I Wish I Had Broken My Leg

“I wish I had just broken my leg.” She told me, as we sat in together on the cracked and threadbare sofa in the psychiatric ward. “My brother-in-law broke his leg a few months back. Stupid motorcycle accident. His fault, by the way. He was in hospital for less than 24 hours. The entire family descended. Brought him cards and presents. Cleaned the house. Cooked him meals…I have been sick for months. I have been in hospital for weeks. Not a single person has visited me, cooked meals for my family, babysat my kids, sent me a card, or even acknowledged our trauma. I guess people understand physical pain more than mental pain…Why couldn’t I have just broken my damn leg?”

I empathise and understand her story. I believe this is the unfortunate, frustrating, and upsetting case for many – if not most – individuals hospitalised for psychiatric reasons. But I don’t necessarily agree with her point.

Because, come on, who doesn’t understand mental pain.

Everyone in the world has undergone some form of mental pain. While, obviously, the entire population doesn’t suffer from diagnosable mental illness, I refuse to believe that ANYONE sails through life without feeling some degree of emotional turmoil – whether it be loneliness, heartbreak, fear, or sadness. Turn your radio on. I guarantee that 90% of the songs given airtime detail emotional states, both positive and negative. Artists don’t sell albums filled with songs about their broken legs.  It’s all about broken hearts.

It’s not lack of understanding. It’s discrimination and stigma.

I have two chronic illnesses that I deal with every day. Both offer their own “special” challenges. But I often think to myself that if I were to play favourites, I would prefer my autoimmune disease to my mental illness.

Don’t get me wrong. My autoimmune disease is a giant pain. Literally. I am so sick of explaining it to people. To having this rare illness that no one, not even the so called professionals have heard of. To having to read every single ingredient with a fine tooth comb. Of irritating the restaurant staff with my paranoid questioning. Of hurling in the car park afterwards anyway. Of indescribable pain and pills. Of fevers and fatigue and the kind of bone ache that makes you want to cry. Of highly unpleasant tests and procedures. Of hearing that my blood eosinophil level is four times the normal limit. And that’s an improvement. Of being scared to eat new foods. Of not leaving the house without a vomit bag. Of being threatened with steroids and hardcore immunosuppresants that have serious side effects. Of being sick.

But, you know, people respect it.

If I throw up or have an allergic reaction or go to bed with fevers and sweats, people are generally sympathetic. If I can’t go to a social occasion because I am physically unwell, people are cool with it. “Get well!” They say. “Rest up!” They say.

But if I become mentally unwell, people (with exception, of course, to the few of my closest and most wonderful loved ones) don’t tell me to “Get well” or “Rest up”. I am encouraged to pull myself together. Keep my chin up. Not feel sorry for myself. Think of people who have worse problems.

If Physical Illness Were Treated The Same As Mental Illness: Image from: http://imgur.com/CWFTYoV

If Physical Illness Were Treated The Same As Mental Illness: Image from: http://imgur.com/CWFTYoV

Like mental experience doesn’t count.

Talk about double standards.

Those of us with mental illness are somehow expected to negate our emotional experience, while validating the emotional experiences of others through expected social interaction. We are not allowed to be clinically depressed, manic, or psychotic. But we must listen and empathise with those who are stressed, tired, involved in some sort of altercation, lovesick, feeling guilty, feeling happy, etc etc. Of course, if we want to be sad after a break up, or a death, or a job loss we can. But only for a socially acceptable amount of time, and only to a socially acceptable degree.

In my ideal world my mental illness would be treated with the same respect as my physical illness. And in my ideal world suicidal individuals would receive the help they need, and those who self harmed wouldn’t fear seeking medical assistance. Funds would be issued to psychiatric hospitals. Mental illness wouldn’t be viewed as something only the weak or dangerous succumb to. When I was younger, I  wouldn’t have hid my illness for months because I was scared of what people would say.

As time goes on, the less and less I seem to care about what people think of my mental illness.  In the famous words of Dr. Suess “Those who matter don’t mind. And those who mind don’t matter.” My experiences have weeded out the people who don’t matter. The people who have a problem with the fact that I have an illness I did not choose to suffer from (and I loath to use this term, as I do feel there are positive aspects of mental illness as well as negative). But I also know that I am fortunate, and possibly somewhat of an exception. I know who my true supporters are. My family and close friends are exceptional. Many others struggling with mental illness don’t have this kind of back up. I’m one of the lucky ones.

But sometimes I sit back and wonder how many people I would have lost if I had broken my leg instead.

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In Hospital…or In Hiding?

