Category Archives: Ramblings

The Shape of My World

The shape of my world is splinters of depression, mania, mixed states, and odd periods of something close to normality. The shape of my world is held together with duct tape and superglue and falling apart at a moment’s notice anyway. The shape of my world is love and care, but the jagged splinters of everything else cut and I bleed no matter what cushions there are around me to soften them.

The shape of my world is moulding the soft parts of myself around the shape of other people in order to make them more comfortable. It’s padding the shards so they only cut me, if I possibly can. It’s service and care and love while I bleed inside.

The shape of my world is lopsided and confusing, and I’m the only one who can negotiate it with any safety. People who come into my world can end up confused and hurt and even scarred, and I don’t want that any more. I want to keep the people around me safe. Happy. Comfortable. I need to try and right my world before I let anyone too far into it again.

The shape of my world is ephemeral, ever-changing, wispy and smoky and insubstantial. It could be blown away at a moment’s notice, and grasping at it achieves nothing. I try to capture it in moments, in hours of pleasure, in little glass bubbles made of experiences. But glass is fragile, and a sudden wind can send them all crashing from the shelves that barely hold them to the concrete floor of reality, and in that wind I will be gone. If you hold a bubble of my happiness, hold it dear, it may be one of my last anchors in times of storm.

The shape of my world is bounded by my fears, my hopes, and my dreams, and when those fade the boundaries of me bleed into the nothingness, until the blood loss is so bad that I pass out of reason and into a living death, and I need rescuing before I bleed to death.

The shape of my world is unstable, shifting, changing. It is difficult to deal with, challenging, confronting. This is me. I lay myself raw before you. Enter the mists at your own risk. I will try and pad the splinters, I will do my best, but there are so many, they are so scattered and disparate and sometimes I don’t know they’re there until they’ve sliced me or you to the bone.

Memories and dreams

A tiny desk light sits recessed deep into the wall. So deep that it is pretty ineffectual, really. Thick plastic protects it. It is firmly bolted to the wall. The desk is scattered with unopened food packages, wordless gifts of caring people. Pringles, Ferrero Rocher, the good things in life, gifted to keep me going.

The walls are covered with fragments of blu-tack and tacky areas of glue that someone has attempted to peel off. Places where former residents have personalised their space. Not me. I don’t want it to be mine.

I hear the sounds of the city, the motorways and the train lines, but also the sparrows and the cicadas celebrating the end of summer. There is a peace here, stashed out the back of the hospital.

I am in Te Whetu Tawera, the Auckland DHB Adult Acute Mental Health Unit.

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Rolling a cigarette at my table at home. It’s the little rituals you miss when you’re sectioned under the Mental Health Act. Smoking is prohibited on all hospital grounds, even psychiatric wards, and that is a rant for a whole new day. They break the routine and the rolling and the breathing and the release, but “poor health outcomes” trump all. Shortsighted? No, that’s the wrong word. They see the distance clearly, but the up-close reality is lost on them. What does lung cancer at 50 mean to people who on average live to about 32?

I rolled, relaxed, wandered out onto my balcony in the glorious evening sun, lit up, inhaled deeply. Bright and dark tobaccos, soaked in port, brought peace as I exhaled the geyser of spent smoke.

The sun set over the Waitakeres, shifting tones of orange and pink and lilac and violet and all the half-colours and tenuous shades in between. The ranges stained deep mauve against the shifting light as the sun sinks down.

All this I saw from my balcony, my sanctuary. It was a tiny apartment, it had black mold, there was no extractor fan in the bathroom, and it was mine. It was always a bit messy. I am not a clean freak, though I tried not to keep a complete pigsty.

Sweet lovers and dear friends passed through in their times, nourished by my renowned cooking. There was laughter and passion and comfort and joy.

I remember.

Depression is not forever.

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I will walk through my front door, wrestling with the ridiculous Patient Property bags that they release you from the hospital with. The house will smell good – Mum always goes on a cleaning binge when I get sick, and cleans my apartment thoroughly.

They tend to let you out in the late morning, so I can watch the sun as it creeps across my living room. The arc of the sun’s path is altering from high summer to slower, slumbering autumn. The light slides slower, more sensually, with less scorching heat. I will lie on the freshly vacuumed carpet. I will roll around in pleasure. I can be free.

Depression is not forever.

