I am the outlier.

In research we commonly deal with outliers.

Pesky scores that vary wildly from the general sample. They don’t fit into the norm. Their very presence can compromise the dataset. In my line of work outliers generally signal one of two things; a participant with radical views, or someone taking the piss.

Best to get rid of the sucker.

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But recently I realised that I am the outlier.

I am the nuance that doctors dismiss, reject, or refer, or tell me bluntly “I don’t know what to do with you”.

I am the difficult patient who doesn’t fit into the medical framework. Who doesn’t present the way others do. Who doesn’t respond to treatment in the manner expected.

Pharmaceutical psychiatric treatment has little success with me. Antidepressants make me suicidal. Antipsychotics have never stopped the voices. Sleeping pills fail to put me to sleep.

I’m tested for epilepsy because my psychosis is ”abnormal”. I’m “high functioning” to the point of rejection from doctors and hospitals because I am not sick enough. I’m misdiagnosed. I’m turned away. I don’t fit the stereotype of ”bipolar”; whatever that may be. Then I fall down to the darkest, bleakest most dreadful depths and the doctors don’t believe I will be able to function. But I do.

I am the outlier.

I am diagnosed with a rare subform of a rare autoimmune disease that no one has ever heard of. Random allergies that make no sense. Hubster marvels how I can chow down a spicy curry no problem, but end up in hospital after a sandwich. I’m told I need medication, I’m given a poor prognosis. And now, undedicated with no treatment other than dietary changes I shouldn’t be in remission. But I am.

I am the outlier.

After years of trying to have a child, and seven or so early miscarriages under my belt I seek medical assistance. At first no one takes me seriously because I am not even thirty. Then, at 29 years old it is discovered that my reproductive years are ending. I’m to descend into premature menopause. This doesn’t run in the family.

I am the outlier.

Suddenly I’m being thrust into the world of IVF.. ‘I’m told I need to act now. I’m told I need high doses of medication. Friends my age spend their money on holidays and drinks. We spend our money on medical bills.

Then I start the process and am told my bloodwork is bad. That IVF isn’t possible. That it may never be possible for me.

I am the outlier.

And as I put my hands on my growing belly, knowing of the tiny heart beating inside, I know that you, little one, are an outlier too.

The one that arrived the very month when I was told it wasn’t possible. The one that came when I had all but given up. The one that blessed me with its presence naturally, the very cycle IVF was cancelled. The one I didn’t lose.

You are my little outlier. The most beautiful outlier there ever was. Every child is a miracle, but you are an extra special. You beat the odds.

Together we may not be representative of the population. We may have different needs to others. We may be the outliers.

But who wants to be average anyway?

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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.

Jail Break: Vesion 2.0

“I’ve been trying hard not to get into trouble…but I’ve got a war in my mind.”
~Lana del Rey

I always think of this quote when I think of my time on steroids. Dark….self destructive…delusional. I found it hard to listen to my loved ones rather the voices in my head. I own a few more physical scars than I did when I was admitted. I angered easily with the staff, and when I did I screamed and swore. Half of me wanted to raise hell, the other half fought for sanity and safety and freedom from a locked ward.

But sometimes that side lost.

One morning I woke to be told that a surgical procedure arranged to ease the significant pain I was canned, after I had taken all the relevant preparations. I broke.

I had existed through the night practically counting the hours between oxycodene and the minutes until the procedure. I couldn’t live with the pain anymore. I ran for the exit. I was still on 1:1 supervision so my nurse ran after me and asked where I was going. I told her I was leaving. She told me she would call security.

“I don’t give a fuck!” I screamed back at her before running up the stairs. And that was that. Alarms went off, staff gathered. I half walked, half ran through the hospital, my nurse beside me still trying to reason with me. I looked behind me and was surprised to see six other staff following.

A part of me dissociated, and I saw myself from above. Haring through the hall, bare feet and pajamas, screaming, my speech peppered with profanity. This isn’t me!

Soon enough we met with security. Five of them for little old me with a limp and a catheter strapped to my leg. Instinctively I tried to dodge the guards, and instinctively they blocked me. They treated me like a wild, potentially dangerous animal. They raised their hands like traffic cops and asked me to sit down…they just wanted to talk.

It was about now I realized I had lost. I had 5 guards and 7 staff members who were going to take me back to hell. But even then I couldn’t let it go. In the middle of a circle of authority I yelled. I told them how crappy their hospital was. I ranted about my pain, I showed them my catheter, screaming that I couldn’t even pee by myself. “You have done this!” I shouted, gesturing to my self. Then, defeated I collapsed on the floor sobbing.

