Tag Archives: treatment

Hospital

I have not been writing, I apologise. I’m currently in hospital. There is a lot to say, but I’m not able just yet. I’m increasing my medication, starting yesterday. Migraines, naseau, dizziness, blurred vision, tremors, muscle spasms, hot and cold sweats, (more) sleep disturbances. I’m exhausted already, and this is just the beginning.

I will write more when I can.

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Eating disorders & the treatment battle

The last week, there has been a lot of talk surrounding eating disorders and treatment in the blogs that I follow. Last week, when I took my letter to register with disability services at university for the year, my advisor read through the listed diagnoses. “Depression, insomnia, OCD, PTSD, EDNOS – how long have you had an eating disorder for?”. It’s a difficult question. Immediately I spit out “oh, I don’t have an eating disorder anymore. It must just still be listed on my file”. I don’t think of myself as having an eating disorder – god no. But taking a step back – thinking about my behaviours in terms of symptoms on a diagnostic check list… I suppose I do fill the criterion. It’s just so much easier to not think about.

Eating disorders are insidious. Despite having been weight restored for almost four years, I still sometimes feel the tantalising pull of my eating disorder. It’s not something that I feel is important – at least not at this point in time – there are bigger struggles to be fought.

It does scare me, however, how ingrained into my life this has become. There’s nothing strange or shocking to me about self induced vomiting, ingesting poisons to aid purging, going days without eating. My electrolytes are regularly tested as abnormal, my heart skips and starts and I shrug it off as nothing. Over the years I’ve watched perhaps fifteen – twenty friends that I’ve made, in and out of hospital, die to these diseases. The first few were devastating – and the lives lost are still tragic, of course, but it doesn’t terrify me to hear that another one of us has fallen, like it once did (like it should).

One in five is a huge mortality rate for any illness – and is shocking for a preventable, mental illness. The Butterfly Foundation also reports that those with anorexia nervosa are 32x more likely to suicide than their healthy counterparts. It’s a terrifying thought. With such devastating morbidity (almost one in four young women) and mortality rates, one would think that there would be effective national and international preventative campaigns, early intervention treatment, and widespread intensive specialised treatment for severe eating disorders.

But there’s not. I’m lucky enough to have private health insurance and access to eating disorder units in private hospitals – but not everyone is. I know without a doubt that without the hospitalisations and interventions I was exposed to from ages 13-19, I would be dead. Many times I showed up at the door of the emergency department of my local hospital, chest pains, aching head and shaking like a leaf – and they would give me a few hours on fluids and potassium, then discharge me. Without ongoing care in the private sector – I don’t doubt for a second that I would have been one of those girls who dies suddenly – her heart stopping in her sleep.

Recently, one of my friends was admitted to a public hospital over a weekend and discharged on Monday on the grounds of not being sick enough – despite plummeting blood sugar and fainting on her way out of the unit. You can read more about her story here – but what I really want to share with you is the petition that she has created regarding eating disorder services in our state. Despite the growing prevalence of eating disorders, we have two acute inpatient beds dedicated to eating disorders, statewide. It’s simply not good enough. To get one of these beds – which are usually reserved for severe anorexia (despite it not being the only eating disorder – which is a thought for a whole other post) – being on your death bed is practically a requirement. Lives are being lost because there isn’t enough available treatment, and they don’t need to be. Please sign, and share, and talk about this.

I remember being told in one of my first hospitalisations for anorexia nervosa that out of each five people with the illness – one would die, one would recover, and three would live with an eating disorder – in whatever shape or form, for the rest of their lives. To be entirely honest I don’t see the eating disorder voice ever leaving my head – it planted itself early and it has dictated so much of my self development. I have learnt to live with it, though – I can eat relatively well and maintain my weight , coax food into my mouth despite my head’s protests against me. Yes, I know people who have fully recovered. But they are definitely the minority. But it’s a terrifying thought that I know of more people who have died as a result of their eating disorder than I do people who have fully recovered, and maintained that recovery.

It scares me that even this level of ‘recovery’ is not available to everyone. It’s taken years of intensive therapy and many hospitalisations to get me to this level of medical and psychological stability. It shouldn’t be a challenge to reach a vague semblance of recovery. Eating disorders are incredibly difficult and exhausting to fight – and those suffering shouldn’t have to fight not only for their body and their lives, but their treatment as well. An eating disorder is already living a war inside one’s head. It’s not fair, and it’s not okay. While I am absolutely aware of how lucky I am to live the life that I do in the world that I do, it scares me to think that in terms of treatment – despite how inconsistent, often useless and varied mine has been – I am one of the lucky ones.

