Flashback to 2009 – Hospital Days.

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

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

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

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

Monday, 13 July 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Please help me God. Help me help myself.

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

 

 (image source: 1, 2)

It Is Just Not Good Enough.

I hoped to avoid writing much more than a short acknowledgement of the tragic events in the past few days. I am heartbroken, both for my own reasons, and more, for everyone touched by these senseless, horrible events. But nothing I could possibly say could help anyone, change anything. Not only that, but I’m half a world away, in a country that has a totally different attitude to gun control, and it’s an argument that I can’t take part in right now since I am not well enough informed of any of the facts and circumstances.

However, I do feel. Just like every other human being. And hearing about killing after killing, I cannot fathom why tighter gun controls are not put in place. I’ve heard all the ‘guns don’t kill, people kill’ and ‘take away the guns and the baddies will still get them and then we will be unable to protect  ourselves’ arguments. I don’t agree with either of those – it seems more often that the good people’s weapons are taken and used by bad people, or involved in accidents. And people kill people, yes, but why would you want to hand them an easy way to do it if the impulse strikes them?

Those kids.. they were just little innocent kids. I cannot even begin to understand how anyone, ever, could even consider killing a kid. A kid, let alone  so many. So many precious, innocent lives. Potential lost. So many families destroyed. So much trauma for the survivors. And trauma ruins lives, for years after it happens.

This brings me to mental health. There have been a lot of people saying that this is yet another sign that we need better mental health care – better access to it in the first place, better standard of care and follow up, just better, better, better across the board.

Or even ADEQUATE would be a good start.

It is truly horrifying that in our first world countries, it is easier to get a gun than it is to get help for your mental illness. It is easier to kill yourself or someone else, than it is to get even basic treatment, understanding, and a sense of hope. It is easier to end it all, taking a few out with you, than it is to continue to receive adequate care and support for the full time that it takes you to recover and rejoin life.

It sucks that when something like this happen, a lot of people think that most people who have a mental illness do things like this, are dangerous, are downright evil or stuffed up enough to do something like this. That’s not true. There are sick people, and then there are bad people. You can be both, but being sick does NOT mean you are automatically bad too.  I think people who perpetrate horrors like this are sick AND bad. It is far from the norm for people with mental illnesses to be violent or dangerous. But we are tainted with the same brush as the bad eggs, and acceptance among mainstream society takes another dive.

The stigma surrounding mental illness is still alive and well, today. People feel they cannot tell their friends, their families, because they will be ostracised. They cannot let their employers or colleagues know or they will lose their jobs or at least lose respect in the workplace. And they feel the brunt of having a ‘lesser’ illness daily. Mental illness causes unbearable distress, disability and death. And yet people who have them are treated like it’s a personal failing (which it is not)  rather than a genuine illness that they never asked to have (which it is).

Because my biggest problem is the eating disorder, I will talk more about that now, but the problems with getting help and understanding are across the board with mental health care.

If someone has cancer, everything is done to try and get them into treatment for it as soon as possible. And everyone recognises that they are sick. No way would they be told “You are not sick enough yet, come back when your cancer has spread to some organs or to X percent of your body.” You wouldn’t be told “If you just wanted to not have cancer, you would not have cancer. Put a smile on your face!” or “Just do it!”.

 

You wouldn’t be treated like a criminal by your treatment team. You wouldn’t have an inpatient experience that is akin to being jailed.  Sure the nature of eating disorders can make us dishonest and sneaky – mostly with ourselves – but that’s the illness, not us. It’s what we need their help to treat – not derision or punishment. If we need restraint and supervision, it is very possible to do this with kindness and retaining the patient’s dignity – and yet often the treating people do not seem to think these little yet essential things are worth consideration. Have they not realised that their treatment of people this way not only hinders their recovery chances, but if they just put some kindness and the willingness to try and understand into it, they would get better results all around? And how is punishment such as not allowing someone to see their loved ones, taking away their possessions and clothes, and forbidding them to engage in activities they enjoy helping them? Short answer – it’s NOT.

If someone has cancer, they will not be told they are incurable and left to die unless they really are. And even then, they will be offered comfort measures and support. But with an eating disorder, many are told they are ‘hopeless cases’ as if it was their fault, and, apart from when they are at death’s door, left to just survive in the community. They deteriorate physically and mentally and they lose hope. They exist in a living hell – unable to live, but not allowed either to die, just in limbo.

I have heard of people in other countries being unable to get into or kicked out of treatment centres because their insurance companies would not pay. I have heard of people who have travelled thousands of kilometres and mortgaged everything in order to just have a chance to survive. And I have countless friends who have died, and heard of countless others who also have died.

It’s just NOT GOOD ENOUGH.

There are a heck of a lot of problems in this world that come back to mental illness, and a heck of a lot of people in pain. We cannot just ignore mental illness and hope it goes away. Doesn’t happen. Never will.

How many more innocent people have to die, how many little kids? All for the want of adequate care, understanding, and treatment.

So where do we start? What do you think would be a good starting point? 

Have you struggled to get help? 

(Image sources  1, 2, 3)

Should Mentally Ill People Get To Say Don’t Help Me?

I’ve been discussing this issue with a few people lately, it has come up in the past for myself when I’ve been most unwell. There were times when I begged the people who were treating me to just let me die, because I had tried again and again, fought my hardest, and truly had nothing left to give. I just wanted to be left alone, to be allowed to have some measure of comfort rather than invasive and traumatic treatment.

I felt like they were flogging a dead horse. I really did. And the dead horse was me.

Other reasons this debate has come up include my own being given the chance to sign an advanced health care directive and contribute to my emergency admission plans, and the recent cases in the news of women with Anorexia who have either been court ordered to be fed against their will,  or not fed despite it meaning they would die. (Basically one of the women was given the right to allow her disorder to kill her, and the other was not.)

There are so many grey issues here. How do you decide when someone has crossed that line between their mental illness being treatable, and being ‘terminal’? (Currently I think that in Australia and many countries, it’s illegal to commit suicide, so it’s only when someone is actually terminal that they are allowed to opt for comfort measures over actual treatment). In cases like anorexia or bulimia, I’m sure there would be an actual point where someone was terminally ill – for example if their organs failed, or if they were brain damaged as Terry Schiavo was after a cardiac arrest starved her brain of oxygen. (Terry had bulimia.)

But it’s not so clear cut in every case. Mental illnesses are just that – illnesses of our minds. When someone is ‘terminal’ physically from an eating disorder, it’s due to what the mental illness has put them through. It goes without saying though, that the severity of someone’s mental illness isn’t always echoed by the severity of the physical consequences. I am absolutely sure that the mental anguish that many of us with mental illnesses suffer can go beyond a point where it’s more cruel to force them to live. I have spoken to people who have schizophrenia and are non-compliant with having to take their medications who have told me that the effects of their medication are far worse than just living with the illness, and that they would rather die, or rather be sick and have a non-life than take it. But they don’t have a choice. (Please note, this is not the same for everyone with Schizophrenia just as no other mental illness affects everyone the same way. Someone else might find living with Schizophrenia far too distressing and prefer to at least live with medication side effects and have a chance of a functional life, and other people might not even have the same side effects or to the same degree from the medications.)

