Today I thought I’d just do a quick, short post – or my version of short, which seems to be other people’s version of ‘normal length!’

Reading Gel’s recent update on her chicks, and how they are adapting to being able to go outside after being weaned inside – I had a sudden light-bulb moment.

Gel’s chicks have never had a chicken ‘mamma’. Instead, Gel is their mamma. And she’s done a good job. But Gel can never teach them chook things like a chicken mamma could. Like dust-bathing. Dust-bathing seems to be a behaviour that chickens are born just ‘knowing’. It’s natural to them. It keeps their plumage looking good, and free of mites (and looks like fun, too!)

Let’s have a bit of a demonstration here!

What does this have to do with my blog?

Well, nobody taught Gel’s chicks to dust-bathe. They just instinctively did it. They were born with the instinct to perform those behaviours.

The first time I ever self harmed, I didn’t know that people even did such thing. I’d never heard or read about it, I had never encountered the term ‘self harm’. The closest I had come to that, was knowing that people did commit suicide – and thinking of wrist slicing – but apart from actually actively trying to kill oneself, I never imagined that anyone would harm themselves on purpose.

I still don’t understand what led me to do it. If I remember correctly the trigger was piercing my finger on the sharp edge of a tin and seeing the blood. But I don’t think I will ever understand how from that, I had the idea of actually causing harm to myself.

It freaked me out! And I hid it. From that day on, long sleeves became part of my daily clothing. Nobody would have ever known, had I not at some stage blurted it out to a counselor at uni. I was freaked out by what I was doing and asked her if I was crazy. To my shock and surprise, she calmly asked me how many stitches I had needed! I hadn’t needed medical care – I only scratched at that point – but to realize other people did that nearly blew my mind.

I wonder, looking back, why that lady didn’t bother to seize on that admission as a way in and ask me what was actually wrong. She brushed it off as though people did all the time and we never spoke of it again. It went secret again for years until it got to the point where I had to get stitches and no longer could keep it hidden.

Likewise, nobody ‘taught’ me to starve or not drink enough. It’s a behaviour that came naturally too, aside from my mother’s own abuse of food as punishment, I remember feeling some sort of inability to eat despite being ravenous and liking the food at age 4, and hiding the food to get out of eating it. At 5, I had weekly IV’s due to being so severely dehydrated from my refusal to drink, even when it was a green rehydration solution that I actually quite liked.

I was a very ‘goody-two-shoes’ sort of kid, so I wasn’t doing it to be ‘bad’ or to get attention. I only wanted to please my mother. Refusing to eat or drink definitely accomplished the opposite of that. So it wasn’t something I was doing because I wanted to, either.

I do think that many of us are born genetically ‘wired’ to develop these behaviours. I believe I was born with the eating disorder, which in turn, was then triggered by events during my life. It’s also been found that starvation can itself trigger an eating disorder – and I can see that being possible since I had a history of difficulties from childhood.

Maybe eating disorders are leftovers from a day when we needed to adapt to survive times of famine? I think  Shan Guisinger‘s  theory is very interesting.

From Adapted to Flee Famine: Adding an Evolutionary Perspective on Anorexia Nervosa:

Anorexia nervosa (AN) is commonly attributed to psychological conflicts, attempts to be fashionably slender, neuroendocrine dysfunction, orsome combination ofthese factors. Considerable  research reveals these theoriesto be incomplete. Psychological and societalfactors accountforthe decision to diet but not for the phenomenology of the disorder; theories of biological  defects fail to explain neuroendocrine findings that suggest coordinated physiological mechanisms. This article presents evidence that AN’s
distinctive symptoms of restricting food, denial of starvation, and hyperactivity are likely to be evolved adaptive mechanisms that facilitated ancestral nomadic foragers leaving depleted environments; genetically susceptible individuals who lose too much weight may trigger these archaic adaptations. This hypothesis accounts for the occurrence of AN-like syndromes in both humans and animals and is consistent with changes observed in the physiology, cognitions, and behavior of patients with AN.

Also check out a letter she wrote to Harriet Brown – some good reading.

I’d love to know what you think!

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)

I suppose that what goes up, must come down. The holiday was such a high for me. I didn’t want to come back to my life. I couldn’t keep the eating disorder out of the holiday completely, but it was still a break, such a refreshing break. A glimpse of what could be a much better life to live.

I have come to believe that even though I still am adamanant that people do and can recover from eating disorders, depression, and other mental illnesses, I am not one of them. Depression is something I have fought in all my living memories – and was first diagnosed with at age 9, after I supposedly wrote a suicide note. It’s as much an organic part of me as my brown hair and my hazel/green eyes are. And like my eyes used to be blue, and my hair used to be white-blonde – I have hoped that as I grew older and wiser, the nature of the depression would change.

