A lot has changed for me this past year, I’ve experienced successes I wouldn’t have imagined possible 6 years ago (heck, 3 years ago, or even just a year ago). But this most recent success is a pretty huge one for me, even bigger than the long hikes, starting to run again, and snowshoeing adventures that have happened in this past year.

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. Pacing and flexible persistence have led me to the life I want to live

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.

And 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). 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 I decided along the way are important to me so I made 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 has to be a willingness to try things and keep persisting at them, even if you can only do them for a short duration or in small increments at first. The key is gradually increasing the duration or the activity, nudging the pain a little bit. Too many folks forget the progression part, they limit themselves unnecessarily, that have a whole list of ‘can’ts’ or ‘shouldn’ts’ but have never really tested whether they were legit.

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.

Flare ups

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.

By managing my thoughts and behaviors I am able to travel without flaring up

Treasure Falls

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)

But the thing was, I always made it through. And over time, through trial and error, 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.

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.

Mindset

So happened on this trip to make it so different? I think a whole lot of things just fell into place. I thought differently. I behaved differently. I reacted differently.

Rather than trying to push it and drive really far to see even more, we made short trips frequently. We never made big pushes. 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. And by getting out of the car and hiking we were able to see a lot of truly awe-some sights, breathtaking sights, 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.

My pain did go up at times, 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.

Is it pain management or is it managing thoughts and behaviors?

The keys here, I think, were that I was able to manage my thoughts and behaviors, rather than trying to manage my pain.

I would reassure 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 (which 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 would focus on my breathing for a bit to calm myself down. I would wiggle and change 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, like a robot in need of grease even after getting out of the vehicle). I’d stop and get out of the car as often as needed.

Managing life

I’m pretty stoked about all this, which is also 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. 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.

It’s not managing pain so much as managing our thoughts and behaviors, our reactions to current pain, our projections of future pain, our memories of past pain.  It’s about managing life, which we all have to do anyway, which we all did before pain set in, which we’ll 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 life, which we can all choose to do.

It doesn’t happen all at once

But this shift in mindset also 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 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. 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, but it was only when I accepted pain and started focusing on the things that I value in my life that real change started to happen.

It takes time. But that’s the nature of life if we hope to get anywhere worthwhile.

Success, no matter the endeavor, doesn’t happen overnight or over a week or over a month. 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 and I’m not too worried about it because 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.

Being in the present, being ok with the present, managing the shit I can manage (thoughts, behaviors, reactions), not ruing what once was or worrying about what will be, allows the future to unfold.

Through managing our thoughts and behaviors, we can live the life we want, even in the presence of pain
 Mesa Verde National Park, Spruce Tree House
 As always folks, thanks for reading my post. I’d love to hear your thoughts, experiences, questions, concerns, feedback…give it to me! Leave a reply or hit me up on social media.
If you like what you read here, sign up for my monthly musings! In the monthly(ish) newsletter I share lots of links to interesting news stories, blogs, and research articles pertaining to pain and life, along with my musings on them, of course ;) Thanks again folks, without you there would be no MyCuppaJo. 
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6 Responses to "Managing thoughts and behaviors when living with chronic pain: lessons from a road trip"

  1. Amen!
    Very well said. Congrats to you, you continue to conquer!

    About 3 months ago I came across your website. It ignited my belief that I had chronic pain and inspired me to lean into my emotions and mindset, to learn about pain science, and to trust my own instincts. It made me believe that I could find how to creep my way out of this, that I would start re-building a meaningful life.
    I think you gave me that human CONNECTION, I saw reflections of myself in your story, and you were much further along the path in overcoming your pain.