The laws vary of course, from place to place. Here where I live, in my state in Australia, you can be placed on an Involuntary Treatment Order (ITO) , which means that you can be given treatment against your will. The criteria to be put on an ITO are:

•  the person has a mental illness
• the person’s illness requires immediate treatment
•  the proposed treatment is available at an authorised mental health service
• because of the person’s illness:  there is an imminent risk that the person may cause harm to himself or herself or someone else, or the person is likely to suffer serious mental or physical deterioration
• there is no less restrictive way of ensuring the person receives appropriate treatment for the illness, and the person:  lacks the capacity to consent to be treated for the illness, or has unreasonably refused proposed treatment for the illness. (source) (emphasis mine)

The causing of harm to oneself or to others is probably the biggest factor that gets people put on an ITO – so if someone is suicidal and likely to kill themselves or try, or they are starving to a point of medical danger, or bingeing and purging so much their electrolytes are all over the place, and you refuse treatment or hospitalisation, they’ll ITO you. If you are raving psychotic and hitting out at people or doing something like that, they’ll ITO you. (People with mental illness can become violent, however it’s no more prevalent than with the rest of society. That people who are mentally ill are dangerous is another of those big fat MYTHS that perpetuate stereotypes and get people killed.)

“This is Roni Levi, who was surrounded and shot fatally by police officers -after having a psychotic breakdown at Bondi beach.
His only weapon was a kitchen knife -which he would have had difficulty in using as his clothing was in a dishevelled state with his coat half off -as this picture shows.”

 

I was under an ITO for over 10 years, almost continuously. It was this that allowed the staff at the hospital to force feed me, restrain me, keep me detained, all against my will. And most importantly – keep me alive, despite my begging them to just let me die. Today, even two of my case managers during that time have expressed that they were not, and still are not sure that it was the right thing to do, given the distress I was in and the cruelty of the methods used, but even more the fact that I wasn’t expected to live and there was little hope for me. It did seem especially cruel. For me, it was a living hell that was far worse than the hell of the actual eating disorder, and triggered a lot of abuse stuff for me as well. All to just get me to a point where it was inevitable that I would again end up in the same position, because I was discharged at such a low weight and no actual help for any of the problems behind my behaviours. I truly didn’t have a chance once I became that ill. And for most of those years, I never was NOT that ill.

Today, I have a very different perspective on life. I am glad that I’m alive, most of the time. Living with my eating disorder and the PTSD issues and depression – that’s still hell. But I’m glad I’m alive, because there are so many things that make the bad times worth getting through. Also, being alive means I have a chance of making it. I have a chance of dealing with the issues behind it all and working towards some sort of life, peace, and dare I say it – happiness. If they had allowed me to die, I wouldn’t have those chances. I wouldn’t be here now at all. I couldn’t see that let alone believe in that, back then.

So at what point does someone with a mental illness, or more specifically, an eating disorder, become ‘hopeless’ or ‘terminal’? There are many of us whom the system has given up on us – will not work with us or takes basic measures to keep us alive but not ‘bother’ with anything further. But that doesn’t necessarily mean we don’t have a chance – it more means that the level of frustration of those helping us reached a point where they were no longer willing to ‘waste their time’ on us, when in reality they were wasting their time on trying things that had been proven not to help us rather than wasting it on US specifically.

With someone who doesn’t have an eating disorder but another mental illness that doesn’t actually affect their medical health – how do you even begin to decide where to draw the line with them? I have heard that in Australia it’s becoming accepted for people to have advanced health directives drawn up during their more well times (so legally binding) that specify wishes like no Electroconvulsive Therapy (ECT),  which is often given against the patient’s will when they are on an ITO, for example. But to allow someone to refuse treatment altogether – what about when that directly risks their life if they are suicidal? In the case of a terminal eating disorder, at least the death would come from physical complications. Suicide is an entirely different matter, and it’s also illegal in Australia, as is assisted suicide. (This is a whole separate matter in it’s own right to get into and debate!)

Further, when should anyone’s right to do what they please to their own body be taken away from them? I hate pro-eating disorder communities, and I hate that there are people out there who actually want to have something that’s caused myself and friends so much distress and even killed some of them. But I’m sure the people involved would argue that it’s their body, so they should be able to do what they pleased to it. At what point does self starvation, bingeing, purging, self harm etc  become any worse than possibly life-threatening extreme sports, for example? Personally, I know that while extreme sports would most likely be classed as ‘thrill seeking’, I’m pretty confident that there is little to no thrill in the mental illness produced dangerous behaviour, and that it’s mostly born from desperation and pain and sickness. But still, when do we take someone’s right to choose when to accept help for that sickness away from them and force help onto them?

Personally I don’t think anyone should ever be given up on, but I do think that everyone deserves to have their basic rights respected, mental illness or not. I believe that it needs to be judged on a case-by-case basis and that every endeavour should be made to honour the patient’s wishes.

I also agree with Laura Collins that if someone gets to the point where their eating disorder is terminal, the system has failed them, because the inability to nourish oneself whether through starvation, purging, or whatever is part of the actual illness and needs to be treated, not allowed to take over.

Carrie Fisher makes another point that I fully believe - patients shouldn’t be denied help through ‘non-compliance’. (It’s common to hear of patients being kicked out of treatment programs for this reason.) What is non-compliance but another symptom of the illness? Of course people with anorexia and bulimia are not going to want to gain weight or are going to struggle eating or keeping it down or not exercising. They have an eating disorder. What do they expect? Sheesh.

Basically to me, that means that if people with an eating disorder get the treatment they need and deserve, they will not reach the point of terminal – and that is the way it should be.  Likewise with any mental illness – these are not new conditions! We do have ways of at least helping lessen people’s pain and distress. Adequate support and respect also go a long way to making things that much less awful. NOBODY  should die from a mental illness, particularly in this day and age.

I guess that answers the question for me, sort of anyway – everyone has a right to make basic decisions about their life and their bodies, but if someone with a mental illness gets to the point where they are basically begging to choose to die or go untreated, we need to examine just how we have NOT been helping them adequately.

What do you think? I hope this made sense!

Further reading – I discovered a really interesting page that doesn’t just concentrate on Terri Schiavo’s case, but many issues regarding choice and control over end of life/health http://www.terrisfight.org/

Laura Collin’s blog Are You Eating With Your Anorexic

Carrie Fisher’s blog ED Bites

(Image sources :  1 (adapted),  2, 3, 4)

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.)

Spooky Stories

Happy Halloween everyone!

I don’t usually celebrate it – Halloween has never been much of a ‘thing’ here in Australia. In fact many people seemed to boycott it because it was an ‘American’ thing, and if there is one lament I hear constantly, it’s about how Americanised Australia is becoming over the years.

This year, however, its seemed like everyone’s gone nuts for it. Or should that be pumpkins?

In the lead up to today, I’ve been reading quite a number of spooky ghost stories from my local area. It’s amazing how many ghosts we have – and it’s not even that old a city, compared with say, Melbourne.

