You see, I just returned from a 5 day road trip with a good friend of mine and I drove the whole time without my pain flaring up. I drove for 5 days without flaring up.
It was not only wonderful, with lots of beautiful sights, new towns, good food, hiking, hot tubs, silence (no radio or tv the entire trip!), and adventure, but this is the most time I’ve spent in a car in over 6 years without my pain becoming an issue.
Could this really mean that I can road trip again without so much angst and worry? I think so. I think I’ve turned a major corner.
Great Sand Dunes National Park – stoked I got to see this!
I must be doing something right…right?
Six years ago I couldn’t sit. At all. There were years (years!) when I couldn’t sit on furniture without intolerable pain, when I couldn’t ride in a car without wanting to scream and squirm out of my skin because the pain was EVERYTHING.
A 5 minute drive to the grocery store would bring involuntary tears to my eyes. Anything over 20 minutes was torture. Standing and lying flat were the only positions I could tolerate.
Bu even more so than sitting, I HATED the car. Hated it. So I didn’t go places. I stopped eating meals out because not only would the car ride be awful, we could only go to restaurants with high-top tables so I could stand throughout the meal.
When we’d drive anywhere I couldn’t be the driver because I’d need to be constantly moving. And no matter how much I squirmed and writhed around, we’d have to stop frequently so I could get out and move around and stretch and feel like I was escaping the hated car for a while.
I hated the car.
And now I can drive a car for 5 days in a row! Amazing!
Just last year my friend and I did a similar trip and by the end of it I was flared up quite a bit.
How did I get from there to here?
There was no magic pill, no surgery, no method, no newfangled treatment or set of bulletproof exercises that got me here. It has been a steady climb to get to this peak, it’s been work, consistency, and years of flexible persistence, as my good friend Bronnie Lennox Thompson puts it.
It’s been trial and error and education, movement and nature, getting creative and being mindful, volunteering and feeling grateful. It’s been loving and being loved. It’s been discovering what is meaningful to me and figuring out how to pursue it. It’s been a whole lotta things, not any one thing.
None of those things happened all at once
Some were gradual, like meditation. I thought about meditation for years before I started actually doing it. I still don’t do it consistently but I do notice quite a difference when I have a regular practice (I use the Headspace app, I highly recommend it. 2017 update – I now use Calm and love it!). It helps me be more self-aware, it calms me down, it helps me focus, I feel less anxious, and it boosts my creative output. It gives me a different perspective.
Some of what got me here has been there all along, like movement. I’ve always at least walked, even at the height of my pain, even if not very far. Moving was always a form of pain relief for me, an outlet, and was always much better than sitting still (well, standing still for those couple years I couldn’t sit).
Some things came by chance, like my nature photography, I didn’t set out to become an amateur photographer, it just sort of happened, and it got me out and moving and seeing the world again. It also helped shift my perspective. Writing just sort of happened, too. I wish I’d started earlier.
Some things I actively sought out, like pain science education. Something else I wish I’d started much earlier.
All of these things have some how come together to get me here
As disparate as they may seem, the underlying theme that ties them together is that they are things that matter to me, that I value, that help me feel connected to people, places and experiences. They are things that I decided along the way are important to me, so I make a conscious effort to do them and stick with them.
Not all at once, not going from 0 to 60, I added them in bit-by-bit, small doses at first and gradually increasing the dose: the length of my walks, the time spent meditating, the distances I’d travel to take photos.
Time in the car.
Flexible persistence vs pacing
Some people would call that pacing but I don’t like that term. I think that pacing focuses too much on the can’t do – the off-limits – than on the can-do. It can turn into avoidance and fear.
I much prefer Bronnie’s term, flexible persistence, to describe how I got here. I just kept trying to do these things and eventually I became smarter about it. I’d take a break if I needed it, I’d try my damnedest not to push too hard and do too much. But I also wasn’t afraid to go to that edge sometimes, to push perhaps a little more than I ‘should’.
There is a balance, and that balance can be hard to find, but that doesn’t mean it’s not worth the effort. It’s definitely worth the effort.
I used to suck at balance. I used to be the boom and bust person who would feel good so do way too much and then massively flare and be down for the count for days or weeks at a time. And when I was stuck in a flare I’d inevitably stop doing all the things I knew that worked for me because all my attention and resources would be devoted to my PAIN again.
It was frustrating, disheartening. I’d fume and feel sorry for myself.
Why couldn’t I just do things like a normal person? Why did everything have to be such a big f’ing deal? Why couldn’t I just drive to the freakin’ store without worry and fear and unbearable pain? Why me? (cue Nancy Kerrigan)
We get through it
But the thing was, I always made it through. And over time I learned the benefits of slowing down, of being ok with doing small bits and working up to doing larger bits.
