Running out onto that narrow beach. Stones and shells crunching. Oranges and yellows and high rise flats on the left. Nothing better than running. The flats with blue cladding and TV windows. The air and the dogs. Everywhere. The air is so thick and there’s no distance. It’s so pulled in. So quiet with the thick air. I can feel the great chimneys and steel but I can’t see them. The loud steel of ocean liners and the beach is industry. Dark water moves without the moon or the wind. And in the close air two swans fly low and long cutting through the air. And on the dead beach a dead swan. It’s feathered arm bright white on the dead orange beach. A feathered arm over its feathered head. A grey and black carcass with grey and black bones. In the close air the swans pass again, flying nowehere and coming back again low and cutting though the air.

I run as much as I can to stay sane. If I could give any advice to someone with a rare disease it would be to try and exercise. Try and get out of your mind and move. Walking, running, whatever it is just try and move. Sometimes it hurts and is terrible but sometimes it’s incredible.