It’s funny, because although no one would ever question a hospitalisation for physical illness, inpatient treatment for mental illness – and for that matter rehab for drug/alcohol addiction – can often come under scrutiny. There is a school of thought that while hospitalisation may be beneficial in the short term, at the end of the day us crazies or drug addicts have to return to the real world, stop hiding out, and deal with the problem.

And yeah this is true. I get that. I have little doubt that there are people out there who, particularly in the case of mental illness, prefer being in hospital to being at home. I met a few. They were basically homeless and hospital offered them a sanctuary. In hospital you are freed from responsibilities. You don’t have to work. You get your meals cooked for you. You get a bed and someone changes your sheets and cleans the toilet. Just like with jail, where offenders break parole to get back inside, institutionalisation is a real thing, and a real problem for some people.

But, you’ve got to understand, when you are in hospital you lose your basic rights. Privacy for starters. Ever tried going to the toilet with a nurse watching you? Had to point out the diagram (on a seven point scale, with one being “you’re never gonna pass those rocks” and seven being “basically a puddle of brown water”) that best illustrates your latest bowel movement? Had absolutely no choice as to what instruments are poked into your various orafices? Whether you are hospitalised for physical reasons or mental reasons you become property of the medical system. And that ain’t fun.

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While you are in hospital you have to put up with a lot of shit. Sharing rooms with people who snore or basically don’t understand what a toilet flush is. Eating reconstituted crap for dinner. Other people’s noisy visitors. People stealing the food you store in the patient fridge. Getting no choice as to what to watch on TV. Only getting to see your loved ones at certain times of the day. Having your clothes and possessions confiscated.

If all that is better than being at home, everyday life has got to be pretty damn hard. The two times I was hospitalised because I ASKED to be hospitalised, life WAS extremely hard. Both times I fought and fought for months, eventually realised that I was going to get extremely unwell or possibly do some damage to myself, and asked for inpatient treatment. It was a last ditch effort. It didn’t occur to me that I could be hiding from life. I just wanted to get better, and hospitalisation was my final option, so I COULD get back to my life.

For each of my hospitalisations, whether for physical or mental reasons, I have been admitted because I was not well enough to cope without 24/7 care, and I was released when I was well enough to care for myself. Whether I was an inpatient for bipolar disorder, the delivery of a newborn, ovarian torsion, surgery, or my autoimmune disease is irrelevant. Whether I stayed for 24 hours of nearly half a year is irrelevant. Each of those times I needed care. I received it. Then I went home. Most of those times I had little choice. All of those times I did not want to be in hospital, and left as soon as I was medically fit.

For each of my hospitalisations, whether for physical or mental reasons, I have also had to go back into the real world, learn to dress my wounds by myself, remember to take my medication, stop lying in bed all day, and continue my recovery on my own. I knew this and I accepted this. And for each of those occasions I was practically begging my doctors to be released.

But this is my personal experience, and I know everyone is different. I do understand where people are coming from when they question the value of hospitalisation, in particular long term hospitalisation. It is not a natural environment. It isn’t an ideal situation.

However, hospitalisation for any illness is less than ideal. For patient comfort, to retain some semblance of a normal life, and, yes, due to the strain on the health system, outpatient treatment for all illnesses is always preferred. But sometimes people need more than outpatient treatment. And the choice (or the un-choice) of being admitted into a psychiatric facility, or going into rehab to kick your drug habit, should be respected in the same manner as physical hospitalisations are.

While I was in the mother and baby unit, I voiced these issues to a nurse. I told her that I was worried that people would think I was just “hiding” from the real world. I didn’t want people to think less of me for receiving inpatient psychiatric care.

She just laughed and told me “Rachael. You’re not in Club Med. You’re in hospital.  You’re REALLY REALLY sick, and we are helping you get better. You NEED to be here. Just like you would NEED to be in hospital if you had appendicitis. And they are not going to let you go until we know you will be safe.”

For me, personally, hospitalisation, being torn away from my family, giving up my rights and freedom, and being subject to unpleasant tests and experiences is pretty high on my list of Things I Like To Avoid. But in saying that, despite my complaining, my hospitalisations for mental illness have saved my life. And for that I will be ever thankful.

What is your opinion of psychiatric hospitalisations?

Letter To Myself: On 2014

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Hey there, chick.

So it’s December, and at the closing of a year we like to do that thing where we reflect on what we have done, the achievements we have made, all the awesome stuff we did in 2014. You know the thing. Everyone does it.

But the thing is, 2014 wasn’t an awesome year. It wasn’t even quarter to an awesome year. It was downright miserable.

I know you had all these plans for 2014. You were going to start your PhD, you had been offered a scholarship that only 10 other university students received. You were going to present your research findings at a big interstate conference. After all these years of struggling you were finally making some money. You were going to have a baby. Or at least have fun trying. You were going to look at building a house. Everything seemed to be going right. 2014 was going to be your year.

