Friday 11 December 2015

DYSTONIA: BLOGMAS #10 THANK YOU DYSTONIA SOCIETY

WELCOME TO A VERY LATE DAY 10 BLOGMAS:

This is going to be a little short Blog today as I just want to say a huge thank you to Angie at the Dystonia Society.

I rang her on Tuesday a little annoyed about what is happening with my care down at Salford and expressed my concerns to her via a answer phone message.

Yesterday at about midday she rang me back and I told her how I have been getting worse and I am struggling to do very simple tasks and walking around the house, I also told her about the pains in my head near the DBS wires which can cause me to be in pain for hours and this is happening a lot at the moment, It's so frustrating to get threw to anyone so after 2 weeks of trying I rang Angie and reported my problems and my worries.

She is very good and a great professional and I must thank her as she told me she would ring Boston Scientific herself and try and get hold and try and tell them my concerns. Angie rang me back within 30 minutes and said she has sorted Cheryl to join the meeting on the 21st December down at Salford Royal Hospital. I now have someone I can express my concerns to other than the useless Monty as he is very disrespectful towards me and does not care about my needs and pain one bit. He still does not have a clue how the Boston System works and I get very upset when I travel down there and nothing ever seems to get solved.

Thank you to Angie for her massive help and thank you for always being on the other end of the phone if I need help getting threw to the doctors.

THANK YOU FOR EVERYONE WHO READS MY BLOG

Thursday 10 December 2015

DYSTONIA: BLOGMAS #9 SALFORD HOSPITAL AT IT AGAIN

SALFORD HOSPITAL AT IT AGAIN!!!

Sorry day 9 is a little late we are still struggling for broadband and the power has been very on and off, I think it's getting back to normal now till I turned on the news and Cumbria has been hit again by the river banks bursting for the second time in a week. It's awful for people in Cumbria I know quite a few people who live in Appleby and Carlisle, I hope the government steps in and helps everyone out and gets everyone back on their feet as soon as possible.

Today's blog is about Salford hospital again!

Another rude secretary answered the phone yesterday when I rang Salford, I hate ringing his secretary as she is the laziest and most rudest I have ever spoken too. She just wants to get you off the phone as quick as possible. I have an appointment on the 21st of December at 4pm which I am dreading as he's not a very helpful man, these problems have been ongoing now for over 13 months and are far from resolved.

They have now said they are organising a meeting with all the people involved in January but I am not invited to the meeting which is very frustrating. I am glad and worried at the same time as loads of different things are going around in my head, the meeting must be bad news as they would never organise a meeting over nothing.

I will keep you all updated on the joke on the NHS and fingers crossed we will get an outcome soon!

THANK YOU VERY MUCH FOR EVERYONE WHO READS MY BLOGS

FOLLOW ME ON TWITTER @MYROYLELIFE

Tuesday 8 December 2015

DYSTONIA: BLOGMAS #8 SCOTLAND IS COMING

The power once again has been limited today in and around Lancaster which has made things difficult again to communicate and get online, the rain has eased off for the past 48 hours which is a blessing for the roads and the bridges have re-opened so traffic is back to normal now.

After the last few days I can not wait to get away in January back to Scotland we have booked this time for 3 weeks, we have only ever been for a week at a time so it’s going to be strange not thinking about packing back up on the Friday night ready to check out on Saturday as we are stopping at one of our favourite places for 2 weeks then heading to another house we have rented up near Wick, I hope the snow keeps away as I hate driving in snow and I have never drove in snow in Scotland before. 

We are also going back up 2 weeks after we get back for another 2 weeks in February which once again we can’t wait for. It is really a matter of when and not if about moving up there now and fingers crossed our dream will come true this time next year. Both me and Hollie love it up there and every time we go up it is getting to feel more like our home to spend the rest of our lives together up there. 


The biggest problem we have and it’s a nice problem is we don’t know which part of Scotland to move to, we want to be not around houses and have neighbours. I would also love a bit of land to walk around in with no body around to judge how you’re walking and no one will know if you’re having a bad day or a good day which I just can’t wait for!