Two security guards lifted my limp body into a wheelchair, and wheeled me back to the ward.

It was only there that I realized what I had done.

Fuck.

As Real as it Gets

A few weeks ago I couldn’t sleep. I paced around the ward, them eventually went upstairs, which we are not really allowed to do at night, but I couldn’t face seeing the same dull scenery.

Upstairs I stared longingly at the exit, then reluctantly plonked myself down on a couch.

“Bad night?” I suddenly heard from beside me. I looked around and there was a guy there. Rough as guts type of guy, with a black eye, stitches in his eyebrow but a surprisingly kind face.

“I guess” I said, not really in the mood for conversation.

But somehow we started to talk. His story is not mine to tell, but I felt for him. It was the first time I had talked to anyone beyond pleasantries, and I was surprised at how much I revealed.

A hassled nurse eventually appeared. “So here are the two missing patients,” he grumbled.

After the nurse left, I remarked “don’t you think he looked like Brian May?”

“I don’t know…I think he kind of looked like Jesus.”

We burst out laughing.

We decided it was time to placate the nurses and head to bed, when suddenly I had a horrible thought.

“You are real aren’t you?” I asked, panicked.
“Real?! Are you serious?!” he asked, half amused.
“I’m in a psychiatric hospital and I have psychosis. I just wanted to make sure I haven’t been talking to myself for the last hour”

He smiled kindly, then put his hand on my shoulder.
“I’m as real as it gets.”

I never saw him again.

Doctor, Doctor, give me the news….!

Well to say last night was a bad night would be an understatement. Psychosis was in full swing, and to make matters worse I was profoundly agitated.

I wasn’t quite climbing the walls, but I was pacing the ward counting, which is nearly as bad. I got into a minor dispute with Jenni (you can call me fat, but no body says my baby boy isn’t cute) which resulted in a room change for her.

I felt as if i was going to explode from the inside out.

Around midnight the on call psychiatrist came to assess me. He was a cheery Indian fellow who I liked immediately. I told him my life story and he made more sense of my hallucinations in 15 minutes than anyone ever had before.

Then he started talking meds. “I had a look at your ECG” he told me. “you have tachycardia”. This I was well aware of. He then gave me a brief anatomy and physiology lesson to which I nodded.

“so basically the seroquel is causing the tachycardia and heart palpitations, and therefore feeding my agitation.” I said.

“correct. You are a very intelligent girl to understand all that I told you.”

I laughed. “I have studied a lot. Too much.”

“what do you study?” he asked.

“I am doing a PhD in psychology…mental illness and stigma.” Oh the irony…

The doctor laughed. “me too! I’m just starting out, I’m hoping to devise a new stigma scale.” (at this point my mind boggled. Double barreled doctor. Would he introduce himself as Doctor Doctor M.D. P.H.D? Or would he go all sophisticated and go by Doctor Professor?)

And so we talked. The absurdity of discussing academics in a psychiatric ward as a patient to my treating physician. Bizarre!

Finally the nurse came back with my med chart and a new anti psychotic to try. Doctor/patient roles were quickly resumed and collegial roles abandoned.

But as he left he gave my shoulder a squeeze. “you will be ok Rachael”

And I will.

Four Weeks and Nothing to Show

Sometimes I feel as though I am on a crazy roller coaster, where I just can’t catch a break. I know it could be worse, but it could be better as well.

I am now entering my fourth week of hospitalization. The only difference is that for the most part my diarrhea has stopped, and for the most part my psychiatric symptoms are worse.

Yep. Worse.

I had suicidal ideation when I was admitted. I now have voices telling me to kill myself. I was depressed when I was admitted. I now feel very little at all. I had psychosis when I was admitted. I now have trouble telling reality.

Doubtlessly, my psych symptoms are worse because of the steroids I have to take for my gut. I have no option. There is no luxury of medication choice. It is the steroids or nothing. The effect they have on me psychiatrically extends my hospital stay. While I am in hospital I can’t access the nutritional changes I need for my gut to heal (steroids will tame the inflammation but not fix the problem)…THIS is an issue I will address in another post. So basically I am forced to ‘poison’ my gut with food that irritates it…the gastro team thus unlikely to reduce the steroid dose..my psychiatric symptoms remain extreme…and I cant go home.

I miss my little boy and my husband.

Fuck it all.

The day that I dreaded mothers day

This semester has been a bit of a write off really. I’ve been up, been down, been psychotic. It all has been really really hard.

Now my personal philosophy for when the going gets tough is to tell myself to keep calm and carry on, convince myself I am fine, and generally  beat myself up for being anything less than perfect.