I’ve read about our most haunted building, the Petrie Terrace Arts Theatre – haunted by founder Jean Trundle. It’s fascinating because her husband was a member of the family my mother always claimed were our relatives on her side, descended by our city’s first lord mayor, so it feels a bit personal as well as fascinating for the history.

I’ve been shocked to realise that the medical street that I visit weekly was the scene of a massacre back in 1955 by a disgruntled patient, and that it’s now allegedly haunted by ghosts in several of the buildings.

Wickham House, together with Ballow Chambers, was the scene of a tragic occurrence in December 1955. On Thursday, 1 December 1955, Karl Kast, carrying a home-made bomb shot dead two doctors, Dr AV Meehan and Dr AR Murray and wounded Dr MJ Gallagher and George Boland. A fourth doctor, Dr JRS Lahz was severely traumatised due to the incident. Dr Michael J Gallahger, Kast’s first victim, was shot in his offices in Wickham House. Kast then ignited three bombs in the foyer of Wickham House. George Boland, a patient of one of the doctor’s in the building, attempted to stub out the bomb only to have it explode and maim his hand. Kast then went to Ballow Chambers, around hundred metres down Wickham Terrace, where he shot Dr Andrew R Murray and attempted to apprehend Dr John RS Latz, who escaped. Following his rampage, Kast locked himself in the office of Dr Lahz, within Ballow Chambers, where he shot himself and ignited another bomb. He later died in hospital. The tragedy was reported in the Courier-Mail on Friday, 2 December, as ‘…a horrible crime …[that]…sent a shock of horror through the city and all Queensland’.  (source, plus creepy tower of terror in Sydney story)

The hospital that I’ve spent so much time at has it’s ghosts too. One of the most fascinating things for me was to see how this place looked back in it’s early years – compared with how it looks now, and read the stories about it.

This was the women’s hospital, specialising in maternity. Over ten years ago, it was demolished and made way for the buildings that stand there today.

Being in hospital at the time and allowed to join a nurse and a group of patients for after-dinner walks, we walked past the old woman’s hospital demolition site every evening as it was getting dark. The building exterior stood for a long time after it was gutted inside. It was cut off from the various catwalks that had joined it to newer, larger buildings, leaving paths ending in mid-air. Through the windows you could see the electrical cords hanging with the rest of the guts of the building, swaying in the breeze.

Obviously one of the first things they did was cut off the power to the building – they might be right at the hospital, but risking electric shock would still have been silly! But every evening I would spot a few ceiling fans lazily spinning, even though there was no breeze, and odd fluorescent lights here and there, that should not have been able to light up.. it was pretty spooky!

I loved to peer into the buildings best that I could as we walked past – old buildings have always fascinated me. In fact there are several old buildings remaining on the hospital grounds to this day, out the back of the mental health centre:

My imagination goes off on an awesome tangent when I see old buildings. “What happened here? Are the people who originally lived and worked here still around? What are their stories? What is it like inside?”

I’ve been lucky enough to be inside the building in the lower picture, the old Nurses Quarters, when it was still used as accommodation for nurses over ten years ago. It still had a fair bit of it’s own furniture and there is an onsite nursing museum there today.

I was shocked to read in one of the museum’s old nursing handbooks, that as late as in the 1960′s, patients with eating disorders at this hospital (not that they were called that!) were given Insulin Shock Therapy to force their blood sugar levels to crash to try and force them to eat, the same treatment that many people with Schizophrenia were given – forcing them into insulin comas. How scary is that? I know that even when I’ve suffered dangerously low blood sugar levels – as I have many times – I’ve not been able to just eat to get them better. I would have been in an insulin coma and perhaps died, had I been having treatment in those days.

Do you believe in ghosts? I do. My grandfather died in this hospital, when I was in year 5 at school. I remember that the day he had died, a Friday, our mother had taken us out of school to visit him. He’d had a lot of strokes over the previous couple of years, each making him sicker. At the hospital, he was confused and disorientated, barely recognised us.

We left him to go into the nearby Valley suburb, for some early dinner, meaning to come back and help him eat his. I vaguely remember our trip there, and I strongly remember standing outside in a courtyard of a take away store while the rest of my family went inside to order dinner.

At some point, I looked up and saw my grandpa standing at the back of the courtyard. He was wearing a hat, dusty coloured pants, shoes, and a checked shirt. I was so confused! I’d seen him not an hour ago, in a hospital bed in his pyjamas! And he looked at me and smiled. I will always remember that smile.

(This is not the courtyard, nor is it my Grandpa)

My family came out of the takeaway, causing me to look away, and when I looked back, grandpa was nowhere to be seen. I tried to tell my mother that I’d seen him, earning me a slap on the face for being so horrible!

We caught a bus back to the hospital, I remember hanging on for dear life on an old rickety bus filled with peak hour commuters. Back at the hospital, the curtains were pulled around Grandpa’s bed, so we just waited. And waited.

Finally my older sister peeked through the curtains. “He’s all wrapped up like a mummy!” she said. He had died while we were out. He wasn’t wrapped up like a mummy (kids and their imaginations!) but the sheets had been pulled up to cover him.

I still believe my grandpa said goodbye to me that day. That he wanted me to know he was okay. I held onto that smile through the hardest and most painful times in my life, knowing that there was someone who cared – even if he wasn’t exactly here any more. I believed he was ‘out there’ somewhere looking out for me.

My grandpa believed that all time is happening right now – the past, the future and right now simultaneously – and that ghosts happened when somehow the past and right now cross over.

I believe that it’s our emotions that somehow ‘stain’ the fabric of time when events that are fraught and painful happen, leaving ghosts of what happened and the people involved behind. 

I often feel like even though I’m still alive, I actually haunt many places from my past. Not that I’m a ghost, so much as what happened was so painful and traumatic that part of me split off and stayed there forever, in that time and place of great horror and distress. Indeed, the past haunts me, every day of my life.

That is a story for another day, though.

Do you believe in ghosts? Have you ever seen one? Does your area have any ghost stories? 

(Image sources: 1, 2, 3, 4, 5, 6, 7, 8)

Deja Vu… (Wake Up, Fiona.)

Have you ever had that strong feeling that you have been here, done this, before? Lived this exact moment of time before?

Last night I had a moment of deja vu. I don’t know where I saw myself sitting here before, reading web pages on my computer, half an eye on the news on TV, one hand idly scratching Shalimar’s neck as she purred on my lap. I was looking at the TV guide open on my screen, and the shows were exactly the same as when I ‘lived this moment’ the first time’. Gosh it was eerie. I often sit at my computer while watching TV, Shalimar often sits on my lap, the TV shows are endless repeats – but it wasn’t just ‘doing the same thing’. It felt as though I’d previously viewed that exact moment of time before it happened – and it was happening right now.

I often have experienced moments of deja vu throughout my life. But along with the events of the last few days, last night took on greater meaning for me.