In many ways, it has. Twenty years ago, every emotion I felt threatened to burst me, inside out like a sausage splitting on the barbecue. I could not contain that pain, or that ecstacy when things were going right for me. Betrayal felt like literally being speared through the gut with a knife. These days, that has mellowed to some extent. The highs and lows are still excruciating – but they usually do not feel like they are physically killing me. Usually.

Because there are still times I could claw my own skin to shreds with the agony of it – and lately it’s been a lot like that. I’ve resisted, lying still under the heavy covers on my bed, pretending I’m buried under cool dark earth, contained, unable to hurt myself. Unable to be found or hurt by others either. But shards of anxiety and piercing distress still worm their way through the earth to nibble at me, relentlessly. I open my mouth to scream and eat dirt.

It hurts. Depression hurts. It feels like more than a human being can bear.

My eating disorder is intricately linked to the depression – it does make it harder to fight, when you cannot even bear to be. It’s easy to stop caring whether you live or not, or wish you would just die now and get it over with. It’s easy to forget there are so many reasons to live, so many people who are everything to you, that you have a beautiful cat who adores you nearly as much as you adore her, that your life is much better now, so much better than it was twenty years ago, and it’s getting a little bit better all the time, slowly but surely. It’s easy to forget that depression always ends. It will always get better. I know that, because I have been through it so many times before – and it always did get better. My question is – how do I make it stay better?

There is no easy way out for me. I’ve lost friends to suicide in the past, and it hurt so much to lose them – still hurts so much, more than it hurt to lose people through other means in many cases. I swore I would never put anyone through that myself – and never again attempted to kill myself. In the past couple of weeks, two people who were dear friends of dear friends of mine – have killed themselves. And witnessing the grief my dear friends are experiencing – is a reminder of my vow. I cannot cause this pain to another person. No matter how much pain I am in, myself.

Life has been all about pain for me. In many ways, I’ve courted it. As a dancer, more pain meant I was working harder and therefore becoming a better dancer. As a daughter and sister living through domestic abuse, as a student being bullied, and as the victim of the man who raped me, I bore it expressionlessly because I didn’t want to give them the satisfaction of knowing they had hurt me. And it reminded me that I was still alive, despite them. As someone with an eating disorder, I cannot remember a time without pain, physical or emotional – it is my every moment’s reality. I think I would not know what to do with myself were I not in pain of some kind.

But no matter how great my tolerance is to it, that does not mean it is not eating me away inside and damaging my ability to live.

These days, much of the pain I feel is from the past abuses. I wish it would go away, shut up already. Get out of my life! I’m free now. I’ve been free of them for ages. My life is my own to live now. To live as I believe, without hiding or changing myself so as not to draw more violence. To discover who I am, and be true to that person for once. I have rejected the past and the people who were part of it, and moved on. Except the pain didn’t cooperate and my days are haunted, I relive the violence and the taunting constantly. And I fall into holes of despair.

I’m working with the best therapist I’ve ever met. I have hope we are going to get through this. I just don’t know if I can hang on until we get through this. And I don’t know if it’s possible to ‘get through this’ and have it go away for good.

Do you believe that the pain from the past, can be over and left behind permanently? How did you manage to do this, if  you have?

If you or someone you know is suicidal, please get help now. 

Lifeline Australia

Suicide Help UK

Suicide and Crisis Hotlines USA

(image source)

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.

Please try to remember that it’s not the majority of people who are evil, but the minority. Try not to let evil steal from you more than they have by not doing activities or going to places you enjoy – we can’t predict this sort of atrocious act, where it might occur, and when – but we can’t let the possibility keep us from living either. If we do that, they steal even more. The world can’t afford to  live in fear of them.

I hope and pray that the people responsible are found and locked away, and that somehow we can make this world a safer place to live for everyone.

I want to write about every detail (and I’ve been doing a lot of writing since I’ve been home, more on that soon.) I want to paint everything I saw – and I tried to imprint it all on my memory so that I could do so. In brilliant timing, the yearly art workshops I take part in started on Friday – and I leapt straight in this year. Usually I dither about unable to choose something to paint. This year, I’m painting a scene from the last night of camping, at Heathcote-Graytown National Park. It is from a camper’s point of view – the campfire is in front of you, you are surrounded by a forest of tall, silent gum trees, and beyond the ring of light from your fire is utter blackness. (It was DARK out there at night!) You are looking up, past the forest canopy, where you can see the stars in the night sky.

Oh the stars. Oh, oh, oh, the stars. If you have never seen the night sky from the middle of absolutely nowhere – you must be miles from civilisation, from electric light, from the glow that the city always casts on the skyline – then you have not lived. Every single night I gazed at those stars (I tripped over an awful lot, believe me, head in the sky like that!) and I wished that I’d thought to bring books along on both the hard science Astronomy, and the new-age science of Astrology. But even so, just staring at them left me in awe. You realise how small you are, how big ‘out there’ is. It helps put a lot of things into perspective.  And, along with being out among the trees in the fresh air, seeing the stars re-awakens my spirit. I have long identified myself as Christian – except that I have become disillusioned with the churches and ‘religion’ – and also found myself questioning whether that power I can feel so strongly DOES exist, is actually ‘God’. But it doesn’t matter – for want of a better name, I know that it exists, and the outdoors, the natural world, is ‘church’ for me.