Now this approach is all very well, except when it isn’t very well. For example last year when I attempted to ‘keep calm and carry on’ for seven months becoming progressively worse before I sought and accepted the help I needed.

But back to this semester. It’s been bloody hard. Ask anyone who has completed assignments and sat mid terms whilst psychotic (see…I’m admitting it now…!Revelation!) But as usual I have struggled on and struggled on.

Until the day I dreaded mothers day.  Why? You ask? Mothers day should be lovely. A nice spot of family time plus the potential to be pampered. What’s not to love? I suddenly realised that I was dreading mothers day because it meant one less day to work to achieve my goals. Suddenly, I stopped. I mentally slapped myself for being so ridiculous. And I booked an appointment with my doctor to get an extension.

Today I got to see Dr. Longname. As well as a medical certificate and a new medication script (which by the way are wafers, not pills. I ask for a different medication that doesn’t make me feel like chowing down the entire pantry, and they give me wafers?! Mind. Boggling.) I had a little heart to heart with old Longname about stigma.

You see, given my extensive experience with the mental health system I am undoubtedly against stigma towards those with mental illness. Well, at least that is what I thought. Longname told me I was self stigmatizing. That if I had a physical illness I wouldn’t hesitate in asking for support. I suppose he is right. Because what I endure is mental. Because it doesn’t leave any physical trace. Because it is indeed, so stigmatized. I tend to try not to think about it. I just want to be normal, and be treated as normal.

But doesn’t anyone? Those with obvious disability generally want to be treated as any other person.

Of course, Longname agreed. But if the disability were to hamper the individuals ability to study and achieve her best, the university would have no hesitation in giving out extensions for work and other supports.

I suppose he is right. His last words to me were “Ask for help when you need it, Rachael. Don’t struggle in silence.” And that’s the core of it really. That’s MY issue. Too many times I have not wanted to worry people, or bother people. Too many times I have denied myself the help I require, and deserve.

But not this time 🙂 
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I kid…I kid! 😉

More than just a mood

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Bipolar disorder is part of a cluster of disorders classified as ‘mood disorders’. Most people associate high and low mood changes with bipolar disorder. For me (and probably many other people too) bipolar is so much more than just a mood change.

Drive and Energy 
When I am depressed I have NO energy. Seriously. Nothing. Every little thing becomes such a drama. Sometimes I feel I can’t even move. I don’t even have the energy to cry, I just kind of sit there. Waiting for time to pass by.

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On the other hand, at the other pole I am like a kid on a sugar high. I need very little sleep, I can’t sit still, I’m impatient with people who can’t keep up with me. I talk and talk and talk and talk. My whole body is fueled with energy…which can be quite annoying sometimes. I have so many projects and ideas. When I’m hypomanic this can be quite useful, I recently completed 10 days of thesis work in under two. But once I cross the threshold to true mania it becomes counterproductive. I have so many ideas that I can’t keep track of them all, I start a project then become bored and leave it. I become extremely annoying. My husband will testify to that 😉

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Self esteem:
When I’m depressed I hate myself. I’m ugly, I’m fat, why does anyone bother with me, I’m a waste of space. I dress in tracksuits or anything to hide under. I avoid social activities. On the other hand when I’m hypomanic/manic I feel confident and self possessed and this generally manifests anywhere on the scale between “Damn, I’m good looking!” to “Holy crap! I’m superhuman!”

ImageMystical experiences:
There is this other aspect that individuals with bipolar, particularly bipolar 1 tend to have…and it is often referred to as mystical experiences. Now I personally think that is just a nicer way of saying ‘psychosis’ myself. I mean how much cooler does mystical experiences sound?! Harry Potter anyone?

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Anyway I read somewhere that believing yourself to be completely normal is a positive sign for stability. When I was severely depressed I slipped into psychosis and started having paranoid delusions where the police were after me for being a bad mother. When I was manic I thought I was superhuman (because I didn’t need to sleep) and that my dreams predicted future events. I believed myself to be special, have special powers, and people were to pay special attention to me. Egocentric much?! 😉

So there you have it. To me bipolar is so much more than just a mood change. It’s almost a personality change. From self loathing to self loving. Failure to fabulous. Miserable to majestic.

And somewhere in between there is the normal, average, non-wizarding me too.

What are your experiences of bipolar disorder? Do you feel like a different person during episodes? I’d love to hear! 🙂

What the Dickens is Bipolar Disorder?!