Monday 7 December 2015

DYSTONIA: BLOGMAS #7 MORE POWER FAILURES

Sorry these blogs today have been very short, we have had no power once again tonight till late as the generators stopped working before for around 5 hours which once again put everywhere in complete darkness.

It's back as I type this at 11pm and fingers crossed it will stay on now till they get the sub station back up and running.

The devastation around Lancaster is unbelievable, I am still in shock after driving threw the city centre this morning and to see where the water has actually has come up to is amazing it has just wiped right threw the middle of town.

The good news is the bridges have both opened now so at least the traffic will be a little easier as you can get in and out of Lancaster easier than before. The worry is towards the end of the week the rain is set to come in again and there is weather warnings in place.

My Dystonia is not the best at the moment as I have not slept much since Friday night as we have been up most of the time. Dystonia is very hard to cope with when you have little sleep you become very edgy and aggravated at the slightest thing and it's not nice for Hollie sometimes as I get into little moods but I don't mean to. I am planning on going to sleep the minute this is posted and getting a better nights sleep (fingers crossed)

I will be back up writing better and longer Blogs hopefully tomorrow.

Take care and lets hope all the flood victims get sorted ASAP!

FOLLOW ME ON TWITTER @MYROYLELIFE

DYSTONIA: BLOGMAS #6 LANCASTER NO POWER AND FLOODED

Sorry I couldn't post a blog yesterday, I live in Lancaster in the UK, Some of you will have heard and seen reports on the TV and radio about our area being flooded.

Saturday day time it did not stop raining for a single second, it wasn't just the rain what was causing problems it was the wind as well they said on the radio we was having up to 80MPH winds and outside was very very wet!

It was very bad outside but we was safe and warm inside the house till around 11pm on Saturday night when all of a sudden all the electric went off and that was it till this morning, the bridges to Lancaster were both closed as a container had floated from somewhere and smashed into the bridges and caused damage so the traffic was just mayhem! 

About midnight that same night we discovered a leak in the ceiling in the hall way, it was leaking in as the rain was battering the front of the house that was it was coming threw the ceiling, we rushed to try and mop it up and cause to further damage but on Sunday morning we had to take the ceiling down and the damage had been done! 

Being without power for so long was also worrying for my Boston charger which charges my Deep Brain Stimulator up, as I type this it is still charging up and I hope that it has not been damaged as it has not been on charge for a full 36 hours.

Luckily they have brought generators in from around the country to get the power back on as on Sunday morning they had said it might not have been on till Wednesday which would have been even more of a nightmare. 

This weekend will always be remembered as one of the worst ever around these parts of the country and my thoughts go out to all the people who have lost their possessions on their homes as part of the floods.

I will be uploading another Blog later today as this one I am counting as yesterdays 

Saturday 5 December 2015

DYSTONIA: BLOGMAS #5 SLEEP IS HARD

Welcome to Blogmas day 5 I hope you enjoying reading theses daily Blogs:

DAY 5 SLEEP:

I am finding my sleeping patten a bit strange at the moment, I am not going to sleep till around 1am and getting up around 7am so I am getting around 6 hours sleep a night, I know this isn't enough but I just can't get comfy or I get things running threw my mind and start thinking about things.

Other night I fell asleep at 8pm and had a couple of hours woke up for an hour then went back to sleep all in all I had about 11/12 hours sleep and I still felt the same the next day. The way my body is in spasm all the time at the moment it's so hard to get calm and comfy and when you wake up the next morning it feels like you have had a full work out.

When I wake up my body feel's so tired I can hardly move my legs some mornings I am like an old machine which needs a few minutes to get started in the morning, I get frustrated how I am at the moment as I dread waking up and having to deal with the tired legs and all the ache's and pains. Once you get going you get a bit more relaxed but then suddenly something happens and you get a big twinge or a spasm and you're back to square one and you're in pain and aching again.

I am not able to do much at the moment which is frustrating and I am trying to keep busy around the house as I am not going out much as I get so tired when I do most things, There is a red weather warning around the north west where we live today and the weather is awful today the wind and rain is terrible so today is just a day to film a few Fifa video's and chill out as I don't think it's stopped raining in a week or so.

