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)

Discouraged

The post-festive period is often a time of steep come-down for many people.

For me, lately, it’s been peaks and valleys.

If my life has been a journey, it’s been a rough one.

But that’s made me all the more determined to continue on, to make it through to the end – wherever the end may be.

For all the times I’ve struggled to climb a steep, rocky slope, I’ve slipped down an equally treacherous abyss.

For all the times I’ve realised just how worth living life is, how wonderful and amazing this world is and how much I love those people I am blessed to know, I have been equally as hopelessly lost in a black well of depression. Unable to see but a star in the sky – but I hang on to that star, because it reminds me that there is a way out. And it reminds me to dream. Because dream I do, and dreaming is how I convinced myself I had a reason to live when I was in my rock bottom places.

 

My dreams used to be high as the sky – there were no limits. I was going to be a dancer, a writer, a veterinarian, a biochemist, an artist.. there truly were no barriers. If I wished to achieve something deeply enough, I worked my guts out at it and I got there. My childhood and adolescent years were heady with the heights of my own successes. I rarely knew failure. I was labelled ‘gifted and talented’.

The hell of home paled when I threw myself into that world.

But there comes a time when the good can no longer block out the effects of the bad, and the nightmare overcame the pleasantness. I no longer was able to become lost in the dreams I worked towards, no longer was able to concentrate, I was only partly there any more. I was dissociated.

Part of me ran away. Flew away. (Still wants to, all the time, today.)

Here I am now. I have incredible difficulty living in the present.

It’s scary to be me. I’m 35. I have nothing to show for it. No hopes. No dreams. They all were lost. Ravaged by what happened. By illness and trauma.

I have never had a job. Never will have a career. My brain is incapable of study. Cannot remember even the basics of stuff I need to know when I need it. Cannot read and enjoy books. Cannot concentrate to paint. Cannot hold a conversaton sometimes.

I will never have a partner or husband, never have children of my own. Never have grandchildren or nephews or nieces. Never play Santa or the Easter Bunny, bake birthday cakes, pick out pretty dresses or play in the garden with my kids. Never take them to school and coach them through their homework. Never be frazzled by tantrums and tears.

I cannot enjoy ballet, cannot enjoy volunteer work, because I spend days flooded with anxiety about just leaving home, getting there, being there, and coming home again. I’m wracked with fear about just doing every day things. I still do them. But enjoy them?

My brain is mush, my heart shattered, my self broken, my body wracked with pain. What is there to live for?

I have no future.

The best I can hope for is to survive. I will never heal completely from the traumas, because there are no options to help me with it here in Australia beyond what I’ve accessed already, and try as I have to help myself, I’ve gotten nowhere.

As a child, I was prisoner of my family.

As an adult, I’m prisoner of my mind. Of my past.

Is it any wonder that all I want is to fly far, far away?

(But I won’t give up. I never have. I never will.)

Image sources 1, 2, 3, 4

Compulsive Self Deprivation

As I’ve written previously, I struggle a lot with body image. But much of the time these days I still manage to accept myself enough to not want to stomp all over myself until I’m a pulp, preferably invisible pulp.

I try and remember that I’m doing the best that I can do, with what I have. That’s all any of us can do, really. I’m not superhuman, nobody is. And I can’t force things to get better NOW because I’m so over the way things are. (If I could force things better, I would have been better a loooong time ago!)

The most important thing to me is to try and be a good person. To not hurt anyone – that comes first. One day I hope I can help people, but I know that at the moment I have very little to give. I try – because no matter how little we have, we can always listen, always care, always have a hug to give, a shoulder to lend someone. I can do those things. And they might not be changing the world, but they are something.

I try and be a kind person, too. I’m not always kind – I’m human there, too. I have thoughts that are angry, or mean, about others. But mostly I try and treat people and think about people with compassion – the same way I would hope people would treat me or think about me. I know that many people do not – but that doesn’t mean that I can’t either.

And yet, I hate myself. I always have. I know I’m not alone. I’ve met so many others who struggle with intense self-hatred. I’ve never found anything about them that’s hateful, either. Never.