Well, that didn’t happen.

I know that you look back, and you try, but you can’t see anything particularly positive about 2014. I mean, yeah, you’re alive. And yeah, the rest of your family is healthy. But everyone around you seems to be going on fancy holidays (or even unfancy holidays), building houses, having babies, getting promotions, actually being able to eat out at new restaurants without having to come home to barf. Living their lives, basically. And you’re sitting here now, typing in bed, with a fever, a queasy stomach, and a new script for Lithium, just like you have been for the past 11 months.

But you see, I think you’re looking at it all wrong.

Yeah. It was a shit year. But that doesn’t mean it was wasted.

You see, you learned a lot this year. You learned how to treat your body and your mind, and what happens if you ignore your health. You learned to put yourself first. You learned what changes are necessary for recovery. You learned what you are allergic to. You learned what medication and treatments work for you – and which ones don’t. You learned about your diagnoses. You learned the value of health. You learned who your true supporters are. You learned that your marriage can make it through the toughest of times, and you can still laugh together. You learned how resilient and strong your son is. You learned that stigma is still ever present, and this fuelled your passion to pursue stigma reduction research . But most importantly, you learned that YOU CAN DO IT. You can get through it. You can survive. Because you did.

You’ve come a long way, baby. Less than six months ago you were in a locked ward, periodically being shocked (as in electroshocked…although I’m sure you witnessed various shocking events as well. Actually, looking back. YOU were probably the one instigating the shocking events) and medicated. You were hallucinating. You couldn’t keep down, like, ANYTHING. You were being fed cans of formula. Dude, you could barely even walk. You were so sick.

And now, look! You can walk. You’re even exercising. You’ve withdrawn from fifteen of the seventeen medications that you were put on – a feat which is pretty damn amazing in so little time. Yeah, you have the odd vomit attack, but you can eat a whole lot more than cans of formula, chicken and rice. You’ve lost nearly 6kgs of your medication weight gain in the last three weeks.

And as for the other stuff…chill. You’ll get there. Stop trying to DO everything and BE everything when you’re barely out of hospital and still dealing with chronic illness. Give yourself a little breathing room.

The house? It will happen. You know you are an expert at making things happen. It will just take more time than expected. The baby? Relax! You’re 28 years old, the biological clock does not have to start ticking yet. So what if your kids have a big age gap? That’s life. And it totally saves on daycare fees (and quite possibly, sanity). The PhD? You’ll go back in January and it will work out or it won’t. If it doesn’t, if you are too unwell, you can ALWAYS go back to it in a few years time. You could work somewhere. Or you could become an awesome stay at home mum. It’ll work out. And however it works out will be for the best.

So cut yourself some slack. It was a crap year for sure. But you have picked yourself up, dusted yourself off and are ready to try again. And that perseverance, that determination, that positive attitude that I know you have at least SOME of the time. That’s what counts.

Life isn’t a competition, and it isn’t a race. You’ll get there, chick. It’s just been one helluva set back. But don’t forget –  EVERYBODY has their struggles.

2014 isn’t a year that should be commiserated. 2014 is a year that should be celebrated. Because you did it. We all did.


H

The Place I Chose To Die

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The other day we were driving back from my Immunology appointment at our local hospital , the same hospital where I was incarcerated for nine long weeks in The Dungeon. Anyway, we passed this little motel, the kind of establishment that is a mix between being super twee and super dodgy, and suddenly this chill spread through my body. I remembered the motel. But I couldn’t think of why.

I started to rack my brain for information. I was sure I had never stayed there. I mean, why would I want to stay in a slightly dodgy motel situated on a major road, in a slightly dodgy area of town, in my own city? I didn’t know anyone who had stayed there. I couldn’t recall ever visiting it for whatever reason. Then suddenly I broke through the ECT induced memory loss and the reason hit me like a tonne of bricks.

Of course. I thought. That was the place I chose to die.

You see, when I was admitted to the Dungeon I was suicidal. These feelings got worse and worse as time progressed. None of my meds were being absorbed due to the pesky autoimmune disease. Things were going rapidly downhill. I heard voices which told me to kill myself. I began to see people who followed me around and continually tried to convince me that my loved ones would be better off without me. That I was a burden. That if I REALLY wanted to help people I should get rid of the problem. Me.

Of course, when I expressed this to the medical staff they told me that the voices were wrong. But those voices…”The People” just used to ask me “Who ya gonna believe, Rachael? The doctor who has known you for five minutes? Or us, who have been with you for most of your life, know your intricacies and your family? We WANT to help you. Let us help you” These “people” were twisted but somehow they always made sense. And so they kind of grabbed hold of me.

