Care Bill conference…

A few weeks ago, I received a letter inviting me to attend a conference in Hatfield regarding a new Care Bill that is currently going through Parliament. I’m not too sure why but I put my serious adult hat on and booked up a place for my carer & I. It seemed like a mistake this morning when I had to getup at 8.30 (early for me) but at the very least, it would give me a subject to blog about. The day was quite boring and therefore tiring but couple of interesting thoughts entered my head that I want to write about.

The main conclusion that I drew from listening to various keynote speakers today including Sebastian Habibi from the Department of Health was that this care bill is a complete waste of time. After hours of explanation, I still don’t understand what this piece of legislation will do. That’s not ‘Wheelchair Boy’ being slow. I just cannot see any noticeable changes and how my life will improve when the act is introduced in March 2015. In my opinion, the change in law is a way for the government to distract from the plethora of welfare cuts.

An issue that arose and I feel very passionate about is the mandatory contribution to care. As soon as disabled people turn 18, they are expected to pay towards carers. Fair enough if you’re wealthy and can afford it but the majority of disabled people do not have bundles of money. For example, I cannot work and have absolutely no money (except benefits which is a pittance compared to the average wage) but still have to contribute. I see that as discrimination because a normal person does not require support and have to pay an extra ‘tax’. It’s not as if I chose to have Friedreich’s Ataxia (FA).

I’ve got another early start tomorrow, but this time it’s for the Arsenal so hopefully will be worth it. Eventhough after our loss last Saturday, I did question why I get up relatively early just for a football match and travel to far-flung places such as Stoke. I know that it’s lunacy of the highest order but, just like FA, my loyalty to the Gunners is an affliction that I will suffer forever.

Bye for now!

Can’t touch this…

Before I begin my post, a quick note. Readers who come back every day for their fix of ‘Wheelchair Boy’ would have been slightly concerned that I broke my New Year’s promise of a post a day. I’ve managed it for two and bit months but yesterday, realised that it’s practically impossible. Sometimes I’m busy and it would make my life easier if I skipped a post (I end up getting stressed otherwise). Also, my life is not always that interesting so a daily post is not warranted. I’ll blog most days but just a warning that the subjects I can write about run dry at times.

When it comes to changing mobile phones, there is little choice nowadays. Pretty much all-decent handsets are touchscreen. Not a problem to most but due to my shaky hands and lack of co-ordination, I find typing without physical buttons extremely difficult. It took a while but I now have no problems using with my iPad so it’s probably a case of getting accustomed to an on-screen keyboard. However, a tablet has a larger screen compared to a mobile so it’s no wonder I find typing on that much easier than a phone.

Obviously, there are plenty of mobiles with buttons on but none are as good as their touchscreen competitors. The main alternative for me back in 2012 was a Blackberry but I have realised they are awful and have many issues such as the fact it keeps freezing all the time. All of the other handsets with traditional keys are too basic for a young (and cool) man like me. Yes, I want a disabled friendly phone but I still want to take pictures, access the Internet and download apps such as Twitter and WhatsApp. Just like a normal 20 year old.

My mobile contract doesn’t come to an end in until August but I have already begun my hunt for a new handset. It might sound ages away but five months is actually not that long. I mean three months ago it was Christmas and look how quickly the time has flown by. Also, It seems like yesterday I excitedly posted about my brand new Bold 9900 but it was nearly two years ago. Before I know it, I’ll have to get a new phone and as choosing a product that suits me takes a lot of consideration, I thought I’d start looking now.

Bye for now!

Get real…

As you know, I enjoy writing about football and last month, I launched my own blog called ATeamEffort (http://ateameffort.wordpress.com). Not as many people as I would have liked are getting involved but it’s only early days so I might get more fans of the beautiful game who want to air their opinions in the future. At the moment, it’s just a West Brom fan and me who post. Not that our articles aren’t interesting but the content needs a bit of variation to attract more readers. Anyway, I‘m glad I set the site up because it has given me a platform to share my work and get my name out there.

So much so that I received a Tweet the other day from @Getrealfc asking me if I would like to blog for their site (http://www.getrealpremier.com). After a brief e-mail discussion, where I discovered that GetReal has a popular site dedicated to Hockey, I agreed to be a contributor.  I am quite excited to be chosen as they reach a lot more football fans than ATeamEffort does and they’re trying to expand even more as a brand. I might become a famous pundit and then people will have to start taking my madcap views on football seriously.

I will keep running ATeamEffort so again, anyone who wants to write for me should get in touch. I just thought I’d share the news and do a little bit of self-promotion while I’m at it (http://www.getrealpremier.com/author/glen-shorey/). Some posts will appear on both sites because I don’t have the time to be writing multiple entries. That way, it will also increase the reach because people will read the article on either blog.

Writing about football (I know that sounds boring to many) is one of the things that ‘Wheelchair Boy’ does during the day aside from writing this blog you are currently reading.

Bye for now!

Still time…

There’s less than 2 weeks left to enter the competition that I’m running on behalf of DisabledGo. The prize is a £50 voucher to spend in their brand new disability store so, if that sounds appealing, get involved now. The finer details were explained when I launched the giveaway on February 14^th (http://theadventuresofwheelchairboy.blogspot.co.uk/2014/02/competition-time.html). Remember, there are numerous ways to get your name in the raffle so check out how to get multiple entries by reading the post in full. The more times you enter, the better chance you will have of winning. Pretty obvious really.

I realise that the majority of my regular readers are not disabled so probably don’t have any interest in a £50 voucher to spend on mobility equipment, wheelchair ramps or living aids. However, you must surely have a family member who would appreciate something from the shop. Even if it’s an old person who now finds walking or other tasks difficult. Just think about it before you totally dismiss entering the competition.

