Back pain reflections

In my previous post I described my adventure with back pain in 2016 - basically describing what happened when. In this post, I’m pulling together what I learned from the whole experience.

(In case you didn’t read that note, the brief summary is: I developed mild back pain in May that developed over the summer into massive, continuous pain along my entire right leg caused by a herniated L4/L5 disc. I stopped riding, walking, and traveling. I tried many different treatments; none worked until I had back surgery in late December. As I write this in February, I’m on the path to recovery that will take months, and pain is no longer significantly limiting me.)

So, those reflections.

Health is part prevention, but mostly luck.

I want a reason that this happened. I want to know what I did. I want to know what to do to prevent it again.

We don’t have a reason.

We have all sorts of possible reasons, possible factors. A bent bike seat. Bad posture, maybe. Bad mattress, bad shoes, bad bag? Probably not. Consequences of my bike crashes from a few years ago. No one knows. I asked my surgeon, and he said, “well, it’s either environmental or genetic”. … yeah, that pretty much rules out nothing. I mentioned this frustration to an M.D. at work, and he nodded. “Pretty much all of healthcare is that way. Causes are often unknown and effectively random.”

So, in other words, for all those healthcare conditions out there, you can try to do something to decrease the odds of them happening to you, but you generally can’t do anything to fully prevent them.

I suppose this should make me feel good, since perhaps I didn’t do anything to cause this disc herniation. It just happened. Not my fault.

But, no, it’s maddening.

First, almost everyone asks or thinks, “so what did you do to hurt your back?” “NOTHING” is just not a satisfying answer. Moreover, that question implies fault.. guilt. “What did you do, you moron?” They might not mean that, but I heard it.

This has led me to one of my deeper reflections from this whole thing, which is increased sympathy for those struggling with illnesses. There’s a whole ethos out there that implies “you get what you deserve”. If you get sick, it’s because of something you did or didn’t do. Intellectually I’ve known that’s not true… whether or not someone gets cancer might because of lifestyle choices they knowingly made, but in most cases, it’s just simply random bad luck, or something entirely out of their control or awareness.

Now I understand this lack of cause and effect a little bit more emotionally.

One of the side effects for me is that I land fully on the “healthcare should support everyone... not just those that can afford it” side of the argument.

Gratitude. And gratitude is fleeting.

My initial reflection on my list was “I’m recovering. I’m lucky.” And this is because there are so many people out there with conditions that don’t get better over time, or that prove to be totally debilitating or fatal.

So, really, I’ve got nothing to complain about.

It’s also true that I’m fortunate to be in a situation where I could deal with this condition without major changes to my lifestyle, and where I had so much support. I was able to keep working, despite not being able to travel. I was able to depend on my wife, my family, and a support network to help me when I could barely move.

I’m lucky that I live in an era where this type of surgery exists. If not, it would have been something I would have had for the rest of my life… and, not that long ago, it would have severely limited my lifespan.

I’m also finding, though, that it’s hard to keep gratitude at the front of my head all the time. Now, even as I’m working through recovery and continuing to cope with my pain, I mostly think of it as something from the past, something that’s no longer a concern, something to move away from. It’s hard to appreciate how different life was and could still be.

I’ve got to take the time to occasionally reflect on that, and to think about everything that helped me to get to where I’m recovering, so that I can appreciate it appropriately and do my part to contribute.

“Normal” life is precious and perhaps not so normal.

Normal life is so many boring things. Walking around town without stopping to recover every block or two. Reaching into the back seat of a car from the front. Doing dishes. Going to the mall. Putting on socks without thinking about it. Sleeping more than four hours at a time. Playing games with kids. Going somewhere on a whim. Having a choice about how you spend your weekend, in some way that isn’t basically all lying down.

Enjoy it while ya got it.

Man, there’s a lot of people out there with back pain.

I had no idea.

The really frustrating thing was not knowing what was going on.

