What do you do? - Schizophrenia - Claiming benefits

I am in still recovery after being diagnosed with paranoid schizophrenia nearly a decade ago. As of yet I have been unable to hold down a job – though not through lack of trying. I hate having to rely on benefits but I have no choice except to do so at the moment.

I don’t deal very well with stress because, as a mechanism for coping, I have shut myself out of my head so that I can only process things by talking to others or sitting down and writing them out. Couple this with the emotional and thought numbing effect of the anti-psychotic medication and you can see my problem.

At the moment stress comes in many forms but the funny thing is that it affects me without it consciously playing on my mind. By this I mean I find myself getting so worn out that it feels as though I’ve crashed into a brick wall but I have no idea why.

When I get into this state I have no energy left to deal with the barrage of intrusive images and thoughts that accost me, telling me (amongst other things) to harm or even kill myself.

Having to be extra cautious not to get into such a state means I am severely limiting what I do day to day. I want to be capable of doing a job now but the reality is my recovery is what’s most important at the moment. 

Because everyone else does?

Do you hate people taking others from their loved ones?

Things like old age or unpreventable illness are one thing but when someone kills another person because it makes their life easier, is that not hateful?

The problem is we are doing it all the time when we waste money on things we don't need. I bought a coffee machine because I drink a lot of coffee to counteract the sedating side effect of my anti-psychotic medication; but couldn't I drink instant instead?

Like Tim Minchin enjoying his bottle of Chardonnay (because it is the equivalent of an immunisation for an African child) I am aware of what I am doing. I put that down to the necessity to be aware of everything for fear of a relapse creeping up on me.

I wonder if other people are aware or because everyone else does, do they just keep on ignoring the horrible reality until they eventually forget about it?

Showing teeth

Normally when I smile at someone I am doing it for two reasons; because I want the other person to feel valued and because that is what I have logically worked out that you do in certain situations.

There may be an element of emotion but it is buried so deeply that I barely know it's there.
Is this natural?

(It's possible that I'm hypersensitive to the process of getting in touch with my emotions because I'm learning to develop them as an adult instead of as a child; so the reason they feel unnatural is because they are, I suppose)

GOAL!!!!!!! (Do you care about winning?)

Red v Blue

I used to get very upset when the football team I played in or even the one I supported lost a game, the cup, etc. Losing would distress me so much that I’d end up angry and in tears.

Now I no longer get worked up about things like losing a football game but, as with everything, I recently started to question why this is.

One explanation could be that the antipsychotic medication has numbed my emotions to the point that I am physically incapable of caring.

But what if it’s simply that I’ve managed to alter my thought processes?

Have I matured to the point that winning no longer has the some importance in my life?

What if the desire to win (that, when not achieved, can leave a grown man in tears) isn’t a natural impulse? What if our culture has developed in a way that shapes our brain so that it wants to win, when what is truly natural for us is more the opposite?

I saw this army slogan recently and it seemed to be very appropriate to this idea of winning so I've included a link to the British Army Blog.

http://britisharmy.wordpress.com/

It's a loose connection but this TED talk rekindled it for me so here's the link:

http://www.ted.com/talks/dan_gilbert_asks_why_are_we_happy.html 

So, so tired

It doesn't seem to take much to wipe me out completely, and although there seems to be no discernible cause, as Jaffar says: things aren't always what they seem.

It's not something that I can reach out and touch, but I have my suspicions that a lot of what causes the tiredness lies beneath the surface.

Although I am not consciously stressing or worrying, somewhere in me there is a part that is doing so, and it is that which is being a huge drain on my energy levels.

Why I am oblivious to this process I'm not sure; I could have even locked myself out as a form of self defence.

Either way becoming completely wiped out is a frequently reoccurring problem for me. The question is how do you stop being stressed if it isn't something that's happening consciously?

Life is stressful at the end of the day and because I am mentally ill I must be extra cautious. This might mean not being able to work in general or having to not leave the house for periods of time and so being unreliable.

That is why I need support, which could come in the form of state benefits and the community mental health services amongst other things. 

It's hard to admit it but people like me are vulnerable individuals and need help to survive and ideally to thrive.

Learning to be a human

“If you cut me do I not bleed?”

Why do you react emotionally? For me emotion is a bit of an alien concept. I feel more now than I did on the higher antipsychotic dose but there still seems to be a disconnection there.

For example, I recently saw a loved one crying and yet I felt nothing. In my head I knew that they were upset so my logical reaction was to console them because that’s what you do in those situations.

In reading this you’ll probably consider me a rather cold individual (maybe even a Vulcan?) who only cares because that is what ‘should’ be done. But hang on a second.

