DYSTONIA: MEETING THE GIRL OF MY DREAMS

In this blog I am going to write about my gorgeous partner, her name is Hollie. 

I am being honest when I say she has saved my life and made my life complete. We don't have much money or we can't do a lot of things couples do at 21 and 20 but we just work! 

I don't have a clue sometimes why she is with me when I get pissed off with my condition and get into moods when I am shaky and I break something or hurt myself (Which is a lot of the time) 

We have been together for 2 and half years and it has been the best 2 years I have ever had. My condition is at one of the worst stages it has been but meeting Hol has just made everything so much better. I now have someone who is not bothered if I am having a bad day or having a shaky day she just does not care and that is why I love her so much! 

I was so nervous when I met her for the first time as my condition was quiet bad at the time so my confidence wasn't good at all. I remember driving along Morecambe promenade and I just was driving in silence praying my Dystonia didn't play up and I wasn't too shaky for when I picked her up. 

I arrived outside her house and my nerves was like nothing I had ever had before but it was more like butterflies then she appeared from her door, from the moment I met her I knew she was the one for me and my nerves just suddenly vanished as she got into my car. We went for a drive for our first ever date as I couldn't go into anywhere to have a meal or go to the cinema which I felt sorry for her as I knew everyone our age did things like that. I did explain my condition during text as I was too nervous to tell her face to face as I was so scared of what she would say. I COULD NOT BELIEVE IT WHEN IT DID NOT BOTHER HER!!! I was the happiest man in the world when she text back and from that moment I knew she was the one for me. 

She is just so amazing and I could not live without this women in my life and I don't know if she reads this but can I just say thank you Hol for changing my life from Shit to perfect, All because you have come into my life 

I LOVE YOU FOREVER AND ALWAYS 

FOUR KISSES XXXX

DYSTONIA: Going To The Dentist Is A Real Task!

Today I had my dreaded dentist appointment, many people don't like the dentist but I get anxious about it for days and days. I woke up this morning and I was worrying that much I was sick, My tooth was in agony so I knew I had to go.

From the nearest car park it is a 400 yard walk which is like walking 5 miles for me I was shaking and my back was in a severe spasm. It took me over 10 minutes to walk that distance and once I had managed to get to the door of the dentist I was sweating.

My head was shaking so bad and I was struggling to get my words out to the receptionist. I struggled as I walked up the stairs worrying about how many people was going to be round the corner in the waiting room waiting to stare and look at me as I sat down.

I finally got to a chair and I was so uncomfortable it was painful. I was waiting for around 15 minutes which seemed like about 2 hours. My name got called out and I struggled to walk through to the room, Once I got into the dentist chair I was shaking and getting so anxious.

My dentist has known me for many years so he is very understanding when it comes to my condition, I really do feel for him when he's working on me as it cant be easy when your head is moving all over the place. It took over half an hour to do the work in which he said he usually does in around 10 minutes but he was very happy and calm about the situation.

Please may I take time to thank you for reading my blog I don't get many view's but I hope one of you gets help or happiness from my blog:

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DYSTONIA: Trying To Live Life To The Max!

I have always tried to look positive throughout my life with Dystonia which sometimes is very hard to deal with when there is some very horrible people of there in the world.

I have always been on my own throughout my childhood I never really had any friend's but I was always happy as I taught myself to be happy with my own company, don't get me wrong I often get fustrated with the world and scream out loud WHY ME why not the person next door or the person who has just stared at me but every time I think that there is something in my mind what says be proud and embrace the way you are.

Maybe it is easier when you are born with a condition so you adapt as time goes by and you learn to do things your way. That in itself is sometimes a embarrassment as you adapt different to all the rest so everyone looks at you strange but in the back of your mind that is the right way to go.

Anybody who walks, talks or looks different to everyone else is not disabled they are just unique, Personally I strongly believe no one in this world is disabled and every person has a part to play in this world and everyone needs to believe in there selves and if you want it go and get it!!!

I just want to say thank you for the small amount of people who will read this, I don't get many views but the ones I do get really makes me happy and I hope you are enjoying my blog.

DYSTONIA: DEEP BRAIN STIMULATION OPERATION

DYSTONIA: THE BIGGEST OPERATION EVER!

In June 2006 my life changed forever, I met Professor Gill down at Frenchay Hospital in Bristol who was a Neurologist and offered me a life changing operation called Deep brain stimulation. This was a huge risk as I was only 12, I must admit i was a little nervous but I was looking forward to the 3 months I had off school haha.

I remember my dad taking me down on the Tuesday morning with my operation planned for the Wednesday morning. The operation was going to be over 2 days, On the Wednesday I had to go under for 5 hours so they could fit the frame which was a series of screws bolted into my head, I remember waking up from the first surgery and I couldn't move my head as there was a metal frame around my head. I remember that night like it was yesterday it was the most painful night of my life, you could feel the bolts screwed into your head and I didn't get any sleep I was exhausted but I was looking forward to getting the 8 hour operation over and done with on the Thursday.

Thursday afternoon I woke up in recovery and I felt like I had been hit by a truck the pain was so intense I really can not begin to tell you how it felt, I was on morphine for days as I really believed the pain would not stop. The only thing what kept me going was getting home and watching the cricket all summer and trust me when you feel in that much pain you need to set yourself a goal to keep you going.