We didn’t really know until the MRI what was wrong. It was just a steady increase in pain and decrease in ability to do things. After the MRI, it still took months until we knew what and if anything would help.

We were continually waiting for the next assessment, the next decision, the next outcome. Everything was on hold for that.

Between holistic care and the healthcare system, give me medical science.

There’s an anti-science, anti-medical mood out there. Youtube is LOADED with people who can fix your back. You want to avoid doctors, because they treat the symptoms, not the disease. Or they treat the results of the test, not the person. Or because they are pre-disposed to overcharge and overtreat you. Or because healthcare is actually not good for you - better to be organic and natural.

Sure, I’d like to avoid surgery if there’s a viable non-invasive alternative.

But, over and over, I found that the medical professionals I talked to were able to give me an assessment and advice that was based more on data and experience than on opinions and hopes.

Yeah, the healthcare system is a mess. Yeah, the insurance companies are a problem. Yeah, this could have gone faster. But ultimately, I found several good people in the healthcare system who knew what they were doing, and they’re the ones who got me on the path to recovery.

This stuff doesn’t happen at once. It evolved. Gradually.

Now, I describe it as “I lost 8 months of 2016 to back pain, and surgery seems to have fixed it”.

In reality, it was one small thing at a time, gradually adding up to the entire mess.

As in, “hmm, I’d better check with my doctor”, and the next thing I know, I’m signed up for 8 weeks of physical therapy. And then a bit more.

Or, “gee, that hurts. Maybe I should stop riding my bike for a week to see if that helps”. And then I didn’t get back on my bike again.

Sometimes things change over night, but sometimes they slip away in little bits.

The time lost to managing conditions like this is insane.

When someone says, “I went to PT twice a week”, that means:

  • They found two hours in their schedule every week in which they could go to PT when PT was open.

  • They drove there, did the PT work, and returned. If you work in the city and have PT near home, that can clobber 2-3 hours of useful work time.

  • They spent time at home, possibly every day, doing what they were told.

This can take 10-12 productive hours out of your life every week. I don’t know about you, but I didn’t have that kind of time to spare.

And that’s just PT. That doesn’t include “I’m in so much pain I can’t think… I think I have to lie down and stare at the ceiling for an hour.”

It’s not the pain; it’s the impact of the pain.

Typically when I think about pain, I think of the sharp sensation that courses through your body, making you wince... the feel of stubbing your toe, or slamming your shin into a bed, or having a headache, or breaking a rib.

That kind of pain - the feeling of that pain - doesn’t really bother me or scare me. That wasn’t really the problem. Like, yeah, it hurts, but you just grit your way through it and move on. I’ve always been told I have a high pain tolerance... that might be true, but I have no real way of knowing it. I never take pain medication; I’d rather know what’s going on. I’ve probably learned a lot more about absorbing pain and focusing past it with all the bike training I’ve done.

It turns out pain is far more complicated than that feeling of pain.

Some things I learned about pain while going through this:

  • The most significant impact of continuous pain is how it drains your energy and ability to focus. For months, I could not sit and work at the computer for more than 10 minutes at a time, because of the pain. It wasn’t the pain itself, it was the fact that having that pain in my body dragged my brain, my focus, and my energy away from the thing I was trying to do. I could ignore the pain for only so long, then I had to concede to it, collapse down to floor, put my legs up on something, and just zone out, letting it all fade away. Then, after a while of doing that, I’d get back up and take another run at my email or the document I was working on.

  • Pain hurts you, even when it’s not actively hurting. I began to feel like my body was always dealing with the pain, even when I couldn’t feel the pain. My responses would be dulled, my energy sapped. I would find that when I was lying down, the pain would fade... but I still couldn’t muster the energy to focus on something. It’s as if everything you have is going into managing the pain, and when the pain goes down, everything relaxes and takes a break.