There is no way I could ever recap my holiday in one blog post, or even several blog posts – which is why I’m not trying. Since I started therapy at Isis I have started writing more than I have managed to in years. My counsellor has encouraged my writing – encouraged all my ways of expression – and once I started, I could hardly stop. I’ve been writing like a maniac since I came home in order to preserve those memories and observations, and I’m also really excited to be having a piece published in their next newsletter (not about the holiday, but about my thoughts on recovery.)

I will try and give you the short version though.

I flew to Melbourne on the Monday – and it was a challenge to even make the plane. My anxiety levels peaked in the week before the great day arrived, and on the day itself I was so exhausted that I slept through 4 alarms on my phone, only waking when my friend K texted me frantically! But I made it to Melbourne, arriving in time for a candlelit dinner prepared especially for the guests – myself and my best friend K’s partner’s little sis A, 16  years old. K’s partner is a chef, so it was a pretty delicious meal! And terrifying – but I watched what K took as she served herself and served myself similar amounts of food. I also enjoyed the wine along with everyone else – ended up rather tipsy on just two glasses! We were all pretty exhausted so went to bed rather soon.

I had been falling into a hole of depression in the lead up to the trip – my eating had been steadily getting worse along with it. By the time I left, I was not eating or drinking at all until about 8pm at night, usually later, then having a bit of a binge and purge and going to bed. This made EATING in Melbourne a huge challenge for me! I was determined to eat as well as I could, because these people are my loved ones and I can’t bear to hurt and worry them as I did my father when he was alive. I was constantly burping silently because there was SO MUCH FOOD. I only purged 3 times in the entire trip (which would have 30 meals not including snacks) and I ate many things completely new to me. However I also misjudged my energy output (camping is hard work!) and my intake – I take about three times as long as everyone else to eat, and I usually took a smaller portion of whatever everyone else was having. Thus I found when I returned to Brisbane that I’d lost 5 kilos in 10 days – a big shock. However since I’ve been home, I’ve been working at turning that around with the help of a very close friend, who has been encouraging me and texting me with meal support. I can’t let this go further and I’m not going to.

The next couple of days we explored Melbourne. Highlights for me were the Dandenong ranges, and Portsea. The water in the bays is so clear and clean – I could walk right out along the pier and still see huge schools of fish swimming and see the sandy bottom. One of the bays we visited had huge rock pools that you can swim in when the tide is out, and apparently seals live there – and come out to play too. Unfortunately we were picking our way over the rocks as the tide was coming in, which made for some hair raising near misses! S and A are daredevils. I think my friend K’s hair is going to be white in just a few years. S, who went skydiving just the previous week, and A insisted on swimming out to a huge rock and jumping off into the sea on the other side, it’s hard to describe the danger in that, and also the thrill!

Another favourite place was the Alfred Nicholas Gardens. Beautifully preserved, old gardens, a place where I just felt so peaceful and still. Outside, we found an avenue of cypress trees, wild strawberries that we picked and ate, and trees that had to be seen to believed – they must have been about 400 metres high and hundreds of years old.

Wild Strawberries! not as sweet as ‘normal’ strawberries, but apparently much more nutritious.

The gates of Alfred Nicholas Gardens

Kings of the forest – King Gum trees.

On Thursday, we loaded up the car and the trailer and embarked on our long driving trip to Confest, about an hour’s drive eastwards of Moulamein, New South Wales. I enjoyed every bit of the trip – we took the ‘scenic’ route, so K could show me more of her Victoria, which I can tell you is a beautiful place indeed. We passed through a lot of small country towns in the middle of nowhere, picked up groceries in Bendigo, and camped overnight in Kerang, in the Gunbower National Park.

Dinner that night was a freak-out for me. Our groceries were packed up in the trailer and we were delayed – arriving well after dark at a pitch black campsite. We had very little money for dinner after the groceries and needed something – so K bought a huge pile of hot chips for everyone to share. Only one of my top fear foods! I did pretty well – I didn’t have a lot of chips, but it was enough for dinner. And after we had set up camp, we had our first bonfire, toasted marshmallows and drank wine before heading off to bed.

This is the life!! Billy tea is the best tea, too  

The next morning when I stuck my head out of the tent, there was the amazing, glistening misty Murray River just metres from my face! A beautiful sight to wake up to. We packed up fast and were off – over the Murray River, crossing the border from Victoria into New South Wales, breakfasting (on cheese and salad sandwiches for me) at Barham, then heading east – arriving in Moulamein sometime close to lunch time. We weren’t expecting the police!

