Thursday, 14 August 2014

Massive Thank You for over 5,000 page views



Just a quick one to say a massive Thank You 
 Thank you to everyone my blog has now made it to over 5,000 page views
So thank you all again, for reading it and sharing it
I hope I have taught the people who didn’t know
Something about FA - Friedreich’s Ataxia

I will continue to keep up this good work (Well I hope its good work) 
Why I blog because “Thanks to my Friedreich’s Ataxia I struggle to hold a pen these days, so my laptop is my pen, and my blog is my paper. Also call this a little selfish on my behalf, but everyone knows about cancer and other illnesses and disabilities but no one knows  anything about FA - Friedreich’s Ataxia until you or someone you goes through it. (That’s a fact because we sure didn’t know anything, until I was diagnosed with it)

This is my one man mission, to spread the word of FA - Friedreich’s Ataxia to the masses. I Don't Wanna Stop till the aliens in the universe know about Friedreich's Ataxia.

And I other exciting news 

I’m getting my chest tattoo finished tomorrow, keep an eye out for tomorrows post... where I’ll explain the tattoo and share all the good stuff with you all. 

Thank you all again for 5,000 :-)

Wednesday, 13 August 2014

BU CSUP Newsletter Coming soon



After turning up 50mins early for a meeting what a plonker, I was back yesterday working with the Carer and Service User Partnership.
  
This time it was for 

BU CSUP Newsletter

That stands for Bournemouth University Carer and Service User Partnership

So yeah we are putting together a newsletter, exciting stuff. 
When the newsletter is finished and printed and I get my hands on one I’ll post it for all to see. 

Yesterday’s meeting kind of felt like John Hughes Classic the Breakfast Club and we were meeting in detention, not sure why because we not it just felt like that (Maybe it was one of those things, you just had to be there to understand)

The 3 points of yesterday were 

Who is it for?

What is the purpose?

Content

And that’s where we came in, with ideas to those 3 points. Not giving anything away because I’d like you to see the final product, but I think as a group we came up with some soiled stuff and good content.   

I love working with the Bournemouth University Carer and Service User Partnership, wonderful group of people and we always seem to have a laugh. 

Also maybe for one of the future newsletters, they want to do a spotlight... on yours truly
So I better get writing that, you know what they say watch this space... lots of positive things are coming.

Saturday, 9 August 2014

The Good, the Bad and the Ugly of yesterday



This is a whole run down of my day yesterday

The Good, the Bad and the Ugly

In the morning I attended a meeting, as part of my service working. This was for Adult Nursing
Full morning simulation activity for level I communication unit for adult nursing 
(Therapeutic Communication in Adult Nursing)

Aim: 

1.       For second year student nurses to undertake an assessment of a real “patient” as part of a small peer group.
2.       For student nurses to handover the “patient” in a simulated ward report to peers and academic staff.
3.       For student nurses to receive feedback on their performance by patients, peers and academic staff.
  
Preparation for the “patient” 

1.       You will be asked for some basic information that you might give to health professional eg gender, age, name and the reason for your admission. This will be given to the student nurses who will be meeting you to help them with their assessment. Your story may be better if it’s as close to your real life situation as possible. 

And number 2 and 3, were just things about on the day in short term they want us to take part in some role-playing with the students. I am excited to be on bored with something like this, plus it gives me a new platform to get the word of FA - Friedreich's Ataxia out there. 

The dates are not till early of next year, so I’ve got plenty of time to think of what I’m going to say.

Then I had a little accident with bladder failure again, this time it was out in public so it made it even more embarrassing. Then I caught my thumb in one of wheels and cut it open, so I rang my mum up and she came and picked me up because there was no way I was getting on the bus smelling of pee and bloody thumb. 

It was a very positive and productive morning, which turned sour quite quickly.

I got home and showed and all that good stuff, because let’s face it I did not smell pretty.
I had it planned for ages, to go to the Anvil that night for a gig and I’ll be honest after my afternoon the last thing I wanted to do was go out. My self confidence was at an all time low and I was just not in the mood. 

But I put my mask of happiness on, and got ready and about half an hour before I went out it started raining, I mean it was pissing it down.  I dislike rain because as a wheelchair user we always get wet, and of course I got went but eventually it did stop. 

The gig I went to at the Anvil was Baby Godzilla and it was hands down the most insane gig I have ever been to in my life, I keep scratching my head thinking how am I still Alive... after that it was balls to the walls crazy but I loved it and it done its job because I completely forgot about all the other shit going on I my life and just enjoyed myself.
And now for the best news... I didn’t pee my pants so Yes!  

Thursday, 7 August 2014

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.

Friday, 1 August 2014

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.