Now and Then
10 May 2017
Can you imagine the shame and embarrassment of walking down your high street in the middle of summer, wearing shorts, with diarrhoea running down your legs for everyone to see? Just one of the side effects of the medication I am on for my MS. There's also the fatigue, failing eyesight, not being able to feel my left foot, and the pain in my lower back is now constant and something I wouldn't wish on anyone.
I am stuck at home with my two cats and the Internet. A prisoner in my own little world. Sure I get out, but even walking to the shop down the road is an effort. The PIP helped a lot. I was eating properly, going shopping once a week and cooking healthy meals. There was a bit left over to have a couple of beers with the boys and I could just about survive.
Now while I wait for my next assessment, it’s back to the foodbank. I starve. Some days I eat a lot of toast, fish fingers and mash. It’s only for a year I will survive. That’s what now is like - for me a world away from what I used to do.
Food. That’s what really got me into my last job. I received a phone call one day from a mate who was looking for people to go and do a job in Watford. I rocked up at the train station and we set off for Watford football stadium. Elton John was singing on the main stage and we were told to go and grab a bit to eat. It was like walking into a five star restaurant. The food was amazing and then the work started which I found great fun. I was hooked and got a job.
When you start, you’re known as a ‘box pusher’, loading the trucks with all the flight cases, and it’s hard work. If you have half a brain you get technical get up on stage and learn how it’s all done. Then you start to learn how the stage is built from the ground up. Then you build the stage. There's an old expression: ‘been there, got the t-shirt’. Well, believe me, I have way too many t-shirts, most of which are in a box in the garage. I'm not getting a mobility car so I may as well make use of it.
I have a wall covered in backstage passes, lanyards, wrist bands and many happy memories.
I have also been a DJ since a very early age. I remember some of it and to this day do the odd one for friends. I have DJ'd in Spain, France, Amsterdam and all over London.
I have worked on a few films, and I am even in one of them. The joy of being crew on a job was getting to go where the general public don’t get to go. I have stood on the roof of the Royal Albert Hall. I had a golf buggy race down the Mall and in Hyde Park. Toured all over England, Scotland and Wales. I’ve done Henley Royal Regatta, Goodwood Festival of Speed and all the big award shows - The Brits, The BAFTAs, and worked bloody hard. And boy, did we party!
To go through all that and end up here has been one of the most difficult things I have ever had to do. Someone said to me earlier “Isn't it funny that if you put a picture up on Facebook of your cat it gets loads of likes. But if you put something up about disability, people shoot past it without a glance”. It’s like being a beggar on the street - being disabled people don’t really want to know. I was one of those people for whom ‘live for today’ was my motto ‘party hard and sod the consequences’. Now the boot’s on the other foot. It’s a hard pill to swallow. And I have a lot of pills to swallow now.
Who knows what the future has in store? That’s the problem with MS. Everyones’ symptoms are different, you don’t know what's going to happen or when. Just pray it never happens to you.
If you have seen the film ‘I, Daniel Blake’ you will understand some of what people with disabilities in this country have to go through. I don’t need to see the film. I'm living it every day of my life.
10 May 2017
Can you imagine the shame and embarrassment of walking down your high street in the middle of summer, wearing shorts, with diarrhoea running down your legs for everyone to see? Just one of the side effects of the medication I am on for my MS. There's also the fatigue, failing eyesight, not being able to feel my left foot, and the pain in my lower back is now constant and something I wouldn't wish on anyone.
I am stuck at home with my two cats and the Internet. A prisoner in my own little world. Sure I get out, but even walking to the shop down the road is an effort. The PIP helped a lot. I was eating properly, going shopping once a week and cooking healthy meals. There was a bit left over to have a couple of beers with the boys and I could just about survive.
Now while I wait for my next assessment, it’s back to the foodbank. I starve. Some days I eat a lot of toast, fish fingers and mash. It’s only for a year I will survive. That’s what now is like - for me a world away from what I used to do.
Food. That’s what really got me into my last job. I received a phone call one day from a mate who was looking for people to go and do a job in Watford. I rocked up at the train station and we set off for Watford football stadium. Elton John was singing on the main stage and we were told to go and grab a bit to eat. It was like walking into a five star restaurant. The food was amazing and then the work started which I found great fun. I was hooked and got a job.
When you start, you’re known as a ‘box pusher’, loading the trucks with all the flight cases, and it’s hard work. If you have half a brain you get technical get up on stage and learn how it’s all done. Then you start to learn how the stage is built from the ground up. Then you build the stage. There's an old expression: ‘been there, got the t-shirt’. Well, believe me, I have way too many t-shirts, most of which are in a box in the garage. I'm not getting a mobility car so I may as well make use of it.
I have a wall covered in backstage passes, lanyards, wrist bands and many happy memories.
I have also been a DJ since a very early age. I remember some of it and to this day do the odd one for friends. I have DJ'd in Spain, France, Amsterdam and all over London.
I have worked on a few films, and I am even in one of them. The joy of being crew on a job was getting to go where the general public don’t get to go. I have stood on the roof of the Royal Albert Hall. I had a golf buggy race down the Mall and in Hyde Park. Toured all over England, Scotland and Wales. I’ve done Henley Royal Regatta, Goodwood Festival of Speed and all the big award shows - The Brits, The BAFTAs, and worked bloody hard. And boy, did we party!
To go through all that and end up here has been one of the most difficult things I have ever had to do. Someone said to me earlier “Isn't it funny that if you put a picture up on Facebook of your cat it gets loads of likes. But if you put something up about disability, people shoot past it without a glance”. It’s like being a beggar on the street - being disabled people don’t really want to know. I was one of those people for whom ‘live for today’ was my motto ‘party hard and sod the consequences’. Now the boot’s on the other foot. It’s a hard pill to swallow. And I have a lot of pills to swallow now.
Who knows what the future has in store? That’s the problem with MS. Everyones’ symptoms are different, you don’t know what's going to happen or when. Just pray it never happens to you.
If you have seen the film ‘I, Daniel Blake’ you will understand some of what people with disabilities in this country have to go through. I don’t need to see the film. I'm living it every day of my life.
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