Since starting the competition a few weeks ago, I have definitely had an increase in traffic to my blog thanks to the daily shout out from DisabledGo on Twitter. So if you’re one of these new readers, thanks for coming back. I’m also grateful to people who have been following ‘Wheelchair Boy’ since the beginning nearly two years ago. All the support does mean a lot but I especially like it when you get engaged with the posts by commenting or tweeting me. Otherwise, I do start thinking why do I bother?

Good luck! Only 13 days and 7 hours remaining (depending on when you’re reading this post).

Bye for now! 

Not good enough…

I’m going back to my old school tonight to see a musical about some sad lesbians, or at least that’s what I think Les Miserables is about. No doubt, I will see some teachers who will express an interest in my affairs (some might even bring up the subject of University which will be awkward). Don’t get me wrong, it’s nice that they care what I’m doing but I end up not knowing what to say. On the surface, I don’t do much but sometimes just getting through the day is hard enough. However, you feel such a useless human being if you just say write a few blogs and go to the gym. They don’t say anything but you can see the disappointment in their eyes.

Sadly, there is nothing more that I can do in the day. Most of the time, my carers do not get me up until 10.30 AM. That’s not because I’m being lazy. I just have fatigue issues (due to my heart medication) and I’ve discovered that waking up later means I can get through to bed-time. If I do get up earlier, I do need a snooze during the day, which means I can’t do anything. So by the time I’m showered, dressed and fed, it’s about midday. There is only 10 hours until I’m back in bed, which doesn’t sound a lot but I don’t think a day goes by where I’m not completely knackered at the end of it.

Tasks such as writing a blog post or two, going to the gym and doing a weekly shop do not sound very time consuming but for me, they take up my day. A normal person could probably do all them tasks within two hours but

Friedreich’s Ataxia means everything takes that little bit longer. This post for example has took 1 & a half hours to complete, a gym session takes up to 2 hours (I’m not going hard, I just have to keep stopping) and shopping takes about an hour because I push myself around the supermarket. That’s not forgetting the Arsenal and other writing commitments. I also play FIFA, watch T.V. and use social networking sites like a normal person.

When I say writing commitments, I mean either writing about football or attempting to develop film ideas. I mean, I have a thought, write it down and then leave it because I don’t have the time. That sounds ridiculous as I don’t have a job but like I said, a small thing such as a trip to the cinema can take my day up. When I went to see The Wolf of Wall Street last month, I got up and ready for the 12.30 showing. The film lasted 3 hours so by the time we came out, had some food and went home, I only had enough time to write on this blog(I couldn’t skip it as I made a New Year’s resolution to post everyday).

Now, I haven’t written this post to make people feel sorry for me because my life is truly brilliant. I just wanted to explain how I spend time so that people don’t judge. A few years ago I didn’t envisage that I’d be living off the state but I guess that’s the reality of having an unstable condition that will always deteriorate. Perhaps I should print the above paragraphs off and hand them to anyone who asks “what I’m up to these days?” or I shall just reply “I’d give you an answer but you won’t find it satisfactory”.

Bye for now!

Trike for sale…

A few months after purchasing a hand-cycle, I’ve decided that it is not for me. If I’m being truthful, I should’ve realised this before I brought the trike. The transfers should have been a wake up call as I’d nearly break body parts just to get in/out of the contraption. However, I ignored the concerns of my parents (I thought they were just nagging for the sake of it) and didn’t appreciate my own body limits. Just because I know someone with Friedreich’s Ataxia who uses one regularly, doesn’t automatically mean I can use one. Everyone has different symptoms but I neglected that little fact.

I think I got caught up in the whole Paralympics hysteria when I vowed to do the London Marathon in 2015 (later changed to a bike race this May). When I see athletes such as David Weir on the T.V., pushing a wheelchair looks so easy but that’s because these athletes are usually only affected from the waist down. Unfortunately, the Ataxia that I’ve got isn’t satisfied with simply removing my ability to walk. Other parts of my body are not normal which makes everything I do that extra bit difficult.

These symptoms have left me with no choice but to stop hand cycling. I realised that my arms aren’t that strong and eventhough I’ve been going down the gym for almost a year, my muscles don’t develop. Another problem I had when using the trike is the poor dexterity in my fingers and slow reactions to brake. Also, an increasing problem I’ve got as a result of Friedreich’s is my heart. I easily get out of breath and fatigue is a side effect of my tablets so strenuous exercise isn’t good. I don’t want to end up in hospital with Atrial Fibrillation (AF) again.

Now, to think of something else that I’ll try for a few months before realising my body can’t cope and I’ll have to stop. Remind you of anything else?

Bye for now! 

Beard today, gone tomorrow…

So, I’ve been growing a little bit of facial hair since the turn of year. It started off with me wanting to be fashionable and have a little bit of designer stubble but then it became a tad messy/overgrown. I was enjoying the fact that more people saw me as an adult and the beard acted as a natural proof of age. However, it was almost two months since my last shave and I was getting quite bored of the ‘hobo’ look. My face was getting to the stage where it was looking creepy rather than sophisticated, which was the original plan. The bum fluff had to go.

This afternoon, I was looking like this: 

I was quite nervous that removing that much hair would be painful but luckily, it wasn’t. The electric shaver was a bit uncomfortable but it didn’t hurt. This was then followed by a wet shave meaning I now look like this: 

The baby face has returned and I’ll probably get ID’d more often but it feels so nice. Although I was growing accustomed to the beard, my face feels much more lighter and fresh. The only problem is that I might get spots now that there is no facial hair to protect my skin.

Don’t worry beard lovers, the facial hair may be back in the future. I just fancied a change and I weren’t getting much positive feedback from women. They’re opinions are the only ones I value.

Bye for now!