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.