On Thursday morning, I woke up and tried to get ready to go to ballet classes, despite the usual amounts of fear. But I couldn’t do it, and I didn’t end up going. Instead, I sat down and wrote an email to the lady who runs the ballet school. I explained to her that I haven’t lost the plot yet, but I know I’m walking a very fine line and that I need to take a break from the ballet classes until I’ve gotten myself well again. I know I’ve lost weight – in my opinion only a little bit, but enough to matter when someone has a history of ED. Not only have I had to admit that two hours of dancing when I’m not maintaining my weight is not good, but I have become even more self conscious, and I don’t want people looking at me in skimpy clothing and freaking out! It’s been hot, and it’s only getting hotter as we roll into summer so there is no way I can hide under lots of layers during ballet classes any more.

I also don’t want to have ballet become linked with the eating disorder, since up until now it’s been a little slice of heaven – an oasis where the eating disorder has not had a chance to intrude. I want to keep it that way.

I hugely fear having made this decision though – because the way my eating disorder works is that it does strip me of things that are meaningful to me. Instead of being able to use the motivation of going back to classes to help me fight to get back to where I was (at the very least), if things were to go true to my history with ED, instead it would be a case of “You aren’t worthy of going to ballet anyway, and you aren’t going to ever dance again so just give up” and that would be the end of it – forever. ED has convinced me that my life was over and I had to die so strongly, so many times. I don’t want this to happen again.

So I compromised – the reply from the lady who runs the ballet school was “Why don’t you concentrate just on pilates class until you feel better?” and I thought this was a better plan. Pilates is very easy going, and it would mean I would at least maintain some of my rediscovered flexibility and strength until I could do ballet again too.

I sent a copy of my email to my case managers, because they are hugely supportive and I wanted them to know why I chose to do this. I didn’t want them to think that I was copping out, that I didn’t want to keep moving forward. I just didn’t think they would take it so seriously.

Yesterday morning, my Home And Community Care case manager came over for a catch up – asking how she can help me. She’s lovely and I felt a lot better after a chat with her. I’m truly lucky to have the level of support that I do, and that the people who support me as professionals do genuinely care.

At the same time, I had a text from my Mental Health case worker – wanting to see me ahead of our appointment next wednesday, to talk about things. I just assumed that she felt I might be upset and need support,  since she knows how much ballet means to me.

What happened was that I found myself being given an ultimatum – “Turn it around.” I have never seen my case manager SO intensely serious. She’s known me for ten years now, and been my case manager on and off for much of that time. She’s always been a really laid-back and good-humoured – even though she’s been with me through the best of times and the worst of times – far, far worse times. And yet, I’ve never seen her as concerned as yesterday afternoon, when she repeated those three words to me.

Bottom line is, not only do I need to take a break from ballet, but I can’t do pilates either. I’ve been advised to take a few weeks break from all of the classes (well I guess it means my decision was the right one.) I also have been advised to not see the psychologist any more – the one that I’ve only just met!

I meant to write a blog post about finally getting to see a psychologist, but I haven’t had a chance! I’ve long been needing more help with the traumas of my past – and I wasn’t getting it from Dr Headshrinker. It took a long time and much pleading, but finally I was referred to a psychologist who came recommended for doing trauma work, we did up the necessary paperwork to access her* and I made the appointment. And she is just who I need to see – I have a very good feeling about her. She ‘gets’ me. She says she can help me help myself – help me process the traumas and be able to move forward from it. So I came away from my first appointment with her feeling relieved and confident.

(*in my state of Australia, in order to access 5 sessions with a psychologist bulk billed under Medicare per year, you must have a mental health care plan drawn up with your GP. Psychologist sessions are not otherwise covered by Medicare.)

My case manager’s opinion is that it’s a pattern with me – as my anxiety and my inability to cope with the past traumas increase,  I relapse. I can’t not listen to her – she’s known me for so long and she has never been wrong so far, she’s also deeply insightful. I truly respect every single thing she says.

But I personally think that it was just rotten timing! This situation has been a long time developing, and my first psych session just happened to coincide with me no longer being able to appear ‘okay’ to others.  But my case manager has a point. Also, she added, I’m cognitively impaired, and to continue seeing the psychologist in this state would be a waste of the few sessions I can access.

It’s a stalemate on whether I’m not seeing the psychologist again for now, and this is where the ultimatum comes in. I see my case manager again on Wednesday next week, and she wants me to have ‘turned it around’ by then. I guess if I have ‘turned things around’ sufficiently, then I can go on with seeing the psychologist.

If I haven’t?

I don’t know. There are no ‘or elses‘ here, because this isn’t serious yet, this is the heads-up that if I don’t do something NOW, it WILL become serious, fast.

But I guess the ‘or else’ is the fact that I will lose EVERYTHING if I relapse fully. Everything. Including my life. And I cannot do that.

I will not do that. 

I’m fighting. 

I feel awful for letting down people who were so supportive of my progress, who have been cheering me on through all of this.  I’ve let myself down. And I’m scared. Scared, because my ED does have so much power, and it gains that power over my mind so fast. Scared, because I know how deadly this is. Scared because I know my body can’t take another relapse. Scared because I can’t take another hospital experience!

So what does the deja vu have to do with all this?

Last night, turning all these events over in my head, I realised that without a doubt, I’m in a serious position. And that it could go either way. This is a truly life-changing decision – to fight or not. And then I felt that deja vu – such a spooky moment. I can’t remember the rest of what actually happened in that slice of time that I was ‘shown’ ahead of time – but I do know that whatever I decided to do last night affected my ENTIRE LIFE.

So I know what I have to do. And this weekend I’ve been fighting hard to do it. I reached out to some of my close friends, and with their support I’ve had a good day so far with my eating and drinking.

Never let your guard down, when you are fighting an eating disorder. Never give up, either.

Sending courage and strength and hugs to all of you out there – those of you who fight this, or your own personal battles, and those of you who care for someone who does.

While there is life, there is always hope!. 

Image Sources 1, 2, 3, 4, 5,

Starting From Scratch – What Might You Lose To An Eating Disorder?

“The real measure of your wealth is how much you’d be worth if you lost all your money.” ~Unknown [not just money - but everything - EVERYthing.]

During the course of my ED, a lot of things I once had taken for granted were lost. Looking back, I can see how it stripped me of what made me myself – at first subtly, and then, ever faster as I spiralled out of control. Every thing I lost, was also another foot of rope I lost in the tug of war against ED taking full control of me.

One of the first things to go was my cognitive ability. I still struggle with this, but I have enough of it back to enjoy sudoku, to write blogs, and to generally cope day to day. Comparing myself now to how bright I used to be though, really hurts. My TL;DR rant today has been inspired by just another of my ‘brain drains’ – when I completely forget what I was saying, or doing, or what I was reading, etc. It’s an everyday thing for me now, and it’s frustrating.

I first started seeing the effects of starvation on my brain when I was in year 10 at school – so aged about 13 – 14. I’d come from a brilliant year 9 with top marks in everything, being a part of the gifted and talented club that our school created so as to enter us in all the competitions – which was the best experience. I loved the maths and engineering ones especially – so much fun. I’d become passionate about maths and science and also was a voracious bookworm, reading three smaller or two adult-sized novels a day as well as doing extra schoolwork when I could. I was also the happiest I’ve ever been during my school years – I had some really lovely friends and the kids at the school I was then at were accepting, kind, and friendly, despite many of them being rougher kids from tough backgrounds. School was a refuge from home.

