And my inspiration
different people. The pain I have got used to but the exhaustion is very difficult to cope with.”
As there is no cure, Amy looks to managing her symptoms instead, and sees a physiotherapist.
Worries about the effect of long term pain medication on her kidneys and liver have prompted her to stop taking pain killers.
As an artist, Amy is now taking part in Tramway’s Unlimited Festival, which returns for its second edition tomorrow. She wants to give people a deeper understanding of the illness she lives with.
Amy, a Royal Conservatoire of Scotland graduate, said: “People will ask inappropriate things that make it clear the real question is, ‘Why aren’t you trying harder to get better?’
“They will suggest juice cleanses or fasts – all sorts of things. It’s difficult when people try to micromanage your symptoms.
“And I don’t want to sound harsh, I know it comes from a good place, but I know my own illness. I am an expert in my own body.
“I have had people ask if my walking stick is a fashion accessory. Or they will ask, ‘What have you done to yourself?’
“I used to take the time to explain but now I just say. ‘I’m disabled.’”
Amy has performed in Berlin, Barcelona and London but this is her first solo piece in a major event space.
Called Gallanach, the performance piece sees Amy move through a web of live copper wiring.
Over four hours she will sew weights to her clothes to demonstrate how tiring the illness is and will work with shallow bowls of water and ceremonial herb.
Amy added: “My artistic practice has always been very nurturing, very much about making people feel warm and safe, so this is very different.
“Since my symptoms started I have noticed how uncomfortable I make people feel.
“So I want to make them feel uncomfortable and give a sense of what this illness is like.
“People only see me in short bursts when they come to visit so they see me looking reasonably well.
“They don’t see me then having to lie down for 12 hours to recover.
“This performance takes place over four hours, which will be incredibly difficult.
“But I hope it gives insight into how I, and others with chronic pain, live.”
Unlimited Festival supports internationally acclaimed and emerging disabled artists.
Cutting edge contemporary dance, visual arts, sound installation and film will be presented until Sunday, October 21.
Amy’s piece will be performed from 3pm til 7pm tomorrow.