Tired Boy

A friend recently asked me how it is that I can enjoy the sun when I also say that I can't cope with excess light (see earlier posts). I'll see if I can explain.

It really depends on how strong my symptoms are at that time. At times when I am severely affected, any sensory input is hard to bear. Thus, any light, sound, movement, smell makes me feel intensely unwell. This is because, as far as I can work it out, the nervous system at these times is out of kilter, and to compensate produces far too many neurotransmitters, and does not produce enough of the chemicals which stop the nerve stimulation after the neurotransmitters have done their job (you can tell I'm not a proper scientist). So any stimulation of the nervous system produces an overload which does not go away for some time after the stimulant is removed.

People often think it would be easy for me to travel if someone were to give me a lift in a car. This is not the case: the constant momvement of the body, and the need to adjust msucles in order to hold myself upright, is enough to make me feel extremely ill, let alone the images that flash past my eyes as we travel down the road. Note, this is not travel sickness: I have never once felt queasy in a car, boat or aeroplane because of the movement; this is something else.

At these times, the sunshine would indeed make me feel more ill. However, at times like now when I'm not in an acute stage of illness, getting some sun on my skin does make a huge difference. A lot of this is psychiological: after more than 6 months of being mostly trapped indoors, the fact of being able to be in the open air, with warm sun on my skin, helps me to feel more alive. I have always loved being outside and loved warm weather, and so I feel better for these reasons too. There is also the feeling of peacefulness I feel when I can stare at the sun with my eyes closed and see the orange glow through my eyelids; it seems to make problems melt away momentarily.

My feeling is that their tactic is primarily to weed out fraudsters. However, ironically they have made the system so gruelling to work with that the only people who could get through it are those with full capabilities, ie those whgo don't need help – the fraudsters themselves. It is the people most in need of help who are least able to deal with the forms and other bureaucratic aspects of the system. I have now become convinced that there is another tactic at work in the department – trying to wear people down by attrition so that they simply give up trying to claim the benefit they're entitled to, and thus the department saves money. I know of many people who have done exactly this, as they couldn't cope with the demands of the appeals process in the vulnerable state they were in. This seems completely unjust to me.

Navigating through this system feels like being trapped in a Kafka novel. It feels as though I am dealing with irrational forces which are inhuman and capricious – it also has the flavour of Greek myth, in which the gods would set someone an almost impossible task for the hell of it; the way to success was never clear, and if the hero failed he was doomed. This is how it feels for me: if providing evidence of the truth of my condition won't get me the help I am entitled to, what can I do?

Anyway, we have gathered as much evidence as possible together and will be taking it to the tribunal tomorrow. At least the tribunal is held in front of independent people – I'll no longer be dealing with the department.

On Saturday I went on a drive with a friend to Waltham Abbey, which is a beautiful little market town with a Norman church. Wandered around in the sun, had a pint, took a load of photos and had proper pie and mash for the first time in my life. Quite an occasion!