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.

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.

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.

Having a stroke...it 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.

Walking and what it meant to me....

Walking is something i can't do. I'm stuck in a wheelchair. I feel like a big part of my life has been taken away from me. Damn this stroke. Something i used to take for granted is missing from my life and i really want to walk again. I would walk for miles; i used to be so active. Now i'm just a shadow of what i was. Things really can't get much worse than this. The wheelchair is electric and means i can move about a bit. It's no subtitute for walking though. There are so many people whu cao walk and don't realise how lucky they are. They really don't.

What else can they do to me to make my life worse than it is? I have one hand that works (which is how i'm able to type this) and somwhere, someone is worse off than me. It's hard to believe. They must be going through hell if they are. I've thought about dying and how much relief that would mean to me. Then i've thought "no!" I can do this. I can live with the pain. Not being able to walk is only an inconvenience when you look at the bigger picture. I should be ashamed at myself for even bringing it up.

You look at the positives and you think well i can see, hear and think. Things could be a lot worse than they are. Oh the positives really keep you going to when you need some reassurance to hang on to. And i do. I mean, i will never walk agaln. Can many people say that and let their thought processes say it's ok? I can remember being able to walk. It felt good. Maybe i should just accept the consequenes and get on with my life?

You don't realise how much you miss something until it's gone. You skake your head in reignation and think why me? That's all you can do. You think "i can walk this corridoor" the grim realisation is that you can't. But there are people worse off. That's ok then.

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.