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

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

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!

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 

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

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

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 :)

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

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.

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

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

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

Follow me on twitter @myroylelife