WARD 9, WESLEY HOSPITAL, BRISBANE – A return to the keyboard. I type this haltingly, and with much error and correction.
Eight days ago, in a four hour operation, I had my seventh major spinal surgery. Two days ago I began to walk again, with acceptably little pain and great steadiness.
Neurosurgeon Dr Simon Gatehouse and hospital medical chief Dr Kaiser pronounced themselves satisfied, if not delighted, with my state; a state confirmed by x-ray the same day.
Then I spent yesterday in bed, not from over-exercising my new back but as the result of an unwelcome visitor – the ME/CFS that accompanied me to Wesley and that, try as I might, I could not persuade the doctors and nurses caring for me to take seriously.
The careful drug regimen to control the condition, devised by my Noosa doctor over a period of six months experimentation, and that had recently come to work imperfectly but helpfully, had been largely ignored by my Wesley carers, despite my urgings, protestations and pleas
So yesterday the state they call ‘brain fog’ swirled through my brain and the stolid walker of the day before became a helpless ball of sheets in a hospital bed.
This morning I am sitting composing this with painful slowness. My brain fevered and quite confused, clarity having to be worked for hard and only grasped in short bursts.
So I have asked to be discharged from Wesley today, for my own good. The neurosurgeons have done well with my back. Now I must work on my ME/CFS.
“Brain fog isn’t like a hangover or depression. It’s a disorder of executive function that makes basic cognitive tasks absurdly hard,” writes Ed Yong in this month’s The Atlantic magazine.
Yong’s thesis is Long Covid but, where brain fog is the issue, there is common cause with ME/CFS.
Both involve real changes to the structure and chemistry of the brain. They are not mood disorders.
“Patients struggle to make peace with how much they’ve changed and the stigma associated with it, regardless of where they end up,” writes Yong.
“Their desperation to return to normal can be dangerous, especially when combined with cultural norms around pressing on through challenges and post-exertional malaise—severe crashes in which all symptoms worsen after even minor physical or mental exertion.”
All this I know, but the worst is people not understanding ME/CFS or Long Covid, not treating them seriously and leaving we people with ME hanging out to dry.
Now I better stop before my brain stops me. I’ll be back soon with the many articles and poems you’ve so kindly submitted over the last 10 days I’ve been out of action.