HOSPITAL AND M.E.
I signed off my oncology and surgery teams a few years ago. It would be good to think that things have improved since then for people with M.E. going into hospital for surgery or other reasons. From several patients I have spoken to sadly this does not appear to be the case.
For people with Myalgic Encephalomyelitis navigating even the simplest of every day tasks can hold many horrors. The smallest effort can cause symptom relapse, sometimes hours or days later which makes management difficult. People often have a hard time understanding.
One place that you wouldn’t expect to encounter bigotry is hospital.
Some years ago a CT scan found a large “diverticular phlegmon” in my colon. A biopsy found the tissue was sinister.The cancer surgeon knew nothing about M.E. so I spoke, and later wrote to him, with details.I also sent him the ME Association anaesthetics leaflet and asked that it be passed on to the anaesthetist.As I was wheeled into theatre I told the anaesthetist I had M.E.His answer was brusque – what makes you think you should get different treatmenWhen I woke the ME symptoms were very severe. I was so ill I could hardly move my head.They had removed part of my colon, my surgeon said, but the cancer was too large. It was T4 size and had grown into other organs. Medical staff, I noticed, stopped reassuring me.I was unable to eat for days. I projectile-vomited pints of bile, as well as regularly hallucinating from illness and morphine.
At such a terrifying time, with a bad prognosis, I would have liked to be treated with human dignity. It was at this unlikely point that behavioural science made an unwelcome return into my life.
The nurse in charge of the cancer ward insisted I walk to the bathroom. I told her I was not well enough. From that time onwards they refused to bedwash me as a behavioural encouragement for me to get up.
It did not seem to matter to staff there that I couldn’t get up as I was too unwell.
After three days the surgeon was surprised I wasn’t better and chivvied me to get going – “a man of your age”. On the cancer ward they like patients to get up and moving as quickly as possible. The ward had, he told me, an ‘accelerated’ programme geared to get patients out within five days.
My mother insisted on a wheelchair and wheeled me to the bathroom, helping me to wash. She did this several times until I was well enough to get to bathroom on my own.
I was too unwell to leave hospital for several weeks.
I was moved to a side room for the last week. The comparative peace and quiet enabled me to recover enough to go home.In all this time no one asked me about my underlying illness.My mother tried to explain why I needed more help in order to recover but was met with blank stares. After all, it was a busy ward.
For the next operation, the same surgeon was now aware of M.E. Seeing is believing. A cancer nurse took us to see the anaesthetist ahead of the operation so that he would be aware in advance of the problems with anaesthetics and adrenaline.I was given an alternative to morphine.So recovery was quicker this time. No vomiting.
Every time meeting medical practitioners it’s important to go armed with written info about M.E. Sometimes it gets read, but sometimes even that isn’t enough.
It helps to have someone else with you to explain the illness as the patient is often too weak to talk or explain.
ME is not a disease of false cognition. The legacy of psychology has made life infinitely harder in surgeries and hospitals in the UK and all over the world.
And because of the psychiatric lobby we are often disbelieved and feel embarrassed when trying to explain the complexities of the illness to unreceptive ears.
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