Halfway into year 10, things started to lag a bit. Looking back, I see myself gradually withdrawing from people around me. My friends did their best to keep drawing me back out again – which I’m so grateful for – but I was withdrawing into my own self as well, and you can’t physically hunt for someone and pull them back out of themselves. To their credit, they never gave up and I was never alone even in the times I retreated to help the library cover stacks of books or other work rather than hang out with them. They simply drew up chairs and started covering books too.

At first I withdrew into my beloved books, too. Blocked the real world out. But slowly, books made less and less sense too. I had to go back and start again so many times because I’d realise I’d read a few chapters but had no idea what the book was even about. It was like it had literally been seen by my eyes, then marched out of my earholes without having actually passed through my brain.

School work became a lot harder. Of course, year 10 work IS harder – preparing us for advanced maths and science options in year 11, when our senior years began back then. And I needed to know it, because I planned on taking all the science and maths options that I could. But the easiest simplest things started not making much sense to me.

Year 11 algebra was pretty much beyond me, because I didn’t manage to comprehend year 10 trigonometry, so I didn’t have the basics. I got my good marks still, and got B’s average in most year 11 subjects with some A’s, but nothing was retained, by this stage I was simply parroting the information without understanding it very well.

One of my most frightening moments, the moment I look back on and see that academically and cognitively, I lost it, was the first maths 1 class in year 11. Our teacher required us to start the class by drawing a circle on our pages. Just a simple circle, nothing fancy. I sat there, blank. I could not get my head around a circle. She drew one on the board, and I still couldn’t get my head around a circle. Something so simple, and it just did not compute at all. That day, with the maths teacher frustrated at me and me frustrated at myself, shattered my confidence and it was all downhill from there.

I was dancing full time, but the school also required us to keep up with the ‘usual’ year 11 and 12 studies in about half the time, so we went to a local high school and had our own small classes that went long past normal school hours. I had also opted to take Physics by correspondence, because I am crazy. In those days, we rarely used computers, instead sending booklets and worksheets back and forth by mail.   The stress of studying in such little time, of trying to get my brain to work when it felt like heavy, sodden porridge, plus the dancing, the travelling, what was going on at home and the bullying… I don’t know how I survived it to be honest.

As year 11 turned into year 12, I became more and more unable to cope. It was a nightmare. I seriously do not know how I pulled out pretty average to okay marks, because I was not completing so much of the work, it was beyond me. I constantly stressed and fretted, had constant nightmares when I did sleep, usually falling asleep at my desk after 3am.

I did fairly okay on paper  in the academic side of Uni too, but have retained absolutely nothing. We might have been dancing full time still, but there were subjects like Kinesiology, Anatomy, Music, Dance in Education, Dance History, Alignment, and so on. Many of them were hard, most of them were beyond me.

Finally, I got to the point where, after constantly being dizzy and ditzy in classes, actually ending up with a stress fractured big toe from falling out of a pirouette when dizzy, collapsing, and constantly being ‘not quite there’ (dissociating, but I didn’t even know there was such a word at the time let alone what was happening) – I was politely kicked out of the dance performance strand, told to go see a counsellor ‘or something’, and given the entire university to choose from in order to fill in the credits I still needed to graduate. It was the worst time of my life so far – far trumping the bullying, the abuse, the rapes, being homeless – far far more painful.

Because ballet was ALL I had left. I’d lost my mind, I was unable to retreat into my beloved books, my family had rejected me as much as I rejected them, I had no real friends, I’d lost my innocence AGAIN to Wanker, and now, I lost something I had lived, slept, breathed now for most of my life – dancing.

I was done. That was the point I tipped over the edge from having not all that critically  serious an eating disorder even though it had affected my life so badly already – to full blown, deadly, life threatening, no-turning-back GONE to it.

Because I had nothing, nothing left to fight for.

But if I had thought that the losses stopped there, I was wrong.

Since then, I’ve lost pretty much everything I ever worked hard for. Lost my degree, because despite having only half a term’s work left to do, trying hard to keep completing it while inpatient, I ended up having to defer. The ten years to complete the course in were up in 2005. I know I can probably ask for special consideration, but the course is now so far removed from anything I could do with my life now, that it’s pointless. I’m still not cognitively well enough yet to study again anyway.

I lost my ability to volunteer. I had to eventually quit the positions that were too physically taxing, like the Red Cross cafe, the soup van, and the homeless centre kitchen. One of my supervisors later told me she had lied to me about being ‘obsessive compulsive about how her floors were mopped’  and that she actually loathed mopping them, simply because she couldn’t bear to see me doing them and would rather do them herself.  I also found myself having to leave the less physical positions because I couldn’t think well enough to help a cultural arts organisation create a library from their resources, nor could I continue in a mail room when I started doing silly things like writing addresses backwards or twice or in the wrong place, or simply forgetting what I was meant to do with the envelopes. Volunteering had been amazing for my self respect and self esteem, and I felt I’d let everyone down horribly, and was now just a complete sponge on society rather than contributing in some way, however small.

I lost my rights. For over ten years, I didn’t have the basic right to decide if I even wanted to live or die. I couldn’t turn down going to hospital – if I did, or I left, the police were sent to bring me back. My treatment order forbade me from leaving the state without permission. Once I stayed too long up the coast and they cut my money off in order to force me back home.

I lost my financial independence despite having done very well after running away from home without ever before really having access to money, or any money to have access to anyway. From there, I persevered until I had an income,  I taught myself to budget, paid all my bills religiously, even saved up some savings.  I’m still having harsh reminders of the financial situation – today failing my first ever credit check, because I’m still a public trustee client, and they don’t like that. I’ve never had debt, apart from my uni fees. I’ve never had a credit card. Never had an unpaid bill or fine.  Never defaulted on my rent or anything like that – and yet I’m a credit risk, despite being able to show in detail that I CAN pay them back for the phone I was trying to purchase, we had even budgeted for it – because I need a trustee and therefore I’m different and risky.

It was SO humiliating. It reminds me again that I’m only now looking for my first ever paid job, when many of my peers are in senior positions. I’ve never driven a car – not even once. If I want to buy something or have a legitimate expense needing to be covered, I have to submit my request and three different quotes to my trustee, who blathers about and then issues a yay or a nay, very often a “nay” and “you cannot afford this”.  They put just enough money for my groceries and Shalimar in my account weekly, so that I can be driven to the supermarket, helped to buy my food, and driven home to be helped to unpack it.

And I really, really appreciate that help, it just is hard to accept that you are only 34 and being helped by people who usually help the elderly and the severely disabled.  The home and community care team help me still with shopping, housework, and sometimes with transport. Thankfully I no longer need personal care – showering, dressing, medication etc. Without them, I wouldn’t have been able to stay at home, instead ending up most likely in a nursing home for the elderly.

In hospital I lost my dignity, needing to be toileted and bathed and dressed. My body was poked and prodded and stuck like a pin cushion. I had no right to refuse what they put into me, a very violating feeling. Even my output was collected to be measured and tested. My body wasn’t my own – I was forced to carry weight I didn’t want, to save my life, but it still felt horrible to have utterly no choice about it.

