Challenge Gibraltar…

Over the weekend, fellow wheelchair user and Arsenal season ticket holder Paul Smith text me to ask if I would be able to set-up a blog for him. Not so he could rant about annoyances/grievances he faces in everyday life (like moi) but to help promote his next challenge. If you remember, last year, I said that I wanted to enter the London Marathon in 2015 but soon realised that my body is too weak. Paul also set himself a challenge for 2015; to push himself to the top of Gibraltar Rock to raise money for charities. The difference is that ‘Challenge Gibraltar’ is not some vague ambition. He is actually going through with it next April.

It’s no surprise because this will be his 8^th extraordinary challenge and so far he has raised an incredible £2.2 Million for a variety of charities. This time, all the money that is kindly donated will be shared equally between Save The Children (Gibraltar) and a cause very close to my heart, Great Ormond Street Hospital. I was a regular when I was a child and know that this amazing place needs every last penny to keep going. Hopefully, you can all see that this man takes the word ‘legend’ to another level. An able bodied person making it to the top of the Gibraltar Rock is impressive enough but self-propelling a manual wheelchair is an unbelievable feat.

The link to his page is https://challengegibraltar.wordpress.com and he’ll be posting updates on his training regularly. His fundraising target is £100, 000, which sounds like an unattainable figure for one man but as Paul said, all it takes is for “100,000 people to donate just £1”. To donate (every little helps), please go to http://www.virginmoneygiving.com/challengegibraltar. I am confident that you, my loyal and generous reader, will help Paul towards his target.

Bye for now!

Fatigue management…

A huge part of my life now is that I always feel tired, which makes me feel pathetic. Even when I have had a day of doing next to nothing, like today (although I am going to see Through The Keyhole being recorded later), I still can feel exhausted. I went to see an OT last week to discuss my issues that have been getting worse over the last year or so. I mentioned how I can be knackered from just sitting at the computer writing but she said that although it doesn’t seem like I’m doing much, typing takes a lot of brain, hand, arm and eye energy.

Another interesting point she made was that the body takes longer to recover from everyday activities with Friedreich’s Ataxia so my fatigue levels are dependant on what I have done the previous day. Obvious but I hadn’t thought about it before. For example, a session at the gym can completely wipe me out the day after but you’d expect. However, I get tired doing the most mundane things. My car was being serviced yesterday (can you believe it has been a year) so I had to wait in Harpenden for about an hour. My carer and I sat outside a coffee shop enjoying the sun. Hardly tiring but I feel shattered today.

Now, I’ve been told to try and make weekly plans so that I don’t end up going shopping, have a hospital appointment and then go to the gym all in one day. Also, I like to sit at the computer for hours on end but as she said, it’s exhausting so I am trying to break it up into 15-minute bursts throughout the day (although I have written this post today in one go as I’m off out soon). This may sound like a weak excuse but fatigue is part of the reason why I’m not that sociable. Talking and smiling takes a lot of effort sometimes so I just prefer being a recluse.

Bye for now!

Walk on by….

Remember ages ago when my wheelchair tipped backwards after going over them ridiculous speed humps in Verulamium Park (which were finally removed following months of arguing). Everyone was shocked and appalled how a few onlookers walked on by and it took a while for someone to come to my aid.  Anyway, that wasn’t a one off. It turns out that most of the general public will not offer to help someone who is in distress and those selfless people who do come forward are in the minority. ‘Wheelchair Boy’ found this out last month when I found myself in a rather uncompromising situation.

Whenever I visit the Alban Arena, I normally end up writing a post about parking but it was different this time as my brother and I were being dropped off. However, it didn’t go according to plan because when I stood up to transfer, both my legs buckled from beneath me (happens quite a lot with Friedreich’s Ataxia).  That’s not a problem usually as I’m strong enough to recover and pull my body up using the car door. I felt weak this time so once I had gone, I thought there was no point in fighting the inevitable and gently let myself down to the floor.

I told my brother and sister not to panic. I’m sure a couple of strong men would be able to help…eventually. The amount of passers by who just ignored the situation was unreal. It wasn’t as if people couldn’t see what happened; we were right between a busy pub (Waterend Barn) and the theatre so lots of people were around. I even made eye contact with some but they just looked away and left the disabled person sitting in the road.  I don’t know if they thought I was messing around or were simply not very nice.

After a while, two men came to the rescue. One person who was also going to see the show (stand-up from Jon Richardson) and a homeless beggar. An unlikely combination but I’m immensely grateful for their assistance. Puts the rest of the onlookers to shame. I naively thought St. Albans was a pleasant area because, as the name suggests, it’s a city with strong religious foundations but clearly not. My fellow Albanians obviously hadn’t heard of the Good Samaritan parable.

Bye for now!