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Monday

Apologies, another non-coherent post. I should wait until I’ve had some sleep to write about this, but I want to document everything I can remember, before I lose pieces.

9:30am Monday, the phone rings. A lady from the local CAT team asking whether I was at home at the moment (yes) – “good, we’re at the top of your driveway. We’ll be down soon”. I sat with these two women who I had never met before for a total of seven minutes while they ticked off the questions on their list. Their notes, which I would read the next day, read: suicidal ideation, but no immediate plans. Restarting medication. Recent history of serious suicide attempts and has been to the Gap four times in the last week. Not sleeping or eating, has lost weight. Recommend follow up with community team, has appointment with psychologist 22/3/12.

They left after assuring me that they would call in a couple of hours and someone would be out to see me again that afternoon. Fine, whatever. I don’t really want to see anyone, but if it’s the condition of staying out of hospital, fine. I went back to bed. An hour and a half later the doorbell rings again. I start walking to the door and see a police officer through the side window, making his way around the back of my house. Immediately I know what has happened, and that his role is to make sure I can’t escape by a different door. I take a deep breath and open the front door. There are two different women, one with a piece of paper in her hand, and another two male police officers. None of who I have ever seen before. “We just need to speak to you for a minute”. You’ve already got a schedule in your hand, it doesn’t seem like speaking is what you’re interested in at all. Drawing on rationality from somewhere, I figured it was best not to argue and reminded myself that the only way to get the schedule revoked is to see a doctor at the hospital. I pulled on a pair of jeans, put a couple of textbooks in a bag, walked out the front door and lit a cigarette. Despite agreeing to go to the hospital and be reviewed, the police held me by the shoulder as we walked up my driveway to their car, firmly enough that a bruise has started to develop today.

One we got to emergency, I was sat in the same interview room as Thursday night, the police once again said “good luck”, and left. One of the women from the CAT team sat in the room with me along with a nurse. Cue waiting a few hours. Eventually someone came and took bloods and observations, and I was told that there were no doctors to see me. I was also told at this stage that the woman from the CAT team who had initially scheduled me wasn’t a psychiatrist, or a doctor at all. I started asking how it is reasonable for someone who has never met me to write a schedule before even stepping through my front door. Before asking me any questions. Before knowing what I look like. I was told that I was being admitted to PECU and would have to wait there to see a doctor. They told me that they had spoken to my psychologist and that she was worried about me. They didn’t mention at this stage that it had been five days since they had spoken to her and that, while worried, she had expressly told them that scheduling me was a terrible idea and would undermine the minimal trust I have developed.

Midnight, a psych registrar came to see me. I was hysterical by this stage, screaming about how I didn’t need to be there and that according to the mental health act I have a right to the least restrictive treatment possible and that this certainly wasn’t that. She explained that I had been scheduled (by a stranger, who isn’t a doctor) on the grounds that last week, I was scheduled due to being at risk of hurting myself. Sorry, what? I’ve been scheduled again, for the same reasons, without any new information, regardless of the fact that I have had no contact with any mental health professionals and that I was deemed fine last Thursday, the original schedule was revoked, and I was discharged? Apparently, yes. The psych registrar, being a student, refused to sign anything to say that I could leave.

The original schedule – last Thursday – was written on the basis of the assessment of a new psychiatrist – who had never met me before, knew nothing about my history or ability to self manage and refused to take into account anything I had to say about my support system or coping strategies. My already limited faith in mental health professionals has reached an all time low.

So, I ended up spending the night in the most secure psychiatric unit in the state. One of five extremely sought after beds that would have been much better put to use for someone who needed it, rather than me, sitting on the floor studying and doing a puzzle of rainbow lorikeets. There were four men in the unit with me. The nurses station was around a corner from my room, not visible if I needed them. The men were all loud, with violent psychoses and one continued to knock on my door, open it, and stare at me. They also didn’t stock any of my medications (despite their feeble reasoning for scheduling me changing from being at risk to needing to be supervised while resuming medication).