It’s really hard to look after yourself when you hate yourself. Nothing you do is ever ‘good enough’. Everything is always ‘your fault’. Other people must secretly find you disgusting. They must be crazy for wanting to have anything to do with you, let alone LIKING you. You feel so guilty if you do anything nice or caring for yourself – including basic self-care.

My mother never really taught me basics of self care like looking after my finger and toe nails, how to properly care for my skin, etc – but even as an adult, having access to the information on the internet and in books and magazines, I struggle to allow myself these things. For years I didn’t bother moisturising my face, because moisturiser is an ‘indulgence’ to me. I don’t wear makeup unless it’s a special occasion and even that is once in a blue moon, maybe once every few years.  I’ve had my hair cut by a hair dresser a few times in my life time – preferring to just let it be in a pony tail or have a friend/some unlucky person trim it (Many of my adult haircuts have been while in hospital – a good excuse to not have to consider going to a salon.) And I don’t bother with my fingernails or toenails. I keep them short, and neat as possible, and clean, but that’s it.

When it comes to clothes, I LOVE clothes. Love looking at them in fashion spreads. But they are, to me, something that other people can wear. I just am on the outside looking in, liking them, but clothing myself in op shop finds and plain shirts and jeans. As a child, I never had nice clothes like the other girls, but it was to the point that all I wanted really was a clean, unstained or torn t shirt and a clean, unstained or torn pair of shorts. And a pair of shoes that fit and weren’t breaking apart. Basic things. As an adult, I have far more than that – and I’m thankful. So although I love fashion, I don’t crave it. I also feel guilty and like mutton dressed as lamb if I try and wear it – I still feel like it’s not for ‘me’ because I’m so ‘different’ to others.

Other people are worthy. I’m not. That is how I have felt for my entire life. And that is what was instilled in me personally by my family as I grew up.

Where I’m going with this is, that as an adult, I still struggle with these messages of having no worth, despite the fact that I rationally know they are not true, and that I am as worthy as any other person on this planet. Old habits of thinking die hard.

CBT helps a little. My therapist gave me a list of questions to ask myself whenever I have thoughts like this. I write down the thought, so for example, I will write “I’m not worthy of having nice clothes, everyone will think I look silly in them and fake.” And I feel shameful, disgusted with myself – that’s the emotion that’s come up with this thought.

Then, I question my thoughts. What factual evidence to I have to back up this thought? Is there an alternative way to look at it? What might a friend of mine think in the same situation? And so on. I know that I have no evidence to back up not being worthy of nice clothes – and nobody is going to look at me any more than anyone else wearing the same clothing. An alternative way of seeing it might be to ask myself, would you prefer to assault the eyes of the public by wearing indecent clothing? Because they would most likely prefer you had nice clothes too. And I know that my friends, in this position, would probably not even think twice before buying the clothes for themselves – because that’s what people DO.

CBT is starting to help  me with a lot of things – not just whether I’m worthy of nice clothes or not. But it’s something that requires me to do it every single day, like homework. Seriously. And it’s worth it.

However – even though I have noticed an improvement in my thinking in that I am automatically asking myself the questions, automatically starting to correct my thoughts that way and tell myself “That isn’t true, that’s something you feel, but it’s not based on fact, the reality is..” I still find myself believing the old messages. I know I am worthy of nice things. I know I am worthy of self care. I know I am just as worthy as any other person.

But I don’t believe it.

It’s the same as when I’m telling myself  that I look fine, I’m not fat at all, that’s the eating disorder lying to me, my eyes and perception lying to me – I’m not believing it, because my reality is the opposite.

Also, the way I’ve thought for so many years is my NORMAL. When I’m feeling sick, hungry, in pain, fatigued – that is not pleasant, but it is normal for me. And so things feel ‘secure’ in my world, in some tiny way (because they aren’t really secure.) When I’m feeling satiated, strong, healthy, awake – that is such a scary feeling. It feels alien and wrong to me. And I know this sounds so screwed up. It’s like I am wired backwards.

It’s like I am wired for self-deprivation.

Recently I was reading an email newsletter from Psychcentral.com, when I stumbled on a blog entry about compulsive self-deprivation. The author wrote about it in the context of being the silent partner to addiction. (This blog is about sex addiction – ignore that, unless you actually do have a sex addiction!)

