My Night from Hell

If anyone saw my Twitter or Facebook feed, and saw my status about me being pissed off with FA - Friedreich's Ataxia

Here’s why 

So I had a Night from Hell

My day was fantastic, went to the cinema with my friends and saw The Inbetweeners 2 (Which I really enjoyed and found so funny, much better than the first film) and then we went and had some lunch, and then re-hit the cinema for film number 2 Guardians of the Galaxy which is ace I loved it... it is so much fun. 

Then we came home, that’s when the fun stopped and thing went a little south. 

So the first one kind off my fault, I was dying for a pee but I kept putting it off and holding it which is a really bad thing for anyone to do, even worse when you have FA. So when I went to the toilet I wasn’t quick enough, and yes 26 year old me pissed my pants lucky I was at home and not out and I grabbed my pee bottle, and got some in there. After some time spent doing clean up on aisle 7 I was good to go.

A few hours later I went back to use toilet, and during my transfer my right knee decided to lock up so I try to force myself onto the toilet. Big mistake that was, I end up braking the toilet seat and flying off the toilet. After getting my mum and brother to help me up off the floor, I went to my room did a status about FA and then went to sleep.

Broken toilet seats is a thing FA’ers are use too, this wasn’t my first and won’t be my last I bet. Today I am feeling down about FA, and the fact that this tard can’t sit on a toilet without breaking it.

There we go, that was my night from hell I know deep down things will get better... thanks to the Amazing soundtrack from the Guardians of the Galaxy

 I’ve got this song stuck in my head https://www.youtube.com/watch?v=bmDakhg45rk

which is good because it’s kind of helping me feel better.

Hello August

Hello August, I turn 27 in 30 days man I’m getting old... and I feel it. I have done something to my right shoulder, I think I slept funny on it but it’s been hurting and my right leg is also playing up, no pain init but it’s going stiff like rock and I’m having trouble bending it kind of feel like my body is failing on me. Because I’m a bit of a stubborn bastard I don’t want to go to the Doctors about it, I’ve got an appointment for September anyway so I’ll just hold out till then. Fingers crossed it starts working again by then, so I’ve been resting loads, keeping it elevated and been doing some stretches on it too. 

Any of my fellow, FA’ers out there reading this had any experience with this? If so got any advice you could share with me?

On Wednesday I had a new tattoo done, it doesn’t mean anything apart from I’m one big geek lol

                                                                  (The original picture)

                                                                        (My tattoo)

As you can see by the pics I’ve had a Red Skull, with Hello Kitty next to him but my friend made Kitty look Nick Fury (To make it look a little more manly haha) it’s just a silly little tattoo, but I am really happy with it. :-)

Anyway I’m going to back to resting, and hope this shoulder and leg don’t keep me side lined for ages I’ve got some pretty big stuff going on this month.

Some very Interesting things are Coming

Some very interesting things are coming, had this emailed to me yesterday.

Dear All

I’m writing to a number of you from the BU Carer and Service User Partnership; some of you I’ve managed to speak to, but to others this will be new.

The Adult Nursing team are hoping to set up a ‘simulation activity’ with Year 2 students.

The aims of the activity are:

1.    For students to undertake a simulated assessment of a “real” patient as part of a small peer group

2.    For students to “handover” the patient in a simulated ward report  to peers and academic staff

3.    For students to receive feedback on their performance through a)a short written report from the patient b) peer and academic verbal feedback.

So the essence of  the exercise is that you (as the patient) will undergo an admission to hospital or a first (home) visit in order for the student to do a nursing assessment and care plan. You won’t have to undress and the activity will take place in our skills labs which are set up like hospital wards or home settings.

The student will then do a handover in another room and you will then complete an evaluation form on how the student conducted the assessment.

That is pretty much all of the detail I have at this stage. We are holding a meeting to plan this and hear your thoughts about it. I would love you to be part of this, but by coming to the meeting you aren’t committing yourself. The activity is timetabled for February and May 2015, but we need to plan early because of the large numbers of students!

The meeting will take place

On: Friday 8^th August 2014

Time: 11am – 1pm

Place: Bournemouth House

            19 Christchurch Road

            Bournemouth

            BH1 3LH

Tea/coffee will be provided.

Of course I replied with a “yes I'm on board count me in.

This is all part of working with the Bournemouth University Carer and Service User Partnership, a group of fantastic wonderful people. I am a Service User, and I like being one I feel like I am giving something back to the people of tomorrow. For now this is just a meeting on the 8^th, but fingers crossed it can turn into something more. I have had some hospital experience, so I have something I can bring to the table. (Because you know as the say sharing is caring)

I hope I bring some good by the things I share.

And it's another step in the right direction to help get the message of FA - Friedreich's Ataxia to those who don't know anything about it.

One of my all time Favourite Gigs

In the last few years I have been quite fortunate, to seeing some of the biggest bands in Rock/Metal from the likes of AC/DC, Kiss, Ozzy Osbourne, Judas Priest, Motorhead, Iron Maiden & The Big 4 (Which is Metallica, Megadeth, Slayer & Anthrax)

Some pretty cool band name dropping right there \m/ 

I’m going to share a story of one of my all time favourite gigs. As today is the release of Fozzy’s new album - Do You Wanna Start a War (In the USA)

So we have to go back to 2010, the night I saw Fozzy in a little small pub in Southampton called The Talking Heads.

As you all know I’m a big time wrestling fan, it was through wrestling that I got into Fozzy (For the ones that may not know, the lead singer of the band is professional wrestler Chris Jericho)

At the time I use to listen to the wrestling radio talk show called Ministry of Slam, and that’s where I heard about this gig. Back in the day that radio show was ran by people that I call friends now, and one of the radio show’s host at that time was Lawrence Case (Who is the lead singer of a band from Bournemouth called Voodoo Vegas and they are Fantastic)

Voodoo Vegas were one of the support bands that night and anyway going back Lawrence had a few tickets for sale, I talked to a few friends and because the gig was a Tuesday no one wanted to come.

I thought screw it, I go one my own, and that’s what I did I got talking to Lawrence over facebook and I got my ticket. 

I got the train up from Bournemouth to Southampton, and when I got off the train and left the station. I got a taxi as I had no idea where I was going. Outside the station was a line of taxi and you are meant to get the first taxi but with me being a wheelchair user, I went to the second taxi and asked the driver if he could take me to The Talking Heads. He was reading a news paper, so he wasn’t looking at me and goes “you gotta use the taxi in front” to which I replied I’m in a wheelchair and you’ve got a bigger car, he sorted it out and he took me to The Talking Heads.

The reason I loved this gig so much and hold it so close to my heart, is not because I did it all on my own, but because I was the only one in there in a wheelchair and I was right at the front and during the show when Fozzy were on the stage the lead guitarist Rich Ward, used me as a stool and was strumming away on his guitar pretty much on my lap, it was Awesome \m/ and one hell of an experience, I hope those guys remember it because I sure as do it’s one of those moments that will live with me forever. 

It was my first ever close and personal gig and it rocked, it was a great night Fozzy are so much fun to see live and I have now seen them twice as I saw them this year at Download on the main stage, they rocked it again. \m/ As Chris Jericho would say if you haven’t checked Fozzy out then, get on it People but seriously give them ago and check out Voodoo Vegas too.

Here's some links, go my friends and Rock \m/ 

http://www.fozzyrock.com/ 

http://www.voodoovegas.com/

And also Chris Jericho podcast Talk Is Jericho it's a great show and so much fun

http://podcastone.com/Talk-Is-Jericho