DYSTONIA: WHY WONT THE NHS LISTEN

WHY WHY WHY!!!

I am asking this question a lot this year towards the NHS they are a joke when it comes to my care, they say they have no money as I have had 13 operations and it hasn't worked, I think they forget sometimes that it is there fault why I have gone down hill again, if they operated properly and put the wires in correctly in 2008 I would properly only have had 3 but because of there mistake I have been in pain and suffering ever since and now there saying about money.

I get really upset at times with the NHS as it was not me who decided to have my condition or it wasn't anything to do with my childhood it all happened at birth, It really gets to be when people smoke or drink there whole lives then complain when they get ill and next minute there in hospital taking beds and surgeons time up and getting a new liver or heart!

People who are like me which have not got a choice in having a condition should be treated straight away and when we do complain about pain or any worries we should get seen ASAP! People with conditions are brushed aside to much by the NHS and it really pisses me off as we all should have the choice of having a good life and a comfortable life and many of us around the world have to live in pain as someone with a calculator is saying we cost too much.

I hope the world changes about unknown conditions like Dystonia and I know there is so many more that are brushed under the NHS dirty carpet.

I will continue to fight the NHS till I get justice no matter how long it takes!

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DYSTONIA: NHS TROUBLES AGAIN

I have had DBS in me for nearly 10 years now. I have had the best of times and the worst of times, at the time of writing this it is one of the worse times.

I reported my worries to my DBS team down in Salford in November after I had a fall on an icy day and I got a lump on the back of my head, it took over a month for them to see me on the occasion and in that month I got progressively worse.

It is now nearly August and I am still going backwards I have called them and complained so many times and they keep saying everything is fine within the system, I would of accepted that but after my troubles down at Bristol I know my own body and my brain is shouting at me and saying THERE IS SOMETHING WRONG WITH THE SYSTEM!!!

I have expressed this to the team in Salford and one of the reasons why they are reluctant in opening me up and exploring the system is money, It really does frustrate me as I did not ask for this condition nor did I do anything to catch this horrible condition.

I have finally got an appointment on monday which I am not looking forward to as my DBS Docter does not have a clue about the boston DBS as I am the only person who he deals with the new system in everyone else he works with has the Medtronic system in there bodies.

I get so mad when I drive down to Manchester and nothing ever gets sorted or anything gets solved which is such a waste of time plus a waste of fuel which is expensive! I would love to meet someone who works with DBS everyday but that dream will never come.

THANK YOU FOR EVERYONE WHO READS THESE BLOGS

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DYSTONIA: SCOTLAND IS OUR PLACE TO RELAX

Me and Hollie absolute love going up to Scotland on holiday, We both have our hearts on moving into the highlands over the next few years if things go our way in life and we get a good break.

We have been up to Scotland 3 times for holidays and we are never happier than driving threw Scotland, everyone in Scotland where we have been, have been so nice and friendly and we love how accepting they are. We live in Lancaster at the minute and people are horrible around here, Everyone judges and people say nasty things or look at your strange when you walk past but in Scotland they seem more accepting and take you for you and not what you look like or how you walk which is fantastic.

We have travelled nearly everywhere there is in Scotland and we love everywhere we have been, we do a lot of driving on holiday as I can't walk to far but Hol loves being a passenger and taking in the surroundings and I love driving in Scotland the roads are fantastic to drive on.

We have planned our biggest holiday so far in January we are going to 3 different places in 3 weeks and we both can not wait to get up there and it is always more special when we go in January as that is because I asked her out 4 years ago in January and its been the best question I have every asked anyone, My birthday is on the day I asked her out aswel but I always celebrate going out with Hol more than my Birthday as I have never been big on Birthdays, 18th January will always be a special day for the rest of our lives as it will always be the day where I found my best friend and my life partner which will get me through the good,bad and the ugly in life.

Scotland will always have a special place in our lives forever as I asked Hollie to marry me in February this year when we was on Holiday and she said yes and I cried for ages I was just so overjoyed and was one of the happiest days in my life.

Thank you so much for everyone who reads my blogs, please follow me on twitter @myroylelife

Have a great day

DYSTONIA: Sport has saved me from boredom

I have been threw so many operations and bad times throughout all my life and before I met Hollie all I had to keep me sane was sport, I wish I could have played as I know I would have been good I have so much knowledge about most sports. I love the rules and stats but it will always kill me that I can never play a sport because of Dystonia.

I manage a round of golf now and again on my own but afterwards I am aching for about 2 days but I enjoy just walking round steady and sitting on the benches for a breather now and again. That's the most I get out of sport, I watch so many sports and I am so good at reading the game and the statistic I would have loved to get into coaching of some kind.

It frustrates me not to see any disabled sports coaches in sport as you still have the brain to think about things but no one believes that and everyone expects everyone to be perfect now a days.

I got into sport in 2005 when I started having my Deep brain stimulation operations and I had a lot of time to myself and not going to school made time to read the rules and regulations on sports like Football,cricket and tennis and I love watching all them sports now a days.