These paragraphs grabbed me:

“Where does compulsive self-deprivation come from?

Self deprivation has to do with how you care for yourself.  Most often .. addicts come from families in which they experienced a lack of appropriate nurturing.  In adulthood, people tend to care for themselves the way their parents cared for them, or failed to care for them.

In other words you treat yourself the way your parents treated you.  Growing up with less than adequate nurturance, you may have no idea of what good self care should look like.  If your parents were rigid, distant or withholding caregivers you will learn that you are expected to “disappear,” and to disregard your own feelings and needs.  By being compliant in this way you as a child hoped to please your caregivers and gain their love or approval.” (Source)

This is me. This is so true for me, for my history, for the people who brought me up. Another piece of the puzzle as to why I am the way I am – and understanding is a first step to being able to change that.

I related so much to the common features of compulsive self deprivation: (source)

Compulsive self-denial or self-deprivation can take many different forms. The behaviors can be superficially acceptable behaviors like religious asceticism and fasting or they can be extreme behaviors that qualify as mental disorders in their own right, like anorexia, workaholism and self-harm.

YES this is true for me

Not taking care of your basic needs

This includes neglecting all kinds of basic self care such as attending to medical needs and dental needs, neglecting hygiene, allowing garbage to pile up, not repairing things that break down, not paying bills or taxes and not reaching out to significant people in your life.

YES. I used to be so careful to take care of myself and do all the things I was meant to do – but for years now I have found it really hard to do these things, sort of like I am trying to let myself fall in as big and deep a hole as possible.

Denying yourself pleasure and tolerating pain:

This includes restricting food, going on unusual regimens and cleansing routines, compulsive exercise, excessive body piercing or tattooing, and cutting yourself. It also includes avoiding sex and other pleasurable activities, hoarding money instead of spending it on legitimate needs and becoming over-involved in religious or spiritual practices that demand excessive self-denial and withdrawal.

YES to the point that it’s terrifying to me to not feel really bad, painful hunger, it feels wrong to NOT feel that. It feels scary being ‘well’ again rather than feeling awful and sick, despite it being so awful. I do NOT ‘like’ the pain/unpleasantness/being sick – I just find it really alien to not feel it, it just feels too wrong. I only feel okay when I’m suffering.. if that makes any sense?

Avoiding success and abundance and living in fear

This includes avoiding opportunities for success, working for free or for too little, overwork, going into debt, living in minimal surroundings and with a lack of fulfilling relationships or activities, and letting go of previous recreational pursuits.

I want SO BADLY to have success, to achieve as I used to – and yet it does seem like I’ve gone out of my way to stop myself doing so. Right down to refusing to let them pay me when I used to volunteer because it just freaked me out and I felt too guilty.

Do any of you relate to this at all? 

Compulsive self-deprivation is very much a strong part of my whole eating disorder – and I need to work at permitting myself to meet my basic needs, believing in my own worth as a person, believing that I deserve to feel okay physically and mentally – and to practice staying with feeling ‘okay’ until that becomes my normal instead.

Of course, it’s not all that simple, life never is – but it’s helpful to have an idea of why we feel the way we do.

(Featured Image credit, Image 2 credit, Image 3 credit.)

Happy New Year! High Tea, Friends, Happiness, And More To Come.

Hello! I just wanted to quickly pop in and share with you my special, challenging day – and most of all to wish you all a wonderful, happy New Year.

I can’t believe that 2012 is coming to a close already. It goes so fast!

Today, I did something that a few years ago I never would have dreamed of doing. Another something – after Christmas and my Sleepover parties!

I met up with two special friends for a Fashionista High Tea at a pretty amazing place, the Palazzo Versace hotel on the Gold Coast. We had high tea in this amazing room – the Le Jardin restaurant -

High tea was sublime -

Eyeing off the goodies…

Of course, I take terrible photos. Focus on the FOOD, and the surroundings! The pool was amazing. We are all going to have to come back at some stage and get ourselves a pagoda!

That can totally be a New Year resolution.

