Fresh Mud

Today I had the cushion put back in once I'd been hoisted into my wheelchair and it was fine for a while but eventually, after about two hours, it was causing my right leg to ache somehow (remember that the cushion is on my left side). I asked someone to remove it and the ache eased a few minutes later. Continue reading →

This afternoon I had a session in the gym with Adrienne, Sam and Aaron; Adrienne wanted to see how well I could balance and support myself sitting on the edge of a plinth (which is what they call the padded table in the gym). Sam was sat behind me on a huge ball holding my shoulders and stopping me from falling forward whilst Aaron was in front trying to stop me from leaning to my left; Adrienne was also in front supporting me as I really have no core strength! Continue reading →

Chatting to Abid as he was helping me with breakfast, he noticed an icon on my phone home screen named “If I've Died” and he asked what it was; I explained that it's a text file containing all my wishes and related details needed should I die (my eldest brother has access to my phone). He went on to ask, apologising if he was being nosey beforehand, if I had accepted the possibility of it; I said that I think I have, with a bit more explanation. Continue reading →

I was born with FSH (facioscapulohumeral) muscular dystrophy but wasn't diagnosed until I was 12 years old; it has affected me almost my entire life and it will only ever get worse. And on that cheery note, welcome to my site.