The first time I told someone that I'd been diagnosed with ME, I choked on the words and found tears welling up in my eyes.
So I blurted it out, then hurried away to pull myself together and man up.
Since then it's been a rollercoaster.
With some outstanding views at the top and a load of white-knuckle twists that make you want to throw up, it's made me get myself together in ways I'd never have guessed at. Here are eight things I've learned from nine years of chronic illness.
1. Other people don't need to get it
I've tried explaining the illness to friends, colleagues and family before. How every morning when I wake up it feels like every bone in my body is broken. How some days it takes all my strength and concentration just to stand upright. How the brain fog makes it impossible to pull out a coherent thought for days at a time.
I've wanted to make people understand, because then it feels like I'm not quite so alone in the experience.
But it never quite works, because other people aren't inside the experience with me and can't know what it's like.
And that's okay. Other people don't need to understand what's going on for you in order for it to be a real and valid experience.
So, I've learned that giving people my best is more important than having them understand my worst.
2. Energy is finite
My body's batteries are broken.
The mitochondria in my cells don't produce enough energy to keep the lights on, and constantly trading energy between different activities like taking a trip, going out with friends, starting a new project or celebrating a family birthday gets really frustrating.
Energy is the currency you spend on your decisions; more energy equals more choice.
So, over the last few years I've learned the value of that energy, the value of the choices that it affords and the value of the behaviour that it buys.
So, I've learned that however much energy you have, the fact that you get to choose how you spend it is wonderful.
3. Experience is a matter of choice
A long, crappy day at work. An argument with a friend, partner or family member. Spilling coffee down your front. Getting stuck in traffic. Hearing bad news.
A crappy day makes for a crappy experience.
It's about circumstances. Crappy circumstances get into your head and turn your thoughts into a sludge of "get me out of here", "this sucks" and "I hate this". And then what you've got is an experience that's a whole heap crappier than the circumstances deserve.
So I've learned that those days when the illness is tearing chunks out of me don't need to turn into crappy days.
I've learned that the way my body is doesn't need to to dictate my experience.
4. Separation screws you up
Mindfulness meditation is about acknowledging what's happening, from your breath to sensations in your body to the sounds around you, while never judging them and never letting "self" be swept along with them. It's been a huge help to me.
But sometimes I've used mindfulness as a way to control my experience and separate myself from the ways things are, telling myself that the things I'm observing are all good in themselves as long as I don't have to experience them directly or fully.
Not only is using mindfulness to control experience a dumb-ass thing to do, but it's damaging like putting a kitten in a blender.
I've learned that even though it's messier, acceptance and integration is beautiful.
5. Anger leaks out
I get angry sometimes.
When I hear someone whine about having a cold. When people exclude me because they know I'll say "No" to going out. When I see people out there spending boundless amounts of energy and making cool things happen. Or worse, when I see people out there spending boundless amount of energy and making nothing happen.
It's frustrating as all hell to not be able to do stuff you want to do because your body won't let you. And when your choices are limited on a daily basis, that's a lot of frustration.
That leaks out.
And anger sits on top of it.
I've learned that anger always sits on top of pain.
And rather than choosing to reside in that anger, I'm much better served to spend a little bit of time hanging out with the pain that's underneath.
6. Rest is pro-active
I love to write. I love to laugh. I love to help. But when the illness forces me to rest because I can't take another step or think another thought, I beat myself up for not being more productive.
Why haven't I written another article? Why aren't I out having fun with good people? Why haven't I finished the novel and why aren't I out getting more clients?
That thinking relies on believing that productivity is good and rest is bad. Which is, of course, BS.
I've learned that choosing rest affords me the energy to do the things I love, and so it can never be a waste.
7. The Difference Machine
You might think that trying to add value and make a meaningful difference in the world with limited energy and clarity would be like filling a car with a liter of prune juice and trying to drive across the Serengeti, but there's something interesting that happens.
The capability to have a meaningful impact isn't constrained by the energy available, but expands based on the congruity of intention and the love felt.
Anyone can leave a room better than when they entered it. Anyone can empathize with someone in pain. Anyone can lighten someone's day with a smile.
So, I think what I've learned is how important it is for me to leave things better.
8. Story is Everything
Sometimes I slip into a story, as seductively as you might slip into a 5 star, 1500 thread count hotel bed after 24 hours of travelling.
I'm hard-done by. Other people have it easy. I won't get where I want to go.
Sometimes I just let that happen because I know it's healthy and okay to have down days. Other times, I stop for a moment and wonder just when I became a victim.
Those stories only tell one, narrow, horribly skewed side of the way things are or the way things can be, and the narrative you tell yourself sets the parameters for your experience.
I'm no more a victim than I am a small horse or a bugle. The illness doesn't "rip me to shreads", it just finds new ways to challenge me. Other people don't have it easier than me; many have it much, much worse. I want to do things that matter, but I don't need to be pious or rigid about it. I may need to go a little slower, but I still love the smell of progress in the morning.
I've learned that the story you choose becomes the world you inhabit.
So I'm busying myself with making it a beautiful one.
Photo by Keoni Cabral, on FlickrSuggest a correction