We drove straight into the waiting arms of a police roadblock – I’d been expecting this, it was all over the internet that the police would be searching confesters for drugs. But it was still an experience to be tossed out of our car and every inch of car and trailer searched. They even gave us a pat down!  It was good to know we had nothing to hide (phew!). I was rather annoyed at the assumption that people who go to this particular festival are druggies though.

About an hour along from Moulamein – we came to Confest!! What can I say? Confest!!  It was amazing! It’s a five day camping festival that happens twice a year, at Easter and at the New Year. It is the original hippy happy alternative festival of them all, in the middle of nowhere. NO electricity, sewerage, plumbing, no phone reception, just trees, dust, prickles, and the Edward River. 2000+ people camp there and share ideas, holding workshops on yoga, permaculture, spirit guides, vegan cooking, tantric sex, drumming, art, so much more. Anyone who wanted to hold a work shop on any subject just had to write it up on the chalkboard and people would come. You could do anything at all, or nothing, it was totally up to you.

Taken from the Confest facebook page.

There was a market place which I decided was better than the local markets at home, and a spa, a sauna, a mud pit, a ‘beach’, a place where you could borrow bikes to ride, a drumming circle (where we camped! I was the only one who got any sleep!), and cooking circles. Fire was banned on site for individuals – only allowed in fire circles where people were able to cook on the fire or just have fun around it. Having camped next to the drumming circle meant that life at confest was a non-stop party. They never stopped drumming, except perhaps for a few hours after about 4am when everyone passed out.

Especially at night there would be a crowd of people dancing around the fires, and even I, bashful as I am, ended up getting up and dancing and jumping about – it was infectious and so much fun, and like the drumming, the party never stopped! (I would even get up to go to the toilet in the middle of the night and end up dancing all the way there and back!)

Taken from the Confest facebook page

There are heaps of kids there – it’s a family event – and they loved heaping stuff on the fires too, armfuls of leaves or twigs, sending the flames and sparks high into the sky. All our meals were cooked here, we boiled water in the billy for tea (putting in a eucalyptus leaf or two!) warmed up the stews and soups that S had prepared before we left, toasted bread, and wrapped everything we could think of to wrap in foil to cook in the coals – my favourite being pumpkin and eggplant, which caramelise. Sometimes you had to dig about to find your food though after the kids had been through!

Taken from the Confest facebook page.

Clothing is optional at confest – and I found this pretty confronting. In fact the first person we met when we drove up (past the ‘Welcome Home’ gate) on the first day was stark naked – if you didn’t count his shoes and socks! It felt like a challenge – “Can’t handle me? Turn your little car and around and point it towards Moulamein and wee wee wee all the way home, kids!”

I would estimate that about 3/4 of confesters went naked during the festival. Some of them pretty much stayed that way all the time, but the majority of festival goers peeled off the clothes in the Arts village in order to have their bodies painted (that was awesome, and A and I spent a lot of time there painting each other’s faces), to get all muddy in the mud pit, run into the river to wash it off, soak in the spa at night, steam in the sauna, or have a massage. The spa was the funniest sight I’ve ever seen – can you imagine 30 people stark naked quietly sitting in a huge open air bath tub? I found the sauna a bit icky, and didn’t swim at all because it was just too cold for me. By the end of the festival I was able to get down to a singlet and shorts, but not go all the way.

It was a very positive experience for me. I couldn’t help but realise just how natural it is to just be in your own skin and nothing else. I couldn’t help but notice that every single person’s body was different from anyone elses – different shapes, sizes, colours, etc. And it was FINE. You realise how stupid all this body image stuff is when you see a crowd of naked people – and that nobody’s body is ugly or ‘wrong’ – everyone is beautiful in their own way. It’s a great equaliser too. Confest itself was a great equaliser. It didn’t matter where you came from or what you did back in ‘real life’ – there were as many doctors, lawyers, and other professionals there as there were year-round ‘hippies’.

Confest helped me remember how to just BE. To just live in the moment and soak up what was happening around me with all my senses. To have no plans and no expectations – everything being a surprise – and it being safe and okay. To be surrounded by many people and yet able to coexist with them happily (this many people in a city area – no way I could stay there. But here, everyone felt fairly safe.) As much as confest was a full on party, it was a rest for me – a time of reflection, sharing, and play.

All too soon, it was over, and we packed up and set off again on our road trip the ‘scenic’ way back to Melbourne – and again we drove through some beautiful places – including Swan Hill (a detour one night when A had a suspected broken arm, thankfully it wasn’t broken),Barham, Bendigo,  Echuca, overnight camping at Heathcote Graytown National Park; then  Seymour, Yea, Alexandra, Marysville, The Black Spur rd, Mt Donna Buang, Warburton,  Olinda, Sassafras, Belgrave… and just too many more to remember.

Sadly we arrived home in Melbourne at last – the night before I was due to fly back to Brisbane. Time really flies when you are having fun! I’ve only seen a tiny slice of what is out there in the wide world – I have so much more to see, and I have to get myself out there to see it.

