Saturday, July 22, 2017

Your rights and when they get taken away from you...

Eveybody is entitled to rights. It doesn't matter whether you're straight or you're gay. Black or white, male or female. It doesn't matter if you're old or you're young. It shouldn't matter if you're disabled or not. But it does In my opinion (not that that counts for very much either) you're discriminated against if you're disabled. I was banned from eating toast. I wouldn't mind but I'd been eating it for 3 years at the time so i thought "hey, this is wrong" and decided to appeal the verdict. I won, so the result was that it was overturned. The same thing happened with baked beans.....and toasties....and pastry....and cheesecake.....and wotsits. I am so fed up with the bans that I have decided to take legal action to try and win back my rights. They (SALT) should first prove i can't eat something before banning it. That's all i'm asking for.

i'm still waiting for the case to happen. If i win i won't do things a lot differently. There are certain foods i won't attempt to eat, but there are certain foods i will. I'm not a risk take I know i've missed out on a lot of foods because of the decisions of SALT. They are a terrible organisation who thrive on affecting people's lives. A bit like the SS did in nazi Germany. I'm a grown man and they have made me ill many times. I hate to admit it,. The only reason i'm still here is because of Mandy and Jonny. If i was on my own i wouldn't have cared either way what happened to me.

I know that SALT have a job to do. They don't do it properly is what i'm saying. Enough is enough. it's just a matter of time before they push me too far.
Writing this blog and reading other peoples' blogs has helped me keep my sanity so far, but i feel like it's not enough. Everyday feels like Groundhog Day for me. Nothing has changed and everyday seems exactly like the one before it.

I now know what it's like to be a black man living in America. You'll either be in death row in prison or you'll have a cop using you for target practise. That's if six of them haven't strangled you already. I'm being punished as it is. The last thing i need is a bunch of smart arses telling me what they THINK i should be eating. Do you know what i think? Maybe you should try a few days in MY shoes! That's if you have what it takes.. i very much doubt that you do.

Wednesday, July 19, 2017

When they said they were going to put me in an electric chair...

My electric chair (much like the one above) has been a major factor in me becoming more independant. Without it i would have struggled. Of that, i'm sure. It becomes very tiring to propel a wheelchair around all day. I could cope without one at the hospital in Leamington because it was very flat over there. Here in Hinckley, though, i need something to get me up the ramps in the home. Hinckley is very hilly too. An electric chair is an ideal solution for that. Speeds vary from 1 (very slow) to 5 (lewis Hamilton-speed). There's a place in Leicester that does them and i went there (when i was at Leamington) to get the chair sorted out.

It upsets me a bit to know that i've gone from somebody who used to walk everywhere, to a person who is reliant on a wheelchair to get about. I can't do anything about it. Anyway, the chair is charged-up at nighttime when i'm in bed. In the morning it's fully-charged and ready for me to use. I've become an expert in driving it (despite what Pauline might think) and can handle any situation thrown at me. I don't live in an ideal situation, but we make the most of what we can.

The electric chair is like a part of me that i'd really miss if it was taken away from me and i hope that day doesn't come too soon. The controls are situated where my left hand can reach them. There's a joystick which i use to go forwards or backwards. I can use it to adjust to adjust my seating position too. Obviously, there are things i can't do (like go fishing, for instance). The chair is comfortable to use. It has to be when you when you consider how much i use it. There comes a time, however, when enough is enough (usually bedtime) and you have to be transferred somewhere else.

So far nothing has gone with my electric wheelchair. Well, except for the day it wasn't charging up. This was quite worrying for a couple of days. Until we realised that somebody had forgotten to turn the charger on. Apart from that little scare it's been ok, but you just know that somewhere down the line it won't work. When that day comes i will be the one to suffer. Even though i'm mentally incapacitated ( according to SALT) i will have to find out why it isn't working. I knew i was a genius, but nobody listened to me. Ever!

Monday, July 17, 2017

Camping is a gas...

I've not always been disabled. As a kid i was very into camping. I used to go regularly...

When Going camping with my parents when i was younger paved the way to my going to Cornwall, over 200 miles away, when i was 22. I was only a baby, but one who was willing to learn. I loved the independence of it all, of being able to choose what i was doing, and when i did it. To make the experience perfect you need a two-ringed cooker to take with you. It makes all the difference.

Cornwall was great. The quietness was deafening which was how i hoped it would be. The Cornish pasties down there were massive so i had half of one there and then and saved the rest for breakfast the next morning. In fact, ordering the pastie was the only time i spoke to anyone while i was there. It was the perfect getaway. I travelled back home from St. Ives by train (the same way i'd got there a week earlier).i went on my own, but if you can find someone to go with, so much the better.

