Friday, 28 February 2014

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!

Thursday, 27 February 2014

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! 

Wednesday, 26 February 2014

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!

Tuesday, 25 February 2014

More than a game…

Most people don’t realise just how much the Arsenal means to me. Everyone is aware that I’m a massive fan because I watch them all the time, either live or on the T.V. However, my whole life is devoted to Arsenal Football Club. My calendar revolves around the fixture list, I can always link whatever happens in life back to the Gunners and if a girl ever asked me to choose, I’d go for 11 men in red & white without hesitation. Sad? Yes, but it’s my life and there’s no way of getting around it. I wish I did not have this unhealthy obsession, as life would be less stressful, but I do.

I watched the 1997 RomCom Fever Pitch starring Colin Firth yesterday and it dawned on me that so much of the film rings true. I’ve seen the adaptation of the Nick Hornby novel so many times throughout my childhood but with adult eyes, I realised that the main character of Paul is more or less based on me (apart from the minor fact he is not in a wheelchair). The whole film gives an insight to my life but I think the following sums up how I feel about Arsenal:

The similarities are uncanny. His first visit to Highbury was in the West Upper, just like me. I remember the goosebumps I felt going up the stairs and seeing the immaculate pitch for the first time, just like he did. Then as an adult, he has as a Season Ticket in the North Bank (again, I do although in my case it's at the Emirates). Plus, the fact that the Arsenal dictates his emotions, which is something I suffer from. If Arsenal win, I'm ecstatically happy but if Arsenal lose, I'm down in the dumps. At least until the next game.

I recommend you all go and watch Fever Pitch if you want to see inside my mind. If not, here are the best bits:

Bye for now!

Monday, 24 February 2014

More taxi problems…

Not for the first time, it has become evident to me that taxis and disabled people do not go together. New readers should take a look at my previous post on the subject from last February: before I explain my latest grumble.

This time, my problems have come with cabs in the area I live. Basically, I went to the rank one night because the Batchwood Bus isn’t accessible and I wanted to go clubbing. The marshal stopped the first taxi and asked the driver to get the ramps out. He clearly couldn’t be bothered so refused to take me. Out of order. Anyway, a second taxi was happy to take us but I realised why this driver was eager to put me in. The meter was already on when he was loading me, which is just pure discrimination. It’s not my fault a wheelchair takes a couple of minutes to get in where as a normal customer takes 5 seconds or so.

I attended the first St. Albans District Access Group meeting of 2014 this morning and issues regarding taxis topped the agenda, with the councillor in charge of licensing to field questions from ‘Wheelchair Boy’ and co. She gave a typical politicians answer, repeating points I’d make but re-wording it to try and appease me. I admit I made the mistake of not taking down a number so there is nothing that can be done on my issues, but regular readers will be aware that I’m not quietened easily.

Bye for now!

Friday, 21 February 2014

Crazy ramping…

Front garden’s come in all shape and sizes. Some people have small ones with a few flowers, some have massive drives with crazy paving, some have overgrown jungles and some have a disabled ramp snaking up to the house. Yes, you read that properly. A council up in Scotland have decided that a 60m ramp was a good response to a family asking for adaptations to be made.

You can read more and see the ridiculous installation in this article (thanks to my friend who shared this):

St. Albans council made my house accessible years ago and put quite a discrete ramp in the entrance. You can imagine how my family and I would react if they put that eyesore in front of our house. It was bad enough when they wanted to put a lift (elevator if you’re American) in.

Bye for now!