Silence should be a golden thing

So much of my time is spent on my own. I've gotten used to it so it doesn't really bother me that much. It's a way.of living that i feel i've adapted to. Having to listen to music that i haven't put on is not really my thing and i tend to avoid it as much as i can. Why people have to have noise on at all mystifies me. It's far better to be lost with your own thoughts than have your mind invaded with rubbish. It's the only criticism i have of the home. They haven't got anywhere you could call a 'quiet' room. There is noise everywhere. It's noise pollution. People listen to music all day. When they're not doing that the noise they make is smoking-related. They cough their guts up. As if we want to hear that!

Life is much better when you put away your fags and leave your coffee alone Forget about being addicted to noise and other stuff. Do something more constructive with your life. I'm probably whistling in the wind here by saying it and i realise that not everyone has the willpower you need to change the habits of a lifetime. That's what it boils down to really - willpower. You've either got it or you haven't.
Spending time on my own isn't something i've chosen to do. Far from it. It's something i've been forced to do. I remember, as a kid, saving a £50 week until i got to £1000. It was a long, hard struggle, but i did it because i was so determined to do it.

i still think about that now. When i was in Leamington i spent hours in the same seat without complaining. It shows you can get by when you really need to. I regularly used to bike to Frolesworth and back home (a distance of 15 miles) and think nothing of it. Making things hard for myself meant that a normal day was a stroll in the park.

willpower is a wonderful thing. So is determination to do something. Playing a song too loud is not really on in case you disturb others (me).
Some people ar just born lazy and that's just how the cookie crumbles.

Reading is something I'd miss...

Reading is the only real pleasure i get. My wife would argue that point. She'd say that her regular visits are a pleasure too and, of course, they are. Reading is a good pasttime though, whether it be a book or a blog, because I don't have to answer back. They take you to a world where they don't question you or expect anything from you, except your time and your attention. Blogs are pretty good because you can interact with them. They don't need to know your condition. They just don't care.

Not being disabled is so important. It gives me my life back for a while and allows me to forget how it is now and how it was back then. I'd like to write a book one day. It'd be an adventure and would explore the world which i live in today. I've been disabled for nearly five years now and it's proved to be different to anything i've ever known it could happen. I just don't know.

There are some good blogs and i enjoy reading them. They inspire me to do better things with the time i have left. There WAS a time when i wrote four blogposts a day. Who i expected would read them, i don't know. Getting married has changed my life for the better. I've been with her for twenty seven years this October and we've had our ups and downs.

There's not much i can do since i had the stroke, but reading relieves the boredom i face everyday. And that's a good thing.

Dols is such a waste of time

It looks as though i'm going to have to use the law to overturn dols' damning assessment of me. I'm definitely going to appeal against them and what they had to say about me, as is my right.
dols (deprivation of liberty) are supposed to be there to protect MY rights so what happened to make them take the opposite route is something i'm not quite sure about. I just know that i'm not going to stand by and let them say what they want (which they have done) about me. The least i expect is a truthful account and one which isn't biased against me.

i've never really been happy with dols and have often wondered what planet they were living on.
i just have to wait for the courts to decide now. I'm hoping that they believe me. The whole point in having dols is to prevent the patient (me) from being discriminated against. It's hard enough being disabled and you really need support, someone who is there to make sur the right decision is reached.

it might take a few months to get there, but i feel i will get the voice i need at last. My mental capacity is good. My ability to make key decisions is sound. It's right that they don't take away my rights. Everybody else has them. Why shouldn't i? As far as i'm concerned the decision to ban me from eating toast (i'd been eating it for 3 years) was the clincher.

I wasn't happy with the ban that stopped me riding my electric chair outdoors which way was over the top too. I made a mistake and one that was to run indefinitely and one that i could not appeal against.
They punished me. We all make mistakes, but we don't expect to get punished for them. Travelling in another chair (which they expected me to) was so uncomfortable and made me miss many appointments that i wanted to attend.

Are SALT as bad as the Gestapo? Mmm....that's a tough one.

I'm not saying SALT are as bad as the Gestapo, but they come pretty close to it. When you're disabled they make your life hell. You'll wish you'd never been born. That's my experience of dealing with them.
You may say that's a bit harsh, but i've cried at the ridiculous decisions they make about me. They've ruined my life. They banned toast (never mind that i'd been eating it for three years) I've never been a prisoner of war and had the Gestapo breathing down my neck, but i would imagine that the similarities are there: they both worship the same leader and talk the same language.

Take my word for it: they are not nice people. They watch 'The Caine Mutiny' and think Humphrey Bogart is a god when he uses the marbles to find out where the strawberries are.. Why SALT (speech and language therapy) decide what you have to eat is a mystery to me.. it'll al become clear to you if you become disabled. I hope you don't. Getting stressed by them is the last thing you want.

