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