Health rising blog post, by Simon Parker, 5 Feb 2019: A winter’s tale – a former mountain climber reflects on Post Exertional Malaise and ME/CFS/FM.
Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms.
I often find myself trying to explain to other people what the delayed fatigue is like by giving an example that describes the degree of exhaustion I experience …
Have you ever been Winter Climbing?
Well let me tell you a tale …
[Simon tells the story of a tough climb in snow and ice, concluding:]
I was utterly exhausted from the physical efforts of the day and I hadn’t realised that the cotton underclothing I was wearing was soaked through. A combination of sweat from the physical effort of the climb and the copious amounts of water from the snow showered over me during the boulder-in-the-gully incident had seeped through my clothes and my padded mountain jacket.
The heat from my body core was draining away and the sub-zero wind chill was not helping. Tunni walked ahead of me breaking a path and I followed, using his footsteps to make each step I took easier. By the time we reached the mouth of the cwm, I was flailing and failing. Each step required a Herculean effort and I was falling further and further behind.
I remember thinking that I would sit down and rest for a couple of minutes to recover myself. Even as I lay back into the snowdrift, I realized that if I didn’t get up, there and then I would simply fall asleep and die of exposure, and at this juncture my resolve was overcome by a fatigue that went beyond movement and reason. I had become hypothermic. Blood wasn’t reaching my legs, arms, or brain. I was drifting into that blissful state between waking and sleep.
My brain was shutting down and I didn’t care …
All I recall of the remainder of that day is a dim memory of being hauled to my feet and half-carried the remainder of the way to the car; sometime later standing in front of a roaring fire whilst being plied with large mugs of hot tea; and a long hot bath to gently re-heat my body core back to normal.
That’s what friends are for.
They save your life.
And now, in 2019, I get to feel like this whenever I do more than I’m capable of; like walking upstairs or having a bath.
And when I’m asked, ‘How fatigued are you’?
Well, this is my measure.
Paul Tunnicliffe – Diary entry for 10 Feb 1996
“Winter Climb. Black Ladders. Eastern Gully with Simon, Loads of snow. Walk-in took 4 hours! v.knackered. climb took over 4 hours. so much banked up powder the climb was hard to start, even. Si had a couple of new screws & pegs and I got placements on the first bit and belayed on the lip with no rope left. Snow in the gully proper a bit dodgy looking and loose(ish) and we ‘daggered’ about 90% of it. 5.00pm top out and v.exhausting walk out mainly with head-torches during which I lost the spare battery and Swiss army knife and Simon had an epic! A good day.”
Dedicated to Paul ‘Tunni’ Tunnicliffe and Mark Pither
Simon Parker is now 62 years old. He lives in rural Anglesey, North Wales. His story:
Simon Parker
In 2000 I was completing my PhD in Pedagogy at Bangor University North Wales and enjoying an active outdoor lifestyle, when I caught a bout of flu that resulted in increasing periods of debilitating fatigue and pain after exercising. I was diagnosed in 2003 with fibromyalgia and ME/CFS.
When I was first diagnosed I underwent the procedures recommended by my local ME/pain clinic (CBT & GET) who advised me to ‘exercise to my full capacity as the condition is temporary’ – a course of action which only made my symptoms worsen.
Luckily I found a ME/CFS consultant (Dr Sarah Myhill) whose tests and approach (leaky gut, PK diet, and mitochondrial functioning, etc.) made a huge difference in understanding the condition and in taking appropriate steps to mitigate the worst of the symptoms.
My symptoms have increased in severity over time and I now spend about 80% of my time in bed and the remaining 20% of my time trying not to over-exert myself while making time-lapse videos of blossoming trees in my locale each Spring.
I still (literally) dream of going climbing and live in hope that the current research avenues will one day lead to a cure or at the least an alleviation of the symptoms so that I could go rock climbing again with my son.