It could be worse. I could be a Villa fan

Even though i have some struggles in my life i can't let them get the better of me. I have to think positive about things and plough on. Ok, i'm suffering from an illness from which there is no cure. That i know and that's the bad stuff out of the way, but there's hope for the future and what will happen. You just don't know what's going to happen. It's like unwrapping a Christmas present. What will you get?
As i look back on what has been, there are mistakes i've made. Who can't say that? One can't go from situation to situation and not have regrets about things? Shit happens. All you can do is learn from your mistakes. You won't be the first to have got it wrong and you won't be the last. That's for sure.

Living life will never be easy for me, but that's a cross i have to bear. It will be a hard life. That's the way it must be. Still, it could be worse. I could be a Villa fan and that will never do.
There are things that i miss; playing cricket or going for a drink. But things are different now and it's no use crying over spilt milk. It's more a case of 'life is what you make of it'. There are people who are far worse off than me, so i shouldn't moan about it. How they get through life with a smile on their face amazes me.

I gave up smoking about four weeks ago and it's all about having the willpower to succeed. Once you can do that you can do anything. Believe me. It's never easy, but you find a way. You can do most things you set your mind on. Every morning (if you're like me) you suffer from pain. It's a lot to put up with, but i'm sure other people could put up with it. You talk to people about dols and they tell you they "not going to get into a discussion about it" Why not for fucks sake? If people become carers it's no use taking that fucking attitude.

You can get by without their help. They're not all like that, thank god. Some are really great! You may become the next Jeffrey Archer (ex MP) or Chris Ryan or Andy McNab (former SAS soldiers) who write for a living. Time on their hands is something they have plenty of. Everybody wants to read your story (providing it's interesting enough.)

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The trouble with being disabled

Is that nobody tells you anything. If you thought you could rely on somebody: Forget it. You're on your own. If you can't talk: too bad. Relying on anybody for support is futile. It's an age-old problem; you've found a brick wall. Now. How hard do you bang your head against it? What you should realise is that you're disabled and no-one cares if you have a problem. If it's your problem, then it's YOUR problem. Nobody wants to talk to you about it. I don't know how long it's been like this. Always i'd say. It never used to bother you because you weren't disabled.

I got banned from using my chair outside. I wanted to know how long the ban was for. Indefinite, i was told. Even murders get told how long they'd serve. Nobody gets told "indefinite".
They take away my rights and don't tell me about it. I've got no rights at all! What's fair about that?

Rights of the disabled

They tell you that your rights have been taken away by them because they have to. They try to leave you with nothing. It's not enough that your rights are all you have left.

Being disabled (like i am) means you get treated with no respect by people who don't understand how insignificant they make you feel. It's the worse feeling you can have as a human being. You're not really a human being at all. Having your rights taken away is something else that annoys you too. Why are they taken away? Who helps us when this happens? It's a very difficult situation when it happens and very often you have to get legal representation to stop it happening at all.

It does happen though. When you're disabled it's very easy to become a victim. We need our rights. Please make it an offence to deny them to us.

Doing things your own way.

It must have been in July, the height of the camping season. There were hundreds of barbeques being started on what could only be described as the perfect weather for cooking outside. The grass was green. The sky was blue and the temperature was set to soar to new heights. It was definitely the kind of day you felt uncomfortable in if you had to do hard work. All around there were people enjoying themselves. You could hear them and felt good yourself. The bus arrived at Hunstanton and although you couldn't see the beaches, it was a fair guess that they'd be busy today.

It was fairly early when i found out this was the day's last bus. I decided to walk the 17 miles to Wells. If I walked and stayed on the coastal path it should be easy to get there. Then i'd pitch the tent up and Bob's your uncle. What could be easier than that? I left about 7, which gave me plenty of sunlight. Slinging the tent over my shoulder i began to walk into unchartered territory. Looking behind me, i could see nothing that grabbed my attention and noticed that i had walked about a thosand metres. There was a slight breeze in the air which came as a welcome difference to that of the bus.

The birds arond me were getting quite excitable with me being there. They were making a hell of a racket and It wasn't until i'd moved on that i realised that i was an unwelcome visitor. It was at this point that i dicarded my trainers and socks and walked along the sandy footpath. It felt right. It was a bit cooler now and i was glad of the coat i had on - a camouflage jacket which had made me look a bit out of place, but i was glad i had brought it. The sunlight was rapidly changing even though i was still full of energy. It wouldn't be light for much longer.

