year old children needing treatment for anorexia in growing numbers. Eight year olds. Nine year olds. Ask a six year old why they want to lose weight? Will they tell you they want to be a model, or on the cover of the latest Vogue magazine? Will they tell you that it helps them to cope with an uncertain world, or with fear or pain, or that it makes them feel strong and in control? That they do it to manipulate people around them?

I can pretty much promise you they will say none of those things. Because they never chose to have their eating disorders either. For them, as it was for me, the eating disorder was something that they were born with, a pre-existing predisposition, determined by genetics, not by them. And it lies there, waiting, under the surface. It lies there like a crocodile under the skin of a silent lake, only its eyes above water, waiting for something tasty and alive to wander into it’s path. A menacing, hidden danger, no less a threat for its temporary invisibility. And at some point, life conspired to throw them into a set of conditions that triggered off that lurking monster, brought it out of hiding and into full battle.

All that waiting made for a very hungry monster indeed.

At about 18, all that had happened – and was happening still to me – came to tipping point. I simply was no longer able to stand up against the tide, as I had fought so hard to do all those years. It knocked me down like I was nothing at all, swept me over the edge, and then I was falling. Falling into anorexia.

And I fell hard.

It was never a choice.

Years later, when I finally accepted my anorexia, accepted the bulimia that had come with it, accepted that I needed help, was out of control, was dying – then it was my choice. I had an army on my side to fight it, and it was my choice whether to join them, or to fight against them as enemies. And too many times, I did see them as foes. It took years for me to realise they came for me, not against.

I never had a choice about having an eating disorder.

But I do have a choice to fight it.

Did you choose to have an eating disorder? Or another illness or disorder?

** I will likely not be around online much for the next few days so please excuse late replies to your comments, I’ll get back to you as soon as I can – thank you for reading