I’ve learned to listen to those; it’s a sign of something important.
The idea is there but its execution is being tantalisingly elusive, so in the interests of progress and having just attended my second World Domination Summit, I’m opening up the idea and asking for your input.
Introducing my new best friend
I’ve had Chronic Fatigue Syndrome for just over 5 years now, which if you don’t know, is your basic incurable chronic illness. It’s pretty impactful, with neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. There are people with the illness who are bed-ridden for decades, unable to work, participate in relationships or even care for themselves.
It has the ability to take away every capacity for an individual to live their life.
It destroys lives.
- There are days when I’m in so much pain it’s the only thing that exists.
- There are days when I can’t pull a single thought out of the fog in my head.
- There are days when I’m so dizzy and nauseous that I fall over.
- There are days when keeping my head upright and my eyes open is near-impossible.
- There are days when I can’t walk more than 10 yards without needing to rest.
- There are days when normal daylight and background noise pound at me.
- There are days when I wake up unable to move, like a building fell on top of me.
To say it’s misunderstood is like saying that the sun’s surface is a little too toasty for bare feet or that the Kardashians are a little publicity hungry.
There are doctors and health professionals who believe that CFS doesn’t even exist, and many more who argue over the definitions of the varying names (ME, CFS, CFIDS, etc.). None of which seems very helpful when it’s handing you your ass on a silver platter.
I’ve had it for just over 5 years now and while its severity varies wildly, it’s with me every day. I gotta say, I’d rather that it wasn’t there at all.
When I was diagnosed I puffed out my chest and was squaring up for a fight, all “Okay peppy, let’s see who wins this one” and misplaced machismo. I was determined to beat it and saw it as a fight where there could only be one victor.
I was naive.
This isn’t a fight, and if I look at it that way I’ve already lost. It’s a partnership. Instead of fighting and struggling with the illness I’ve learned (and continue to learn) to integrate it. It’s a buddy who’s with me on my journey. I understand him, he understands me. We respect each other. We listen to each other and help each other out in the tough times. We walk in the same shoes and we both want an extraordinary life.
We’re a team.
My experience with ME has been a rocky one, but I’m one of the luck ones who can live a “normal”, if limited, life. What I’m learning will benefit me for the rest of my life and I have a very real feeling that it has more to show me; more to teach me. I have the sense that there’s something truly extraordinary that it wants to show me, something that I’m meant to understand.
I get goosebumps thinking about it.
It’s the most misunderstood, hidden and underfunded chronic illness in the world, with over a million people in the USA and over 250,000 in the UK with the illness. Millions more right around the world. Each of them having their lives stripped of the things that make them feel alive in order to stay alive.
It kills people.
So I want to do something about it.
I want to raise some awareness and get some funds raised for research. So follow my logic here.
To raise funds and awareness I need to do something that’s PR-able, and for a guy with ME to create a story that’s richly PR-able it needs to be a physical challenge.
Makes sense, right? So my original thought was to walk 20 marathons in 20 days. Or to walk from Seattle to San Francisco. Running takes way too much toll on my cardiovascular system and my heart routinely goes into standby when my body runs out of energy to support it, so I need to think carefully about a challenge that’s big enough without it killing me. I need to find something that I can train for gently, as the training alone can lay me out for weeks.
I recently took Julien Smith’s cold shower challenge thinking that I was a wuss not to give it a shot. It was like I’d been beaten with a shovel and took me a week to recover from. I literally have no idea what my body can support.
I’m not interested in being a martyr.
I’m not interested in being a poster boy. I’m not interested in being defined by the illness. I’m interested in doing something that matters to me and having a positive influence on something I care about.
$100 to begin
At the end of the World Domination Summit Chris handed out $100 bills to each attendee, and invited us to do something that mattered with it. So whether in preparation of the challenge, in its execution or in its follow up, it makes abundant sense for me to use my $100 in this direction.
What better way to use it than in something that’s a deep part of me and something that could change the lives of others with this illness?
So this is where I could use your help, both in terms of the challenge itself and in terms of a great ME/CFS charity to work with.
What could I take on?
What challenge would make you want to give?
What charity or organisation do you know of that’s doing great work for ME/CFS?