I remember getting through the weekend and I was desperate in getting home I stopped taking any pain killers to try and get home quicker as I strongly believe you always recover better at home.

A week after the operation I was discharged and I was on the way home I never really had much to eat for the full week in hospital as I hate hospital food so I was starving so first stop was McDonald's I loved my dad so much at that second when that food was bought haha I shoved it down my throat so quick it was literally one of the best moments ever!!!

The recovery was very slow, I couldn't believe how much i slept throughout the next 2 months I was falling asleep every couple of hours which was so strange to get my head around but I felt so weak for so many weeks. I managed to stay awake for most of the cricket throughout the summer which I enjoyed so much!

I will be starting to post more about my life in the next few days and weeks so keep a look out for new blogs.

THOUGHT OF THE DAY:

NEVER LET ANYONE GET YOU DOWN IN LIFE!!!

DYSTONIA: THE STARES AND THE COMMENTS!!!!

DYSTONIA:

Dystonia is such a hard condtion to explain to you, you have some fantastic days then you have some really shit days...I'm being honest.

It's hard when you go out in public and people stare and talk behind your back about how your walking or the way your sitting in a chair. When people look at me and I catch them I feel embarrassed about the way I am but in the back of my mind I think fuck you but deep down every stare hurts and it will always get to me.

When children stare you have to understand that they are young and probably don't understand what is right and wrong but what really gets me upset is when adults stare and talk behind your back. People are so ignorant when it comes condition's at the end of the day everyone is he same we all have feelings!!!

If you are one of the people who stare I understand because it's a natural thing to do and everyone stares once in a while I admit I have stared but the minute I do I hate myself as I know what it feels like to be stared at!

The condition is so complicated and is so unknown to even the experts well so called experts, I have a very bad experience with doctors and hospitals and I will write a blog or two in the next few days about it.

I will be writing more often now as I want to get back to writing my feelings down.

Please comment if you have had any experiences of people staring comment I would love to hear from you.

DYSTONIA: FIRST WHEELCHAIR AND REACTION'S

I was five when the inevitable happened, I had to accept I could no longer walk anywhere outside the family home, I could hardly get up and down the stairs some days so that was the start of the wheelchair years.

   I remember my first ever wheelchair measuring at Lancaster Royal Infirmary, I felt so defeated whilst getting measured up for this chair, the woman what was doing all the measurements was such a patronizing person she was saying stuff like " so why can't you walk " and " you looking forward to your new wheelchair ".

To some people reading this you might be thinking this was a freedom ticket and I could finally get out and go places with my family but that was the last thing I was thinking!

It took 8 weeks for my wheelchair to come I did not pick any cool colors or any items which you could have added i just chose a standard black wheelchair, why would I want to stand out as i already stood out as I wasn't walking like the rest of the place.

Half a year after getting my wheelchair we went on holiday to Cornwall,Devon for a week and by then I could not walk even to the end of the drive way so I was wheelchair dependent. My dad always pushed me round I don't think my Mum particularly liked pushing a wheelchair but my dad did not mind as long as we was together.

The worse thing I have ever heard and it is still the worst thing I have ever heard was when we was on that holiday in the town center when this old women started shaking her head and tutting at me, By then I was shaking and was moving around a lot and i was getting more uncomfortable sitting in my wheelchair and I will always remember she came up and said to my dad "Do you really think someone like that should be out in public" My dad hit the roof at this women and loads of people started to notice there was some commotion and after a long argument things cooled down and she walked away. I would love to meet that woman now and give her a real piece of my mind to what I think of her.

And that was the first of many comment's and stares I was about to get for the next 7 years.

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DYSTONIA GETTING WORSE AND SO WAS THE BULLYING: AGE 4

The bullying was getting far worse every day i struggled into school by this stage my left leg was also trailing behind me, to be honest my full body was trailing towards the end of St Josephs as i was emotionally tired of all the hurtful comments i was receiving every hour of every school day.

I could not even go to the teacher anymore as even they thought i was making all this up and was just doing it for attention at school. Who in this world would get bullied just for the sake of it ?

Certainly not me i was always a happy child and all i wanted to do was to play with my buses and trucks and any other kind of vehicle but when the thought of going into that Horrible school each morning sent me to tears and that was the first time I knew what fear was.

I remember the school disco I went to at St Joseph's and it was terrible it was my first experience of loud music and flashing lights and I was so scared all the way through it, My main goal was just to get through the 2 hours without the bullies seeing me and getting home! I had to go as it was in school time, the walk down the the school hall was down about 100 steps as our school was built on 2 different sites which was awful every time we had to go down to the hall for anything as by this stage i was really struggling to walk even a few yards. I always will remember walking down them steps to the disco that afternoon and falling over, I was at the back of everyone as i was the slowest and i fell with a almighty thud down to the ground I scraped all my hands and my knee, No one even knew i did it and I didn't cry as by that stage I was used to falling over all the time as I was getting very unbalanced.

About half way through the disco I remember starting to cry, I think I just had enough of it all and broke down. I even remember what song was playing at the time it was Cher Do you believe in love: Ever since I have always held back the tears when that song is played as that moment was one of the worst moments in my life.

I WILL BE BACK WITH ANOTHER STAGE IN MY LIFE VERY SOON:

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