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.

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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.

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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.

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