Am I still ill?

They labelled me; first with OCD and later as a paranoid schizophrenic. Now I wonder what it’d be like living without a label.

Back in school when my problems started I thought that everyone was going through the same difficulties as me but somehow, where I wasn’t able to deal with them, they were. Then came the diagnosis and with it everything suddenly made sense.

(There’s no use speculating as to whether my problems had something to do with my head injury or whether they were there from the beginning - I just don’t know. There is also the possibility that the world is just too fucked up for my poor human brain to cope with!)

A lot of people aren’t very receptive when receiving a diagnosis of mental illness, but I was. There was something romantic about being diagnosed and having treatment and being prescribed medication. It made me feel special.

I felt like I was out of the TV program Six Feet Under, being put on meds; and that made me feel even more special. I used to try and meld myself to the personalities of the characters I’d see on TV and in movies instead of simply recognising portions of myself that resonated with them.

I remember sitting in with the psychiatrist and saying that the world doesn’t seem real to me. I didn’t know if my parents were really my parents; I didn’t even know which thoughts were my own.

I’m always trying to find a reason. Why can’t I work while at the same time I am ok doing other things? Is it weird not knowing why you’re unable to do something? Maybe it’s like with science in that some things just haven’t been proved yet.

I am this way and there is a reason behind it but it just hasn’t been understood yet. That’s interesting though because even with a reason to validate it, it doesn’t change anything. Giving something a name doesn’t mean it’s resolved like with the discovery of a new element.

Is understanding fundamental to overcoming your problems? “Knowledge is power”, right? Or is it? Maybe living by your instincts is the key to happiness. But who can do that? The world is a lie that has grown out of control. We are all fucked up pieces of meat who don’t have a clue! Born into a world that doesn’t make sense, that isn’t natural. Trying to live instinctively because that is natural but then this man made thing comes along and it all goes Pete Tong!

Nobody fits into a box. We all live in the grey areas and that is what makes us fantastic. You can’t say I’m a paranoid schizophrenic because that is an empty statement. I am a human; there is nothing wrong with me. I am not ill; I am just grey.

You can diagnose someone with a physical problem like diabetes but mental illness is totally different; there’s no evidence that for everyone it is a problem in the brain. I think it’s a problem with the world we live in.

So what to do?

Medication

I like to say that Japanese saved me. I stumble upon it during my second attempt at University when I noticed it was offered as a complimentary study course and thought it might be cool. After my psychotic episode (that put an end to my studies at degree level) I continued to study Japanese independently at home.

The prospect of a day studying Japanese almost organically became my reason for getting out of bed in the morning and staying away from my bedroom for the rest of the day. Anyone who has been prescribed major tranquilisers will empathise that this is no mean feat!

My studies gave me direction but there was something about learning Japanese that enabled me to remove myself from the difficult mental processes I was experiencing. I could almost tangibly feel my mind whirring around outside of my body. I guess I had essentially managed to put my fingers into my ears and sing “lalalalalalala” at the top of my voice.

The interesting thing was that through this technique I was gradually able to explore my boundaries more and more. It was as though the Japanese study was some kind of temporary scaffold that enabled the reconstruction - by which I mean the rehabilitation – of me on a personal level.

Now the Japanese has largely fallen by the wayside and my passion for thinking has been re-realised which feels great. I know that there is still a long way to go of course, but the progress is promising.

As time passed I began to wonder if my experience with the Japanese study could be compared to my experience with antipsychotic medication. Does the medication provide a supporting scaffold that serves the rebuilding effort?

Anxiety

“I don’t know how”

“Anxiety never killed anybody” my doctor told me; “you’ve just got to push through it and when you come out the other end you’ll see that it isn’t so bad”. I am not a generally anxious person; my anxiety only arises in certain situations. I have recently gained a grasp on where my anxiety stems from which I’d like to share.

It all dates back to when I was younger; I’d struggle to leave the house to go to school but couldn’t for the life of me figure out why. I ended up making all kinds of excuses so that I could stay at home. I found it very confusing: “How come everyone else deals with this problem (I assumed they all did) so easily?” In the end I logically concluded that I was just weaker than them.

It wasn’t until six years later that I was diagnosed with clinical psychosis, so for that period my family and I were almost completely in the dark. Now, six years after my diagnosis I have a new handle on the anxiety.