I’m not really big on actual formal resolutions any more. I used to aim for the sky, far higher than I could possibly hope to achieve. It meant for me, that I fought harder and usually achieved more than had I aimed for what was ‘reasonable’. That was one of the secrets behind my high achievements of my younger years.

The biggest secret was that I was obsessive and relentless and pushed myself, body and mind, beyond the limit – and this contributed to my eventual break down. I guess there are ‘reasonable’ limits on most things for a good reason.

I often think just how much more I could have achieved in my life, had I stuck to limits that were reasonable for me. I might be in a career now, I might be married, or at least have a partner and kids, I might be a totally different person in a totally different position to now.

But we can’t waste more time with regrets. We only have right now – our future is made up of a series of ‘right nows’ – and it’s by making right now the best we can make it that we ensure our future will also be the best it can be.

And that’s what I’m going to focus on in 2013. Trying to make every moment count. Trying to continue the good things I’ve managed to achieve this year, and add more, but not overwhelm myself to the point of relapse.

In 2012, I achieved 2.5 years hospital free, and with a fairly stable weight at around 15 kilos heavier than what I used to fall to, and 5 kilos heavier than what my discharge weight used to be. I started volunteer work, graduated from physiotherapy after 18 months, started ballet classes, moved suburbs, completely cut off my biological family, and grown in many other small ways. I’ve taken up some more hobbies like gardening and sudoku, been painting and in an art show,  and I’ve been stretching myself so much more socially – getting out there meeting friends and DOING things with them instead of letting the social anxiety part of things cut me off.

I’ve eaten out so much, eaten so many new things. Like Christmas dinner, birthday meals, just meals at restaurants and picnics, high tea today. A couple of years ago, there was no way I would even put a speck of that stuff in my mouth, or keep it in my body,  and that’s before we even get into the ‘in public’ stuff.

I’ve  even gone swimming in a public pool and at the beach, and I’ve slept over with friends twice.

And I’ve started proper therapy and am working hard, making good  progress.

It’s been a great year. And there is so much more to come.

In 2013, I just want to keep expanding on these things. I want to increase my work hours so I can get a real job, and keep on volunteering because it’s good for my spirit. I want to do more ballet, and tackle the crippling anxiety that I have to fight to get to do it every single time. I want to do more things with more friends more often. I want to enjoy my own time more, doing more things I like or find meaningful or constructive rather than sleeping my life away or being sucked up by all ED thoughts and activities. And I want to progress even more with the therapy, and hopefully be able to achieve some peace – to that end, I already have an intake appointment lined up with an independent ED-based counselling/therapy service provider early in January and hope that when my 10 psychologist appointments are up, this fills the gap. (I also found the courage to ‘fire’ my private psychiatrist.)

I’m not making any ‘absolutes’ though – because we never know what is going to happen, and I think that as long as I’m going in the right direction, that is what matters.

I hope all of you have a wonderful, safe, happy new year, and that it brings better times – better health, peace, stability, healing. I hope that the good things are only a sign of things yet to come. And despite wishing you all so much more, in the same breath, I wish you all enough.

Okay, enough of my long winded ‘quick’ post! Go celebrate, go sleep, go see out 2013 in a way that makes YOU happy, and start the new year in a way you mean to continue.

And thank you all for being so supportive and lovely to me throughout this year of blogging.

(Image Sources: 1, 2 , 4, 5, 6)

(Ps, Shalimar has informed me of her desire to spend the new year eating, sleeping, catching lizards, and repeating it all over again )

It’s Nearly Christmas

Christmas has come so fast! In a few hours in Australia, it’s Christmas Eve.  I will be going to the Gold Coast to spend Christmas Eve with a very close friend and her family – followed by a huge Christmas Day. I’m so excited and also so nervous – it’s the biggest challenge so far to the eating disorder and the various forms of anxiety.

And I’m going to rock it.

“…is it FOOD?”

My only sadness is that Shalimar will spend Christmas day alone. Comfortable, yes. Well-fed, yes. But not with me. Thankfully, she will not even know it’s Christmas!  I know now that she will be more than fine – she will spend her time sleeping, watching lizards and lying next to her bowl, scooping the chow out with her paw towards her mouth. These things make her very happy indeed!