So I began to make a plan. I managed to hack into the hospital university’s wi-fi through my own university. I searched the net and chose a place, this particular motel, to die. I decided how to do it. I had cash, a credit card, and a bus card. I was a voluntary patient on an open ward. I knew I could walk out at any moment and just never return.

Somehow, and I don’t recall how, around this time the doctors twigged that I was losing grip. I was placed on one-to-one supervision, and much to my frustration at the time, my plan was foiled. Thank god.

I find it very awkward to write about this. I feel an intense shame that I even THOUGHT about killing myself – much less making an elaborate plan. I feel like someone reading this is going to shout out “See! Unfit mother! Disgrace to society!” This is such a difficult topic to talk about.

Suicide is such a stigmatised issue. I mean, God, it’s a HORRIBLE issue. There’s no doubt about it. But it’s real. And it should be talked about.

The leading cause of death in Australians aged 15 to 44 is suicide. And, you know, that’s just looking at “successful” suicides (and wow, I hate that term). For every death around 30 people attempt to end their lives. This is MASSIVE issue. (see Lifeline for more horrifying statistics https://www.lifeline.org.au/About-Lifeline/Media-Centre/Suicide-Statistics-in-Australia/Suicide-Statistics)

But we don’t like to talk about it, because those who kill themselves, or try to kill themselves are selfish. They are weak willed. People who attempt suicide are looking for attention. They are all sorts of negative things that  definitely do not encourage those struggling with suicidality to seek help.

Let me just make something clear. When I was meticulously plotting my own death in hospital I was not looking for attention. Quite frankly, that was the last thing I wanted. Also logic doesn’t come into it when you are suicidal. Although it is true that “suicide is a permanent solution to a temporary problem”, in the depths of despair you don’t think that way. All of your thoughts become warped. I truly believed it was my best option, and would be kindest to those I loved. Obviously, I was also, and this is really important, very very sick.

People who are well generally do not want to kill themselves. There is this thing called human survival instinct. Against the odds, humans want to survive. That’s why people fight and fight through terrible adversity and illness. We WANT to live.

People who decide that the best option for them is suicide are generally very unwell and urgently need help. I truly believe that if the issue wasn’t so stigmatised, people may feel more able to ask for help when they need it, and perhaps unnecessary deaths could be prevented.

While I was in hospital I was afraid to tell the staff the extent of my suicidality. I was scared to tell them because the last time I felt suicidal I presented to the emergency department and was seen by a bored psychiatrist who said to me “You have a roof over your head. You have a husband. You have a baby. Why would you want to kill yourself?”

Yeah that made me feel great.

This type of experience, which is unfortunately, so very common for people with suicidal thoughts, just encourages stigma, and perpetuates the cycle. Different doctor, different place, but I was still scared of talking about how I felt.

I was really lucky though. I got the help I needed. I had a hospital keep me safe. Many other people aren’t this lucky. There are so many deaths out there that could be prevented.

But still, despite my feelings on stigma, I feel the shame. This is not something I will ever discuss, even with those closest to me. It feels like a dirty aspect of my life that I wish I could change, and this post feels like a confession.

I hope that one day I will be able to accept myself, and my experiences. I hope that I will learn to stop the self stigma. I hope that one day society will be able to talk about the issue that is killing so many people.

Amber and The Allergy Test

A few months ago I visited the immunology department of our local hospital to get have some allergy testing done. Oesinophilic Gastroentoritis is often associated with food allergies, so one of the first steps with immunology was to isolate my irritants.

The nurse told me what each prick was for as she worked. When she came to “Dog” I almost had a heart attack.

“Oh god! I hope I’m not to allergic to dogs!” I told her. “I could never get rid of my Monsieur bark-a-lot!”

“Monsiour-bark-a-lot! That’s quite a name!” She said, carefully dropping a tiny drop of what was presumably Essence of Dog Dander on to my prick.

“He lives up to it.”

Then I had to go and sit in the hallway to wait for the results.

A beautiful young woman, who was pretty much the splitting image of Isla Fisher, sat down next beside me. Suddenly she  turned to me saying “Nice arm! Been pricked?”

“How could you tell?” I joked. We both laughed and then started talking.

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“Last time I had that done I went into anaphylactic shock and was rushed down to the ER.” she told me casually.

“Holy crap!”

“Yeah…I almost died that day. They had to get the paddles out and everything” she gestured towards her chest. “They don’t prick me anymore.”

“I should think not!” I exclaimed. “That’s terrible!”

“It’s life.” she said, giving me a smile. ” I have this really rare condition where I’m allergic to everything. Like, literally, EVERYTHING. Do you have many allergies?”