It all has to do with ‘shutting down’. When put into a situation that I find overwhelming, I can almost hear my mind saying, “screw this I’m out of here!” as it packs up, leaving only the surface thinking – I literally become an empty shell; unable to look inside.

For ages I found this experience to be very disturbing; I’d find myself out in public but I wouldn’t know how to be there, which made me feel very exposed and as a consequence the anxiety inevitability prevailed.

It was only in understanding what was happening when I shut down that I became able to develop a comfort with it. It no longer distresses me because I can say to myself that it’s ok, this is just how your body deals with an overwhelming situation.

I learned to shut down on a subconscious level in order to shut out the paranoid ideas and intrusive thinking that was so distressing to me. I have become so good at suppressing them that I no longer honestly know whether those thoughts are still waiting in the wings, trying constantly to break through.

For now, I must continue to push my boundaries and learn how to be again.

At the moment I still find my inability to do certain things (because I have shut down) to be very frustrating. I scare myself on these occasions because of the violence – which is directed entirely towards myself – that wells up inside me. 

Retrospective

A hundred years ago someone said that everything that we ever needed had already been invented. Do you ever wonder what people in the future will think when they look back at the world as it is today (in the event that a clean alternative is found for fossil fuel, so that the world doesn’t tear itself apart when supplies run low – oh and don’t forget someone discovering how to undo climate change)?

One of the things that strikes me personally is medication. I am taking the a-typical antipsychotic called Olanzapine. As far as my understanding goes antipsychotics were discovered to be effective treatments for psychosis by accident and it is not fully known why they work.

While taking it I have noticed significant changes in my emotional spectrum AS well as a reduction in psychotic thinking. Now that the dose has been lower slightly I am beginning to rediscover (sometimes overwhelmingly) my original emotional range. Unfortunately the positive symptoms appear to have grown slightly stronger too.

But is the medication a good thing? Does it treat the condition or the symptoms?

Apparently advances in genetics will have a big part to play in the future of how Schizophrenic disorders are treated and even cured. Also, the medication - such as the one that I am on - whilst alleviating the symptoms may be causing long term damage to the patient’s physiology.

Is it so difficult to picture a medical professor lecturing his pupils in the future on the archaic medicines that used to be prescribed so readily; in the same way that people now think about prefrontal lobotomies? Of course a lot of people are finding they are better off on medication as there is no alternative treatment at the moment beside psycho-socio therapy……or is there?

You could call it a conspiracy theory (and don’t worry, I’m keeping a close watch on this one) but I recently heard of a ruse by the pharmaceutical companies in America to suppress information about natural medicines that are equally effective as their counterparts – but without the unpleasant side effects – simply because they aren’t patentable and so wouldn’t make any money for their companies.

Is it true? Why would so many people testify that they are getting better naturally? And what is in it for them? Is it just me or isn’t it easier to believe that the pharmaceutical companies would choose to deny the efficacy of natural treatment because they have such a high stake in the game?

I don’t know what damage the Olanzapine is doing to my body. I read on the leaflet that comes in every box that tardive dyskinesia and diabetes can await the long term user so I’m slightly worried and eager to get my dose lowered as quickly as possible.

I’ve been on a dose of 17.5mg down from 20mg for over four months now and things are definitely better but it was not an easy period. It’s been four months of disruption and frustration and pain for me and my loved ones. Finally though things seem to have levelled out and I can start wondering how the months following the next drop will pan out?

Innocence

“You’re too nice sometimes”, my fiancée has informed me on several occasions. I wouldn’t deny that I am not as hardened to the world as she, but is that a bad thing? Is the world I live in an unnatural one?

If I had the opportunity of doing something for someone which would make their life easier (even if doing so would jeopardise my happiness in a way) then I would do it. I do gain happiness I suppose because I am helping out a person but is doing so in their best favour?

The phrase “You have to be cruel to be kind” springs to mind. Am I limiting said person’s happiness by my action? You might think me a pushover to see me act that way and I think that is exactly what my fiancé feels. The thing is, I don’t go about the task grumbling and complaining about the injustice. I also don’t want to tell a grown adult what to do or what not do because they need to figure it out for themselves.

I’ll admit that sometimes I am scared by the fallout of a request to help me wash the dishes for example (founded on experience I might add) so in order to keep the peace I’ll keep quiet. The only problem with that is that it gets bottled up inside and is primed to explode at the slightest irritation.