Bipolar disorder is a universal mental illness. It doesn’t discriminate. People of all ages, nationalities and from all walks of life can experience bipolar. Perhaps this is due to the genetic component of the disorder. Scientists have identified several genes, including the Dysbindin, Neuregulin and G72  genes which when damaged contribute to Bipolar disorder. As such, bipolar tends to run in families, although episodes can be triggered by significant stressors, and in women, childbirth. It is estimated that about 1.1% of the population suffer from bipolar disorder

People with bipolar disorder are 50 times more likely to commit suicide than the general population. That is huge. The suicide rate for the average population is around 0.01%, in the Bipolar population it is around 13%. What’s more, nearly half of individuals with Bipolar disorder will attempt suicide at least once. Extreme depression and psychosis resulting from lack of treatment are the usual cause for suicide. IF YOU FEEL SUICIDAL PLEASE REACH OUT FOR HELP BY CALLING YOUR LOCAL EMERGENCY NUMBER OR PRESENTING AT A HOSPITAL EMERGENCY DEPARTMENT!

A bipolar depression is nothing less of horrific. Unlike Major Depression, often there is no apparent cause for bipolar depression. A bipolar depression can persist for months and may become so severe that psychosis results. Traditional anti-depressants used alone generally have little effect, and can even trigger manic episodes. Unfortunately, because many individuals affected by bipolar seek help during depression rather than mania (which may be enjoyable), they are often misdiagnosed with Major Depression and treated accordingly. Individuals who present with mania may be misdiagnosed with Schizophrenia. Consequently bipolar is one of the most difficult mental illnesses to correctly diagnose.

Symptoms of mania can include pressured speech (or talking REALLY fast), racing thoughts, needing less sleep and not feeling tired, grandiose beliefs (for example, I started to believe that I was superior to everyone else because I didn’t need sleep to function but they did), and general euphoria. People may become impulsive (e.g. spending lots of money, quitting their job) and promiscuous.  But there is a dark side to mania; during a manic episode people can quickly turn irritable and even aggressive. They may experience hallucinations and delusions.

Sometimes individuals experience mania and depression at the same time, for example, a deep depression fueled with energy. This is termed a ‘mixed state’ and is one of the most dangerous psychological states to be in.

Bipolar is generally shuffled into three types: Bipolar Type I, Bipolar Type II and Cyclothymia.

Bipolar Type I is often referred to as the more ‘severe’ disorder in that individuals in that people’s  high’s tend to be higher, and they are more more likely to experience psychosis and be hospitalised.

In Bipolar Type II the high’s are less severe and are termed hypomania. While the mood, cognitions and energy is still elevated, there is no psychosis, and usually little need for hospitalisation. However, depression can be crippling in those who experience Bipolar II, and affected individuals are more likely to rapid cycle between episodes.

Cyclothymia (or ‘Bipolar Lite’ as Stephen Fry once described it), is a milder of form bipolar where individuals experience mood swings from mild depression to emotional highs chronically over many years.

All Mixed Up And No Place To Go

 

Another mixed state. That’s what my medical team are diagnosing my last episode. Partly psychotic, partly hypomanic, partly irritable. But I’m emerging now and that’s the main thing.

Today is the first day I have taken only one Lorazapam to dull my constant restlessness. I simply couldn’t sit still, my thoughts were racing a million miles a minute, but unlike my previous hypomanic episodes I felt irritable and annoyed. It was an intensely unpleasant experience.

So my meds have been changed, my Lithium increased, and I feel SO much better. I have switched seroquel for olanzapine. Both antipsychotics, but the olanzapine doesn’t zombify me. I wake up and feel like I’ve actually slept. I dont think I realised how tired I was until I came off the seroquel.

But there is still a part of me that hates the drug regime. Lithium, desvenlafaxine, olanzapine, lorazapam, seroquel, tamazapam…all for me? The pharmacists know me by name, and dole me out my plethora of pills in weekly supplies. I feel like a drug addict. When people ask if I have ever done drugs I just tell them I don’t need to. I get natural high’s and I get my pills for free at the pharmacy 😉

I will start cutting it down again, once I am full recovered. I’m grateful I have found drugs that work. It’s just sometimes I wish I could walk around without pills rattling inside me 😉

A recent photo of myself 😉

They say the episode was brought on by stress. Your body reacts to stress through chemical changes which can skew the happy chemicals in people like me. I don’t really care. I’m enjoying being able to sit down and actually write. To read a little. To not feel like running a marathon 24 hours a day.

And I’m ok. I truly am. I feel somehow that I had a negative energy that needed to be purged through this mixed state. And now the tears have dried, and I have room for positivity again. That black feeling in my chest has gone…and oh how wonderful it is to breathe.

How wonderful it is to be me again.

p.s. Did I tell you I finished my thesis draft? 🙂