“Not sure.” I told her. Well allegedly peanuts according to my bloods. Which is kind of weird as I have never had any trouble eating Snickers bars…But I can’t eat gluten or pineapple. I have this rare autoimmune disease so they want to check things out.”

“Oh! I’m a pastry chef and make loads of gluten free products for people”. she told me.

And we started to talk. She was 28, like me, with a sunny disposition, despite the serious nature of her health. She had just moved to our city from Sydney. She was engaged and hoped to have a baby when her health was more stable, as she had just found out she had ovaries. This isn’t kind of a metaphorical way of suggesting she was clucky. She literally had just found out she had ovaries. From birth she was told she would never be able to have children. A recent surgical investigation showed the pesky ovaries “hiding”. Hiding where, I’m not quite sure.  It was all very intriguing.

I told her about my year, she told me about hers. We empathised on the awkward moments we’d had running from family events and restaurants to vomit. We talked about the difficulties of having a rare and “invisible illness.” We talked about how annoying it was to feel sick the time. How it had impacted our lives and our mental health.

She told me that she had to come to the hospital every week for the next six months. It was part of some experimental drug trial. And because of her tendency for bad allergic reactions she needed to stay at the hospital for a certain period of time after the drug administration.

“Jeez..that must eat into your time!” I said. “I’m lucky if I don’t spend half a day in this hell hole every time I come in. And that’s just for an appointment”

“Well, you know, my social calendar is PACKED right now!” she joked, giving me a wry smile. “I’m sorry if I’m bothering you, I just like to talk to people. My fiancee is FIFO, I have no family in the state, I can only work when I’m well, which is like, never. Most of the friends I have I met here at the hospital. That’s a bit lame isn’t it?

“Not at all. It’s a nice change to have someone to talk to. I’m Rachael.”
“I’m Amber.” At that moment the nurse came back and called my name. As I stood up Amber said “Hey. It was nice talking to you. I really hope your health improves.” I responded with the same sentiment and then there was that awkward moment where I wondered whether I should ask for her phone number.

I’ve never asked a guy out in my life. I get nervous asking mothers at Master D’s daycare to exchange numbers so the kids can have a play date. I’m a giant wuss. So I waved her good bye and walked back into the treatment room, and instantly regretted my decision.

“Good news!” the nurse said. Rubbing off the ink on my arm. “You’re not allergic to dogs.”

“Thank God for that!”

On the way out I looked for Amber, but she was gone. We only talked for a while that day, but I  think about her every time I head to the immunology department. Despite having a chronic and life threatening illness Amber was positive, friendly, and empathetic. Unlike me, she had been sick from the moment she was born, and despite her troubles she managed to make the best she could out of life. She inspired me.

So Amber, if you are out there, I hope you are doing well. I hope the drug trial works, and I hope that you are able to have the baby you so desperately want.

The Controversy of ECT

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Electroconvulsive therapy, or ECT, is a tricky topic. There seems to be a split between the small percentage of people who have experienced it (or have seen their loved ones through it) and swear by it, and the vast majority of people who think it is barbaric and unnecessary.

Before my recent hospitalisation, and even as a graduate psychology student, I was firmly in the “against” ECT camp. To me, anything that involved a general anaesthetic and the induction of grand mal seizures felt extreme, slightly terrifying, and yes, barbaric. In fact, I will admit that for a long time I thought it was a practice that wasn’t conducted anymore. It was one of those “Terrible Historical Moments of Medicine”. ECT was merely an entry in a dusty history book, alongside Thalidomide, heroin cough syrup for kids, and consumption of the honey coated cadaver, (yes, you read that right. I do not joke about honey coated cadavers), only useful these days for mockery by pre-med students and the occasional pub quiz victory.

I was wrong.

When I was hospitalised after the arrival of Master D I was offered ECT. I remember being completely horrified and telling my doctor, in no uncertain terms , that there was no way in hell that I’d be signing up for that kind of treatment. She held up her hands, told me no one was forcing me, but that ECT is very safe and has been proven to really help with my sort of problems. I told her no. She put me on Lithium. I recovered. And that was pretty much the last time I thought about ECT for a while.

Then I was hospitalised again. Now medication, with the exception of Lithium, has always kind of been a sore point for me, in that it rarely actually seems to, you know, work. Anti-depressants made me suicidal. Anti-psychotics were GREAT for spending the day in some half sleep haze and stacking on a load of weight, but they never actually stopped “the voices” I had in my head. I often have bad reactions to medication. Random side effects. My body gets hooked to stuff easily so once I am on a medication it is a complete nightmare to come off it. Lithium works. The rest, quite frankly, I could do without.