I found my body shutting itself down the other day rather than dealing with the situation. Even now I find that there is something blocking me from looking at what made me shut down. It was a very odd and novel experience to find myself in that state.

I was still able to function on a surface level but everything below that was just like static. I had no thoughts or annoying song lyrics stuck in my head; I felt like I was floating along.

“You think everyone is good”, my fiancée also informs occasionally. It’s hard to say whether I’m inclined one way or the other to be honest. Logically I believe that everyone has a sense of morality inbuilt through evolution. I believe that right and wrong can only be viewed through an evolutionary lens.

Unfortunately it seems to me that the way in which the world (I live in) works, seems to pollute its people. I like to think that I am a lot more in touch with nature in my innocence to that world.

Because of my disability I have not been able to hold down a job – even a voluntary one. I haven’t been put under the pressures of poverty or hunger and I have a strong nuclear family supporting me through everything that I am going through.

This may be the reason I am nice and not a complete bastard and also why I am unable to cope with whatever it is that I was unable to process, made me shut down and which I am still able to approach without it burrowing its way out of sight. 

Does it ever feel like things are spiralling out of your control?

“The world is too big”

It’s become a real struggle lately to get through the days. I don’t seem to have the capacity to deal with everything that’s going on. Yesterday my brain got to a point where it decided to pull the covers over its head, shut its eyes and clamp its hands over its ears. I was left in a largely vegetative state; I was in no way anxious or unhappy, I was just numb.

My sister took me for a walk to see if that would help me feel more myself. Although I could look around and focus on the scenery, I couldn’t focus on it in my mind. The same went for my thoughts; I felt empty. There was no articulation going on in my mind except the intrusive loop of song lyrics. I felt like a blank canvas.

Song lyrics have become particularly oppressive recently. They never really bothered me before but now they are bad enough as to drive me to insanity. And they are not alone. The intrusive thoughts and images seem to be getting worse. I put this down to the lower antipsychotic dose I am on now.

CONSTANT VIGILANCE!!              

It feels like an uphill battle at the moment, like I’m straining to survive. It would be so easy to let my guard down and allow the intrusions to rule me. That does worry me quite a lot. What if I start to go along with those thoughts and ideas? I know in theory that they are my thoughts and ideas because they originate from my mind but I have to keep reminding myself of that.

When I’m tired the intrusions are particularly strong and unfortunately tiredness has become a feature of late. This I put down to the meds also. I heard that people with Schizophrenia have to work twice as hard as people not afflicted to deal with their thoughts. It’s no great leap to see how even a 2.5mg reduction of a 20mg dose could make a lot of difference in this respect.

Duvet Day

How do you know if you’re going into relapse? Could it be withdrawal from social situations? Or maybe hearing voices? What about sleeping all day?

I am a member of a karate club. I used to go every Thursday. I’ve been struggling to go since my dose of Olanzapine was dropped. One week I couldn’t face the two hour bus journey. Another, I became unable to contain the new level of excitement I was able to experience as a result of lowering my dose. This has been going on for a while now. Yesterday I couldn’t get on the bus.

I spent the day leading up to the class feeling very excited about going. It was only when I started to walk to the bus stop that I felt funny. I could physically feel myself shutting down as I pushed on. It’s hard to describe what it feels like to do so. However the effect I am able to tell you about.

When I was 17 years old I took an English test. I wasn’t nervous or anxious as I opened my paper. I looked down at the question and realised that I couldn’t read it. I could look at the writing but nothing happened. I remember how odd it felt.

When the bus pulled up I had the same feeling. The bus was there but I didn’t know how to get on to it. I couldn’t imagine doing so. I don’t know why that happened – at least I wasn’t consciously aware of any reason. Somehow I couldn’t access that core part of me that does things. Despite that I felt quite lucid, though only on a surface level.

I had all the hardware but there were no programs running.

Even subconsciously an experience like this would be upsetting. Not understanding why you can’t do something just makes it worse. I spent today unable to get out of bed. I had no motivation to get up. I just felt so tired.

So that’s two off the list; sleeping and social withdrawal. Am I going into relapse? I thought I’d be conscious of some change that would signal so. But what if this is it? I can only hope that these are withdrawal symptoms and that they will disappear as I adjust to the lower dose.

It’s tough right now because I want to do so much more than I am capable of doing. I want to be able to provide for my fiancée. It kills me that I can’t do so. I feel so helpless.