One mother discusses her son's condition of M.E. and her frustrations with the medical community.
“Do they think it’s all in my head, Mum?”, my son quietly asked me as we left the GP surgery.
“I can assure you, son, none of this is ‘in your head’”, I replied with conviction. He had just been told routine practice was to refer to Psychology. He was 20 years old and had been diagnosed with Myalgic Encephalomyelitis (ME).
Before that he was an outdoor-loving young man: cycling, running, climbing and skiing. After a bout of ‘flu’, he never fully recovered. Everything he tried to do exhausted him: college work, physical exercise. Nonetheless he finished his course and started his first job.
Soon, physical work and long hours led to further episodes of severe viral illnesses. Suspecting ME, the GP referred him to hospital where he was given advice based on Graded Exercise Therapy.
This caused further deterioration as happens with most sufferers. Physical or cognitive exercise causes a prolonged exacerbation of symptoms. Psychology brought no improvement. Unsurprising, as ME is a neurological disease NOT a psychological illness. It is chronic, debilitating and affects many of the body’s systems. There is no cure and no specialist service in Scotland (except one nurse in Fife).
Now housebound, he requires 12 hours sleep, and is socially isolated. Social media is a lifeline. A ‘good day’ is when he can be driven to a viewpoint and feel the wind (or sometimes the sun!) on his face. Simple activities of daily care prove more challenging than the mountains he used to climb. But somehow he finds strength to keep going, to enjoy a joke with us and hopes that one day it will improve.
As a Carer, I have had to learn patience to live life at a slower pace. For that, I am grateful.
My patience does not extend to policymakers who deny ME sufferers health equality. My son is too ill to fight his cause but, as his mother, I will give it everything I’ve got.