Time flies by

I've just watched a documentary on ITV of Charles and Di's wedding from 1981 - thirty years ago. I remember watching it live with my in-laws because they had a colour telly and we didn't. Thirty years ago, I wish I felt thirty years older but I don't but hey that's history. I did find it quite offensive that they decided to show that wedding especially seeing as what happened and in my own opinion how Diana was used.

But memories are funny things and I'm going to look at the last ten years. I've watched many of my writer friend go on and achieve so much and for that I'm so thrilled for them and I mean that and they know that. But if I put myself back ten years my dreams would have been to have my name on bookshelves, my name in magazines but life took a different path for me. As one car insurance company said to me when I listed my occupation as a writer 'but we don't insure anyone famous,' my reply was 'I'm not famous darling, I'm infamous.'

Ten years ago I was in a wheelchair and had been told I'd never get out of it. That was a hard pill to swallow but what was even harder was the fact that no doctor would give me a diagnosis for my illness, despite the fact it was blatantly obvious to the specialists I was seeing.

Why? Because they were covering up for a misdiagnosis one of their colleagues made. Sounds daft but it's true. So what I was doing was going one step higher but I didn't realise that these guys played golf together and rather than admit that a colleague of theirs had made a mistake, they happily said there was nothing wrong with me. They lied, they made false promises which they never fulfilled. The Queen Elizabeth Hospital in Birmingham reassured me they wouldn't discharge me until they'd got me a diagnosis, the next time I went back they couldn't wait to get rid of me - without a diagnosis.

I travelled to Oxford to see one of the top consultants in the country who knew about Charcot-Marie-Tooth Disease but sadly he also played golf with the guy from the QE and told me there was no reason I couldn't walk and I certainly didn't have CMT and basically I was putting it on. They were all protecting each other. I did at the time have a website showing the deformities in my family's feet and interestingly enough a doctor from South America emailed me and asked if he could use a photograph of my feet and legs in a book he was publishing about CMT because they were showed classic, severe signs of the disease. Hey Cyd Charisse eat your heart out lol.

It's a long story but finally in 2002 I was diagnosed with the disease.

Yes that was achievement but the achievement wasn't mine. I've lived with this disease, the pain, the deformities, the disabilities it causes all my life so for it's normal. But the diagnosis was important because CMT is genetic. My Dad has a mild form of it so do some of his cousins, two of my sons have it, so do members of my sister's family. For them it's not a problem, they live normal lives. This is one of the things about CMT it affects different members of the same family in different ways but not every family member is affected.

For me, I got a pretty dose of it - but that's okay and my reasoning for that is that I've got the gob to shout about it. It remained undiagnosed in my (despite showing very obvious symptoms from birth) for forty one years. But now it's been diagnosed and is recorded in both my immediate family's records and my extended family.

So what did that battle achieve?

If any child born in the future to a member of my family has problems, funny feet which are seriously funny although they can't cure it, they can help delay the effects of it and no one will have to wait forty one years for a diagnosis and hopefully no one in the future will end up in a wheelchair because of it. I did it not for me but for my family and those to come.

And for me, why have I got it so severely - hey the gob came with it lol.

The second major thing I've achieved is getting my family, my sons away from an evil bastard who beat them up, beat me up too and sexually abused my youngest son.

To stand alone, when you're far from the best of health and move everything from your home of fourteen years overnight, to move to an area where you knew no one to ensure safety is something. I did it. Hey the part of Wales I moved to, I didn't even speak the language but we were safe.

Since then we've lost one home because of floods in 2007 and were homeless before we came to Clunbury. Now it's time to move on and face new challenges.

My novels are still on my hard drive - my dreams of being a writer have taken second place to the challenges of life but I have survived.

Those challenges have taken their toll both mentally and physically and with the added complication of not one but three types of arthritis plus a muscular wasting disease and despression - well let's say it's an experience.

But despite everything and even in my darkest moments the flame, which has at times been just a flicker of light has never stopped burning. I was a musician, I am musician, I'll never stop being a musician but I also discovered writing which as I've said before to me, is another form of music, sounds, words that I can still play and enjoy.

So yes, I haven't achieved what I wanted to achieve but my family is safe in every sense and I've done my best - that is my achievement over the past ten years.

Now it's time for me - hey kids watch this space and this too, I'll do on my own.