There's nothing quite like camping. It gets you away from everything you want to get away from. When you've decided to give it a go it's taking the right equipment with you will make it all bearable. I've been camping many times now. The best things to take with you are;
a) a sleeping bag.
b) an air bed
c) a pump for the airbed.
d) a lamp.
e) a camping camping gas cooker.
i'd say the above are pretty much essentials. it's pointless going away without them. You don't need any really, but take my advice and take all of these with you.

you'll either love camping or you'll hate it. I'm a big fan of it. Sleeping is great; you'll find yourself drifting off in less than no time at all. When you get as bad as me you'll find out where your local camping shop is and spend all day looking through the stuff they're selling. Camping becomes a bug which you can't get rid of even if you want to.

Sunday, July 16, 2017

Meeting Mandy....

It was 1990. I was 30 years old and everything was going to plan. No wife and no kids to hold me back. And neither would there ever be. My life would be lonely, yeah but that never bothered me a great deal. Then in October of that year i met Mandy. My life was going to change forever. We did everything together. No longer did i live for myself. In some ways i'm glad i met her and in other ways i'm not. I was prepared to live out my life as a hermit, but it didn't work out that way. I don't want to pass on my genes if i can help it.

Mandy is my best friend and there isn't anything i wouldn't do for her. I have learned to appreciate her company over the many years we've been together. She has shown how much i mean to her since my illness happened in 2013. Jon (my son) comes a close second.

Jon has proved what a great person he is on many occasions. He's 25 now and i have been missing for most of his childhood. That's probably what i regret most, but these things happen to us when we least expect it. We can't do anything about it. I wish we could.

It's been hard for me, but Mandy and Jon both try to help. So here i am with a wife and son. I never thought it would happen. My mind sometimes goes back to that day in 1990. It just goes to show you what can occur. Never assume anything in life, because it just won't happen the way you think it will. I remember those days at Blackburn Road in Barwell with affection. They were great days. I just wish i knew what lay in store.

I'll try not to make the same mistakes again. Living like this gives me plenty of time to think where i went wrong. I don't like to think too much. That's why i read books. Not all books have been great to read, though. Most have.
Most mornings are the same for me. I miss walking like crazy. Mandy doen't really like computers, but i do. It's changed over the years. Blogging is a great release. Bingo is a great release for Mandy. She'll need a holiday from me soon enough and, even rhough i don't have one she deserves hers.

Friday, July 14, 2017

I had plenty of years' practise before i photographed my first wedding - my niece's (free of charge) Up until then i used my 40d camera and 200mm lens to photograph lots of football matches. You can't beat a bit of live action. My photographs appeared on the front covers of Hinckley United's programmes and it wasn't long before the newspapers came looking for a football photographer too. The Hinckley Times sent me off to Leicester City's ground to cover a Hinckley match for them. It was a great experience for me. I'd taken a few thousand pictures when i decided that i'd like to try weddings instead. I read up on it and realised i needed some new equipment.

For the weddings i brought another DSLR camera (like the one in the picture) and did as many weddings as i could.. A few weeks after finishing them i had a stroke. Suddenly, the hopes of photography i had were dashed. Luckily, i've still got the cameras, but what will happen with them i don't know. You can lead a horse to water, but you can't make him drink it would explain my sons lack of interest in photography. He doesn't feel the same way about it as i do. That's a shame really. You can't force it on somebody. You've either got it or you haven't. I've got so much stuff and nobody to use it. Not many 25-year olds get the opportunity to own so so much gear.

I got good reviews for the wedding and turned the pictures into albums. They went down very well and i'd still be doing them now if i could.
Things happen for a reason. I can't argue with that. Why i couldn't i have done it when i was younger is a question i'll always ask myself. You need a special kind of personality to do it.

I always have a respect for photographers and the work they produce. There are so many talented people out there. My favourite photographs are in black and white and have people in them. I love to see a good photograph. I'm reminded of my niece who wanted a career taking pictures. I asked her if she knew what a DSLR was. "No idea" she said. "What do you take pictures with?" "I use my phone" she said. There's a lot more involved to it than that.

Wednesday, July 12, 2017

Being in a pop group isn't as good as it seems

I spent the early part of my 20s as a member of a pop group. It wasn't as glamorous as i thought it would be and what possessed me to be so stupid as i was to join a group i now put down to my youth. Being a kid, i made some terrible decisions, decisions i'll regret for as long as l live. If i could live my life again i would. I'd probably make some other error of judgement. Of that you can be sure. Collecting stamps would have been better than what i did do. We all make mistakes. I just didn't realise that i was making any. Let's just say i've made better choices than to be a musician.