 

Sit down and shut up

If you’re in a group (real life, online, wherever) then you are expected to conform to the rules of the group. Cross a boundary, or even just push its limits, and the reaction can be varied, and sometimes quite unexpected. It doesn’t matter who was objectively right or wrong (if there is such a thing in play), what matters is the rules of the group.

The rules of the group can help sweep an individual into a world of things they aren’t comfortable with. If everyone gets pissed every Saturday and you don’t, that is likely to slide. It’s non-participation, and that’s a little easier to forgive. But try saying that maybe it’s not healthy to live a life so soaked in alcohol, and you’re ripe for ejection. It’s part of being in the group, and questioning it marks you out as ‘not like us’.

It makes it hard to stand up to a group of people you know, who are your friends, and say something unpopular. It takes a lot of guts to hear people joking about bashing someone and stand up and say ‘no, that’s not ok’. It’s hard to watch someone make jokes about sexual assault and call them out on it. Maybe, if you’re lucky, they will look at themselves and think ‘no, I don’t want to be that guy’, or maybe the blame for disrupting a sick joke will blow back on you.

It’s hard being the one who stands up and says no, but it says a lot about your character.

How Could The System Improve?

The first thing that would make the mental health system better is a whole lot of funding and enough staff. But that’s probably not going to happen. Neither is anything I suggest, in all likelihood, but I have some ideas.

1) We need long-term inpatient facilities. They went out of favour sometime before my time – I think they were mostly closed down in the 80s in favour of community-based treatment. They were not perfect, and there was a lot of unethical behaviour associated with them, but I still think they need to come back.

Why? Because the current acute units are forced to deal with long-term patients, who spend months in them, taking up space that was supposed to be for emergency acute care. Allocating resources to facilities designed for long-term care will take the burden off acute care units and allow them to deal with acute patients. Additionally, long-term care facilities can target their treatment, and institute therapeutic programmes to help their residents prepare for the outside world.

What could go wrong? The biggest worry (apart from the dire lack of funding) that I see is the risk of institutionalisation. People can become so used to their sheltered facility that they never reintegrate into society. However, I would argue that it’s already happening in acute facilities. Additionally, there is the sad truth that some mentally ill people will never do well in the community, and many end up on the streets or in prison. Many families cannot cope with their mentally ill relatives, especially in the long term, and the mentally ill are left with very little to fall back on. Long term care must be looked at as a viable option ofr both individual and community health and safety.

2) The range of therapeutic programmes needs to be broadened and made more accessible. Community programmes are overburdened and under-funded, and inpatient programmes are often non-existent.

Why? Being well needs a combination of drug therapies and talking/skill-building therapies – and both should be readily available and accessible, both in inpatient and outpatient scenarios.

What could go wrong? Well, bot a lot that I can see. More availability of services can’t be a bad thing, except maybe for budgets.

3) Sub-acute facilities need to be more readily available.

Why? Sometimes mental health patients need time away from their own lives in order to sort their mind out a little. Short-term sub-acute facilities are ideal for this, and early intervention could take pressure off acute care wards. But sub-acute ‘respite’ care is not readily available. Some areas have none at all, and others have very little.

What could go wrong? If people needing acute care are sent to sub-acute facilities due to poor needs assessment or lack of space in acute wards, neither the others in the facility nor the patient are safe.

These are just the things churning around in my mind at this point. There’s probably more that I will think up at a later date.

 

Being an Inpatient, part 2

The first couple of days I was in, I was too scared to feel anything. The other people there were mostly very unwell, and some of them were quite frighteningly so. One woman tried to set her room on fire. Another would touch me every time she saw me, so she could ‘read’ me. Some were so drugged out that they were just zombies. I was afraid of the place I had come to for refuge.

By about day three, my terror had begun to subside, and I was able to think about more than just how afraid I was. And the crippling suicidal depression hit me again. I asked my nurse not to let me outside the unit, because I was afraid I would do something to myself. Her reaction stunned me.

Instead of just telling the door guard to not let me out by myself, her first reaction was ‘Oh, ok, let me see what meds we have for you to take PRN (as needed)”. She wanted to give me sedatives so that I wouldn’t be a problem. She was not happy when she found that the only meds I had listed were an antihistamine and an antiemetic. So she called in the duty psychiatrist.

It was 5pm on a Sunday night, during a holiday weekend. The duty psych was probably at home with his family. It took him more than an hour to come in, an hour in which I hid in my room. I didn’t want to be drugged out of my mind. I just wanted to be kept safe until the storm passed.

