These Days

Everything was so much easier a few years ago; it was like playing a computer game on easy mode. If I was to fall I’d get myself back up, no problem, and my mum wasn’t so scared and let me do things. These days we are on a more medium to hard difficulty. Over time slowly I would say my FA (Friedreich's Ataxia) has gotten worse, and now some of the most simple of tasks are becoming more difficulty.

Like drinking drinks, getting dressed, getting in and out of bed, in and out of the shower or even entering the kitchen, pretty much the usual everyday things. Me as a FAer i am a person who loves my bed and my sleep, it’s just the way I have always been. I have to get over 10hours sleep otherwise the next day I am like a malfunctioning robot, I just don’t work probably. 

Just like most humans and FAers I have good and bad days. A good day is when I can get through a day without dropping anything, that’s including myself, and a bad day well you can guess that, when shit hits the fan. Every day I have put my full concentration into anything I do, especially when transferring, my biggest problem now is after going to the toilet, and pulling my bottoms back up, my boxer shorts I can do fine. It’s getting my trousers over my fat ass when I’m sat on it, I can do it but it is a struggle and takes so much energy, I usual ask my mum or a family member to do it, which is highly embarrassing as I am a 26 year old who can’t dress himself, but I just have to male ego aside and get on with it. I wish I could just stand freely and pull them up, but if I was to try and do that I would just fall flat on my face.

I also find these days that I am not a quick as I was, it takes me about 20mins to get out of bed, 30-40mins on a bad day. Everything is taking a lot longer these days.  I have found the song Help by The Beatles is a good way to describe the journey a FAer goes through, well maybe not for every FAer but for my journey anyway. (Take a listen The Beatles – Help http://www.youtube.com/watch?v=62IieI9Uiww)

 I’m hanging in there though as I am a fighter, every day brings new challenges and hurdles to overcome.