Let me tell you, first of all, that it's an expensive hobby to have. What are the chances you'll get anything back? Well, once you've played a few gigs, things start to wind down and you're not as popular as you liked to think you were. It doesn't seem that long ago, but the reality is that it was. It was a time you thought would last forever. It never did though. It was hours and hours of practise that came to nothing. I'm not sure what advice i'd give to any youngsters today. Maybe they could give me some.

The best artists have played in front of an audience for years. They've built up a huge following and even though they're not the best musicians you've ever heard, they don't need to be. They have what's known as the 'x' factor. Elvis, The Beatles and The Bay City Rollers had it. So did a lot of others (i haven't got all day though). The Beatles played The Shea Stadium, we played a village hall in Stoke Golding. There WERE advantages to being in a band. (I won't bore you with what, ok i will) Playing in front of a live corowd was something special. Expensive, but special.

So, just to conclude, music is a very expensive hobby. Not everyone is going to succeed at it. You might have a fine repartee in humour and the personality to go with it, but that means nothing these days. The equipment you bought all those years ago is probably gathering dust right now in some second-hand shop as you wonder why you weren't snapped up years go. They were good days (weren't they?) Sorry, but you were awful and shouldn't have bothered.

Tuesday, July 11, 2017

One of the carers said, to anyone who could hear her, "I'm not in the mood for THIS today".
She is a new recruit and totally needed the piss taking out of her.
"maybe you need a new career, luv. Cos i have to put up with this everyday." I said.
If looks could kill she'd be on a murder charge right now.
She was brought right down to earth, though. Where she belongs to be. Not every carer has the ability to smile. Some take things much too seriously.

I NEVER take things too seriously. It's the only time i get to have a laugh. Well that isn't strictly true. I laugh when someone says "no worries" or "to be honest". It's just my sense of humour. "No worries" is a way of saying "it's okay". "to be honest" is so ridiculous. I mean, aren't you ALWAYS honest?
I hate it when the carers whisper. They do it for a reason and if they feel they HAVE to whisper they should go to another room and do it there instead.

They really get on my nerves when they don't think we count enough to have an opinion about anything.
They just do what they want and never ask if we mind. why should they ask? We're only disabled. If you thought you could rely on the carers, you can think again. A lot of the time you're stuck on your own to fight your own battles. That's just the way it is.
Not all carers are the same. I'm sorry for giving you that impression. Some are really to be admired. Asking anything of them is never enough. They really ARE stars and we should always remember that.

It's really hard to think that i'll finish my life in this condition, but i don't let it worry me. I never have done.
Looking ahead, the queen can't have much time left before she says good-bye to this world. I didn't mean that to sound disrespectful even though it sonds as if i did. As to the future of blogging it too must have a bit of a dwindling life-span. Who knows what will happen?

Thursday, July 6, 2017

Learning to talk again....

For most people it will never happen. It can be so frustrating when it does. Projecting your voice and have someone know what you're talking about is what i mean. Trying to have a conversation with someone and not being fully understood, particularly when you've had a stroke, is something that CAN happen. Your speech isn't ALWAYS what you lose when you have a stroke. But when you do, it's so easy to lose your self-confidence with it. You don't always get your voice back either. Well not how you'd like it to be, anyway.

Since 2013 i've struggled with getting my point across. People don't always understand me.
Having a stroke has meant i can't walk, talk or eat properly. I never will. At first, it used to bother me but now i'm used to it i don't mind so much. Being able to communicate with other people is so important. That's why i like to blog. Writing about the things that affect me allows me to be represented and that's all i've ever wanted. I find it helps a lot.

This is something we all take for granted. Imagine how difficult it is for me to be understood, then. I've had the same problem for nearly five years now. It dosn't get any easier. People who can talk don't realise how lucky they are. Imagine what it's like to not have a proper conversation with anybody since 2013. There is so much i want to say.

There is nothing wrong with my hearing and my ability to read. Talking is another matter. That's what strokes are so good at doing. They strip you of your dignity. And your rights. Try to see how long you can go without talking. It won't be long.

Tuesday, July 4, 2017

Back in Hinckley after being away for so long....

I've been in Hinckley since March 2014. It was late in March - I don't remember the exact date, but but it was about 11p pm at night, when i first got there. I was so hungry that i had a cheese sandwich when i arrived. I'd been waiting since 10 in the morning and i'd smoked several cigarettes as well. It had even looked as if i wouldn't be travelling. I was so excited to be leaving Leamington after all of those months. I was going back to the place i that grew up in. Where my family were.

