DYSTONIA: HAPPY BIRTHDAY HOLLIE YOUR MY WORLD

Its going to be my partners birthday tomorrow, this is the third birthday we have spent together and we are stronger than ever, we have been threw so much throughout the last 3 years with my condition.

It has been a hard first 8 months of this year with battling with this horrible condition, We have not been out too much to places this year apart from the odd drive out but we don't ever go out to big shops really, Hol though does not mind as long as we call at a pets at home on our journey somewhere to buy something for out Guinea pigs that is the only shop she ever wants to go to and we always want all the animals they have on sale.

For her birthday we are going away for a couple of nights to Wales tomorrow which we are both looking forward to as it gives us time away and time to relax and we love going to new places and driving new roads.

This is only a little blog to say HAPPY BIRTHDAY HOL and I love you and thank you so much for sticking by me threw all these hard times and I will always love you and I promise I will work hard to try and get better and get threw these hard times.

You will have an amazing birthday as you are an amazing person and your the best ever!!!
Love you forever and always.

Follow me on twitter I love reading your messages @myroylelife

DYSTONIA: NHS SPASMS AND PAIN

Well I must say this week has been shit!

I have been in so much pain all week and everything I seem to do its ending in a disaster, the week did not start well as you will know from my previous blog about my appointment at Salford on Monday with my so called doctor which I am beginning to question as I think he is out of he depth with my Boston system as I am the only one who has it there, He has not even checked the setting in over 8 months or tweaked it and I am in so much pain, he just does not give a shit and I am getting so frustrated with the whole NHS system!

Tuesday didn't go well when I fell down the stairs at home my knee is swollen now and is in a lot of pain so obviously not helping my walking as I have pain now every time I walk.

I must admit I am really down this week as nothing is going my way at all as on Wednesday I bust my skin again on my left leg as I fell over once again so I have a big cut going across my shin now which once again is causing me so much pain.

I am struggling to get comfy in bed at night no matter how a lie or sit up my back is in massive spasm's all the time my right side is really bent over and that is causing my back to hurt more than what it usually does.

This week I just want it to end as I am so down in the dumps I just don't know where to turn next it's just becoming unbearable the pain but what can I do Salford do not want to help me so I really don't know how I am going to get back to life which is bearable.

Thank you all for reading my blog and tweeting my @myroylelife

 

DYSTONIA: ANOTHER TRIP TO THE HOSPITAL FAIL

JUST TO LET YOU KNOW I AM PISSED OFF AND UPSET WHILST WRITING THIS!!!

Another blog about the useless NHS you should be getting used to me talking about them by now but I just have so many set backs in my life it just seems it will never end.

No one helps with the 140 mile trip which i have to do but I don't mind I would drive fly anything to get some help for my condition.

My experience today was a shit one people! I got there early like I always do! and I sat there in the uncomfy chairs they provide for around 10 minutes then he came out stared at me and went back into his room. This obvsily didn't please me as I was uncomfy sitting there and there was around 20 people waiting in the waiting room and my Anxiety was so bad and I was shaking.

He came out after another 10 minutes and shouted another persons name, I responded by saying what about me and he said "Oh I didn't know you was here" I had to wait another 30 minutes before I got into see him.

The thing what frustrates me more than anything is that nothing ever happens when I go and see them.
I have been ringing and ringing since November 2014 to complain about my head pain and spasms which are getting worse and worse.

I have had a meeting with my surgeon and he did not say anything really apart from budgets are very slim as I have had so many operations which I think takes the piss!

I am in so much pain at the moment with my head and my back and that is not helping my anxiety as I am on edge as I am crippled over in pain most of the time.

Even when i'm in the house i'm struggling and that is where i am the most comfiest and even that at times is so painful to get around, its just shit at the moment and it makes it worse when the NHS does not give too shits about your health and care as your just a name to them which is wrong you should get treated with respect and with dignity.

The man who I see is the most disrespectful man I have ever come across he is always on his Iphone or scribbling down bullshit on paper and just does not want me to be in there and it just seems that he wants me to go as soon as possible. I came out today so upset as once again nothing was done or my worries were not even noted I am so dissapointed with how I am getting treated and I know I can't just nip to another hospital as there is only a couple what does DBS

THANK YOU FOR READING SORRY IT WAS A LITTLE RANT
PLEASE TWEET ME WITH YOUR NHS EXPERIENCES @MYROYLELIFE

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!

THANK YOU ALL FOR READING MY BLOGS IT MEANS SO MUCH TO ME

TWEET ME @myroylelife I WOULD LOVE TO HEAR FROM YOU

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

To anyone who reads this with the same frustrations about the NHS tweet me @myroylelife

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