Anyway, my body’s general reaction to medication was further complicated by the tiny matter of me spending most of my time vomiting and/or running to the toilet, thanks to the good old Oesinophilic Gastroentoritis. The medication I was on wasn’t even getting the chance to make it into my bloodstream. I was seeing people who didn’t exist, dangerously suicidal, I had been in hospital for months, and was, quite frankly, a menace on the ward. Something needed to be done.

You know, I don’t remember discussing ECT with my doctor and family. I don’t’ remember signing the paperwork. I don’t remember anything about it. I have no idea how they got me into the “ECT suite” (which by the way is not a suite. It’s a scary looking operating room). I can only assume that the doctor offered ECT, I accepted telling him “Do what you want to me, nothing else has worked. Clearly I’m doomed.” And my family went along with it because no one knew what to do with me.

So I had ECT.

First unilaterally. Then, because that wasn’t working, bilaterally. And then – and this is quite amazing – I felt better. The voices stopped. The depression stopped. I felt, mentally speaking, okay. Within two weeks. Five months later I still feel better. Well, mentally anyway, physically things are still pretty crummy.

Of course ECT didn’t come without its problems. I suffered major memory loss for an extensive period of time to an abnormal degree. After ten sessions, my family made the executive decision to stop treatment.

“She is supposed to be doing a PhD,” my husband told the doctor “She is supposed to be doing a PhD and she can’t even remember the word for “carrot. This can’t go on”.” And everyone agreed with that. So we stopped treatment.

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I know my family hated seeing me go through ECT. They described me as looking like a “stunned mullet”, as I came out of the suite, one or two nurses holding me up as I staggered to the ward. Then I’d be all “Where am I? What’s happening?” Every other day they would have to sit down with me and patiently tell me the story again, where I was, what had happened. I would sit there in amazement. Asking question after question. “What do you MEAN I Have been in hospital for four months?!” It was like a bad dream. Soon my family learned not to tell me anything upsetting, as I would forget it within 48 hours when I had the next dose of ECT, and then have to go through the trauma yet again. We would ALL have to go through the trauma again.

Even now I’m not quite sure what my stance of ECT is. I no longer see it as barbaric or dangerous. In fact. I have learned a lot. Quite honestly, I feel I was safer having ECT in the short term than polluting my body with the seventeen or so medications in the long term. I certainly see the value in ECT, particularly for extreme cases, or for people where medication isn’t working. It worked. For me. It was tge best decision. For me. It also had consequences. For me.

But you know what. I’d do it again.

Certainly not for a minor blip in my mood. I would have to be pretty damn unwell to start considering ECT again. But I feel comfort in knowing that there is a tried and tested treatment out there should worst come to worst. Something that works, and works quickly  If it meant I was able to come out of hospital sooner, be with my family sooner, and avoid side effects and interactions and all the trouble you have when you are on a tonne of medication. If it meant that I would never have to go through, and put my family through, the hell that has been this year. Yeah I’d do it.

I hope I never have to. But I’d do it.

How do you feel about ECT? Hate it? See it’s value? Did it work for you or your loved ones?

Ring of Fire

I fell into a burning ring of fire,
I went down, down, down and the flames went higher.
And it burns, burns, burns,
this ring of fire,
this ring of fire.

– June Carter

During my five month hospitalisation this song was perpetually stuck in my head. Perhaps it was a song that seemed appropriate. Particularly in light of my gastrointestinal distress. Did you know that “Ring of Fire”, was once the proposed advertising song for a haemorrhoid cream? Rather unsportingly, I feel,  the Carter/Cash family refused song rights for the advertisment. I can’t think why.

But on a more serious note I could relate to the song. The seemingly endless fall into an all time low that burned. God! It burned! And worst of all, it burned the ones I love.

This last hospitalisation has scarred me. The scalpels, the IV’s, and, yes, the self inflicted tearing at my skin has marked me in a way I will never be able to explain. My skin heals to shiny silveriness, but it will never be the same. A constant reminder to myself, and my loved ones.

But the scar that burns the most is the one inside my heart. The guilt I have, as a mother, for leaving my three year old child during my hospitalisation. Because it wasn’t just for a week, or a month, but for FIVE months of his little life.

He now has a acquaintance with hospitals that I never wished for him to have. If I slip, and mention that I need to see the doctor, he worries, immediately asking if I am ok, If I will go back to hospital again. I have to reassure him that I am not going anywhere and then he climbs up on my lap, ever so gently, telling me that he won’t hurt my tummy. He kisses me and tells me “No more hospital Mummy. You are doing SO well.”

I often say that he was the one who saved me, and this is the honest to God truth. If I didn’t have my son to motivate me into recovery, I don’t know where I would be. But then I think; what a responsibility for a toddler to hold! I never wanted my illness to affect my son, yet it did, from the moment he was born. Unintentionally, I have exposed my son to the ring of fire. And I burned him.