  • Pain is really hard to measure. The standard question is “on a scale of 1-10, how bad does it hurt”? I answered that question a lot, but never felt like the answer was particularly accurate. Pain changes, and is different in different areas. It has different impact. I began to categorize pain as:

  • Changing: steady, or variable, or growing, or finishing

  • Intensity & impact: mild (there but not really bothering me), serious (there and impacting me), really bad (there and stopping me from doing anything), nightmare (making me pass out). Sneezing was a nightmare... 11 out of 10.

  • Location: each of which might have different intensities and changes

  • Now that I’ve had surgery and the pain is considerably lower, I’ve realized the pain was always bad last year. It was never below a 4, ever. What felt like mild pain was only mild compared to where it had been.

Normal life takes a ton of energy.

This is a corollary of the pain thing. The problem with the pain wasn’t the pain, it was the way it drained energy.

And now I begin to understand just how much energy it takes to get up early every day, workout, head to work, get cheerful, eat healthy, hit deadlines, focus on things you’d rather not, commute, spend quality time with the kids, avoid the news, ...

I put on ten pounds.

Not a reflection really, just a whine. That’s what happens when you stop exercising and don’t have the energy to drive the willpower to always make smart diet decisions.

Fallout 4 is an amazing game.

Also not a deep reflection.

My main way to cope was to stagger down to our basement, lie on a yoga pad, put my feet up on a stool, put a heating pad on my back, and play Fallout 4 on the Xbox. Playing didn’t take an enormous amount of energy or focus, and distracted me from the pain.

I eventually beat it in survival mode with no mods. Other game enthusiasts will realize how ridiculous this is.

I’m blown away by how great that game is, in so many ways. The depth and complexity of the world is impressive. The stories are compelling. The game play is fantastic. And the setting was oddly appropriate. In the game, you’re wandering around post-apocalyptic Massachusetts, walking from Concord to Cambridge to Boston, shooting stuff and building stuff. It was almost what I couldn’t be doing on my own feet.

I’m going to forever have “nuclear annihilation” and “back pain” associated in my head…

Cycling had been my “organizing principle”, and when I lost that, I lost direction.

As soon as I stopped riding, I missed being on the bike. That was obvious. I like so many things about cycling... the act of riding, the being outside, the exercise, the camaraderie of my fellow cyclists.

But as life normalized into a pattern that did not involve cycling, I realized I missed something deeper about it.

For me, cycling had been my “organizing principle” of life for the last five or so years...

  • I organized my week, my months, my year around bike rides and training. I would base decisions on when to get up in the morning and when to commute on how those worked for training rides. I had big rides as goals, and would work towards those with specific training plans that influenced my weekends and vacations.

  • I spent a lot of time keeping up with technology and trends in cycling. I read the bike tech and bike racing literature. I followed podcasts and web sites.

  • Cycling influenced when and how I ate, because when you’re thinking like an athlete, then food becomes fuel. That drove an interest in nutrition and metabolism.

  • A lot of my social life tended to come from cycling-related activities, because that’s where I put my time. And with those things gone, I began to lose touch with close friends.

  • I found I missed some of the basic and boring acts of cycling, like managing all that crap that you have to have on to ride when it’s cold and rainy, or recharging all my lights, or fixing flats and tuning my bikes, or coping with all the video I took on the last ride. Those are things that just feel like chores when you’re riding a lot, but I missed the routines.

That made me think about what it even means to have an “organizing principle” in your life, beyond the basics of food, shelter, family, and work. I’d guess that many people do have the same sort of concept… anyone who is working to achieve a major goal, or part of a bigger community, of living within a set of specific beliefs. Startups, ethnic groups, religions, athletic goals, major hobbyists... these all come to mind.

This made me question if I wanted to get back into cycling to the same level of intensity and focus when I recover from this. Honestly, it was sort of nice to get some of that time back (although all that time went into lying on the couch doing nothing)…

And, so far, the answer is a robust “yes”, because, in addition to the lifestyle, I miss the simple joy of riding my bike.

But I also look forward to having some overall guiding goals that set a rhythm and a context to everything I do. So, if it’s not cycling, it will be something else.