Bless Our Hearts: Happy Birthday, My Love

Bless Our Hearts: Happy Birthday, My Love

The early days...

When i was first admitted to hospital in 2013 i was drip fed. I wasn't given anything to eat, i didn't go hungry either. I was fed by tube. It was a strange feeling which i grew used to and it lasted for a couple of months. I wasn't in a fit state to argue with them, even if i wanted to. Eventually, they returned me to eating proper food. I don't remember drinking anything, but i must have had thickened fluids or maybe i was given something to drink through my stomach. I don't remember.

it all seemed so long ago. Eating food again was something which i loved. It felt like i'd never been away, but i had. In the evenings i had shepherd's pie and mushy peas. I had it for three weeks. They looked at me as if i was mad or something and asked me if i wanted to try something else for a change, but i turned them down. It was just unbeatable food. If you love something badly enough you'll stik with it. Meanwhile, Frances introduced me to thickened pineapple juice. I loved it and was thankful that the long and arduous nightmare that i'd been through was coming to an end at last.

Then the hallucinations came thick and fast. They were due in part to my medication and the other part that i was suffering from a brain injury. They were very real though. Scary too. All the time the powers that be felt unable to talk to me. Instead they treated me like a kid when i wanted was to be treated like an adult. I was far more mature than they gave me credit for. It got to the stage that my life was in danger thanks to their condescending ways and failure to be honest with me. I'd like to see it change where they're not allowed to whisper in front of you and that they give a straight answer to a straight question.
That's the least you deserve.

Patients don't deserve to be treated the way that they do. They didn't ASK to have a stroke and they need to know why you're doing what you're doing. I, personally, don't like whisperers. It's very unprofessional. It's all about trust in the relationship you have with the people that are supposed to care for you. Sometimes it works. Sometimes it doesn't.

Regrets...

I don't remember much after the stroke. I had other things on my mind.Not being able to be a photographer anymore didn't seem to worry me like i thought it should.. Ambition left me like a ship sailing into the distance, with the people on board having a bad karaoke night. Mandy looked after my cameras and lenses. She knew how much they meant to me even though I couldn't use them again. Just when i had become good i had it all snatched away from me.

My whole life changed and i had to accept it. All of my dreams were locked away and all i could do was think how it might have been. The stroke left me relying on an electric wheelchair to get about in and one limb (my left hand) that works. But not that well as it happens. People around me have been good. They see i struggle and accept it. I never imagined that i would be like this in a million years.

it's changed the way i see things and that's helped me a lot. If i knew then what i know now and put these ideas into practice i would have been happier. Even though having a stroke has left me helpless i'm happy that i found someone who let me live my dreams. I've had a lot of time to think about it and i refuse to adopt a negative outlook on my situation. It would serve no purpose.

I don't know the answer to life's little prolems - even though i think i do. Having a stroke made me see that. Things could have been a lot worse. Giving up smoking, cutting out salt and having a decent blood pressure have all improved my chances of not having another stroke. It could be fatal next time.

Dunottar castle...before the stroke

Dunottar castle is a place near Stonehaven in Scotland. It's famous because Mel Gibson went there to do some scenes from his film "Hamlet".. He was the biggest movie star in the world at the time. I think about Dunottar when i need some inspiration or when i need something positive to hold on to when i'm getting stressed out In my lfe (more often than you think).
My brother, Steve invited me up to Stonehaven to spend a week with him and his wife and three kids at his house. It was Dunottar castle though that really captured my imagination during my stay with Steve and i spent as much time up there as i could.

It's not really a place you can go to with a wheelchair. The mood up there (with the sea so close) is amazing to witness. I was there by myself which i really enjoyed. It's something about Scotland i'll always remember. I don't worship the sun and the beach that goes with it. I was quite content taking photographs of the castle. This was years before the digital camera was invented.

I had never seen anything like Dunottar castle before. I'm glad that i didn't miss the opportunity this time to see it because i never went back to Scotland again. I didn't know that at the time. Getting to see somewhere that was so desolate and so awe-inspiring was marvellous for me. I'm sure there were others, who came before me, who were enraptured, like me by, what they saw before them. Scotland is very different to England and Wales. England has the lake district and Wales has Snowdonia. Even then, in Scotland, you were allowed to drink all day if you wanted to.

When i got back home to England i couldn't wait to see the photographs. They were taken in a panorama effect. They looked great when they arrived. To think that the great Mel Gibson had been privy to all of this had the 'wow' effect. I feel sorry for those who never have, and who never ŵill, see such a sight as Dunottar castle. Even Hollywood came knocking to see it.

What it's like to be disabled...

Trying to tell someone what it's like to be disabled is like trying to tell the difference between black and white to a blind person. What do you say? How can you explain it so that they can understand you? You can't. It's a horrible feeling when you know you can't walk or talk very well and when you rely on other people to do the things for you that you used to do everyday, when doing it was something you took for granted. Having to deal with suddenly becoming disabled is probably even harder to explain because you know what it's like to have everything at your disposal and then have it taken away. It's not an easy life to live, but depending on how much of a challenge you can cope with, it's not an impossible one either.

The first thing you have to deal with is the amount of isolation you live by. There's just no getting away from it. It will last as long as you do. That could be years. If you're reading this and are disabled you'll know that already. It's not an ideal situation to be in, but you'll live. How long you'll live for is another story, but try to not let that worry you. Worry about how you'll feel every waking moment. You'll hold your head in your hand (the one that works). To all intents and purposes you'll look asleep. Except you're very much awake. You sit in your chair, taking it all in. That's all you CAN do.

My brain is very active. My body is not. I sleep with my knees bent (a result of the stroke) and it takes two people - using a hoist - to get me out of bed in the morning.
I've had to put up with lots of things and will do for the rest of my life. Being disabled has meant i've had to suffer. When i'm doing physio exercises, partixcularly so.
So, what's it like to be disabled? Don't ask, you don't want to know..
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My Rickenbacker years....

I've not been disabled all of my life, but it seems like ages since i was playing bass guitar in a band. Not only does it seem like ages ago, it WAS ages ago. I was young and i followed my heart, not knowing where it would lead to. If i knew now how it would go, i wouldn't have bothered. It was a brand new Rickenbacker bass and I loved it. It gave me hours of pleasure to learn how to play with it. I was proud of owning a Rickenbacker. I had the guitar for years, but my life could and should have been so different. They say we learn from our mistakes. Over my lifetime i've made plenty of them. How different my life could have been if i hadn't.

i've always been interested in playing a musical instrument so when i brought my first guitar, a second-hand bass, for next-to-nothing i was made up. I didn't have any amplication to start off with so i had to borrow my mates until i got sorted out. Before long i had an amplifier. It was so heavy i had to transport it by taxi. I hadn't wrked that out, but you're only young once. I spent as much time as i could learning new songs to play. Iwas so consumed with playing the guitar that i didn't bother with a girlfriend for years. The guitar was my substitute girlfriend, or so i thought. What a mistake that was.

We played gigs all over Hinckley, but the desire to progress any further than we were wasn't really there. We were getting older and it wasn't as much fun as it had been. We'd had a good run though. When you're in your twenties you think you'll never grow up. But you do. Even writing my own song couldn't persuade me to carry on.. The buzz had gone when we got rid of the manager. Playing a guitar didn't seem to be exciting any more.

we went from iMmpressionable 20-something kids to interested-in-something-else kids. It was great when we started out, but things change.. i was going out with Samantha soon after. My twenties was the best time of my life. Things could have been so different though. It seems that they were thrown away as i lived an impossible dream.

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.