Over the years without anybody around me I only had sport in my life before Hollie came along and now she is my number one Love.

You need a hobby and a very good hobby when you have a condition like Dystonia which takes up so much of your life as you are in pain or your back is spasming a lot you have to have things to get threw the day and make your life a little brighter.

Thank you so much for reading my Blogs i really do appreciate everyone who reads them, follow me on twitter if you want @myroylelife

DYSTONIA: TIPS TO RELAX

In this blog I thought I would tell you the things I do to relax and chill out. These are the things I do everyone who suffers with spasm's will have there own different things they do which I would love to know what your tips are aswel so comment below or tweet me.

The biggest thing I do to relax is to get into my comfy clothes shorts and a t shirt and to get into bed, I can not express how comfy I am the minute I get into bed I can feel my back muscles relaxing minute by minute and anyone who suffers will know when they are on the comedown from a spasm it is so nice and relaxing.

Another great thing what makes me relax is to go out for a drive I forget about my Dystonia when I am driving once again my back relaxes the minute I get into the driving seat. I have even asked my doctor why I am so comfortable when I am driving and he said people with Parkinson's also find comfort when driving as your brain is so focussed on driving it forgets your have dystonia which is fantastic.

Taking a bath is a fantastic way to relax as it is for most people, the water is really relaxing and you can really feel your spasms calming down when you have a bath. You seem when your in a bath your forget about your movements and you just lay back and relax which is a real comfort after a hard day of spasm's and pain.

Another great comfort for me is talking to my gorgeous partner Hollie when we are just chilling before we go to sleep we always have a little chat about something and that really relaxes me and she is the one person that can also relax me in shops when I hold her hand I feel like I have got someone looking out for me which is mentally so good to stop spasms and jolting.

If you have any great tips I would love you know comment down below or drop me a tweet @myroylefamily

Thank you once again for every single person who reads my blogs it means a lot for me

DYSTONIA: STARTING MY SECOND PRIMARY SCHOOL

I was heavily bullied at my first primary school which was awful, St Joseph's was one of the worst few months of my life everyone turned on me even the teachers couldn't care about what the other little bullies was doing to me. After mum and dad refused to send me back to that school it was time to find a new school.

I think they were nervous about a new school as my condition was getting worse and the doctors still never had a clue what was going on. They decided to send me to a school in Bowerham,Lancaster called St Bernadets another catholic school. I remember my first day I was so nervous it was untrue, my first day I met all my class mates and my teacher she was a little irish women called mrs Lambert she was really sweet and nice which was so much different to my old school as every teacher did not care about who or what I was. The first couple of days I began to make friends for the first time in my life everyone in the class couldn't care about the way I walked just who I was.

I met a pair of twins called Tim and Joe and we got on straight away they were friends with 2 other lads called Joseph and Daniel, we instantly became really good friends and played together. Everyone in the class got on with me and I was one of the popular ones for the first time ever and it felt nice.

The head teacher was called Mrs Hesketh and she was great she was very kind and friendly all the teachers were very nice and welcoming.

I will do a couple more blogs about my primary school over the next couple of weeks as I have a few nice stories about my time at St Bernadets

Thank you all for RT this blog and spreading the word about this rare condition

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DYSTONIA: AM I ON DRUGS - POLICE

It wasn't long after I started driving that I got pulled over one night only because I was out driving late. I knew there was an unmarked police car behind me as I have always been good at remembering cars and number plates haha. I had a feeling this knob was going to pull me over as he was right up my arse.

About 2 minutes later I saw the blue lights flash on so I pulled over at the side of the road. I knew he didn't have any reason to pull me over as all my lights were on and I was taxed and insured. He walked up to my door and I had already pulled my window down in anticipation, this was the first time I had been pulled over so I was nervous and Anxious and with Dystonia when you get Anxious you shake! so the time he pulled me I was already Anxious and a little nervous to what I had done.

He came to my window and the first thing he said wasn't Hello or good evening it was, Have you taken anything tonight, I replied and said what sorry as I really didn't understand what he was asking me to be honest then he said it. HAVE YOU TAKEN ANY DRUGS TONIGHT!

I replied very quickly as I was very offended with no I have a condition, his next line was can you take a seat in my car please being blind to what I had just said. I carry a card around with me in my wallet explaining what I have in my head and chest so I showed him this and I think he knew then I was being honest. I explained I never drink or have never taken anything in fact I have never even tried a cigarette!

He was desperate to pull something up on me when he asked to have a look in my car but eventually he had to let me go without getting me for anything. As I drive away I thought how ignorant is the world that the first thing you think when you see a head shake is that oh is he or she on bed.

The world needs to change its attitude against conditions as people have them and that is never going to change. People are fine to ask questions but you should never ever judge someone to think they are pissed or on drugs!!!

Thank you all for RT this blog and spreading the word about this rare condition

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