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Even If It Kills ME

Lightbox studies (broken idea)I had an idea a couple of months ago that just isn’t budging.

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

$100At 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?

Comments

  1. Have you considered cycling across the states? It might be less wearing on your body since you could break it into shorter chunks, but would still be something you could integrate with creating awareness.

    And I’ve always wanted to do it… (hint hint).

    • Steve Errey says:

      Dude, bro, pal. That’s a pretty good idea. You and me riding across the States? Not sure how much riding we’d get one – we’d be flat on our backs laughing ourselves silly.

  2. Patricia says:

    I had CFS a number of years ago. I did recover, but it took a while and lots of self-care.

    You can contact me for what I did and tips–I could use some logic in my life right now, so perhaps we can do an information exchange.

    • Steve Errey says:

      I *think* I’m on the right path Patricia, but I’d certainly be interested know what worked for someone else. Drop me an email!

  3. Laura Lynn says:

    Ok, so…
    1. You should most definitely do something that doesn’t kill you (please?). You’ve heard some of my ideas already and I still think you should stick with the number 42. 42 minutes of physical activity for 42 days? 42 people running 42 marathons in 42 countries on your bday (one of which could be you)? Walk for 42 hours straight?
    2. I would totally give $, time, an/or physical exertion (eg. run a marathon on your behalf) no matter what challenge you choose. Ask and you shall receive, Dr. Brittain!
    3. This is the Canadian charity that supports/advocates ME/CFS research http://www.fm-cfs.ca/index.html but I don’t know anything about them personally. I think you’d be better off with the UK organizations.
    4. I’m coming to make you an omelette.

    • Steve Errey says:

      1. 42 is pretty cool, as I’m 42 next May it might be nice to tie it in (plus, 42 is the ultimate answer to everything). Love the idea of 42 people running 42 marathons in 42 countries – not a clue how to start on that one!

      2. That’s Dr Britain with one “t”. And thank you hun.

      3. Google is my friend on this one I think.

      4. Swan and velvet. With those special eggs you told me about.

  4. Steve, fellow WDSer, this is such an excellent idea! The wikipedia article you link to suggests Pacing is currently the best way to treat ME. What if you started a side project around Pacing, both as a way to gain confidence in general (your coaching), and to test specific goals for yourself and others with ME? Your campaign can include various tasks you are doing with the goal of finding proper pacing. Just brainstorming here: Housecleaning to walking marathons, to biking Seattle to San Francisco (where I’ll buy you lunch.) Having a serious of goals is good for fundraising campaigns. It allows you to remind people, as you reach various levels and goals, to come back and donate (or invest) more. BTW, Kickstarter has shown that investing in someone else’s goals is often more compelling to people than simply donating to a vague cause.

    You’ve got a great story to build. I can’t want to hear more about it.

    • Steve Errey says:

      Thanks Dave, really appreciate your thoughts on this. Pacing isn’t a total treatment or cure, but it’s certainly a strategy that comes in handy and if I do a physical challenge then I’ll most definitely need to pace myself in both training and execution. An interesting idea to grow the activity over time as part of the campaign – hmmm…

      Good call re Kickstarter too. Keep in touch Dave, was great to meet you in Portland : )

  5. I think you have a real opportunity to educate people about CFS. I like the number 42. As a runner, I don’t like the idea of 20 marathons in 20 days. Even if you walked it, it would be a lot. It would be a lot even for a conditioned runner. Marathons are macho and the thing that you said that really resonated with me was, “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.” I LOVE this insight. So, maybe the key is finding away to show this partnership you have with CFS and how you’ve integrated it into your life.

    I see a documentary film. A film of a man courageously living an amazing life in spite of a debilitating illness. I see it filled with the highs and the lows, the good days and the bad, the challenges and the special insights and joys you’ve garnered only because you have CFS. I see and opportunity to educate and share all you’ve learned. Profits from the film fund research. Good luck and keep us posted on whatever you choose to do. Sending LOVE.

    • Steve Errey says:

      I hear you loud and clear Denise, and totally appreciate your thoughts. You’re right, what I do needs to demonstrate the partnership rather than highlighting a fight – makes perfect sense. Thank you.

  6. Steve! I haven’t read the post yet, I’m just making some tea so I can sit down and do just that, but I wanted to tell you how much I LOVE the “dent the universe” line. WOW! I love it! That’s what I’m setting out to do, newly, so thanks for putting words to it!

  7. Wow, I love the idea that you want to do something to raise the profile of ME/CFS and raise funds for research. I’ve had it for 16 years and have learnt much about it’s evil ways, but also learnt lots about how to manage it, live with it and even thrive with it.

    It freaks me out tho that you’d take on a challenge that could scupper your health or recovery – the bottom of the pit is invisible until you hit it. One thing newly (and not so newly) diagnosed people struggle with is asking for and accepting help. My idea would be a marathon relay but you recruit other people to do the running for you while you get to shake the bucket at the start and finish to raise funds and awareness, and also highlight how friends and families can support ME/CFS sufferers to have the best quality of life their level of energy allows.

    How long is a marathon? How many marathons would it take to cross the States? Could you make it a non-stop relay? How long would it take? How many people would you need? How many personal networks could you tap into with all those people on your team? Kind of like the Chronic Fatigue Olympics Torch Relay but without you having to actually run anywhere 🙂

    Save your energy to bang your drum, get PR, raise funds and manage the whole thing – let those with the health, stamina and energy be your legs for the challenge. It will highlight how much of ME/CFS’ers life is spent sitting on the sidelines watching other people get all the action.

    Keep me posted, I’d love to hear what you choose to do 🙂

    • Steve Errey says:

      Louise – I love ya! 16 years sounds like a long time, but you know what? I’ve learned so much about myself in 5 years with it that I can’t even imagine how I’d benefit from 16 years with it (assuming of course that it continues to be manageable).

      You’re so right about the bottom of the pit being invisible until you hit it – we’ve both been there I think. I have no interest in putting myself in that pit (or worse), and I totally appreciate your concern.

      The idea of a marathon relay is really intriguing. Doing some quick maths it looks like that would be approx. 120 marathons to reach across the USA – I love the idea but wouldn’t have the first clue as to how to start a project like that. I guess that’s why they call it a challenge, right?!

      Thanks so much for your thoughts Louise. Let me know what I can do for you.

Trackbacks

  1. […] written before about how much CFS/ME means to me and how I want to do something to help others with the […]

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