Saturday 23 August 2014

#ALSicebucketchallenge Accepted and Done



I got challenged to do the #ALSicebucketchallenge
 
So...

Challenge accepted and done and I also so donated money too

And you can too... Go Here Now!
 
I have a rare condition myself called; Friedreich’s Ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder, about one in 50,000 people
.
I was waiting for someone to give me this challenge, because both FA and ALS have similar symptoms, I was diagnosed with FA at 15, at 19 FA took my ability to walk. Just like ALS it’s progressive and no cure. 

If throwing ice water over my head will get people to learn about something that they wouldn’t normally think about, Then I’m All For 


 I Nominated Ozzy Osborne in the video, so please SHARE the Hell out of it and hopefully he will see it. 

Thank you and enjoy the video 

Sunday 17 August 2014

Round 2 on my Chest Tattoo



Sorry I’m a little late on this one, I was too sore to blog. On Friday I got my chest tattooed again, and even low we didn’t get it finished... it is looking great, I’m stoked with it (Fingers crossed one session and it should be done)

Tattoo’s take long, and good tattoo’s ages

The chest is defiantly the most painful place I have been tattooed. It’s not fun, but it’s the price we pay for good art. 

Now for the reason 

With my FA - Friedreich's Ataxia I have all the heart problems that comes with it, so I got this tattoo of a heart in a coffin with the words “STILL BEATING” as a metaphor to say as long as my heart is still beating... I’m going to still be here kicking (FA) ass... and we just added in the bone wings because it looks cool.
                                                           (How it's looking Now)
                                                                     (Before Friday's session)

I have to thank the one and only Emma Garrard for this tattoo

After staring in a busy high street studio in 2006 emma has been lucky enough to meet and work with some of the best artist in the industry and received a nomination for best UK female artist at tattoo jam 2012.

Emma believes there is so much to offer with the art of tattooing and works passionately with her clients to give the best she can.

Every person is unique and requires individual approach.

Check her out
http://living-art-collective.com/

So looking forward to getting this tattoo finished, then pain is so worth it. 

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!