I am enjoying have a little write everyday during Blogmas and I have many more little blogs to come


Friday 4 December 2015

DYSTONIA: BLOGMAS #4 FOLLOWING IN MY DAD'S FOOTSTEPS

Welcome to day 4 of Blogmas I hope you're enjoying reading my post's.

My dad has always worked very hard and I have always respected the work he has done, I have always asked him about the jobs he's on and what he is doing the next day, He has always worked in Civil Engineering and when I was growing up every chance I could get I was in the van with him and off to work with him.

I used to love seeing all the machines and seeing him at work, he's never missed a day of work and I've always respected him for that, I have always wanted to work with him and beat his achievements but I know I will never be able to work in that line of work as my condition, it makes me a little sad but i'll always have the memories of going to work as a child with my dad and seeing everything, even now I look at his emails about the drawings of jobs and his projects of jobs.

My dad took me everywhere as a child even when I was in a wheelchair he used to always put it in the back of the van and take me everywhere he went, I never really had the chance to go out anywhere but when my dad offered the chance to go to his work or just out to fill the van up I used to jump at the chance.

I have learnt a lot from my dad about the railway and Building works not that I will ever be able to do any of the work he has done but I have the memories of great days out as a child which I thoroughly enjoyed.

Brilliant memories and brilliant times as a child.

HAVE A GREAT DAY FOR WHO EVER READS THIS.

FOLLOW ME ON TWITTER @MYROYLELIFE

Thursday 3 December 2015

DYSTONIA: BLOGMAS #3 ANXIETY AT CHRISTMAS

Having any condition is difficult I can only write about my condition which is Dystonia, I have Generalised Dystonia which effects several parts of my body, my left arm does not work that well and I struggle with my grip whilst holding or carrying anything. My right arm is about 50% ok haha I relay on it for everything as I look at myself with just one arm.

This is a struggled coming unto christmas as more people go into shops and rush around which means more stress when packing bags in supermarkets or shops, the more you think about it the more you start to shake and get into body spasm's and christmas is just a nightmare for shopping.

I am not the greatest fan of christmas as people over the last few years people have forgotten about the spirit of Christmas and are just obsessed about buying things and getting the perfect present, this causes mayhem on the streets and in shops as people go crazy to get to the tills and get the best things.

I buy most things online mostly on Amazon, I have prime delivery and its just a blessing at this time of year as you can order something at 6pm and you have it the next day straight to your door which means you don't have to go to the shops and wait in queues and worry about all the haters what stare and look at you whilst you walk.

Supermarket shopping is difficult at the best of times but at this time of year my Anxieties go through the roof! You can buy anything within the big supermarkets now so people just go there and fill their trolley's with pure crap this time of year! You have probably guessed by now I hate this time of year not because of christmas but the people who stress out and just go absolute mental over shopping.

My advice is to stay at home and shop online and the next day let it arrive at your door and you don't have to feel anxious :)

Wednesday 2 December 2015

DYSTONIA: BLOGMAS #2 HAIRCUTS

Haircuts:

Haircuts might seem just the normal thing in life but when you have a condition like Dystonia it makes a simple trim into a dreaded trim.

I have always struggled with getting my hair cut for as long as I can remember, when I was very young I had someone come round to my home to cut my hair as we all thought it would make the process a lot easier let me tell you it didn't! Her name was Louise and she's gone onto opening her own shop and is doing very well she still recognises me if I ever see her and says hi. Sometimes I used to have to get into a headlock to get my haircut and after the cut my body was exhausted and it took hours for my body to come out of spasm. My next barber was Charlie a wonderful man with lots of patience for my spasms he had Skerton barbers and my dad had been going there for a while before he started taking me, it was very hard sitting in a barbers chair every time it moved another shake came on, it took almost twice as long as anyone else who had theirs cut, we always made sure we was there for around 15 minutes before it opened to try and get first in, on some occasions sometimes there was already a couple of people waiting outside, when that was the case my heart just dropped I could feel my self startling to get spasm and starting to sweat, only in the last couple of years have I realised that these were in fact Anxiety attacks but at that age I had never heard of such things, this carried on for about 6 years every couple of months the dreaded hair cut and after a week at school and my body just shattered I just couldn't handle it. When I was around 11/12 my mum started cutting it but by that stage I had my deep brain stimulation inserted and now my head had scars and wires and bumps on it, she did her best but the patience was never there like most of the time.

