A father-of-two is keen to encourage more people to take part in this year’s Colour the World Orange day, an annual event which raises awareness of the rare condition he suffers from.
Complex Regional Pain Syndrome (CRPS), also known as ‘the suicide disease’, is a chronic, painful and debilitating condition which has taken over Tristan Morris’ life.
The 42-year-old, of Moreton Hall, Bury St Edmunds, started suffering from CRPS in March 2015 after developing an infection in his left leg following surgery for deep vein thrombosis (DVT).
The pain associated with his condition – often described as an extreme burning and stinging sensation – is usually triggered by an injury and confined to one limb but can spread to other parts of the body – both arms and legs in Tristan’s case – and has no known cure.
“My leg was extremely hot and extremely swollen – it took a long, long while to recover and the pain never left really,” said Tristan who now has stage four CRPS, the most severe form of the disease which is resistant to many forms of treatment.
He survives on a cocktail of drugs, including morphine, anti-depressants, cannabidiol (CBD) which he finds most effective, and medications used to treat muscular dystrophy and cerebral palsy, but it is not uncommon for him to spend up to 95 per cent of the day in bed, particularly during ‘flare-ups’ – long periods of worsening pain.
As a former site manager for Bennett Homes, in Nowton, prior to getting ill, Tristan was used to walking between five and 10km a day.
“I’m lucky if I can take four to five steps aided now,” he said, adding: “I’m never out of pain.”
“The only way I can describe it is like I’m stuck in a car crash. I have trouble sleeping sometimes because of it, we call it pain-somnia’.”
Tristan’s condition has also had a huge impact on his family; his wife, Carla, who is his full-time carer, and his daughters, Lucy, aged six, and Emily, age nine, who have been deprived of time they would have liked to spend with their dad.
To mark last year’s Colour the World Orange day, held annually on the first Monday of November, both girls wore orange tops to school and Emily gave a talk on CRPS to her classmates. This year she is organising a stall to raise money for the CRPS charity Burning Nights, and has inspired her father to share his story.
To find out more about the charity visit www.burningnightscrps.org.