Physically, I’ve lost teeth, my hair, my long term health and life expectancy, my bones are severely osteoporotic, I lost the ability at one stage to walk, stand alone, even sit up or hold my own  head up. I’ve lost my strength, my energy, my youth; my looks, my vitality, and much of my respect for myself not to mention the respect of others. And heartbreakingly, I most likely will never be able to have my own babies.

I’ve lost my confidence in many ways, and it keeps getting dented again and again. Just when I think that I might just be starting to be an acceptable human being, somebody says something cruel, or I’m reminded in some way of how ‘behind’ other people I actually am, as  happened with the phone and credit check. I know this is going to happen a lot more as I still have such a long way to go, but at the same time, I’m so very grateful now, for what I still have, and what I am clawing back little bit by little bit.

I’ve been off the involuntary treatment order for a year now. I still risk being put back on it in a split second if I don’t attend my appointments or seem to be struggling, but things are also more negotiable in that I can see my GP every three or four weeks instead of weekly, my case manager sometimes lets me go an extra week without seeing her, etc.

I can catch buses and trains again. I got to a point where I just couldn’t, my legs were too weak to get on and off the buses, and the whole transport thing was exhausting. Not to mention my pure fear of all the people and the fact that people WERE  staring, grimacing at, even spitting at me for being emaciated and therefore ‘disgusting’.

I still struggle to read my beloved books, instead spending more time reading shorter articles and doing sudoku puzzles. I’ve just started to dance again – proper ballet classes and pilates classes, after a year of physio to get myself strong enough to do it. I’ve been working with an employment agency for those who have been out of the workforce for a long time (or never been part of it!) because of illness to get a job, most likely in a library or as a vet assistant. I’ve been going to art groups and will be part of a small exhibition in a few weeks time.

I’ve built up a circle of special friends, and trusted supports, and I am fast learning that people actually do like me for me, and that I don’t have to change in order to be accepted by anyone.  That we are all human, and all have our ups and downs, our good points and our failings.

And I feel like I have more of an actual Future  than I’ve never had. A few  years ago, there was NO future for me. I WAS dying – it was simply a matter of when. So to be here, now – that’s a HUGE reprieve and I thank God, thank the universe, thank everything and everyone every single day. Because I’m so lucky, and I’m so grateful, and life is the best it’s ever been from the day I was born right up to now.

I still battle with depression despite that, which can be frustrating – how can you be the most depressed you have ever been AND the happiest ever? But that’s how depression is – non-reactive depression anyway – it has nothing to do with being happy or contented, or being positive - because I AM largely a very positive person now. It’s more a perfect storm situation – a mix of everything, chemical imbalance, hormones, life situation, stress, etc.

I still endure chronic severe pain and my future in terms of bone strength is up in the air, but I’m in a lot less pain and a lot less ‘trapped in a broken body’ than I was even a year ago – and to be this ‘free’ is simply wonderful. The hour or two that I’m dancing each week, is a time when I somehow manage to step out of this world entirely – not by dissociation – into one where I’m blissfully peacefully content, where none of this has managed to touch me. This is just the beginning for me and ballet, a new beginning.

I know there will be more new beginnings and life taken back by me, as long as I keep hanging on and keep on stepping forward. Each step is tiny, often frustratingly so – and yet essential, important, and by no means inessential.

My message with this post is that our lives are far too high a price to pay for an eating disorder. Not even for it to help us cope through something we simply cannot handle. There isn’t any point being able to cope emotionally with something if you haven’t a body or a life to return to when you have finished coping, is there?

Much of what you lose might not even seem that big a deal at the time. There have been points where I was told I was going to die, and yet my eating disorder was stronger than my will to fight it and live. I certainly didn’t care about losing most of my hair when I was lying in hospital anyway. Who needs to drive, when the furthest you are going in the next six months is in a wheelchair to another appointment in the hospital? Who needs money when there is nothing to buy? Books when you need all your remaining brains to plot how to sabotage yourself further? Friends when you loathe yourself?

Who even needs a life, when it’s not a life worth living?

I am extremely fortunate. That I am even alive today, is described by most of the professionals I’ve seen as a miracle. MOST people do NOT get miracles. Most people are NOT so lucky. I have no idea why I was given this not even second, more like second hundreth, or second thousandth, chance – but the odds of me getting yet another go if I throw this chance away are miniscule.

Thankfully, most of us do NOT die. MANY of us do – but most of us live. And there are consequences that every single one of us who makes it alive through this have to face – for the rest of our lives. What we didn’t care about in the thick of the struggle, might haunt us for the rest of our lives. I know there will be plenty of ways that I’m reminded, daily, that I sold my soul to the devil of an eating disorder in my youth.

I know it’s much easier said than done – there was NO negotiation with my own eating disorder’s demands of me when I was more unwell, and imminent death doesn’t scare something when wiping you out is it’s goal – but if reading what I’ve lost to this means that even one person out there stops and seriously considers what she’s got to lose rather than blindly following the carrot dangling in front of her, then it’s been worthwhile.

Because you may lose your life, but I can promise you, you WILL lose pretty much everything.

What have you lost? What do you stand to lose? 

(featured image source)

Hospital – The Fishbowl. (Trigger Warning)

Following on from the introductory post on my experiences in hospital, I want to share where I spent most of my time.

 

(Image Source)

At the front of the ward is a locked section, well, a locked section within an already locked secure ward! This section has it’s own little common area with three single bedrooms, a seclusion room, shower and toilet. This area is where the most acutely ill patients are kept. Often they are extremely violent. This is where I ended up for many of my admissions, after earning myself a reputation of a serial absconder, and of being unmanageable due to  purging, exercising, hoarding food, self harming and overdoses, etc.

All this is enclosed by shatter proof, soundproof glass. It’s called the HDU (High Dependancy Unit) but I call it the Goldfish Bowl. Because you are on show to the whole world, every undignified played out soundlessly for the whole ward to see. And you can bang on the glass and yell for hours if you care to – nobody will take any notice of you. In there, you cease to be a human being. You become the worst of the worst, not even fit to mix with the rest of the patients in a psych ward.

Often these other patients are scary. They get loud and violent. They will come into your room. Sometimes the nurses will lock you in your own room to make sure you are safe. They are often psychotic, and will scream and rant and rage and throw the heavy foam furniture about like bits of paper. Because they are terminally short staffed, these patients cease to be dangerous at exactly 11pm each night, often before, and don’t become dangerous again until 7am the next morning. You are all locked up by yourselves for those hours – a very scary prospect for me, and strictly against rules but what can they do, three staff, often on their second and sometimes third consecutive shift, to look after 25 patients overnight – it’s impossible. For this reason, being constantly on Constant Obs in later years was a relief – it meant a staff member sat with me 24 hours a day and I felt safer in that way, at least, even though it wasn’t nice being constantly watched.

It was not a nice place to be. In there, you lose everything. The protocol is you can’t have any of your belongings, you wear hospital pyjamas only, to prevent hiding any weapons or having anything that can be used to hurt yourself in anyway.