I told the duty psych that I didn’t want any PRN medications listed, that I just wanted to be safe, and that I thought it was a waste of his time to be called out for this. I don’t remember much of the conversation, except that my nurse was rather unimpressed with my telling him that I thought it was a waste of his time. I did not have any medications added to my chart.

I did have one excellent experience with a young nurse, who did all his medication rounds and so on, then came and talked to me for a half-hour or so. He listened, he suggested different strategies for coping, and he made me feel more human, and less of a number.

I waited for proper assessment and treatment til Tuesday, because a holiday weekend means that there’s only bare-bones staff on. When the next working day rolled around, all I wanted was to get out. I think that I would have lied through my teeth to get out at that point, no matter how I was feeling. I was still down, but by that time I had figured out a couple of different ways to kill myself using only the items provided in my room, so I figured I wasn’t really safe in there anyway. I was sent home.

My stay in the unit was eye-opening. I saw some very very sick people. But I saw some horrors that were very little to do with mental illness, and a lot to do with a dysfunctional system. I saw nurses pulling double shifts because there wasn’t enough staff. I saw people being doped into chemical stupor – maybe because they needed it, but maybe because the place was not equipped to deal with even minor problems. I saw people in desperate need being thrown out because the ward needed the bad, and they were not sectioned so they could be moved out.

Talking to the other people in there was eye-opening. It was supposed to be the acute inpatient unit, but most of the people I met had been there for months, even years. The closing of long-term mental health facilities has had an awful effect on acute care facilities – they can’t deal with acute patients because they’re overfilled with long-term patients.

There was a weekly planner on the wall with the activities for each day, but when I asked around, it was pretty clear that none of them had run for a while. It was not a treatment centre so much as it was a storage unit for the mentally unwell, and the primary form of therapy was chemical. I think the idea was that as soon as each patient could be stabilised on some medication, they could be released into the community to be dealt with by community mental health.

I think that the current system of inpatient mental health treatment is fatally flawed. Acute units are trying to deal with long-term residential patients, and there is no therapy of any kind offered (I could be wrong, as I wasn’t in very long, but that’s what the others that had been in longer said).

Tomorrow: How I think the system could work better.

Being an Inpatient

I spent the Waitangi Day weekend last year in the inpatient psychiatric unit. I put myself in there after feeling like I could no longer keep myself safe on my own. The five days I spent there were awful.

Getting a berth in the ship of the damned was a lengthy process. I presented myself to the emergency department of the hospital just before 11am. I was admitted to the ward at quarter to nine that night. I spent most of that time waiting for the mental health emergency team to come and assess me. I know they’re busy people, but by the sixth hour of waiting I was pacing, anxious, and regretting asking for help. A caged animal waiting for its master.

The emergency department were very good to me. They were overworked, as usual, but they brought me magazines, made me the odd cup of tea, and even brought me some sandwiches. I was grateful for that, because it was the only food I got that day. They made me feel safe in a chaotic environment, and eased my wait as much as they could.

I was admitted on a Friday night, and taken to a little room that would be mine. I had to unpack all my bags, and had any contraband removed – drugs (including medications), and anything with a cord. I’m sure there were other things on the contraband list, but these were the only things I had on me. I was body-searched, which was intrusive and frightening. I understand why they had to do it, but it was another thing that made me wish I had never asked for help. They took my description and any identifying features, ‘just in case I did a runner’.

I was ‘settled in’ and left to it.

Tomorrow – what it was like on the inside.

Frustration

I’m doing everything I’m supposed to. I take my meds religiously. I take my supplements. I get enough sleep. I go to the gym. I go to all my appointments (apart from the odd first-day-of-medication counselling appointments – first days are never good)

SO WHY AM I GETTING WORSE? It doesn’t make any sense. I’m fighting just as hard as I possibly can, yet the black dog on my shoulder is growing heavier and growling louder.

It’s so frustrating. It’s not supposed to go like this. You do everything as prescribed, and you get better. Not getting better is supposed to be the result of non-compliance. But I’m complying as hard as humanly possible, and I’m not getting well.

I don’t know what to think about it all. I’ve fought through side effect hell (this time round, it seems to be killer headaches and itching) and taken my meds no matter what. I’ve gritted my teeth and gone to appointments even though all I want is to crawl down a particularly deep hole. I’ve been going to the gym, even though the direct result of every session is melting down into a teary mess. I’ve even forced myself to be occasionally social, when really I’d rather wrestle angry bears.

So I’ve done my best, and it’s not good enough. I’m not beating this. What now?