I only started to get more relaxed when Hollie came into my life and she started to cut my hair and wow she does a fantastic job she keeps as cool as a cucumber whilst I move around and Moan about this scar and that wire she just take no notice and gets the job done and she really make getting the simple task of getting my hair cut actually simple again!

THANK YOU FOR READING AND FOLLOW ME ON TWITTER @MYROYLELIFE

Tuesday 1 December 2015

DYSTONIA: BLOGMAS #1 STILL SHAKING

Sorry I have not blogged in a very long time, to be honest I have been in a defeatist attitude for a while, My condition is getting worse every week and I still have no help from Salford Royal and they have still not written or rang about an appointment I have rang and rang and I can't get any response.

In the last few months there has been a few changes and I will be blogging every day up till Christmas and I hope everyone who reads these blogs are not getting stressed about the build up to Christmas.

My back is in a lot of pain every single day at the moment, I just can't seem to get comfy in any position, I am sleeping a lot then sometimes I can't sleep at all haha.

I will be writing more detailed blogs other the next 24 days but I thought I would just ease back into it by saying hello.


Saturday 22 August 2015

DYSTONIA: ASDA STAFF ARE SO RUDE

There are many supermarkets in the UK and I have been in most round where I live but ASDA have disgusting workers they are so disrespectful and they look at you like you are strange or weird when you walk past them a little bit different to the other person.

I was in a little one in Morecambe the other day and I was not having the greatest day so I was a little shaky, I was with Hol and she always tries to calm me and hold my hand, the minute I walked in I spotted she was staring at us but we carried on to get some bits.

She was on the self service bit just standing around doing nothing! (apart from staring) I was starting to feel so uncomfortable and I was starting to shake and spasm more and more as you do when you feel under pressure, Hol my partner was getting angry aswel as she spotted her looking aswel and she wanted to say something to her but she didn't as she just wanted to get me out of there.

The biggest thing that annoys me if that I was in a shirt and suit pants so I was smartly dressed and there was people in that shop who smelt or dressed scruffy and she was fixed on staring at me as I walked a little funny, it's shocking how a 40 odd year old is so disrespectful and makes people feel so upset and uncomfortable.

The other supermarkets I go to don't stare or judge me but ASDA always has one or two members of staff who are really ignorant and treat you like shit! they really do need to be taught how to treat members of the public.

Every single person in this world has a flaw or something they don't like about themselves or feel a little anxious about themselves and nobody should judge people in this society and I feel so strong that people should be treated all the same.

I hope you enjoy reading my blog it might not be the best of writing but I just like writing my feelings and thoughts and thank you so much for taking time to read it.

Message me on twitter if you have had a moment in a shop @myroylelife

Monday 17 August 2015

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

Thursday 6 August 2015

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

 

Monday 3 August 2015

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


Friday 31 July 2015

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

Wednesday 29 July 2015

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

Sunday 12 July 2015

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

Wednesday 8 July 2015

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

Tuesday 23 June 2015

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

Friday 19 June 2015

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

Follow me on twitter @myroylelife

Monday 15 June 2015

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

Follow me on twitter @myroylelife

Friday 5 June 2015

DYSTONIA: MEETING PEOPLE FOR THE FIRST TIME

Meeting people for the first time is something that makes me shit myself! I hate meeting new people no matter who they are I get so scared and nervous that my dystonia just gets to an unbearable level of pain, my back and neck spasm up so bad I can hardly stand.

Everyone who has a condition will know what I mean about having a bad day, everyone in the world has a bad day but when you have a condition like dystonia you rarely get a good day.