I am really sad to have to have left – I miss my friends a lot. Getting back to everyday life has been a bit of a shock – I hit Brisbane and had to say ‘hi’ to all my problems – it was amazing that I had left them behind as much as I had. I also had a big shock in how exhausted I was – I pretty much touched down from our flight and ran out of steam to keep going. This past week and a bit has been dedicated to just getting back on track – resting and resting some more – and getting into some sort of eating routine. Although I did so ‘well’ on the trip, I didn’t eat enough and it also felt like it wasn’t real life – something I couldn’t really replicate back home.

Where to from here? Back to therapy. More writing. Art workshops. I have to get myself back to pilates and ballet – I might not have lost very much weight, but it’s scary the difference it makes to what I can do physically – at the moment, I’m not able to do that sort of thing. It’s even scarier how much stronger those few kilos make ED thoughts.

And – study! I have applied to take a tertiary preparation course – to remind myself of everything I learnt in high school and get my brain working again, so that I can go on to study something like psychology or social work. I just sent in the testing package I had to complete – maths exam, two written papers, and some forms – and am hoping so much I get in. Fingers crossed!

Life is too short to live it in ‘eating disorder’ land. I’ve wasted so much of it already. I can’t just stop having an eating disorder, but I’m determined to not let it steal any more from me.

I hope everyone has been well and safe – I have been thinking of many of you. I’m very behind on comments – both on my own blog, and on other people’s blogs – and I hope that nobody takes that personally. Hopefully I’ll catch up soon.

This is a massive post! I better finish it now – with a few words about Shalimar. I missed her terribly when I was away – I don’t think we have a normal human-pet bond – it’s much, much stronger and more equal than that. She stayed at a pet motel and came back fluffy and sweet smelling (hahaha) and fat and happy. I’m glad to have her back and hopefully next time I go away, I’ll be able to take her with me. Cats rule, after all

I have Missy to thank for that, today. Go check out her post if you are in need of hope, too.

And Missy’s hope was reignited by Sooz, and Melis. Two very special ladies, I agree a million times over. Sooz, no matter how much she herself struggles, has been a constant source of hope and support for me. Melis, oh my internet Big Sis, you amaze me. Missy coined it when she said that your ‘purging can Melis’, because boy did Melis ever kick that bulimia’s ass!

Then there is Greta. Greta, who daily reminds us of the beauty of life – we can become so bogged down in our battles that everything for us seems grey and mundane – Greta brings the life alive from the drudgery. There is never drudgery reading your posts, girl. They are sublime – as you are. I cannot never smile ear to ear, as well as hope to make MY world even a fraction as pretty as you make yours! And my heart as kind.

And Gel. What can I say. Such wisdom, such kindness, such quiet strength and perseverance. Gel, you inspire me day after day. You have taught me so very many things in the time I have had the blessing of knowing you. You are another of these amazing woman who, oh my, has kicked a herd of bulima asses.

I couldn’t forget Zoe. Every single day could be a battle, but Zoe turns every single day into a battle cry. She really does rise again and again like the pheonix rising from the ashes of a lifetime of appalling narcissistic abuse. It has not kept her down, it never will. And she reminds me daily, the abuse I lived through, will never claim my life either. Ever.

Lastly, a shout out to some special, dear, real-life sisters.

My Little Angel Sis, the Stunned Mullet – We fought. Because we love each other dearly. There’s no doubt about that. It’s my biggest fear that this extremely sweet and talented young lady loses her years of fighting like a fricken warrior to despair. I know she won’t let that happen. But sometimes  fear gets the better of me and I refuse to pretend that I think everything is okay. That, with my headstrong little sis, can be dangerous! It is my hope for you, that you can let go of the need for everyone to think you are okay and know that it’s okay to ask for help when needed, and that though you seem to have fallen into the laps of pretty disappointing and shitty professionals up to now, they ain’t all like that. You don’t have to do this alone. At the very least, you have me, silly girl, I love you every step of the way, no matter what. But beware, I don’t hold any punches when it comes to being blatantly honest about how things are from this perspective.

Jen. You are a quiet, loving big sis to me. Sometimes without even knowing. Every day I know you are out there. Every day I think of you and how far you have come. And how much love and kindness you have showered me with. I can’t wait to see you, or your little sis A, again soon.

Anya. You light up my world. Your life is a daily struggle with pain of the kind I can only guess at – and yet you, again and again, amaze me with your hope and your desire to reach out to and light up the lives of others. And all you ask of me, is prayer. I pray for you every day, every single day – and a lot of those prayers are in thankfulness for you, my dear friend. Hope your heart is flying over the waves with your surfing idols this Easter – a treat you more than deserved.

