Founder of Health Rising and Phoenix Rising
A lot of people think you're faking being sick, but we're actually faking being well. And that's it in a nutshell."
I must say this one had me a bit weepy...
When Graham Cozens saw Paul Clegg, it took a few moments but he eventually remembered they'd known each other back in the day, 20 years ago, when they had the strength to be young and strong.
I was just thinking about someone I know - so successful, so smart, so everything - and it just hurt! I also thought that there is no way that she could conceive of ever falling so hard - of something like ME/CFS that changes everything - her body and her mind - leaving her a shell of what she was. Like me...It would never happen to her...I'm sure she feels that way. I would feel that way.
But here's this guy
About 15 years ago Clegg was an IT consultant and competitive cyclist preparing for a two day race, in which he expected to do well.
He suffered dizzy spells the week before, then in the race he was hit by complete exhaustion - instead of stopping he was so determined to finish he ended up pushing himself through both days of the event.
The exhaustion and dizziness was the start of his life with ME - and he has never been right since.
He said his six figure income was now cut down to a four-figure income and he was supported by his wife.
"It's all sorts of things - it's fatigue, you get muscle fatigue itself. There's a head kind of thing you get, dazed and confused... piece by piece that cost me my career and just about everything else in the process."
IT'S AN AMAZING ILLNESS!
Then there was the outdoorsman. You know this guy was a bear!
Cozens was a "mad-keen outdoorsman" working as a building inspector, but always wanted to use his building skills to help in a developing country.
He went to the Solomon Island's as a volunteer helper in 2004 for two years and was "hammered" by five bouts of malaria and one of dengue fever.
Cozens came home, and never recovered - after about five years of medical testing his GP said he might have ME.
"I went home and googled it, saw the list of symptoms...and went 'oh bugger'. Because I really wanted them to find something wrong they could throw some medication at and I'd come right."
Two years ago he was forced to give up work completely and left Wanaka, where he was living, to be close to family in Te Horo.
"It's like on an average day I've got an hour's productive energy... so you have to decide how you're going to spend that. I enjoy walking on the beach but I know that means I'm not going to get the washing done."