I get so frustrated when I have a few really bad days in a row as it limits everything you can do. I even struggle with simple tasks like putting my socks on. It feels like you don't want to carry on with life sometimes and you just want to crawl up into a ball and just vanish but no matter what you try to do you need to realise that no matter how much you wish,pray or hope you have got this horrible shitty condition and nothing will get rid of it!

I am not saying everyday is a shit day as sometimes you wake up and feel no pain and you can have a great day until you spot someone staring or whispering then your day in completly ruined as you immeditly get a spasm down your spine and then comes the spasms for the rest of the day.

I have a twitter page if you are interested @myroylefamily

Thursday 4 June 2015

DYSTONIA: WILL I EVER NOT FEEL PAIN!

I sit here writing this blog in pain, my back is at one of the worse stages of spasm's it has been in for quite a while now, I have been getting worse again in recent weeks which is so heartbreaking as it seems like I have a couple of ok weeks then the Dystonia inside my body thinks NO YOU ARE BORN WITH PAIN SO BE IN PAIN!

I can't really think of many times I have not felt pain within a few days, Everytime I go out for the day or even go to the shops I am always in pain my back muscles always start to spasm then the time you get back home all you want to do is get into bed and rest and that is what I do. I really feel sorry for Hollie sometimes as we are only 20 and 21 and she deserves to be treated to nice nights out to the cinema or out for a meal but I really struggle doing things like that. Hol says she is fine without doing things like cinema and meals but I want to do them deep down but I just physically and mentally can not go into a busy restaurant. I feel so down sometimes and really depressed but hol always picks me up and gets a smile back onto my face, she really deserves a medal!

I sometimes google ways to ease the pain or just even to be more comfy but nothing I ever try does anything to ease the pain of Dystonia it is like a devil is inside of you and the more you try and fight it the more it inflicts pain onto your body!

I take a lot of pain killers but I really do not know why as nothing ever eases the pain so you sometimes think what a waste of time. I really do wish I could just live one day without one spasm or neck twitch but deep down I know that is never going to happen no matter how much I pray for it.

Please check out my twitter @myroylelife

Many thanks for everyone who takes time out of there day to read my blog it really means a lot

Wednesday 3 June 2015

DYSTONIA: My Tips On Anxiety

Anxiety is one of them conditions which not many people understand or notice. It is not a physical one so no one can understand when you explain your worries or problems.

I have googled so many time how to fix my problem or tips to improve to problem but every single tip on places like the NHS website is absolute shit! I'm sorry but its true the people who write these articles for websites and books 99% have never had Anxiety or any medical conditions. I really do think these tips and stuff are just copied from books and half of that is bullshit!

I will be honest and say I don't have a clue how to solve Anxiety and these little tips might not help you or you might not feel comfortable with these but these are the ones I try to do to stop people hating on me and saying nasty comments behind my back.

1. I always when i go out in public i always try and dress smart. I always try and wear shirt and pants where ever I go, myself always think people look smart when they dress that way so that's why I think I do it. It should not matter what you wear in public and deep down I know that but it really does help me combat the stairs and the talks behind the backs.

2. Going for a drive always relaxes me and I always feel so calm and relaxed when I am just driving I forget I even have Dystonia and that is just the best feeling ever, I feel pain in my back just from walking from my front door to the car but the minute I get into the car and turn the key everything what is painful just disappears and I would love to know what that feels like for a full day but I know I will never feel what relief is for the full day.

3. I don't have any friends at all I have not even got 1 friend, Hol my partner tho is the greatest person I have ever met in the world I sometimes think what did I do before I met her as when I am not with her now I am a wreck. When I out in public with her she gives me so much confidence and I feel like I can be proud in public as I have this Gorgeous girl on my arm which makes me so happy every single day!

4. Always be yourself, I can confess to not doing that for years but since meeting Hol i think I am getting better at just not faking who I am and just being accepted for what I have got. Everyone with a  condition will get mad and pissed off with themselves some days and will even hate themselves sometimes but it's the days where you have a good day is the days where you have the cherish and be grateful for being alive.