And Kelmonster. You probably don’t even know this blog exists. Because this world isn’t your world, thank God for that. She has given me a window to my disordered, hopeless world, for so many years now. We go way back. Her love for me has known no bounds, as has my love for her. Love has never had conditions, love has always been no matter what. She’s held my hand, and spoon-fed me in my darkest moments. She’s holding my hand and leading me out through that window into the big wide yonder today. She’s shown me a world I could previously only just imagine. It is real, it is worth fighting for. Although where we are, it will be more kicking herds of kangaroos rather than asses. She’s never let me leave my hope behind. Always prodded me to open my eyes and find it, open my heart and accept the love and forgiveness and healing that is mine. And her life is not without it’s battles, in fact, she is constantly overcoming a battle I could never imagine. Top nursing student? That’s hard enough. Top nursing student who just happens to live with Schizophrenia? That’s my girl. Exceedingly rare – she kicks kangaroos every single day. She is the family my family refused to be. And for that, for everything, I love her with all my heart. I know that with her, I will never be alone.

There are some very sore asses around the place. And Kangaroos.

Thank you my beautiful friends for the hope you give me every single day. There are so many more of you who might be reading this, or might not know it exists – nonetheless, I thank you. Life would not have been worth fighting for without you. Life is worth fighting for. And I will never give up fighting for my own future, peace, healing and happiness. I’ve come further than I ever dreamed possible in just a few short years – from death-bed to climbing out the window into the WORLD. And I am deeply, incredibly grateful, to all of you.

Every single one of us is important. Every single one of YOU matters. If you ever doubt that your voice has a place in this world – think of an orchestra. Think of how every single note from every single instrument – no matter how soft and subtle – is so exceedingly vital to the symphony. Without that little ding from the triangle? It’s ruined. Without that bloody loud tuba? It’s ruined. Missing something. The world would be missing something without YOU too. No matter how tiny your whisper is right now (for later, I pray, it will become a rawr!) YOU and your voice is vital to this world as part of the symphony of life – never forget that. We need you here – don’t give up fighting. Hunt down an ass, or a herd of asses, or a kangaroo or two, every single day and kick them from here to bloody Pussycat Flat (it exists!)

Well, today, after a whirlwind few days discovering Victoria – from rescuing a drowning echidna in the beautiful Dandenong mountains

Above, we scooped him out in a hat – and he hid his snout shyly behind the sharpest-clawed paws I’ve seen!  He now pretends to be part of the dirt and grass, burrowed in stubbornly.

to swimming in rock pools at Portsea and gazing in awe at the twinkling lights of all of Melbourne from the height of Arthurs Seat, and hand feeding tame Rosellas

Polly wanna sunflower seed?

and finding my new home to be

Shall I choose this airy shack, with room for many, many cats?

or perhaps this cosy and warm winter hide-away?

Today I am going to be leaving civilisation behind on our long road trip north to New South Wales – and a camping festival known as ConFest. We will be off the radar to phone signals and internet! And perhaps that’s a good thing. Art and journalling and just relaxing amongst the real world – nature – await. And at night, I’m staying in a million-star hotel. Stuff 5 stars!

image source

So I won’t be around for a while.

I hope you all have a wonderful, hope-filled Easter. Even for those who do not celebrate – there is meaning there to be found, of hope and renewal and that there’s always a light to be found in our darknesses.

Never, ever give up. Kick those kangaroos! Or they will kick you!

the source of this evil

I miss Shalimar so much! She is living it up at a Pet Motel, in the lap of luxury with gourmet food (and, incidentially, she’s eating Kangaroo Meat among other things… the irony). It will be lovely to see her snarling, sweet cute whiskery face again soon She’s my love, my life, my light.

Happy Easter and take care, everyone!

One of the long term side effects of living with an eating disorder is very often financial problems. For me, it’s meant I’ve been unable to have a paid job (so far) and living on a disability pension. I’m very thankful for that – but as most people will say, it’s already quite a pinch.

Add in an eating disorder and things can be disastrous.

Thankfully, as far as I can remember, I never defaulted on rent or bills, or paid them late. But things got more and more difficult as I was hospitalised so much. Back in ‘those days’ – the pre-millenium years – we didn’t have automated bill paying or money transferring services like BPay, Centrelink etc. Every week or fortnight, I made a trip to my bank to take money from my account, then a trip to the bank of my landlord, or the post office, or the real estate agent or leasing office to pay my rent in person. I paid my electricity bills and phone bills over the counter at the post office. Same for other bills and expenses that popped up here and there – you couldn’t jump online and electronically transfer the funds without leaving your home. You had to go out and do it in person.

You can’t do that when you are always in hospital! So it did get quite tricky, and  I was worried. My accomodation was boarding houses and hostels mostly at that stage – and it doesn’t take much to lose a room. I was frightened of what might happen if I got so sick I was unable to let anyone know where I was or pay my bills – I might get out of hospital to find I had nowhere to live at all any more.

More seriously, bingeing happened. Specifically, bingeing and purging. I had emotionally eaten before my most serious descent into anorexia to the degree that I was borderline overweight for a very short time. And I remember being so out of control with the stuffing and the musteat-can’tnoteat-can’tbearnottoeat feelings that I would be in physical agony and crying, and just lie down long enough for it to settle a bit and be needing to eat again. But I didn’t have the money worries that bulimia brings. I was able to go without the excess food if I didn’t have money for it.