I know…I KNOW that I had no choice. I know I had to get myself better to be there for him. I know that I was “caring for my child by caring for myself”, or whatever it was that the doctors told me to try and make me feel better. But the fact was that I wasn’t there for him. For nearly half a year. I wasn’t there to watch him play. To cook him dinner. To take him to the park. To pick him up from daycare. To kiss him when he fell. To hold him when HE was sick. For nearly half a year.

And of course he takes it in his stride. Because that’s what children do. He loves me no less than he did before.

But this scar over my heart will never heal. How can I forgive myself for putting myself first, when the whole purpose of parenting is to protect your young before yourself.

I fell into a burning ring of fire.

And I took him with me.

So….who are you?

One of the major side effects of ECT is short term memory loss. And, boy, did it affect me.

I underwent ECT thrice weekly for ten sessions in the locked ward. Which, incidentally, reminds me. Recently I was considering my time in hospital and found it remarkable that when you are first involuntarily frog marched to a locked ward it is a major crush to the soul. You’re all “let me out of here! I’m being held against my will!” you pound your fists on the air lock doors and almost inevitably get told that you are going to be given something to “calm down”, which actually sounds quite pleasant until you are stabbed with a hypodermic needle. Then a few weeks later, after you have settled in, you’re all “Welcome to my crib. Bitch.” Institutionalization at its finest. Clearly a topic for another time.

Anyway, back to my terrible memory.

While I was in treatment people often tried to make me feel better about my increasing forgetfulness by relating comical instances of their own forgetfulness or stating that they have a terrible memory too. While I appreciated their kindness, they really didn’t understand the extent of my memory problems.

I forgot where I was, why I was there. Which room was mine. What foods I wasn’t supposed to eat (a major problem as the nurses wouldn’t always be informed of my diet, and I would cheerfully tuck into the cheese toasty they brought me after treatment…) how old my son was, the fact that my grandmother had died, major family events, what my PhD was on.

Even worse, I started to forget the names of objects, words for things and feelings. On my homecoming found that I sent my doctoral supervisor, like ten million emails, all basically saying the same thing. I had to restart the book I was reading every few days as I would forget. Perhaps, most weirdly of all, I started to like foods that I used to dislike. Like honey (or bee vomit, as I used to call it.) Thats right. I had forgotten my food preferences.

I knew things were bad, but i don’t think i realized how bad until one day (over a month after the completion of my ECT) when there was a knock on the door. My registrar (who, incidentally was the splitting image of Gok from “How to look good Naked”. A resemblance so uncanny I had to wonder what the hell was going on when I first met him.) and a middle aged woman. They said hello and sat down and then there was this awkward silence, while I waited for the woman to introduce herself.

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Eventually I cleared my throat, and since she looked too professional to be a student, said “So…are you a doctor?”

She and Gok looked vaguely surprised and then she asked if I remembered her.

It turned out that she had been my treating psychiatrist for some time. I had absolutely no recollection of her. Of course then I had to complete a number of ridiculous memory tests which I miserably failed, because, sheesh, who does know who the current prime minister is?!

I was then informed that, while most people’s memory improves fairly rapidly after ECT, I most likely had a rare side effect of severe memory loss due to taking Lithium during ECT…WHICH YOU ARE TOTALLY NOT SUPPOSED TO DO. Thank you, State Psychiatric Facility.

Luckily for me, with some rehabilitation (aka crossword puzzles and my Book of Things to Remember) my memory eventually returned to normal. There are still a few things that I don’t remember about my hospitalization….

But I think some things are best forgotten.

Miss Independent

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For the first time, perhaps in my life, I am now mentally independent.

You see I used to hear voices. Not your average self talk. But actual voices, from people who had passed. These “People”, as I began to refer to them, told me that I was special in that they could communicate with me, that I had a gift. The People were my moral compass, my life guides. The People told me repeatedly that they “only wanted the best for me, and for me to be the best person I could be.”

I can’t remember when exactly the People became a part of my life. But I distinctly remember their presence during my adolescent period. Most of the time The People and I lived together comfortably. I accepted what they told me, and I never told anyone about them.

It never even occurred to me to tell someone, as their presence was all I knew. I had no idea that I was experiencing psychosis. I had a gift , goddamn it!

A few years ago, I casually mentioned The People to my psychiatric team. Suddenly I was being ushered into the on call psychiatrists office and being prescribed heavy duty anti – psychotics. I was in shock, and in trouble. The drugs didn’t work, and the voices got angry at me. They didn’t like being talked about. This was supposed to be our secret. They got nasty. I felt guilt and shame.