The place i was to be living at was Kingly House. It was a place i'd delivered to years earlier when i was working at MJMorris, so it felt a bit strange going back there now. If i'd known years ago that i'd be living here in the future i wouldn't have believed it. There are lots of things about the future i wouldn't have believed.
The fact that i lived in a hospital in Leamington Spa for nine months, a place i had never been to, was something i could never have imagined.

Going to north Wales in an articulated truck was amazing for me. This was something new! Kingly House was to give me new adventures. All of them involved me and a lot of pain. I spent a week at Leicester hospital, suffering unimagineable hardship. That was the worst experience of my life so far. It was even worse than going back to Leicester with a gash to my forehead. It's a gash that's still there. Even now.

I don't doubt, for one minute, that there are people who have had worse experiences than me. There are a lot of people who have had it easier. It would be ineresting to see how other people would've coped with the situations i've been in and would they have reacted differently.
There will come a time when this is all a memory. In fact whether anyone will ever remember it is doubtful. We don't last forever. This will all be someone else's dream one day.

Monday, July 3, 2017

The stress factor is a killer though

I'm beginning to doubt whether my marriage to Mandy is a good thing or not.. We've been married for two years now and though we get on ok, i would hate it if she ever blamed me for ruining her life. I've got to say, at this point, that any confidence i ever had in myself as a human being has been lost; i've lost the ability to walk and talk; i'm having hallucinations; and am just so miserable about myself in general. My decision to quit smoking had backfired on me - i'm so argumentative with everyone. I'm in a dark place right now. I'm suffering from....the stress factor.

Dealing with stress is so essy when you're 'normal'. I'm not 'normal' though. I can't go for a run or talk about it with anyone. My next-door neighbour does concorde impressions. He's a heavy smoker and to coughs a lot. Now i know how it sounds when Concorde comes in to land. .We don't have anywhere to go to go to to get away from the constant coughing noise he makes. It's disgusting. We don't have anywhere to go - a quiet room - to get away from the constant noise of pop music Trudi likes it loud. From 8am till as late as she can. Not everybody like it that loud. Especially when you're trying to read a book.

It'll take a lot to see the end of me and Mandy. We've been together for 27 years and she helps to destress me. If it wasn't for her help i'd be a lot worse off. I've got my ipad whiich helps a lot. It's brilliant and i wouldn't do without it. Having a sense of humour and taking the piss out of everything i see is something i enjoy doing. Giving up smoking is important. It means i can do anything i want. It takes strength of character to do it. All of the smokers there - there are quite a few - haven't a cat in hells chance of doing it.

But managing stress is a full-time occupation for me . Sometimes, i struggle with it. Cooking used to help me, but i can't do it these days. It's a mental health issue that won't go away. I've seen my friend suffer from it. Stress is something you have to take seriously.

Saturday, July 1, 2017

Having a can happen to anyone.

You don't know you're having a stroke, but you know that something is wrong. You're not sure what it is, but you feel nauseous. All night you've felt it and you don't feel comfortable. You collapse into a heap on the floor. Your 21 year-old son puts you into the recovery position and you hear him tell his mum you're going to be alright. He doesn't know for sure, but he tells her, anyway. He calls for an ambulance. It's a long drive to Leicester. Another five minutes and you'd have been on your own. You're still awake when you get to Leicester, but it's not long before you pass out.

Then they call all the people that matter to you and tell them they will know more about your condition in the morning. If you survive, that is. Come the morning and does Mandy want to turn off the life support?No...she doesn't. We have some agonizing moments together. So bad was the stroke that i have to stay in hospital for the next nine months. I saw Mandy (now, the wife) once a week from then on In hospital, i busied myself at gardening. More often than not i attended music class. We couldn't play any instruments, but we could watch youtube.

Having a stroke was painless for me, but i was out of it. I don't remember much about anything really. It's all a big dream to me. Now, i'm conscious. I've got a brain injury to go with the fact that i've lost my ability to walk. Not all stroke sufferers are so badly off, but i am. I wouldn't wish this injury on anyone. Others will follow me and realise the enormous task i had to face. They wouldn't look look fo the (4.5 years now) challenges that await them. It has been tough. There's no doubting that. But it has made me a better person, i think, and more prepared to deal with the situations that happen.

So, if you see someone in danger of the symptoms of having a stroke. Please act fast. You could potentially save a life. You could make a difference to their life if they don't die. The worst that can happen is if a stroke victim is left alone which nearly happened to me. Nobody knows what's going to happen in the future, but you improve your chances of avoiding a stroke if you ;
a) stop smoking.
b) give up salt.
c) see your doctor about getting a blood pressure test.