Thursday, February 23, 2006


I saw a Neurologist last week and I have his letter and diagnosis now. I had originally been diagnosed with Fibromyalgia, as well as spondylosis of my spine. However, I was not happy with that because it seemed to me that my symptoms were beyond the scope of FM. Anyway, this Dr agrees and he says I have a functional disorder of my central nervous system which he writes, is more disabling than most MS sufferers.! I have two friends with MS and I know they can still walk! Me I cannot walk with severe pain and using sticks and then only for a few minutes before my legs just don't work. And we won't bother to mention all the other symptoms, especially the cognitive ones! (Of course I am highly releived it is not MS as that can kill and is awful.)

The point of this is: I have to go to a tribunal tomorrow. To prove I am sick and disabled. I will be sat on a small chair in a front of a large high desk behind which will be sat a Dr , a lawyer and a 'disability rights advocate'.(The latter does not appear to be on my side-I know- I have had two aborted tribunals already). It seems to me the whole thing is set up to humiliate and intimidate. Yes I know there are fakers out there but I have seen 3 specialists and my own gp regularly now. I deserve an Oscar for managing to convince them I am ill if I am not! Besides, x rays show my spine is disintegrating, a thallium test shows my heart is sick and the nuero's test shows my central nervous system is f**ked. What more do they want? All this to get a blue badge for my car. At least so I thought but it appears it means I will get money too and they pay for my car if this goes thro. I didn't realize that when I applied, I thought I was applying for the badge.

Oh and those forms! I have an IQ of 135 plus, or I did at 15, and I could not understand the form and they ask the most stupid questions. Like how long it takes for me to use the loo! How would I know? I don't time it when I need to go! So of course my case was rejected. I have since found it was rejected because I filled the form myself. The trick is to use a professional form filler provided free by disability rights orgs. That didn't occur to me. Why would it? I assumed honesty was what they wanted. They do BUT there is still a certain way to answer these questions it seems.

When I stop thinking about the hassles and realize this neuro's letter describes me as severely disabled with little hope of improvement, it rather hits me in the guts. I have coped this last 3 years so well-I think because I just assumed it would go away eventually.

However, I do NOT let this get me down, I am still active even if thru gritted teeth and I still do what I want. Life is short and mine is not yet over. I did not struggle to survive my past in order to be f**ked over now! ;-) I enjoy myself. One of the first things I did was get rid of the wankers in my life. I stopped being so damned nice all the time. I gave up thinking I needed to put up with people. Oh I still listen, I still help when I can, but I refuse to take shit and I don't.
Instead of dreaming about road trips, I take them.

I went to Oslo in Norway in 2004. I saw OSLO!!! It was hell pain wise and when I got back I was in so much pain I cried for days-I had developed an abscess on my coccyx, I couldn't walk, I couldn't lay down, I was well and truly stuffed. But so what? I went to Oslo. I drove 1200 miles, on my own AND not only that, I got caught in a blizzard which was scary and exciting.

And, get this, this is soooo amazing as I can't even get up a step ladder for fear of heights(okay so now I couldn't anyway but that isn;t the point), I DROVE over the second HIGHEST AND LONGEST bridge in the world. A 13 Mile suspension bridge between Denmark and Sweden. Before I did, I parked in a layby, talking myself into it, and whimpering like a dog! I was shit scared. Then I said 'look, just move the car forward 50 Ft. Once you have, you HAVE to go over the bridge, no turning back. So I did, I took the choice away myself. And you know? Instead of racing over it with my eyes shut, I slowed down and enjoyed it! I looked down at the sea. 83 metres high! Wow!

Last year, I went back to Sweden with John and later to Lake Konstanz. Yes, now I couldn't do these trips on my own as I am worse physically but I still do them. And yes it is me who drives. Driving is the most comfortable thing for me to do as it keeps my legs moving but not pressured. I can shift about in my seat all I like.

Anyway, I said I need to get to bed early so bye bye!
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