No matter what you celebrate, and no matter where you are with your own individual journey – I wish you all a happy, safe, peaceful and hopeful holiday season, and hope that the New Year is one of positive and hopeful times.

Thank you to all of you for your readership, your comments, and your amazing support during the just over a year I have been writing this blog.

All the best – Fiona and Shalimar xx

 

Frightening World

I wonder how many of you find the world ‘too much’? Just as many of us with eating disorders find ourselves to be ‘too much’. I do.

I have been thinking over this a fair bit recently. With all the violence and fear and pain in this world, I always find myself wanting to remove myself from it. To opt out. Not to be a part of it. I cannot cope with the feelings, cannot cope with other people in pain – wanting them to not be hurting and not being able to do a thing about it – and so I just cannot cope with ‘being’ at all.

It’s a fact of life now that we are completely surrounded by pain and suffering. People get killed, or die from horrible illnesses. Or hurt. Or betrayed. A multitude of things. There are people who suffer from going without. From loneliness, from poverty of both the heart and of things needed. There are people who spend their entire lives scrabbling to just get by and survive. Too much power is in the hands of those who do wrong with it, and too little in the hands of those who would do good. The actions of one person can kill millions of people.

And there is nothing I can really do about it all.

I feel so powerless.

And I feel so frightened and overwhelmed by it all. By the terror and pain everywhere I look.

This is a big part of why I step away from the world and bury myself in my own, in the world either of my own imagination, or I simply dissociate somehow. And the starvation of anorexia helped me to do that. The more I starved my body, the less I found my mind lived in reality – I flew away, I really did. I simply flew away from here and all that hurt. Left it all behind.

Being refed brings me back to reality with a thump. A thump of having a body, and a thump of having to deal with all that goes on around me. And I still don’t know if I can handle it.

But I have to. And so now, I strive to. It seems that a lot of what I’m learning in therapy to help myself tethers me even more strongly to this world that I often find myself HATING. And yet, if I keep ‘flying away’ I cannot live or survive. I have to choose – live or die. Tether myself or fly.

I’m choosing to live. And though that’s the harder of the choices, I guess that it’s important that we always remind ourselves – we are not as powerless as we feel.  So we might not be able to change the world all by ourselves and straight away! But every little bit counts.

Have you ever heard the parable about  how the constantly dripping water wore away the rock, but the bucket of water couldn’t? That is how our own actions work. Little bits over time – adds up to real, powerful change. We can throw all we have at a problem, all the solutions in the world at a problem, but it’s not going to make as much impact as little bits, constantly, over time.

And that’s something every single one of us CAN do.

Conclusion – we are NOT powerless. I am not hopeless or helpless. I can make a difference in this world – and I choose to stay and try. And so can you.

(Image Source: 1, 2, 3, 4)

Crazy Christmas Cat Lady Survival Pack

I wish there was a pack you could buy that had everything in it to deal with Christmas with an Eating Disorder. In fact, I think it’s brilliant idea that someone is going to make a fortune out of some day.

I think mine would definitely need things like a ready-to-assemble sound-proof screaming booth, canned answers to the questions that I get asked every single year several times over, Super duper clothing that no matter what I ate or drank felt comfortable and hid all sins (both imagined and real, and I think the maker of the invisibility cloak from Harry Potter would need to be involved.. in fact, scratch that, just give me the darn cloak already…) and so many other things I can’t even think of yet.

It’s very easy in the midst of stress and frustration and the whirlwind that the end of the year can be, to lose sight of the little but important things. For me, Christmas is special because of the people I’m so blessed to have in my life.

This Christmas I’m actually going to be wanted, included, and spending it with people who love me, do their best to understand and support me, and never would willingly hurt me as my family has done. This will be my first Christmas with my true, chosen family as part of the family  - as opposed to being a guest. In a way, this actually makes me a bit more scared of the actual food and social aspects of the day, because I although I have always tried my best to take part and not give others any reason to worry, more than ever this time, I don’t want to ruin the day for anyone, or give them cause to worry about me. That means participating to my fullest ability – whether the ED says I can or can not. I know that my friends will not be disappointed in me if I can’t, because they truly love me and want the best for me. But they would be sad, and I want to only give them cause to be happy.