By the time I was admitted to hospital they were telling me to kill myself. They told me I was a bad person, who did not deserve to be helped. I was taking time away from people who were actually sick. For the first time in my life I saw them in person. They followed me around. They told me what a evil person I was. They told me I was lying. I didn’t have psychosis. I was just trying to get attention. And because the anti psychotic drugs never managed to vanquish them, I believed them. If I truly had psychosis, surely the medication would rid them?

Then I had ECT.

Suddenly the voices started to recede, then they disappeared. For the last two months, for the first time in…as long as I can remember… my mind is quiet.

As odd as it sounds, some days I struggle with this. It’s like leaving a toxic relationship. For the best part I feel free, open, and relief. But then some times I hear myself thinking “What would the people say?”. I miss their advice, crazy as it sounds.

Sometimes you feel comfort in the uncomfortable, merely because it is what you know. And I have to relearn how to deal with life without their guidance – no matter how helpful or unhelpful it is. I have to make my own decisions, without first referring to my guardians. I have to come to terms with the fact that I was not “special” at all – just psychotic.

I don’t know how long this mental quietness will last. Some research indicates that ECT will only keep symptoms at bay for 6 – 12 months. I don’t know what the future brings.

But I do know that, right now, I’m independent. I’ve broken free. I still thank The People for the lessons they have taught me, but it’s now time for me to make my own way in the world.

It’s Beginning to Feel a lot Like Stigma…..

So let’s just look past the fact that the fact that The Dungeon was housed in the hospital basement, and obviously hadn’t been the attention of any funding since circa 1976. One of the reasons I had *chosen* (I emphasise this, as I really didn’t have much of a choice), my local hospital instead of the state psychiatric facility was the hope that I could be treated for my medical problems as well as psychiatric issues. However, despite the fact that I was newly diagnosed with an autoimmune disease, the medical care I received as a psychiatric patient was appallingly neglectful. So neglectful in fact, that formal complaints were lodged by two of my loved ones, and an investigation was launched.

For starters, we were informed that the Dietetics department would not treat anyone from the psychiatric department.

What the actual crap?

Anorexia anyone? Bulimia? What about people whose mental illness deters them from eating? What about people who just plain FORGET to eat? The ones who don’t have money to eat? What about the vast body of research that links nutrition and mental health? Having spent five months in various institutions I can confidently say that I saw very few people in the grasp of mental illness who had optimal nutritional health.

This is an excerpt of my husbands complaint letter to the hospital.

“Rachael’s condition is food allergy related, and she also has a history of gluten intolerance, as such she should see a dietician. When this was requested on multiple occasions, we were informed that Dietetics would not see anyone from the psychiatric ward. I contacted the Department of Nutrition myself as they confirmed they could not see Rachael while she was a psychiatric inpatient, but could if she was on the Gastroenterology ward. This sounds a lot like stigma and discrimination.”

And this is the response we got.

“The original referral forwarded by the psychiatric registrar to Dietetics was received by the Department on 28th April, 2014. A follow up call alerted the registrar that Dietetics is not funded for patients staying in the psychiatric ward. …I would like to reassure you there is no discrimination of patients staying in the psychiatric ward and should a psychiatric patient deteriorate medically then they are admitted to the main hospital and afforded the same level as care and treatment as any other acutely unwell patient.”

So patients are only afforded the same level of care and treatment IF they are admitted to the main hospital? Sounds pretty fishy to me.

But Dietetics weren’t the only department unwilling to get their hands dirty on the psychiatric ward. The Gastroenterology department were exceedingly reluctant to take the five mile walk down to the ward and actually come and see me. At worst they “forgot”, sometimes they would phone the department instead of actually examining me, and at best they arrived…days late… telling me that my condition didn’t exist because they had never heard of it. (Ok so that only happened once. But SHEESH…dismissive much?!)

The surgical and investigative procedures I desperately needed were cancelled multiple times at the very last moment, and despite being an inpatient for nine weeks they were never actually conducted (the psychiatric team gave up and actually referred me to another hospital for the procedures). One night I was in unbearable abdominal pain and the nurses were extremely concerned about my wellbeing. Despite numerous calls to the out of hours doctor between 8:30 pm and midnight, he didn’t come and see me until 5:30 the next morning, and then it was all “OH MY GOD THIS COULD BE SERIOUS!”

Oh, I could talk for days about the poor medical treatment I was offered at that hospital.

Except for the psychiatric team. They were amazing.

But if there is one thing I have learned from this experience (my “field” research…according to The Hubster ;)), it’s that stigma is still alive. We think things have gotten so much better since One Flew over the Cuckoo’s Nest. But discrimination is still occurring, all around us, and in the most unlikely of places.

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