Please follow me on twitter @myroylelife I am very grateful for all your messages

Monday 1 June 2015

DYSTONIA: MEETING MY NEW FAMILY

I have to confess I have never really been a family kind of guy till I met Hollie, My dad worked away a lot when I was a teenager and I didn't live with my mum so I never really understood what a family was to be honest.

I had to just get on with it on my own and if I was struggling I just had to deal with it on my own, I never ever thought I would ever get a girl friend until Hollie came into my life and changed everything, She was so caring and gorgeous I couldn't believe my luck to be honest I fell in love with her from the minute I met her and I knew she was the girl for me.

She was my first ever girlfriend so I had never experienced getting to know a brand new family and Hollie is very close to her mum and dad and I have never really been close to anyone before so it was all new to me all this family stuff.

I remember the first time I met her mum and dad (Carole and Stewart) or Jim and Barbara ( I will tell you about that soon ) they went away on holiday so I went to Hols to stay with her, the day when they were coming home I was going to leave before they got home as I was so nervous in meeting them. I didn't get that chance as I was just about to go move my car and in walked Carole and said "where do you think you're going" and I was off back to sit on the couch.

I was so nervous for the first half hour or so and I could really feel my shakes so I knew everyone could see them aswel. After a bit I started to relax a little as we started chatting I knew Hol had told them about my condition so they knew how I was but it's like anyone you meet at first no one knows what dystonia is.

I couldn't believe how at ease I felt after a while and I started to talk more. We stayed for well over 2 hours just talking Hols dad talked about what he did as a job which I found really interesting. Carole was fussing around the kitchen asking if I wanted anything but I was still too nervous to have a drink in front of them as I knew I would be shaky.

I will tell you more about my new family in the next few blogs :)

hope you are enjoying this blog drop me a comment or a tweet @myroylefamily

Sunday 31 May 2015

DYSTONIA: ANXIETY AT IT'S WORST

I have had an issue with meeting new people and going to new places a challenge all my life but over the last few years it has got worse.

I have always been really concious about the way I walk and the way I move as I'll be honest it is different to most people, I lean to the right and my balance is awful at times which causes me to be very clumsy and when I am having a bad day my anxiety is so bad.

When I have to go somewhere and I know about it a few days in advance I start thinking about it all the time, which way am I going to drive to the destination and how many people are going to be there and how big will the crowds be.

I even evaluate supermarkets, before I go in as I drive into the car park I am scanning for the nearest parking place near the door or next to one of the trolley parks so I can quickly get out of my car and grab a trolley. I am much more confident when Hollie ( My Partner ) is around as she stares at anybody who looks at me and she makes them feel like shit which is always funny but in the back of my mind she gives me so much confidence as I know she is looking around so I don't have to so I can concentrate on my walking.

The anxiety is really bad when I am on my own. I dread when Hol can't be with me when I go out as I know I have to deal with the looks and the stares on my own and still get on with what I need to do. Sometimes you just want to drop down to the floor and scream why me as your brain says don't worry and just ignore all the shallow bastards but it is so hard as that is all you have ever lived with.

I will continue my fight with Anxiety and I will post more blogs around anxiety as I think people hide the truth of the problem and I will talk honestly about the struggles surrounding it.

Please find me on twitter @Myroylelife

Thursday 28 May 2015

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

Tuesday 26 May 2015

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:

My twitter is @myroylelife please hit the follow button

Friday 22 May 2015

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.

Friday 15 May 2015

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!!!

Monday 4 May 2015

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.

Wednesday 1 April 2015

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.

Follow me on twitter @MyroyleLife for all my latest blog post's

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:

FOLLOW ME ON TWITTER @MyRoyleLife

Tuesday 31 March 2015

DYSTONIA EXPLAINED

There are many types of Dystonia, I have Generalised Dystonia which effects both my arms and legs, for most of my childhood up until 12 i was mostly wheelchair bound with spasms happening everyday.

Throughout my childhood i was passed from hospital to hospital with doctors having no idea what was wrong with me, i even got accused of making it up for attention which effected my confidence and i didn't have much in the first place.

