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!