    Luckily, I also decided to meet with Greg Lehman (you mentioned him in the Pain Summit entries). He was able to ky-bosh all of my biological and physiological theories of my symptoms, and those that other therapists labelled and critiqued me with. This took all the wind out of the sails of my fear and my need to be that perfectly stiff robot (but trying not to think about being a perfectly stiff robot, pretending to try to move ‘naturally’, even though I had lost a mental grip on my ability to move and use my body at all!).
    Anyways, Greg also gave me just a few meaningful exercise tips on how to start beating the pain and moving again. It felt so incredible to move again, and I had the freedom of knowing I did not have tissue damage, so there really wasn’t anything that I was restricted to.
    Progress has sky-rocketed. I did also read the Protectometer and Explain Pain (both recommended by you).
    Like you say, mindset is so important. When I feel some of my old symptoms start to creep up, I do an inventory of my DIMs and SIMs (dangers in me and safetys in me- from the Protectometer). I also find that now I get anxiety instead of pain, I can just feel the nervous system coming into high alert and like my brain is heading towards being on the fritz.

    I’ve been doing crossfit workouts for a month now. This was so super scary at first but now it’s so much fun. When I start feeling muscle fatigue (which used to be a huge flare up cue for me, after 2-10 minutes of walking) and I feel uncomfortable, I just think about how grateful I am to be working out, to be out of the house, to be doing something that I want to do and think about how far I’ve come in 2 months.
    I’m enjoying starting to practice all the other new helpful mindsets and self-talk that I’ve had the opportunity to learn while struggling with my 2.5 year bout of “injury”. When I workout, when I do yoga, it’s for ME. I know what I’m gaining from it, it doesn’t matter what other people are doing, what they are thinking, we are all on our own paths. They don’t know my journey and how far I’ve come, but then again, I don’t know their journey either.

    I’ve had some psychotherapy, and even a hypnosis session which helped me with my self-doubt. These have really helped tie all of my life-learning together and personalized the lessons for me.

    I’m not really able to think about all of my suffering yet. It’s relieving to hear your account of the fear and discomfort in the car, and of sitting, and of only going to high table restaurants. I had so many rules like that, but it created so much friction between me and my husband. I look at some things around the house that were all giant obstacles to me 2 months ago (the baby gate, the sliding door to the deck, my toddler son, a full carton of juice), and I feel almost sick to recognize what a miserable life I was living. It’s like now I can feel the emotional pain of it, but at the time I had to pretend it wasn’t that bad. Anyways, it’s certainly a murky and painful sludge of memories right now. I prefer to think about my gains, like the first time I got to chase after my son (I’ve been injured his whole life), so it’s like the first time I get to really full out play with him. It feels so good to not settle for a restricted life.

    But, like you said, flexible perservearance. Giving yourself “outs” so that your nervous system keeps feeling safe. Forgivable “breaks” or “modifications”, ways to slowly build up your exposure to new activities/circumstances/stresses and knowing that your listening to your needs and you will continue to add on or remove more of the modifications next time.

    I feel so enlightened from my experience, I feel I need to help others, but it’s so hard to know what part of my experience will be the piece that will help them. They have to be ready to give this approach some space to grow.

    I just want to say, that what you share on your website, and all the links, and all the parts of your story have worked for me! You ignited my abilities to change. Thank you.

    I haven’t had a set back yet, running has been the hardest activity to get back to, and I get to start a return to work next week.

    Being mindful of behaviours, mindset, self-talk, reactions, all of the safetys and dangers around me are things that I still have to constantly practice. But, like you said, this is life. This is human.

    How about those Colorado Sand Dunes!

    Thank you for all that you share.

    • Kyla, I am so grateful for this message, thank you so much for taking the time to share your story with me it has made my day! You have no idea how much reading something like this means to me.

      I am so happy that you came across the site and that it helped in some way. As you said, sometimes we just need that human connection to jump start us, to show us that we’re not alone and that others have successfully traveled similar paths. That’s why I started MyCuppaJo, I felt so alone for too many years, I felt that no one understood, that no one could. And when I started sharing my story, I realized that I was far from alone, that there are too many of us silently suffering with chronic pain.

      So thank you for sharing your story, too. I think the more voices we add to the mix, the more people that will be helped (those who have pain, those who love them, and those who treat them!). I think you are well on your way to helping others just by sharing of your story here, it helps to start to formulate those ideas, to put words to your experience, that will help you to move forward. There are no specific pieces that are the ‘ticket’, it’s the whole journey that matters and that journey will look different for everyone but all of them will have some similarities. From my experience, and it’s echoed in your own words, I think that pain science education kind of lays the foundation for a successful way forward because it helps to alleviate some of the fear and anxiety and allows us to pursue other strategies that work for us a bit more effectively. And I think having a movement guide is also a powerful way to further overcome some of those fears, hesitations, doubts that we have about ourselves and our ability. We’re so much stronger and resilient than we think, yet we often feel broken, fragile, and weak when we’re in pain, so having that reassurance and guidance (a permission, so to speak, to move again) is so important.