I have always tried so hard – and most times, failed (In my eyes) because in hindsight, I might have been joining in, and pretending to eat, but I can see that I didn’t fool anyone. But this year I have more power, more insight, more love and support, and in many ways, I’m a different person to the previous years. Same person but better. (New and Improved Fiona?? LOL)

I do still wish there was a kit full of little lifesaving devices to help me through every eventuality though!

I have so much to write in the lead up to Christmas, that I don’t know where to start. So I thought I would start with this question to my readers -

What would you have in your Christmas Survival Kit?

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.)

Ghosts Of History

The other day on Facebook I stumbled across an amazing page. The “Ghosts of History” photo series made by Jo Hedwig Teeuwisse, (page is in Dutch, use Google Translate) shows pictures of the past combined with pictures of the present.

The scenes are absolutely haunting. Looking through these photos has brought home to me more than ever before, just how much soldiers during the war sacrificed for their country – and many still fight on our behalf today. It is one thing to read about it and ‘know’ about it, but it can be hard for the past to feel real.

I know I will no longer take my freedom and my standard of living for granted – I will be saying thank you every single day.

The artist’s Uncle Dirk.

It’s well documented that many returning soldiers battle Post Traumatic Stress Disorder – PTSD – many for the rest of their lives.

Post traumatic stress disorder (PTSD) is a severe anxiety disorder that can develop after exposure to any event that results in psychological trauma. This event may involve the threat of death to oneself or to someone else, or to one’s own or someone else’s physical, sexual, or psychological integrity, overwhelming the individual’s ability to cope. As an effect of psychological trauma, PTSD is less frequent and more enduring than the more commonly seen post traumatic stress (also known asacute stress response). Diagnostic symptoms for PTSD include re-experiencing the original trauma(s) through flashbacks or nightmares, avoidance of stimuli associated with the trauma, and increased arousal—such as difficulty falling or staying asleep,anger, and hypervigilance. Formal diagnostic criteria (both DSM-IV-TR and ICD-10) require that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning. (Source)

But it’s not just soldiers who suffer from this. Anyone who is experienced to a traumatic event can develop PTSD.

I have Complex Post Traumatic Disorder – C- PTSD.

Complex post-traumatic stress disorder (C-PTSD) is a psychological injury that results from protracted exposure to prolonged social and/or interpersonal trauma in the context of either captivity or entrapment (i.e. the lack of a viable escape route for the victim) that results in the lack or loss of control, helplessness, and deformations of identity and sense of self. (Source)

When I stumbled on these photos, of course I was fascinated (I love history among other things), saddened, and grateful – but also excited. For a long time I have tried to explain to my treatment team what it’s like to be in my mind on an every day basis. I have flashbacks every single day, throughout the day. Most of them are what I would call ‘mild’ – and would probably be better using something other than ‘flash’ to describe how I’m plunged back into my past against my will, because it’s more like a slow, lingering dalliance.

Imagine you are walking through your local park, surrounded by trees, grass underfoot, birds flying around you. But you don’t just see your park. You aren’t ‘all there’ – part of you is walking through your back yard 20, 25, 30 years ago. And faintly, in the same place as your park, you can see your house, your swing set, the longer grass and weeds of your yard, the dog trotting round…

When these happen – as they do all the time and in so many places – more of ‘me’ seems to be in that past than stays in the present. It’s lead to several people over time describing me as ‘not being all there’ and I guess they are right. I’m trapped in something that really wasn’t fair to have lived through the first time, let alone again and again for the rest of my life.

Seeing these photos of the past superimposed into the present are so much like what my own reality is – living past and present simultaneously.

Please note – this is not something that I have chosen to experience or revisit. My therapist is going to help me learn to emotionally detach from the flashbacks, but it’s not something I can just decide to not have any more and that be it. The thoughts are intrusive and unwanted, and constant.

I’m so relieved to know that there is help for this, I do accept that there isn’t any ‘cure’ and there isn’t any undoing of the past – but to know that I can learn to keep myself safe, detach emotions from the flashbacks I experience, and hopefully have some peace from them – gives me hope.

