Thursday, August 28, 2008

have to make the best of it and will.

first post in just over a week, have to stay in bed for a month.

the nurse told me 2 to 3 weeks last week and yesterday said a month was more realistic.

too much time and been noticing more deterioration in my condition.

difficult to type problem using the mouse holding cutlery and eating.

as long as i can post i am happy.

Wednesday, August 20, 2008

People basically want to be kind to each other.

Anne's kind offer has really cheered me up what a lovely gesture.

And confirms my belief that people only want to be good to each other despite the media wanting to whip us all up into a frenzy of paranoia about all the baddies out there.

Not saying there are not unpleasant things and people sure there are but firmly convinced that people basically want to be kind to each other.

When I was studying criminology it became clear that the fear of crime was greater than the actual reality and the media feed on that fear.

But of course newspapers need sensations to sell copies and more so now as newspaper sales plummet as the internet has stolen their number 1 position.

Love makes the world go round.

hello Anne,

Thank you so much for your kindness its lovely of you to offer to get an air cushion for my wheelchair but I can''t accept it as its too expensive.
The cushion I need is not a static cushion filled with air but a wheelchair cushion that gets charged up at night and that changes pressure as you sit on it.
Thanks again for your very lovely and generous offer.

Sunday, August 17, 2008

MS is a shitty illness!

I hate this MS it has ruined my life and devastated our lives together.

Just before I fell over those cracked and twisted paving stones at work in 2005 we were so blissfully happy together.

Then I went through months of pain and physio, at the beginning of 2006 it seemed my knee was getting better but then it seemed to stagnate and by March it was one step forwards and two backwards.

Its not that we are not happy together now but this MS has really changed our lives it has taken away all our little enjoyments like strolling hand in hand by the canals at night.

Like going shopping together(in shops-often not accessible in a wheelchair) or cooking together, going out with the dogsort going to a gig and making love.

That is all gone now and there are only happy memories which are very sweet but sadly only memories.

Feel we are both too young to be denied all that life but have to accept that this is reality now.

And that tomorrow when I wake up I won't be able to get up on my own and go to the bathroom have a shower and brush my teeth and dress myself and go into the kitchen and make us tea.

None of that sounds very ambitious but for me it is an ambition that I will never be able to realise again.

Not in anything but a dream.

Recently my dreams have been about cooking, something that was a big passion for me and something that was my job here when I was first in Amsterdam.

Now its become a dream, recently fell asleep imaging I was making scrambled eggs.

And now the reality is that I can just about eat so definitely no chance of cooking anything even something as simple as scrambled eggs.

These days it is a struggle to sit upright in the wheelchair as besides the MS it seems my spine has become curved.

My right leg muscle has become so wasted after not being able to walk properly since September 2005 it means that my body sags away to the right so my body looks twisted to the right.

It certainly not good news for my already fragile sense of self and identity to also feel so unattractive.

Do talk alot to myself about this and try my best to persuade myself that it is not so and that I am as vibrant and attractive as ever but not sure that I really believe myself.

Really can not believe how quick the MS has progressed since the diagnosis in July 2006.

Then I could still get about with the help of Nordic sticks but by August 2006 had to borrow a wheelchair so that I could leave the flat as from July could not walk very far.

Could just about get down the two flights of stairs but no further without the wheelchair.

That wheelchair was horrible really too big for me a real bone shaker that rattled and shook and made me feel it was going to split and disintegrate at every moment.

Very uncomfortable chair and pretty shitty that this is the chair that great numbers of sick and fragile people get when they ask for help.

Have discovered since the diagnosis that this society is very uncaring towards the sick and vulnerable.

It is very difficult to get help and the help you get is as cheap as possible.

So the message is loud ad clear that its shit to get sick if you are not well off.

Have got a pressure sore on my bottom and have tried to get the city of Amsterdam to give me a air cushion for my wheelchair but apparently that is an expense that they feel is not justified.

Yet it is well known that pressure sores are very bad news for people in wheelchairs.

But that is the penny pinching world of health and social care in 2008.

Health care has many people employed just to make sure no-one gets anything they are not entitled to.

Which means alot of people spend valuable time and resources ticking boxes instead of giving people the things they need to make a difficult situation liveable.

Its a crazy world where its ok for companies to make millions of euros profit while handicapped people are told that the wheelchair they want and which is best for them won't be available to them as it costs too much.

A world turned upside down where profit is king and disability is your own hard luck.

Thursday, August 07, 2008


Have a major cause for being pleased with myself.

The other day after a year of using temazepam to sleep every night I stopped using them.

First I ate a hash chocolate every might but after 14 days stopped did not want to swop one thing for another thing I would have to take.

And can now sleep ok again in fact better than before with the temazepam.

Also it has done wonders for how I feel as I am far less up and down and somber and negative about life.

Had not realised the effects of the sleeping tablets
now I am back to feeling positive even though my life is so restricted
happy days