When darkness came, the footpath seemed to change and i was caught between sand and very deep water. It was pitch black and i got worried when i began to sink. I could hear the sea. I could see a light that was about a mile away, but i couldn't see where i was going. I felt all alone and my cries of "help!" were wasted because no-one was going to hear me. Somehow, miraculously, i managed to find my way back on to the footpath. All i could think about was my family and what they'd be thinking if the worse had come to the worst. I found an old building which had no windows and was empty. The chill in there was quite breathtaking. It was hard to sleep, but as soon as it was light and i put my socks and trainers back on i found the road. It was still seven miles to Wells so off i set.

With my tent hanging around my shoulder and my camouflage jacket tied around my waist, i was overtaken by a cop car. He looked as though he thought i was crazy to be out on a Sunday morning. We came to a village that had a pond that i couldn't resist getting my feet wet in. I was starting to get some blisters and it was good to dip them in cold water. After a short stop i was on my way again. This was Wells. A young girl tried to make conversation with me, but i wasn't interested. It had been a long walk. I can't really remember pitching the tent. I just remember waking up. After a few stretches i could hear voices. "You don't want to put you tent up like this" (meaning me). I thought of what i'd just been through which was something along the lines of "why don't you piss off, clever clogs!".
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Dols (deprivation of liberties) isn't working

Disabled people like me depend on Deprivation of Liberties. It is given to disabled people with full mental capacity (people who know what's going on and who can choose for themselves rather than have other people make decisions for them). I have been denied this right. It's not a question of why? It's not even a question.
Deprivation of Liberties doesn't work for me and it should. If you knew how much pain i feel (it is unbearable in the morning, believe me), making my life a little easier is not too much to ask, is it? Instead, this know-it-all quango have decided what i must eat and i'm not happy with it. They have said some horrible things about me. Things i do not agree with. I was shocked and horrified when i read the report they wrote about me. None of it is true. I am a human being who has no right of reply. Because i cannot talk properly they have decided to make an example of me. They are bullies. There's no other word for it.

Describing how i feel right now is something i have difficulty doing. These people have destroyed my life . and haven't had the guts to tell me to my face what they want to deny me.
Going about it the way that they have just goes to show me how useless i am. I'm disabled and in a wheelchair. When will they ever treat me like a human being?
There are three things that people should be aware of which could lead to a stroke;
Smoking.
Too much salt in your diet.
A high blood pressure.
These things i've mentioned can almost certainly kill you. They give people the right to decide for themselves. I gave up smoking four weeks ago. I wish i hadn't bothered now. Why should i be concerned for my own safety when they're not even bothered themselves? Smoking is kiiling my next-door neighbour. His coughing is annoying to listen to.

Having the right to live your life how you want to is a strange one to answer..
it depends who you are. Dols isnt something you should trust. Not anymore, anyway.
There's not many people you can trust when you're disabled. Dols is one of them.

Tread very carefully, there.

My disability and me

I can't remember much before Leamington Spa. It was about an hours drive from Hinckley so i was lucky in that family could drop by when they wanted to. I spent nine months of my life there so i remember it pretty well. I kne i spent a lot of time in the same room as somebody who was comatose. If that wasn't bad enough, the next person i shared a room with was in a coma too. I might moan about the way i am, but those fellas and what they have to put up with is something else. The next nine months was uneventful as it turned out. You needed strength of character to get through it all though. There was no hiding from the boredom you had to face. Seeing my dad (a rock if ever there was one) and Mandy helped to make things a little more tolerable. I made friends with a few guys who were going through the same things as me. Staying away from Mandy was something i wasn't used to though. When i look back on it now i'm pretty amazed i went through it all.

Leamington was something i'll always remember even though it was somewhere i'd like to forget. I didn't ever think i'd ever see Hinckley again.
It was summertime because i got up ealy every morning and it was light. One of the cleaners slammed my food down so venomously i wondered what i had done wrong. It was my imagination working overtime. I was all wired up at that point and didn't have to eat because it was all done for me. Then Frances came along and gave me my first drink. It was Frances who took me to the opticians, so i could see properly for the first time in ages.
Fast forward it by four years and so much has happened that i wonder what will happen in the next four years. Whatever does happen, i'll be ready for it.

It's been an amazing adventure that has to end sometime. I'd like to turn it into a film, but nobody would ever believe it. I don't blame them either. I wouldn't.
I still think about Leamington. Like it or not it, was a big part of my life. I remember seeing Chris Farmer and thinking "my god, this is really happening." if it ever happens to you - don't fight it. Accept it. Only then will you see what i've gone through.

Other people have gone through worse things and survived. The thing i remember most about Leamington was staring out of the window from when it was light to when it was dark. And having a shower in the morning.. There was the weekend when i learnt how to use a wheelchair. That was a defining moment for me. I'll never forget it.