I am really interested in hearing about your experiences, how you are affected, what has helped, how you cope. 

(All images taken from the Ghosts of History Facebook page.)

Keeper Of the Cosmetics

I love my new volunteer job!

The hardest things about it are waking up in the morning, getting out of bed, and getting over the FEAR of just.. the whole thing!

But once I get there?

I LOVE IT.

I’ve only just started there – and it’s an amazing place for me to spend my time. It is a boutique and a mentorship organisation, run mostly by volunteers. Clients are referred to us from many places – from employment agencies, from welfare agencies. From churches, health centres, etc. I don’t think there is any particular place that refers, just that most referrals do come from employment agencies.

The average client is a woman (we have just begun to have sessions for men, too) who has been out of work for a long time, and is from a disadvantaged background. Usually she has an interview for a job, often it’s the next day. She won’t have the same chances as the other candidates up for the job, and it’s our mission to even up those chances!

Each client has the entire boutique to herself when she comes to have her session. She’s outfitted from head to toe in top quality corporate-suitable clothing appropriate for whatever job she’s going for. Underwear, stockings, shoes, handbag, jewellry, everything is top quality and hers to keep – for free. She’s given tips on hair and makeup, and brand new cosmetics and toiletries to take home and keep. She’s given advice on her resume and mock interviews. Every possible aspect is covered, and she goes away feeling and looking like a million dollars!

And if she gets the job, she comes back for another entire outfit to keep, plus she joins the woman’s professional group for networking.

It’s an awesome organisation. Worldwide, with chapters in over 40 countries. The more I hear about what they do, the more impressed I am.

The other ladies there are just wonderful – warm, caring, kind. Today was fun – I chattered with the lady overseeing me while we sorted out donations of more makeup than I have ever seen in one place in my entire life. Brand new, top quality cosmetics. I feel like I could get quite friendly with these women if I was at this place for a while. And I hope I am. Even when I get a paid job, I intend to always volunteer here. It’s just that nice a place, with that nice a bunch of people there.

Well, today, I was made ‘Keeper Of The Cosmetics’. Ironic, because I never wear makeup these days. During my childhood and adolescence, always performing somewhere, I was always in stage makeup – dramatic and dark – BROWN as anything skin, Dr Spock-worthy eyebrows, ‘cats eyes’.. definitely not suitable for every day wear. At the ballet school, we even did makeup classes and learnt how to create different looks. You can age someone using just makeup, to look like an old crone, or an evil witch, or a troll! It looks terrible close up, but on stage, very convincing.

Turn a nice young woman into an evil old crone!

(Image Source)

Of course, this sort of thing isn’t a good look for every day wear! Growing up, I never did the sort of thing I hear a lot of girls do with their mums – learn about make up (and other girly things) experiment, do it together etc. I was clueless when I left home. I could ‘sort of’ put on a face for a performance (I was always hindered despite the lessons, by a struggle to have the needed makeup) but I could not do a face for every day wear. It either ended up far too light, or so dark I scared everyone. I remember going on a date with a face so caked with makeup that when I got home and looked in the mirror I nearly passed out – it had settled into wrinkles! Arrgh. So I gave up.

So it’s rather hilarious that the makeup at work is now Fiona’s Province! Almost as hilarious as it is for someone completely lacking in self confidence themselves, and with utterly zero fashion sense, to be an assistant in a boutique and mentorship service!

But it’s a very good place for me to be to learn these things by osmosis.

My self confidence has had a boost already. I feel I can hold my head a bit higher because I’m contributing – it may not be much yet, but I’m doing my best. And just to be accepted and to be told how much my work is valued, that’s wonderful too. Very healing for someone who always believed that at best, she’d be in the way, at worst, she’d create more work than she managed to actually do.

Life works in funny ways, sometimes. I fully believe this was meant to be – this is the last place I’d ever have chosen to work – or imagined I’d end up – since I’d be far better suited in a library or as a vet assistant. And yet, here, I’m not only building up my capacity to work in hope of being able to actually be employed, I’m having a super-intensive self-esteem, grooming, deportment and confidence education!

Has life worked in funny ways for you – have you ever found events happening in a way you never would have imagined – and it turns out to be for the best?