A battle won and a battle lost
14 September 2022
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.
Mi wanbel yu kirap bek long bet na ken raun. eksesais long het tu i gutpla blong mahn so yu ken mekim wok go het.
Tenk yu long kansol meri tu stap sambai givim sapot. Wanbel.
Posted by: Baka Bina | 10 January 2023 at 08:08 PM
The mind has to be kept active. Keep on writing and posting tirelessly, Keith. The back will will heal with time. Yu stap gut.
Tenkyu tru, John. I am getting the impression that I'm going to die with my boots laced - KJ
Posted by: John Gordon-Kirkby | 08 November 2022 at 04:36 PM
Keith's back again. Pun intended.
That ME/CFS is for real, I know it and wouldn't wish it on anyone else.
Because most people don't understand it, including medical professionals, I take the high ground - ME/CFS is reserved for special people who can hack it, everyone else would just go nuts.
Keep going hard, Keith Jackson.
Posted by: Michael Dom | 18 September 2022 at 06:44 AM
Pleased to hear of your successful surgery, Keith.
Next phase of your recovery has started.
I believe getting back to doing things you enjoy can be therapeutic.
Getting back to leading here at PNG Attitude is one of those. Wok i mas igo yet.
Tru, wok imas stap. Work started yesterday and had my first little walk this morning. Nice to get out among the trees and gardens - KJ
Posted by: Kindin Ongugo | 16 September 2022 at 08:49 AM
Onya, Keith, fighting the good fight.
Just got home and read the prognosis of my oxygen blood level test at the Royal Darwin Hospital. I quickly run out of puff these days.
My GP had printed it out. telling me I am in good shape for a near 80-year-old.
Category heading. CT Calcium Score - all clear - with the notation, bilateral breast implants noted in situ. Wow!
It's a CT CATSCOR result for another patient at the GP's clinic with a different doctor.
Posted by: William Dunlop | 15 September 2022 at 11:08 AM
Great to know you are out and well
Posted by: John Kuri | 15 September 2022 at 08:17 AM
Hope it all works out for you, Keith
Posted by: Ed Brumby | 15 September 2022 at 03:55 AM
Thank God for your recovery and God bless you and your family. I was heavy hearted but feel relief now.
Posted by: Philip Kai Morre | 14 September 2022 at 10:06 PM
So sorry to read of your plight Keith. Sending positive energies and best wishes for peace of mind and less pain as you struggle with your health.
Posted by: Ron Meshanko | 14 September 2022 at 09:42 PM
Keith, wishing you a great recovery.
Posted by: Garrett Roche | 14 September 2022 at 07:06 PM
We all missed you Keith. Glad to know you have managed to get back home. Thank you for informing us of what are to me a new set of medical initials. Do hope you can regain some sort of normality as you bravely fight the problems.
Posted by: arthur williams | 14 September 2022 at 06:03 PM
Alerting us all to the reality that you depict will have benefit more widely than in the headspace attached to the eyes of each reader. Already your alerting to aspects likely of 'Long Covid', is in the conversations here and I guess and hope, in families more widely.
One normality these days is the current level of understanding of "psychological trauma experienced during the war", which earlier was met with dismissiveness and unknowingness.
Of WW2, one survivor of diabolical tragedy, upon return shared with family of another who had not returned, and triggered mental difficulty for the widow. Much as such folk might want to share and assist, even that, as an unawareness, can have unfortunate consequence.
Posted by: Lindsay F Bond | 14 September 2022 at 03:53 PM
Welcome Back Keith. Or should I say "Welcome to Keith's new back?"
Mate, we've all been holding our breath and are glad it's all gone well.
Posted by: Paul Oates | 14 September 2022 at 02:32 PM
I hope all your inflammations will disappear soon. Get better quick!
Posted by: Albert Schram | 14 September 2022 at 12:40 PM
Despite all that Keith, you have done well. Keep at it.
With best wishes for a perfect recovery.
Posted by: Chips Mackellar | 14 September 2022 at 10:41 AM