You can’t have anything to help you pass the time. Books might be thrown, might be used to light a fire. Ditto writing paper. Pens and pencils are out. You can’t have anything to brush your hair or clean your teeth. You can’t use soap to wash your hands, and the water in the toilet is often turned off. It’s locked anyway. You can’t have a cup or water bottle of any kind, there is no tap to drink from anyway.

Your room is stripped bare except for your bed and you aren’t allowed many bedclothes in case they are used to hide things. There is always a nurse in there with you, and hourly you and your belongings are searched.

At meal times, you eat off polystyrene plates, off your lap. Food goes cold quickly, and just doesn’t taste good off polystyrene. You eat with a single soup spoon that’s carefully guarded. It’s messy, especially if it’s something needing to be cut. They tried plastic cutlery, but that’s too dangerous.

For an eating disorders patient, meals are already fraught. Once you get yourself locked up in the HDU, you will wish you were out there again, on table. Your meals will never arrive as they were ordered by the dietician leading to anxiety attacks and attacks from staff who think you somehow caused the wrong meal to come up, or accusations of being a nusicance because you asked for the correct meal because you are TRYING. And then, you will find yourself at meal and snack times, being forgotten, because your nurse has taken the rest of the ED patients to the table and again forgotten that one of hers is in the HDU. You will fight with yourself over whether to let it go – and chance being accused of not trying – or to remind them and be accused of being selfish, because everyone is busy. If you decide to remind them, the process with take at least half an hour, as nothing can be done without consultation from YOUR nurse who is now out of comission for at least the next hour and a half (meal and supervision afterwards) so this necessitates a lot of back and forth and negotiation and mostly a feeling of  ”why do I even bother”.

The toilet is locked, of course, as is the shower. If you want to go, you have to ask permission. This is a process that also takes a lot of time and getting permission from your always hard to find nurse. Then,  you’ll have the nurse watch you, with the door so wide open that the whole ward can often see you do your stuff. Because of how unwell the other patients are, it will often be smeared with stuff. The toilet itself is a stainless steel, seat-less, jail-issue thing that will always be filthy, even though the cleaner comes in several times a day.

You can’t keep this place clean, because the patients are just that unwell and have utterly zero cares about hygiene. In later years, it ceased to matter so much, because I was often restrained in my bed to stop me pulling out the picc line through which I was fed, and being spoon fed and  toileted there (also such a loss of dignity). I was so unable to cease my purging that I was, for months at a time over several admissions, purging from that restrained state – vomiting on myself, the bed and the floor, to the disgust of everyone, and I stank, my room stank. Life stank.

During the months I was locked in the HDU at a time, I felt I became less and less of anything at all. My life was reduced to bare white walls, nothing out the window but the bare walls of the next building and the sky, if you were lucky, I bit of the huge tree that was outside. (I stared at that tree constantly, as if I could somehow wish myself out of there and into it’s branches.)

I forgot what made Fiona who she was. Forgot what she liked, forgot what she didn’t like. Forgot what it was like to be passionate or have interests. Forgot that there was indeed a life beyond all this. More than forgot – stopped believing in it. And if this was what my life was, then I wasn’t interested in fighting for it. All I wanted was to be free from this prison – both the hospital prison, and the prison of my mind and body. When I was on restraints, I’d dissociate a lot, just to ‘not be there’. I began to believe that I’d never left, that I’d been there for one long, never ending period of time, and that the ‘world out there’ was actually just a dream that I kept waking up from.

I had to earn my way out of the HDU and back on the program and apart from the last two admissions when I offered to put on weight and voluntary went in – I never made it out. I would try my hardest, I’d even achieve every goal they set for me (they used to come out of ward rounds and say to me, “If you achieve x, y and z, we will take you out of the HDU onto the general ward.” I would MORE than achieve x, y and z, only to have them then say “you are doing SO WELL that we think it would be risky to shake anything up – we want to keep things just the same, so we are NOT going to let you out of the HDU at all. ” It happened every time and in the end I became so discouraged I didn’t care any more. Being in there just made me feel like a caged animal and confirmed to me that I wasn’t worthy as a human being. It was punishment and I felt I deserved it.

I fought them so hard. I always found it such a war in hospital, between me, the ED and them. I always hoped that just being in there would allow me to let go of the ED and work with them – but it was always a huge battle to get to that place. I’m not proud of the ways I found to sabotage myself, which led to me being locked in the HDU as a matter of the norm.. I wish that I was just able to let go and let them help me. But the ED  got angrier – like a savage beast prodded and poked, and life followed, leading to a classic catch 22 situation – they wanted me to act like a human being but treated me like a caged beast; I wanted to be treated like a human being but acted like the beast.

A huge part of my motivation when I was finally able to fight for myself was just to get out of there. I didn’t feel any different about myself, and I didn’t have any less of the ED screaming at me that I deserved to die. I just couldn’t bear it in that hell. It truly was, to me, like I had been jailed for comitting a crime, was being punished for already punishing myself. So I’d finally realise I couldn’t fight them – and just do it long enough to get the hell out of there as early as possible. As I was a long term patient, I never had any maitenance phrase. I would get to my weight, and bang, out the door same day. I’d hit the big wide world with still no idea or practice on how to keep myself safe and well. I’d also be manic, coming cold turkey off the sedatives they kept me quiet with, and overwhelmed because the world would hit me like the volume was suddenly turned up full bore after silence for so long. I look back and wish they’d actually made me slow down during those times and properly transition between complete imprisonment and the wide open world.

Just thinking of that place gives me the horrors. I never want to go back again. It’s good motivation to stay out (not that it helped me all those years I was in and out of there). I just wonder – if there was more understanding of eating disorders and the power they have over people, would this have happened to me? I wasn’t  doing anything that I did/didn’t do to be ‘bad’, and I already hated myself  that much – punishment on top of the punishment I already put myself through was the last thing I needed. Having this sort of treatment reinforced that there was no hope for me of ever being a decent member of society.

It also exacerbated the PTSD. Having to gain weight would bring my sleeping mind back to life, and I’d be engulfed in the flashbacks and nightmares I’d been trying to block out. I’d wake up in this little prison, finding myself trapped – tied to the bed in my reality now, feeling powerless and alone. I always emerged from these admissions more broken than I went in.

It’s not only myself or others with eating disorders that this post is about – it’s the other people locked in HDUs like this one. Where did people with a mental illness cease to be human beings who are sick, and become less-than beings to be locked away and submitted to such a horrible experience? It really isn’t right at all.

Hospital – General Introduction Trigger Warning

I have wanted to write about my experiences in the hospital system for a while now.  I think it’s very important for people to read about them – because there’s a lot that could be improved, a lot that should never have happened. There have also been a lot of ‘gifts’ – people I’ve met, experiences and insights gained, and the not-at-all-little-fact that I’m alive – here and now. With all that’s happened, I should not be alive. I owe my life to the hospital and the people who work there, and I will be forever grateful to them for this.

There is no way I could ever write about all of it without writing a huge thick novel, because so  much has happened over so many years. I thought it might be helpful to write an introduction post so that all the boring details are gotten out there in the beginning and when I post about my experiences, I don’t have to keep explaining those details quite as much. It also might help to just set the scene a bit, and so this post is really just an overview. There will be more posts in the near future on topics such as – what is an average day like? What are meal times like? What happens in ward rounds? etc – also I will write about experiences that I personally had, that stayed with me. I will endeavor to keep the hospital and the people involved anonymous, although if you live locally to me, you will probably recognize places and even people.

