My cousin Ian Rudd died in April 2018. Paramedics were called in the early morning and were unable to resuscitate him. This is an edited version of a blog I wrote for severe ME Day in 2015 while Ian was still alive. He suffered from a cruel disease called myalgic encephalomyelitis that eventually killed him.
In 1995 my cousin Ian was a positive, happy outgoing young man who was studying a degree in Fine Arts at a London university.
He didn’t have an acute onset to his disease. His GP told him he had Post Viral Fatigue Syndrome. Ian felt sick and fatigued but tried to “push through it” for five years.
He went for long walks to try and prove to himself he wasn’t ill. He had to cut down his days at university – first five days, then four, three, two and finally one – because he had to rest the other days to build up enough energy to go in. Finally, he couldn’t make the journey.
He became bedridden and finally got a diagnosis of M.E in 2000.
Despite his severe disablement he remained cheerful and positive about the future – teaching himself calligraphy, chairing an internet forum on poetry and doing activities from his bed on the days when he could manage it.
In 2011 he had a few months when he had difficulty in swallowing and could hardly eat or drink.
In the summer of 2012 he had the same problem again. He was taken to hospital, rehydrated and sent home as some tests carried out showed nothing abnormal.
A week later he went unconscious and was rushed into hospital. A nurse asked his mother if he would want to be resuscitated. She said yes.
Ian was transferred to the intensive care unit.. He needed a tracheotomy because he could not swallow and had to be tube fed.
The doctors and nurses had no training in M.E. The consultant in charge of the ICU said he had never heard of Severe M.E. before. He said: ”Why have I not heard of this before?”
Then Ian was put on the ward. His mother was worried that his care needs would not be met as no-one seemed to understand the severity of his M.E.
He was left unattended and his tracheotomy became blocked. He went into cardiac arrest and suffered clinical death for seven minutes before he was resuscitated.
Because of brain damage he suffered hallucinations and lost most of his memory of the last few years. He woke up each day not understanding why he is in so much pain.
He was given a care package of a hospital-style bed and carers coming in each day.
The carers were untrained in M.E. They had to be taught about his extreme sensitivity to any movement and sound. Often he was too unwell to receive them. The burden of care fell on his mother who also has ME.
Ian was one of the 25% group of very severe M.E. patients who are bed bound and isolated by the illness. He is one of thousands of those whose stories are rarely heard. Thanks for reading.
£1,260 was donated in memory of Ian for the 25% M.E. Group. Thanks to all who donated.
From the 25% ME Group website: “The 25% ME Group is a unique nationwide charitable organisation managed entirely by volunteers (most of whom are severely affected by ME) and was set up to offer support services to those severely affected by ME (Myalgic Encephalomyelitis), and their carers.”