What if this emotional detachment could be a natural part of growing up that is generally experienced during childhood when a person isn’t so aware of their thoughts; but in my case (because of my condition) it is something I am coming to as an adult?

In other words am I more cognisant of the process of developing emotions because I am older than people generally are when they engage with them?

And could this ring true for other people who are in my situation?

Be yourself

When I was growing up I was always encouraged at home or at school to “be yourself”. I got a bit muddled somewhere along the way though; I’d watch films and instead of recognising characteristics that were already part of me, I found myself thinking “I want to be like that and I will be!”

That just plain isn’t healthy, so now I’m beginning to embrace who I am.

My dad was eager for me not to succumb to my diagnosis. He would always talk of how the service mollycoddles me. How they are being extra cautious and I that mustn’t allow myself to take on their cotton-wooling approach.

But I’m beginning to think that they’ve got a point.

I now see that am ill adjusted to the world around me; I don’t seem to fit in to the traditional niche. This is annoying because I would like to get a job to support and raise my family. It is now obvious that I must find a different way of achieving this goal.

I am an animal that hasn’t adapted to its environment.

Then there’s medication; I know that has changed who I am. I would like to lower my dose but I am worried that I’ll change for the worst if I do so. I feel quite numb at the moment so it would be great to experience a wider range of emotions. But this could come at a price which I don’t know if I’m willing to pay.

So I will be myself and learn to know what I think and develop confidence in my own opinions. I will embrace my limitations and make use of what help is out there for me. I will not measure myself by the rule of others. 

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. 

There is nothing wrong with you – get over it!

Things began to go pear shaped around the age of fifteen. That was when I started to struggle going to school. I had no idea what was preventing me from doing so at the time so I found myself having to make up fake excuses not to go in. I remember being perplexed because I assumed that my school mates were all having the same difficulties as me but were coping with them just fine. I must be weak.

I am very pleased now to have the diagnosis of Schizophrenia. However I still live in fear that someone is going to come up with a test that determines whether or not you are ill and prove once and for all that there is nothing at all wrong with me and that I AM just weak.

But then I remind myself that I do hear intrusive voices and see intrusive images and I speak in a fractured way and often completely lose the train of what I’m going on about. I have also experienced hallucinations and deluded thinking in the past so I think that there is definitely something going on.

It would be nice not to have Schizophrenia; to be able to work and not get exhausted all the time by being ‘on the go’. However I do perversely find myself becoming very defensive when I imagine being told that there is nothing wrong with me. Surely I’d welcome that evidence. Why on earth do I hold on to my diagnosis so tightly?

What would happen if it was proven once and for all that I was as able as any other person to hold down a job? In the past it has been panic attacks that have prevented me from being able to do so. Now that my antipsychotic dose has been lowered a bit I have found that the anxiety too has lessened.

I used to believe that everyone was against me and that they were all seeing into my head. Classic paranoia I guess. One day a while after starting the medication I realised that I no longer entertained that psychotic idea. Now I was faced with the challenge of living in a world where everyone ISN’T conspiring against me. It probably sounds like this new world should be a lot easier to exist in. It is certainly a lot more comfortable, but it is taking a bit of getting used to.

Apparently only around 12% of Schizophrenics in the UK are in employment. Of course this isn’t surprising as Schizophrenia is associated with poor executive functioning. When I first started dating my now fiancée I told her that I was a lot better than I had been. At that time I assumed that I would continue to improve as time went by. I thought it was a matter of taking small steps such as beginning by doing voluntary work for a couple of hours a week and then gradually increasing it, eventually moving on to paid employment. But as Jack Nicolson puts it, “Is this as good as it gets?” - have I reached the pinnacle? I’d like to think that I can get even better than this.

So far things aren’t looking promising. But maybe I’m just going to have to accept that I will need to tread a different path.

I learned recently that emotional numbness can be a symptom of Schizophrenia. Does this mean that I am damaged goods? Am I not able to love my fiancée as much as another could? Or is it all relative? The first thing I noticed when I had my dose lowered was the heightened emotional range. They say you have to find a happy medium with the medication but maybe that means finding a mid-ground between the emotional numbness of the Schizophrenia and the emotional numbness of the medication.

It’s difficult as me to certify that there is something wrong with me. I have not experienced what it feels like to be someone who doesn’t have Schizophrenia. I am told that this thought is deluded and this is paranoid; that the thoughts are all mine and I don’t have to agree with them. But how can I know that they are deluded or paranoid? The fact is that they occur inside me and are so are very tangible.

Again, what if it was proven that I didn’t have Schizophrenia? What would this mean when it comes to these disturbing thoughts? The fact is that it hasn’t been proven that I have Schizophrenia. I have simply taken the leap of faith of trusting in the doctor’s diagnosis. You have to believe in something after all, don’t you? You can’t just sit on the fence.