Over a period of approximately fifteen years, I had over 150 hospital admissions – as documented in my hospital files – at what I’ll just call ‘the hospital’ for my eating disorder. (I am sure there must be errors, because that is too high a number even for those years, despite the continual admissions). Most of these were on their eating disorders unit, which is comprised of four to five beds within a 25-bed psychiatric unit that also houses the Geriatrics and the overflow patients  from the other psych wards. It’s a locked ward, meaning bars on windows, very strict security, body and belongings searches, confiscation of items that might be used as a weapon (you would be surprised what could be made into a weapon – desperate people become very resourceful) and the  majority of the patients are there against their will.

I also had admissions to the medical wards for eating disorder complications – including general wards, ICU, CCU, and the infectious diseases ward (as a result of having dangerously low white cell counts). Mostly, the ED  unit kept me there when I was medically unwell. When I was having TPN, all of the nurses learnt how to manage it specifically so they could keep me there instead of sending me to a medical ward. I think it’s because they have decided there is a huge danger of an ED patient on a medical ward being able to engage in ‘tricks’ that might ultimately end their own life, and I’m grateful that they went to all that trouble for me and those who might need TPN in the future.

The ED ward at this hospital treats more acutely ill patients since there are so few beds to go around – those beds are to cater for the entire state, with a population of now approximately 4.6 million people. In our state, there is one other ED unit – a very small private hospital a few suburbs away with approximately 12 beds. They don’t cater for patients who are medically too ill, and they require you to be ‘ready’ to recover – if you aren’t, you are kicked out. I have never been inpatient at that hospital as I can’t afford insurance, I wouldn’t have been able to stay there anyway as I’ve always been too medically ill and too non-compliant up until about 2 years ago.

I always have, and still do, carry a lot of guilt for how much I needed these scant resources. My being there meant that someone else missed out, and it’s part of what motivates me to stay out now – so as not to ruin any more people’s chances of getting help.

These resources however are far too rare, especially for the population they are meant to support. There are states in Australia where this ratio of ED hospital beds to population is even worse. We also have issues like patients not being accepted as they fall outside a catchment area of a certain hospital – you can’t pick and choose which hospital you will go to unless you are going to a private one, and many people just can’t afford that, even public health isn’t free here any more.  WE NEED MORE TREATMENT OPTIONS for people with eating disorders. Desperately so.

I’ve no idea what the average length of stay for patients here is – but they are usually at least a few weeks to months. I know patients who have had over a year’s continuous admission there. My longest was approximately 10 months, my shortest, two weeks. My usual length of admission was 3 months. Many times, I didn’t even have an entire week at home before being readmitted for weight loss. I was on an involuntary treatment order for almost ten years continuously, so I had no choice about being hospitalized, and no choice about my treatment. At one point I tried to take out a Do Not Resuscitate order in the fear that like a friend of mine, I would be resuscitated after a heart attack resulting in badly crushed chest and agony for whatever lifetime I had left, to be told that because I was a mental patient, I wasn’t even permitted that dignity.

This hospital, to it’s credit, has tried it’s best to develop it’s eating disorders program over the years, and since I’ve been there over that time, I’ve noticed the changes. When I first started to be admitted, it was a very lax program.  There was a lot more freedom and not many rules. Groups were pretty non-existant, but there was a more ‘family’-like feel, with the ED unit becoming a safe haven from the world where patients came for support even after discharge, with an unofficial day/drop in program. We were given a lot more responsibility for helping ourselves, even down to prepping and setting up our own nasogastric feeds and putting down our own tubes every night. (Of course this led to sabotage.)

Things these days are far more strict. Nowadays you are strictly controlled for every minute of your day. You eat what they make you eat, you can’t have any special requests. You eat when they make you, for a set amount of time, and you can’t eat at all outside those times.  You sit with the staff or are in group for an hour after every meal, and they do their best to have groups – even if most of them become just watching old Glee DVDs because while the program is great on paper, there isn’t the staffing to carry it out.

You can’t get out of the weight gain either – if you even eat all but just one bite of a meal, you are supplemented for the entire meal. They do force – there is simply no way out. There is a large and well trained security force at this hospital and the staff will call them up to the ward regularly to restrain people.

They’ve become more knowledgeable about the various tricks and ways to sabotage and every loophole possible has been closed off.  In terms of identifying it’s weaknesses and doing it’s best to rectify them, this hospital has come a long way.

After years of continual admissions, I was allocated a case manager at our mental health clinic, separate from the hospital campus. Instead of going to the weekly ED clinics to be weighed and see the dietician etc – I would see my case manager/s (sometimes I had two of them) and a consultant psychiatrist. I preferred this. The focus was now on trying to give me a better quality of life with the time I had left – and to treat me in the community rather than always inpatient. I still spent as much time inpatient, but had more support in between – all week instead of once weekly.

As my health deteriorated I really needed the continual support as I became unable to care for myself a lot of the time. I did come very close to needing to be institutionalized in a  nursing home or similar and I’m so glad that didn’t happen. I’m especially grateful to  the home and community care team in my city who for years have helped me be able to stay at home by helping me with self care, shopping, cleaning, etc. If I’d been institutionalized I probably would only have gotten sicker and inevitably died.

Two years ago, I finally was able to put on a bit more weight and to keep myself there, enough to stay out. I am now still a community patient with the same team as I’ve had for admissions – I just don’t need to be admitted any more. Hopefully over time, I will need this team less too. In fact, I wish to be independent and responsible for myself some day.  I never want to go back there again.

However, if I do – you know what to get for me: (and you would win the internets and my heart if it was Shalimar in there!)

(Image Source)

I hope this hasn’t been too boring – please let me know if there is anything I can improve. There will be more – hopefully less boring – soon.

More than I can chew..

Just to say I haven’t gone AWOL, and I am working on my hospital post/s. How do you fit fifteen years of pretty much living at the hospital more than in your own home, into a blog? How do you condense all that down so that it’s not boring, not overly long, not too hard to take? Where do you even start?

I’m writing – I’ve written heaps already, but it’s going to be a LOT to read, even broken up into installments. These are the hardest years of my life – harder than the abuse that broke me in that hell hole I called ‘home’ as a child – because I was trapped in that hospital with my demons, and my worst nightmares coming true. Fighting both myself, and those who fought me. Fighting mostly to die, and begging them to just let me do so, just let me die and stop tormenting me.

I’m very grateful they never gave up on me, I owe them my life today. Some of them have said to me they still aren’t sure it was the right thing to do – keeping me alive even when it seemed often that it was crueller than the dying would have been – but I’m here, and I’ve been giving another chance to live. That’s a gift very few would ever have. But I am traumatised from my experiences, and often it seemed that I came out of there a much more broken person than I went in.

I won’t be publishing these accounts tonight, or even tomorrow most likely, but they are definitely on their way – thank you for your patience.

In the meantime, Icanhascheezburger is more your bet for pics like the one below