We live in a world where everyone expects everybody to be perfect but the reality is NO ONE IS PERFECT we all have problems and no one should be put down about having a condition or a disability! 

Most of my childhood doctors kept saying i had Cerebral Palsy as i walked very hunched over and with my left arm always behind my back, We first started noticing this when i was around 3 years old and started pre-school and i was starting to limp and walk different to all the other children. 

It was not until i was 11 that we found out the condition i had was actually Generalised Dystonia and i was sent to Frenchay Hospital at Bristol which is around 220 miles from where we live. It was there where a Dr Steven Gill now Professor talked to me about a fairly new operation called Deep Brain Stimulation where they open your head and insert a set of Electrodes down into your brain and then feed the wires into a box ( a bit like a pacemaker ) into your chest. At the time i was one of the youngest to have this UK major operation performed as they couldn't wait as my spine was arching over more and more. 

I remember going down to Bristol to have the operation and i was excited not one bone in my body was nervous as i knew this was the only chance i had of improving my life, I had a frame fitted in the first operation which took around 6 hours to complete then i had to wear the frame over night and that was one of the hardest nights i've ever lived, The frame is bolted onto your skull and you can feel a weight on your head all night you couldn't move your head and i struggled to even take a sip of water.
The next morning i went down for the Operation and 8 hours later i was up in recovery with stitches in my head and chest and in a lot of pain. Over the next few weeks i started to see a improvement in my movements and walking gradually got a little better then after about 9 months i was not relying on my wheelchair for the first time in my life. 

It worked so so well for the first 2 years until i needed a routine battery change and that was when things started to go wrong as the operation didn't go to plan, i was back to square one struggling to even make it out of bed some days and my back is spasm all the time. I had 7 more DBS operations down in Bristol but not much difference was made during a 5 year period. 

I demanded to Move my treatment away from Frenchay and i was put under a MR Julien Evens at Salford Royal in Manchester where he performed my last operation on the 12th October 2013. I had all the leads taken out and moved to my right side of my chest and head and i am showing signs of improvement, I still take daily medication of Clonazepan and Baclofen which helps with my shakes and Anxiety. 

The thing what helps me the most is not the drugs or the operations its my Partner Hollie, She's been absolutely fantastic since we met on the 4th January 2013. I was so nervous meeting her as i was at one of my most shakiest and unstable points of the last few years but she just did not even notice. Throughout 2013 we had a lot of hard days with my dystonia getting the better of me to the point of i had to be shaved by her and even washed by her. She's just the most amazing women to have come through all that and be still with me its amazing and i'll never forget how she got me through without a doubt one of the hardest years of my life. Even on bad days and we go out and i'm shaking or walking funny she just holds my hand and does not care who looks or stares. Since meeting Hollie i have gained so much confidence its untrue and i've found a totally different side to me which i didn't think i had. 
Hollie Wilson Thank you for everything I Will Love You Forever And Always 

I hope this Blog helps anyone who has Dystonia or knows of a person with the condition.
Any questions please feel free to comment or tweet me at @myroylelife

Thursday 26 March 2015

HOW I HAVE DYSTONIA AND HOW I NEARLY DIED!

I thought I would go back to the start with this blog, I was born on the 18th January 1994 in Lancaster Infirmary.

I did not breath for over 9 minutes and I was in a very critical condition as I got stuck coming out from my mother my left arm got twisted and they pulled it out and this is why I have Dystonia.

I was in intensive care for over 3 weeks and everyday was a real battle to stay alive but i was a tough little bugger and i was not going to give up that easy.

The doctors and the so called "experts" said that I would never ever walk and I would be in a wheelchair for all of my life. My dad bless him refused to listen to any of the doctors and 2 years later I took my very first steps and my dad said he cried his eyes out and knew I have proved the experts wrong and started to walk.

     I will be going in and out of my life as I think this will make the blog more interesting as I will be talking about different years

PLEASE LEAVE ME A COMMENT IF YOU ARE FINDING THIS BLOG INTERESTING

Monday 23 March 2015

WHEN DYSTONIA TOOK OVER MY LIFE AND THE BULLYING STARTED AGED 3

Dystonia took over my life and started to ruin my childhood when I was aged 3, I had just started pre-school just at the bottom of our street, My brother, who is 10 years older than me went there and he loved his time at St Josephs but it was a living nightmare when I started there.