      I can absolutely relate to your feeling of being a perfectly stiff robot whilst trying not to be/think about being a perfectly stiff robot! I became neurotically hypervigilant about my movement and postures, trying to move, sit, stand, sleep ‘right’. The more I focused on it all the less naturally I moved, the less naturally I moved the more I thought about it and tried to control it even more. It was a vicious cycle! I started feeling the like the Tin Man and I know I walked like a penguin, it was awful! It wasn’t until I said screw it, I’m not going to obsess about this so much anymore and just let it go that I finally started to be able to move more freely, naturally. And it felt so good! But I had to give up that idea of perfect posture and form that had crippled me before, that I had believed in for so long.

      I am a bit counter-rotated between my hips and torso, a lot of folks are, and I tried forever to straighten myself back out. I thought that was keeping me in pain. But once I gave up those notions my pain went down, my function went up, my life got better. And I’m still counter-rotated ;) None of us are perfect and none of us are the same anatomically. And our anatomy can change over time as a result of injury, aging, or surgery. My hip was surgically repaired, my femur was reshaped, cartilage was taken out – how could I expect it to act just like it did before? It doesn’t like being in too much internal rotation, that used to stress me out like you wouldn’t believe, I’d try to force it. But you know what? We don’t need a whole lot of internal rotation to do just about anything. Our bodies have an amazing ability to figure out movement solutions to whatever task it is that we want to accomplish, if we let it.

      Sorry – I’m going off a bit! My next post is about movement so it’s been on my mind :)

      Getting back to your message, I’m so stoked you went and saw Greg Lehman! I love that guy, he has such a wonderful approach to teaching I can only imagine what he’s like in a therapeutic setting. One of the best things that ever happened to me was having my fears about movement, worries about damage, and doubts about my abilities gently challenged by a Danish physio named Simon. For me much of it was anxiety, which makes pain go up (and then when pain goes up, anxiety goes up) so I can relate to the anxiety statement, too. I always had some underlying anxiety but it became pretty awful after my pain issues crept up. I actually think that’s part of why mindfulness training works for folks with pain, I think it helps control anxiety and helps to give that self-awareness of when anxiety is going up or the nervous system is getting ramped up and allows us the ability to take measures to calm it down. I think the DIMS and SIMS are a great way to help us focus on what we need to work on, too. So much of it is just awareness! I feel like when I was in the worst of my pain the only thing I was aware of was pain, I never thought about anything else.

      Try not to worry too much about having to look back, reflection will come with time when you’re ready, it doesn’t have to be done right now. And the answers aren’t in the past anyway, they’re in the now. i try to keep focusing on the present without ruing the past or worrying about the future. It’s not easy! But I think it’s the best way forward. And forgiving ourselves, loving ourselves, and being allowed to just be ourselves, even within any limitations we may have. Even with limitations, there are still endless possibilities. It’s ok to take breaks, to give ourselves outs, to modify when we have to. The important thing is that we’re pursuing what matters to us, that we are living meaningfully and with purpose. That we are loving and being loved :)

      I could talk forever so I’ll spare you and sign off ;) I would love to keep in contact if you would like to (and won’t be offended if you don’t!).

      Best to you and all that is to come. I’m so happy you shared your story with me, it means more to me than I could ever express. Thank you.

  2. I’m so thrilled for you. Sounds like your 6 day trip was a lesson on slowing down, managing your time, and enjoying the ride as you go. All your trials and efforts in the past 6 years have finally come to fruition, thanks to your conscious hard work. It was a long 6 years and I know you’re relieved to know the “sun is starting to shine”.

    I see it stopped snowing the past few days, so hope you two will be back to Carlsbad soon.
    It rained the past two days and the grass and trees and flowers are lovin’ it.

    See you soon???

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