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!


Anonymous said...

I bet the other bridge users were grateful you didn't rush across it with your eyes closed LOL

My neighbour has just walked around from his house to ours to drop off a dvd for us to borrow, I set up their Broadband connection today. He cannot walk anywhere without his sticks, usually he is in a buggy, but he walked around today. I did say he should have phoned me and I would have gone around, but I then remembered that maybe he wanted to do this, however hard it was for him, I forget that sometimes.

Holly @Home said...

Good luck Colin..I am afraid some people really seem to think humiliating others is their right .It might be good you don't have a terminal illness but oh God that all sounds so very painful. What words can we say except stay being honest you ,courageous you too.Mum has taken a lot in her time mostly of snobbery because she is a working-class lass with that alcoholic Dad thing to hide but now she speaks up even if she cries after.As for your choice of destinations ..stunning ,beautiful places .I must have been the only kid at school who did not want to go to Florida .We'll be thinking about you .Holly ,angie and Jeff x

Anonymous said...

Good for you, Colin.


Anonymous said...

A friend of mine has this:
Marie Strumpell or ankylosing spondylitis. She is 30 and she can't walk.

There are rheumatism clinics in Germany that help you deal with the illness to improve your quality of life. Are there places like that in the UK?