The first sign there was something wrong was one day I was playing in the play ground and I started trailing my left arm behind me when I was walking and I started to have a limp in my left leg which was soon caught the eye of some of the teachers who were always on playground duty. 

It got worse as the kids in my class started to notice that I was not like all the other kids in the playground and a group of 7 soon jumped at the chance to bully me. It started with just the odd shout across the playground then it started to get worse. I remember one morning I was struggling into school and in front of me all 7 of the group was copying me and they were walking with a limp and there left arms behind there backs. They were really started to take things to the next level as I started to deteriorate day by day.They surrounded me one day and started pushing me around and taunting me about the way I walked and held my arm. 

I will always remember on a Sunday night a TV program called 999 was always on BBC 2 and straight after it was finished it was my bedtime, I used to love that show but all the time I was at that school I was just in a trance watching it knowing that tomorrow was Monday and it was another week of torment and bullying. I used to go to bed and just lay there and cry myself to sleep as I dreaded the next day of school. 

We reported all this to the teachers and they just sat back and did nothing about it. They even called in my parents and asked them if I was getting looked after properly at home as they thought I was doing it for attention. Looking back now that must have been so hard for my Mum and Dad to hear as they always gave me the best and I was always looked after. My Mum and Dad was so upset they immediately took me out of that school and my living nightmare was over.

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Thursday 19 March 2015

MY SHAKES,SPASMS AND DYSTONIA

HI,

I have decided to blog about my condition before I start with all the funny stories and all the stupid stuff I have done in my life I thought i would write a little about Dystonia.

I have had a condition called Dystonia which I refuse to call a disability, everyone on this planet has a purpose and everyone can make a difference to the world and when people are labeled disabled people instantly treat them very different to anyone else which hopefully over the next few blogs who ever reads these will chance there minds on people who are a little different.

Dystonia is a movement disorder which effects your movements and your walking which can be very hard to live with but you have to carry on as like anyone you have your good days and your bad days, I have lived with my condition ever since birth so I have never known anything different over than having shakes and walking different. I will write a blog later on my birth and how things went wrong and how i ended up having my condition.

Dystonia effects me everyday of my life and I wont lie and say it's nice to live with but you have to grit your teeth and get on with life, I struggle with everyday tasks such as making a cup of coffee or making anything which I could spill as I spill a hell of a lot of stuff everyday of my life, I will be writing a blog on my coffee spills in the next few weeks as I have a lot of funny stories about them.

I will also do a blog on what tablets I have used in the past and what tablets i am on now and how i think they have all been useless in aiding me and making my life better.

I have also just signed up on twitter so get in touch if you also have Dystonia or any condition
@MyRoyleLife

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Monday 16 March 2015

WELCOME TO MY LIFE OF SHAKES LAUGHS AND PLENTY OF ACCIDENTS!!!!

Welcome to my new blog, all about my life, all the stupid things i get myself into and the accidents i have with all my shakes.

I will go in and out of my life as i write these blogs with very happy times and some sad times, but i think most of all i will tell you, all the shakey stories and all the silly stuff i have done in my 21 years.

The first thing you need to know that i have a condition called Dystonia which effects walking and movements which sometimes gets you down but i always find a way to carry on.

I have a great new family that has helped me through a lot in the 2 years i have known them, My finance is amazing her name is Hollie but she is my Denise. Then there is her mum and dad  - Jim and Barb, which are actually Stewart and Carole. If you have watched the royal family you would have guessed by now that we are named after all of them. Holl has a brother called Sam which is obviously Anthony.

I have some fantastic stories over the last 2 years about the royal family and there will be many more to come, I will be dipping in and out of my years with stories which i hope you will laugh at and will enjoy reading.

I love a good old moan and a whinge and no doubt i will be posting a few moaning blogs about people, tv shows anything really what i find annoying which goes on in my day.

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