Two Old Friends Meet - and Discover Each has ME/CFS: Great Article from Down Under

[Cort]

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...

• http://www.stuff.co.nz/dominion-pos...scover-shared-rare-disease-at-support-meeting

It was this line that got to me:

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."

Wow​

 

[TigerLilea]

It's good to see a CFS story about grown men for a change, rather than teens and women. Hopefully this will help some of the naysayers who think this is just something that happens to emotional women who can't cope.

 

[San Diego]

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.

It is inconceivable. It was to me, and it will be to the next person to fall - and because it is inconceivable, most of us do a lot of damage by pushing ourselves too far before we are diagnosed.

There was simply nothing in my pre-ME/CFS world that could have prepared me for what was to come. There was no flu, no exhaustion, no cognitive issue, no pain, nor any other symptom that could remotely compare to the whole of ME/CFS.

Had you asked me, pre-ME/CFS, I would have told you I'd experienced all those symptoms and more during “normal” illnesses and life. How wrong I was.

What I did experience during “normal" illnesses, however, was the knowledge that I would soon be better - and that alone makes any comparisons pale. Oh, to be young (and naive) again!

 

[Cort]

It is inconceivable. It was to me, and it will be to the next person to fall - and because it is inconceivable, most of us do a lot of damage by pushing ourselves too far before we are diagnosed.

There was simply nothing in my pre-ME/CFS world that could have prepared me for what was to come. There was no flu, no exhaustion, no cognitive issue, no pain, nor any other symptom that could remotely compare to the whole of ME/CFS.

Indeed. I imagine this "inconceivableness" is one the problems we meet up with in the medical world. Things like this rarely happen - so they don't get it. It doesn't fit well in their frame of reference.

 

[Cort]

It's good to see a CFS story about grown men for a change, rather than teens and women. Hopefully this will help some of the naysayers who think this is just something that happens to emotional women who can't cope.

Indeed - these were two hard charging guys!

Dr. Peterson always highlights guys in his lectures to remind everyone this is not just a woman's disease.