My mum called the nurses and psych registrar, crying that it has taken so long to get me to the stage that I am able to ask for help when I need it, and that given my previous experiences with the public mental health system, that scheduling me and locking me up was the absolute worst thing they could do – that in one night they could undo years of progress. She was right. The last thing I have any intention of doing right now is engaging with any mental health professionals.

After much complaining this morning, I was allowed to see a psychiatrist. The head of the unit. He was surprised and shocked to hear that despite being scheduled twice and having multiple daily contacts with the community team, he was the first psychiatrist that had actually seen me. He agreed that, if stretched, Thursday’s schedule could be understandable, but that I had been assessed as being fine and had been discharged. He agreed that the events of yesterday and last night were completely unnecessary and apologised, telling me that it was the first he had heard of this. He’s given me the phone numbers of directors to address complaints to, and expressed his hope that the last week hasn’t completely shredded any hope of me accessing mental health services in the future.

The events of the last week have been absolutely ridiculous. I realise at the moment I’m still caught up in this, haven’t slept for a few days and am desperately frustrated by the whole system. In the future I will definitely not be answering any phone calls from numbers I don’t know, or opening the door to strangers. I’m not at all interested in finding a new psychiatrist, and will absolutely be incredibly hesitant to reach out if I need more support. I know that I have a chronic mental illness. I know that I need medication. I know that I should have ongoing psychological intervention, but I’m not sure I’m willing to if this is the cost.

What worries me, is how long can they keep doing this? How often can they show up on my doorstep? If I answer the door, I get scheduled. If I don’t, I’m being ‘non compliant’, and get scheduled. If I speak too little I am too contemplative, too much and I am being difficult. I am an adult, for god’s sake. I study full time, work two jobs and volunteer. I’ve had depression since I was a child and have been in treatment since age thirteen. I know how to look after myself. I know how to manage my medication. I know who to talk to if I need to (though I feel that has now been compromised, after just re-building that trust). For anyone, involuntary hospitalisation is an incredibly disempowering experience – and it’s straight up not helpful for me, for someone with my history. I don’t understand how any reasonable person with even minimal psychological education would think that this is a good idea.

Last week I spoke on a panel at a statewide health training development day, about seclusion in locked units. The girl next to me (who had been unnecessarily involuntarily treated) said something that has been echoing in my head the last twenty four hours:
“A psychiatric unit is like a prison. And you don’t have to commit a crime to go to prison, you just have to look like you have.”

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Doctor

I saw a doctor today.

The conversation was an hour and a half of (her) “would you rather go into a public or a private hospital?” (me) “I’m not going into hospital”. Repeat. Forget where I am and stare out the window, come back to her holding her hands up in my line of vision and looking at me, concerned. “I’ve only met you today, but I’m very worried, and so is your psychologist”.

I managed not to get hysterical and not to get up and walk out (because god knows that never ends well) and finally talked her down to letting me go home. Catch being the local CAT team coming to see me three times a day indefinitely for the moment. She gave me scripts to be dispensed a week at a time (having to go to the pharmacy every week? Fuck off) with strict instructions and told me that both her and my psychologist will be in contact daily.

I feel like I’m being backed into a corner, and I don’t do well with that at all. I’m exhausted from the time I spent outside of my bedroom and the last thing I want to do is deal with the CAT team when they show up. I’m going to curl up and try to get some sleep before it gets dark out.

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Disappearing

I hate writing this. I’m not good at all at facing up to myself when I’m not okay. My psychologist’s secretary called me three times yesterday, trying to reschedule appointments around so that I could see her – all of which I declined. “I’ll be at university all day tomorrow, sorry”. I have no classes on Thursdays. The day was spent lying in bed, trying to will myself to get up and brush my teeth. It hasn’t yet happened.

Death is everywhere, my head keeps spinning. My eyes stare through whatever I should be focusing on. I’m losing time again in ways I thought I’d surpassed. I should go to my lectures. I should find a doctor. I should make an appointment, and attend. All these things feel more than impossible. I should get back on medication – but even if I do, the next (at least) three months won’t show any effect. Three months is a long time when I’m feeling like this. Completely empty, punctuated by desperate moments of the sensation that I need to rip myself out of my body.

The fog has settled. I try to be all about empowerment and hopefulness, but the words are blurring on my laptop screen. Piece by piece the world, my body and mind move further out of my grasp. Right now, I just want to disappear.

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