Lowering My Antipsychotic Dose

When I was transferred to a different Community Mental Health Team a couple of years ago, the first thing my new Psychiatrist decided to do was lower my dose of Olanzapine. Unfortunately I had an immediate adverse reaction and my original dose was quickly reinstated.

I wonder now if that kind of reaction didn’t have something to do with my mind set at that particular time in my recovery. Did I see myself as heavily reliant on the medication? Was I scared that I would go back to the person I was without it? Or did I believe it validated my condition?

Two years later I decided voluntarily that I wanted to lower my dose. I told myself that I was in a much better place than before and I was ready to do without that crutch in my life.

At the time I had been studying Japanese for about five years. This was largely to enable me to focus day to day on something that was external to the confused mess of my mind. As I improved I became less reliant on the Japanese and came to see the medication in the same light; it acted as scaffolding, and I wanted to see if I could stay standing were it to be gradually taken away.

When I was first prescribed the antipsychotic medication I didn’t want to take it because I was worried about how it might change who I was. In the end what made me decide to start taking it was seeing how much pain I was bringing to the lives of the people I love. Basically, I was willing to try anything that’d put a stop to that.

I was also paranoid that what I was taking might be a placebo and that everyone – my doctor, the pharmacist, and even my parents were conspiring to trick me; so that if I got better just by taking sugar pills they’d know that there was really nothing wrong with me. I wished there wasn’t something wrong but at the same time I found solace in the knowledge that I was ill and I wasn’t just weak.

As the medication began working the paranoia subsided and those worries quickly evaporated leaving increased appetite and drowsiness in their wake. When I was first prescribed the Olanzapine I was put on the highest safe dose (20mg). It felt as though the Psychiatrist was eager to throw everything she could at me because the more I disclosed to her about my thoughts the higher she ranked up the level of medication.

I found the Olanzapine to be the most appropriate choice of medication and have been on it for about four years now. There were several reasons why I chose to lower my dosage. Firstly, I had done some research and didn’t like the sound of the long term side effects such as Tardive Dyskinesia and high cholesterol; so I was eager to avoid them if possible.

Secondly, I wanted to see what kind of person I was with the medication as low as possible. I was repeatedly told that my illness was no different from a broken leg; it was just not visible to the naked eye. I accepted this but I now doubt its validity. While reading up on my particular medication I came across the analogy of a car engine. Say a car needs its engine oil topping up; taking antipsychotic medication is basically the same as pouring oil over the entire engine so that some of it gets into the right place.

As I understand it antipsychotic medications work but it is not fully understood how they do so.

My psychiatrist told me at one of our meetings that I will be on these medications for the rest of my life. Maybe he is right; there is only one way to find out. I have been on a lower dose for over two months now and it has been an interesting and at times a terrible experience.

The first thing I noticed on the lower dose was the heightened emotional range I was capable of experiencing. Both the positive and negative emotions became more intense. You’d think it would be great to experience more intense positive emotions but at times I was so overwhelmed with excitement that I had to stop doing the things I enjoy.

The next change I noticed was the reduction of the anxiety that had been plaguing me for so long. That was a pleasant and unexpected bonus. Of course I found myself to be less drowsy and consequently less reliant on coffee to fuel my day. However over the past weeks I have been experiencing some negative symptoms.

I’ve been having feelings of distress. I’ve been feeling out of control. The noise in my head is sometimes unbearable. Seemingly insignificant things such as accidentally breaking a cup can throw me completely. I have been told that my body just needs to get used to it, which I sincerely hope is true.

For a long time I had been going along under the assumption that my brain is broken and that something isn’t right up there. But is this the case? Of course it could be but I’d rather believe that I am not damaged and that instead maybe it’s my environment that is.

That could just be wishful thinking on my part. I have now come to see that I live in an imperfect civilisation and that my brain hasn’t evolved to deal with the modern world so it’s not surprising that it struggles.

I recognise the intrusive images and words that I experience (as though they are injected into me) as part of my makeup. They can be distressing and at times I wonder if they really are my thoughts, feelings and desires. Over time I have come to realise that they are all mine – although that doesn’t mean for one second that I have to agree with them (that’s not as easy as it sounds).

I have been told not to look too far ahead; just to concentrate on the next few footsteps. I am still unable to work (even voluntarily for two hours a week) – especially now that I am dealing with my lower dose, which, as you can imagine is very frustrating. I see the people around me progressing whilst I stagnate. I have to remind myself that I am also progressing and that I shouldn’t measure myself by the rule of others.

I have been on a very long and difficult journey and it is important to keep telling myself that I have done well to get this far. I don’t know where my path will lead from now but I am hoping that the lower dose works out.

As for who I am that remains to be seen.­­­