Writing a book…

I was going to keep my latest ‘project’ low key as I didn’t want to disappoint people if, like my sitcom, I didn’t finish it. The problem with writing a comedy was that it is a lot harder to be funny on paper than one might think. I tried on my own and then with a friend but ran into difficulties on both occasions so I’m going to stop trying to be the next Ricky Gervais for now. Instead, I have begun writing an autobiography (like I’m some celebrity), which I am pretty confident of seeing through to the end.

Don’t get too excited though as I finally (the idea has been stewing in my mind for ages) started writing the book last Tuesday and have only managed just over 800 words. At that rate, you are all going to be waiting a long time to read a copy. It’s based on my blog posts but most of the content will be brand new. A lot of what I have already wrote is a bit too brief so I plan to add detail if needed. Also, I do not want the book to be a random collection of ‘The Adventures of Wheelchair Boy’ posts. They should simply be the foundations to build on.

Anyway, I just thought I’d warn you that the amount of posts I write in a week is going to be varied for the foreseeable future. Some people will be annoyed that I won’t be on here all the time but hopefully the book will be worth my effort. I better get on with the job in hand. Less procrastinating and more work.

Bye for now!

Freedom One Life…

One of the reasons I hardly ever use my electric wheelchair anymore (aside from the fact I cannot drive without crashing or running someone over) is that life is a whole lot easier without one. Yes, it gave me independence and meant that I didn’t have to rely on others to push me. Being pushed around in a manual chair all day can be quite frustrating and depending on who I’m out with, I sometimes feel like a big baby in a pram. However, there are a number of practical issues that arise when using a standard powered wheelchair so making the choice to go manual was an easy one.

For instance, transporting an electric wheelchair is extremely difficult because it’s such a hefty piece of machinery. I did have a Volkswagen Caravelle so that I could drive up a ramp and straight in the back but that’s the only way I could get from a to b. At least I’m now not limited in choice. With a manual chair, I can use my own car, a friend’s or even a taxi (a challenge but not impossible). The portability of a wheelchair is key for day-to-day use.

Also, the size and weight of a powered wheelchair makes the world even more inaccessible. If I’m out shopping and there’s a step (shouldn’t be but that’s another matter), I can just get my carer to slightly tip me back and bump me up. Where as if I’m in my heavy and cumbersome electric chair, the said shop is automatically off limits. In an ideal world, the electric wheelchair would be able to go everywhere but sadly it can’t. Using the lighter manual chair just means less hassle.

If only there was a sturdy electric wheelchair to give me the independence back but also have that essential portability a manual chair possesses. Turns out there is. It’s called the Freedom One Life wheelchair (find out more by watching this video: https://www.youtube.com/watch?v=9tHtkZW5UVk) but unfortunately it’s not available on the market. Alex Papanikolaou, an entrepreneur living with cerebral palsy, came up with the idea after encountering similar problems to the one’s I’ve mentioned in this post. The only problem is that his idea needs money to get off the ground.

You never know, a wealthy businessman/woman might read and want to invest. It’s an invention that has certainly caught my imagination and definitely would make my life so much better if the idea on paper ever became a real product. Freedom One Life needs all the help it can get though so launched a crowd funding campaign (see here: https://www.squareknot.co.uk/pitch/freedom-one-life/286) earlier this week in the hope that people can give whatever they can to this exciting project.

Please visit http://www.freedomonelife.com for more information about investing in the future.

Bye for now! 

That question…

Whenever I meet someone new whether it be online or in real life, the first question they will usually ask is something along the lines of “I hope you don’t mind me asking but what is wrong you?”.  I do have to answer that quite often but I don’t mind. It does get a bit tedious and it would probably be easier to carry a box of leaflets explaining Friedreich’s Ataxia around with me to give out when asked. Also, a bit of humour would make being asked about why am in a wheelchair less boring and repetitive. Disability Horizons recently came up with a list of alternative responses to lighten the mood, which can be read here: http://disabilityhorizons.com/2014/05/why-am-i-disabled-well-10-funny-answers-to-a-common-question/

However, I do not understand why some disabled people get offended when someone enquires about there disability. The “I hope you don’t mind me asking” part is not needed personally. The question does get tiresome but surely it’s nice to know that someone is concerned/intrigued about how you became disabled as opposed to being completely disinterested. I always say that people should see the person and not the impairment but it is only natural for a human to wonder. I’d be slightly worried if someone did not ask why I am a ‘Wheelchair Boy’.

I’ll give an example of what goes through my mind when I meet a disabled stranger to illustrate that everyone cannot help but be intrigued by a slight difference. Firstly, I try not to stare because I know that the feel of glaring eyes is not great but it’s quite difficult when you’re consciously trying not to. Curiosity soon gets the better of me and I become desperate to find out what happened. Were they born with one arm or was it blown off in an explosion? Did it become infected and have to be amputated or was it some sort of accident? This sense of wonder happens to the best of us, even ‘Wheelchair Boy’.

Annoying questions for a disabled person to answer but necessary to make others less ignorant. How is society going to learn otherwise?

Bye for now!