Over time I became ok with not being good at stuff anymore, with having to start back at the beginning when it came to hiking or jogging or working out.
Or sitting on furniture or driving in a car.
Over time I got over the ‘why me’, I got over myself. It wasn’t easy. And it wasn’t overnight.
But somewhere along the way I realized that I could manage my thoughts and behaviors. That I could control many aspects of my life, even when pain was present.
I realized that I could choose and foster thoughts and behaviors that might even set me up for success, that might even prevent flare ups all together.
Rather than trying to push it and drive really far to see even more, we made short trips frequently. We stopped a lot, I never drove for too long before I was out of the car and moving.
We hiked and walked a lot, too. And by getting out of the car and hiking we were able to see a lot of truly awe-some sights and breathtaking vistas: from sand dunes to waterfalls, rivers to cliff dwellings. And by getting out of the car and walking in small towns we discovered historical buildings, amazing food, and interesting people.
We made the most of all those stops! They were an asset, not a hindrance.
My pain did go up at times, of course. But I didn’t panic as I have in years past when increasing pain would lead me to worry and fret, when I’d stop enjoying myself and focus only on the pain to the exclusion of everything else. When I wouldn’t see those awesome sights and beautiful vistas.
Is it pain management or is it managing thoughts and behaviors?
The key was that I was able to manage my thoughts, behaviors and reactions, rather than trying to manage my pain, per se.
I reassured myself that pain didn’t mean damage or lasting problems, that it wouldn’t be forever, that a little bit of pain was worth being on this amazing trip, that I’d be out of the car soon and could really get out at any time I wanted to simply by pulling over.
I made a conscious effort to not zero in on the pain (such single-minded focus has derailed me many times before), doing full body scans to check in with the whole of me, not just where it hurt. I was present and aware and in control.
I’d focus on my breathing for a bit to calm myself and my systems down. I wiggled and changed up my position frequently. I purposefully tried to stay loose and relaxed (in years past when my pain would go up while I was driving, even during our trip last year, I would become stiff and rigid, hardly moving at all. When I’d get out of the car I was like the Tin Man in need of oil).
I’m pretty stoked about all this, if you can’t tell. And this, too, is a change of mindset for me.
In years past I would be frustrated that I had to actively manage my thoughts and behaviors to control my pain. That I’d have to plan ahead and think about it at all. That I couldn’t just be normal.
But now I’m so grateful that there are things within my control that I can do that allow me to do such wonderful things! It’s pretty amazing, right?
Some would call this successful pain management, but I’ve never liked that term. Sometimes the pain has a mind of it’s own. Flare ups can be inexplicable, stopping us in our tracks, or they can be completely absent when we fully expect them.
So it’s not managing pain so much as managing my thoughts and behaviors, including my reactions to current pain, my projections of future pain and my memories of past pain. It’s about what I do and what I think.
That’s really just about managing life, isn’t it? Something we all have to do anyway, something we all did before pain set in, and something we’ll still have to do if our pain does go away for good one day.
It’s about getting through each day, focusing on things that matter, taking care of ourselves, loving and being loved. It’s about living a life centered around meaning, values and purpose rather than a life centered around pain.
It doesn’t happen all at once
There is no flip to switch. No red or blue pill to take. No thought that can just make it happen. It’s not so simple as that.
It’s been a gradual process for me, as I imagine it is for everyone who travels a similar path. I built up to being able to do this slowly but surely over the years. There was no quick fix, no magic solution (although I tried a lot of them). It has been a culmination of a lot of different things.
I’m over 6 years into this pain thing (which I know is no time at all to some folks and seems like an eternity to others, but remember this is never about comparing, it’s about sharing so we can learn from and help one another), none of this progress happened over night or over a week or over a month. It happened over years.
I have been flexibly persistent. I have tried a lot of different things. It was only when I accepted pain as a part of my life that real change started to happen. Only when I stopped trying to be the old me and started just being the current me.
It takes time.
But that’s the nature of life if we hope to get anywhere worthwhile.
Success, no matter the endeavor, takes time. It happens over years. It happens as a result of what we put into it. It happens when we direct our thoughts and behaviors toward our desired outcomes, toward pursuing the things that matter to us, and we are as consistent as we can be. It happens when we don’t give up. When we take care of ourselves. When we stay curious. When we continue to discover, grow, and learn.
It happens when we are persistent.
I don’t know what the future holds. That used to terrify me, now I’m not so worried about it. I’m pretty stoked about what I’m doing right now. And that stoke is what’s going to make the future better, brighter, more interesting.