Bulimia meant I was taking away just as much as I was putting in – still in starvtion, in fact probably making it worse because I was losing stomach fluids, nutrition already in my system etc every time I purged, and creating a chemical chaos for my bloodstream. Being physically uncomfortably full didn’t happen, or at least if it did, I ‘undid’ it. I could eat a truckload of food and still be starving ravenously hungry.

Purging is, in hindsight, the thing I’d most like to go back in time and ‘unlearn’. The rest of the eating disorder was hell enough – purging was like opening the very gates to hell and being unable to ever shut them again against the hordes pouring out. Even in my fight against dying from starvation from the anorexia – it’s more complicated for me because of the purging. Before purging, it used to be a battle to follow the meal plans and put on the weight, especially when not in hospital and on my own – but at least once I got the food in, the physical part of the fight was over. Ed thrashed me in my mind, but it couldn’t do anything about it, and that was the end of that.  But with purging, it wasn’t the end. Because hours after I’d won that battle to eat, I was still able to undo all my hard work in one moment. It was absolutely gutting to have fought so hard and to undo it all just like that, be back where I started or in even more a precarious position.

I had some savings, but it wasn’t long for bulimia to have totally eroded them and I was taking the last bit of cash to my name out of the ATM machine. That was a shock for me, as I had been in denial and not keeping note of how much money I was spending any more. Suddenly it was gone and I knew I had no choice but to stop this, now. I couldn’t say to myself any more that I could just do this for a while, eat everything I craved for once, and then stop it next week or next month and get back to normal. I had to stop it NOW or I was in trouble.

Except I couldn’t. I found myself frantic, unable to cope at all without the bingeing – which in the short time I’d been doing it had become my major coping mechanism after starvation – and yet unable to cope in other ways if I continued.  I could no longer pretend it was just about me ‘making up’ for all the missing out and starving, no longer pretend I was just ‘tasting all the foods I had never gotten to try’. The foods became the cheapest, blandest stuff on offer. Old, discarded, stale, it didn’t matter, if it was edible, it served a purpose.

I wonder if people who become addicted to drugs start off that way too, they care about the quality of the drugs they are taking, and then when they are desperately addicted and the funds run dry, they’ll take anything they can get. Same with drinking, where the person might start out with cocktails or beers and end up slugging down methylated spirits?

Long story short, if things were financially tight before, they were precarious now. As I said before, I didn’t actually default on my responsibilities – but I was terrified that it was only a matter of time. My pattern became that I’d get my pension, immediately pay everything that was due, then the rest of it – usually about $150 or so – would be binged away within about two days. The rest of the fortnight I walked everywhere and went without food whatsoever. I do have to admit, part of me purposely wanted to get rid of the money as soon as possible – because when it was gone, the bingeing was over. And sure, it was hell not being able to binge, but I preferred the numbed control of the starvation.

It was not sustainable, and I knew it. I started scrambling for help. And somehow I stumbled on the public trustee of my state. I’m fuzzy about the details, but I asked them for help, with the support of my case manager, and they took over.

Took over, completely. All my pension goes to them. They control every cent I own. They pay the bills – rent, utilities, pharmacy account, nutritional account, cat boarding account, etc – and give me a small allowance weekly for my food, toiletries, transport, household items, and most importantly, Shalimar. They have a strict budget to allow me to purchase items or pay accounts that come up during the year. By ‘strict’, I mean, blood flows more easily from a stone. The trustees are notoriously strict and out of touch with their clients – I’m not the only one who has complained – and I think they forget that they have a lot of power over our entire lives.

Asking them for a more affordable internet and phone option should have been straightforward – after all, we are in the business of saving money, right? But no. They wanted me to continue with a heinously expensive and unaffordable pre-paid option that I simply could not afford. I’d go through the tiny amount very quickly and then be fighting with them again for more. I gave them quote after quote for plans that were more affordable and better suited to my needs, each being rejected – “No plans over six months in length” or “You must have unlimited data allowance if you are on a plan” (which would be great, but I couldn’t afford that sort of plan. I am not even a heavy user, I probably use 4 GB a month) Finally they were saying, “You can’t have the internet.”

Most people will probably think, so what? What’s the big deal? Internet is a luxury. I fully agree, it’s a luxury. I could go to my local library and use it there, for example. But – I’m deaf, remember. Profoundly deaf. I struggle to pick up a lot of what’s said to me in person. When it comes to communicating over the phone – there isn’t a hope. I’m also extremely isolated. I live alone, and despite being so much better, I’m still physically pretty unwell. (Shalimar is great company, and I do not know how I managed to cope without her, I really don’t – but let’s just say she’s not the best conversationalist )

For me, the internet is a lifeline. I make phone calls online, using a relay service. During the day time, I communicate regularly with my case managers and support workers and even my therapists with SMS and email. And at night time especially, I use it to distract myself and to recieve and give support. I talk to my friends, both those I know in person, and those I have only (yet) met online. I use it for meal support in that it takes my mind off the meal to some degree, and then it occupies me and keeps me communicating rather than sticking my head down the toilet afterwards, and it keeps me out of the fridge and pantry at my most vulnerable times – or at least delays all these things, which is a good start.

Also, unlikely but extremely important – if I don’t have the internet, I cannot call for help if I need it. I cannot call our emergency services – because I cannot hear on my phone. We don’t as yet have text support to contact emergency services (although I hear it’s been on the agenda for a while). Unless I’m able to SMS a friend and ask them to call emergency services for me – and that’s time consuming and often not really something I want to do. I don’t want to worry them, for example. And they might not have their phone turned on or read the text for a while, and then I’m stuffed!

I used to be such a loner. So withdrawn and shy. I lived in my own world – I didn’t want a bar of this world. Much of the time I was actually dissociated – and I preferred it that way. My little inner world was safer than the real world. But these days, I’ve come to crave social interaction. It’s the people I’ve met, the friends I’ve made and come to adore who make my world go round, my life worth living. Even when I’m not up to talking, just sitting here and seeing people talking on facebook or somewhere else helps me feel not so alone in this world. It literally opened a huge window to the world where before, there was only the blank stone walls of my self-imposed exile.

So the internet, far from a luxury for me, is essential. But I had to fight hard to get it. It took more than six months, and the last week or so, things were dire to the point that I had no internet, no data left on my mobile phone as I used it to tether to my computer for internet, and was running short on texts. The walls were closing in, and I realised again just how isolated and alone I am, how quiet things get, without it. I am SO relieved to be back on air.

If it wasn’t for my eating disorder I wouldn’t have the financial constraints on  my life that I do. I would be working and earning a decent amount, or at least more than the pension. I wouldn’t have the costs occured during binges or needing so many meds – the bill at times can be around $75 a week. I wouldn’t be needing to pay thousands in cat boarding fees every time I went into hospital. I wouldn’t have wasted thousands on taxis over the years when I was unable to physically get home due to weakness or imminent collapse. And so much more. Most of all, I wouldn’t be with the public trustee and having to fight to get things that I consider neccessities.

So I’ve been thinking a lot more about this whole situation lately – and with the support of some very close and wonderful friends – I am applying to come off the public trustee. This is a terrifying thought – much as I hate them, after all these years I don’t trust myself to manage my money. I feel like I have totally forgotten how. I’m scared that I’ll binge it all away immediately. But I have support I never had in the past. I have options I didn’t have like direct debit for bills. And I have come a long way in many ways including, I’m a heck of a lot more mature than back then. So I’m finally taking the leap. First step is applying for a tribunal hearing, collecting the paperwork necessary, and showing them that I can make decisions myself now. Then… I don’t really know. But hey, I know now that I can deal with it.

So, this blog entry began as a way to explain why I haven’t been online as much in past weeks and not at all the previous week – I certainly do ‘tangents’ well hey?

In other news – therapy is going well. And I’m just plodding along, at times just hanging on tight -because that’s sometimes all we can do.

Next week – in eight days actually – I’m going to Melbourne!  A long anticipated visit to a very dear friend – she’s going to show me her beautiful Victoria, and then we are driving up to New South Wales to attend a camping festival..  I’m so excited. And so terrified! I haven’t been camping since I was in school – I loved camping, but have no idea any more how it’s done… okay that sounds strange. When I was a schoolkid, life came a lot more naturally to me. And I didn’t have an eating disorder to deal with. Any trip away from home is extremely difficult for me because of the eating disorder. I have no idea how I’m going to go when camping – but it’s going to be a great opportunity to find out. I hope so much that I’m able to fully participate – and I’m going to try my best. I intend to enjoy campfire meals, toasted marshmallows, exploring the surrounds. I’m taking my art stuff and going to be doing a lot of just drawing what’s around me. A lot of reflecting and journalling. Chilling out. Reconnecting with nature. And at night – after all these years of city living, I’m going to be able to stargaze again without city lights for miles and miles. I’ve been told it’s amazing. I can’t wait.

Bring it on

Ironically it’s going to mean another week or more away from technology – there is not even phone service where we are going – but this is going to be a good sort of tecnology-free period!

Thank you so much to everyone who has commented and been reading – I have a heap of your comments that I’m dying to answer and just haven’t gotten the chance to yet. I have been reading them  - and I’m always extremely grateful, touched by your support, and intrigued by your views. Thank you for being patient with me while I’m so scarce lately! I also look forward to slowly catching up with your blogs – I’ve missed so much of what you are all up to and what you are writing about – and I’m deeply sorry for that.

Hoping you are all well! Thank you for reading

(Image Sources: 1, 2, 3, 4)

Reblogged from Recovering Anorexic: Spread Thin:

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)