The Unpredictability of Daily Life With Chronic Pain
The other day was a stunningly beautiful sunny day with a light breeze. Exactly what you imagine when you think of the perfect day to be outside doing, well, anything. I, however, sat looking out the window from my physical therapist’s office. My physical therapist noticed me looking and said, “What a beautiful day. Doesn’t it make you want to go for a walk? You know, that is something you can do and it’s very good for your overall health.” I produced my best fake smile and mumbled the appropriate agreement, but it really ruffled my feathers and I couldn’t figure out why. People make these comments all. the. time. Why was this one nagging at me? Turns out, this was a good question.
Who wouldn’t want to take a walk?
Healthy people may not understand that chronic illness and pain is not linear. This means that the consequences don’t always match the actions. In fact, they usually don’t. Of course I would love to go for a walk on a beautiful day. For a healthy person who starts a walking regimen, they start with a short distance for a week or two and, then over time they can walk further and further. Their progress is basically linear, predictable.
My body, however, is completely unpredictable. Maybe today I could go for a walk down the block. Maybe I could do it tomorrow and the next day, too, but the following day I might not be able to get out of bed at all. Did I do too much? Should I have only walked every other day? Would it have mattered? Suppose this flare lasts for three days and on the fourth I actually feel really good — should I brave a walk? Or am I asking for trouble? The human mind thrashes against this lack of ability to even vaguely predict the outcomes of our actions. Given a total lack of knowledge about the consequences, how do you make these decisions? Think on that for a second. This is how someone in chronic pain lives.
The greatest emotion that this inability to predict our own outcomes produces is fear. No one ever talks about the fear. If there was some ceremony where we were all sworn to secrecy on this matter, I clearly slept through it. When I’m faced with a beautiful day and I’m contemplating a walk, my head is calculating its very own spreadsheet of costs versus benefits. Will enjoying 15 minutes of walking in the sun mean I’m down for the next day? Three days? Five days? A week? How high is my pain now? Will this help or hinder? How high is my stress? Will this help or hinder? How is my mood? How is my fatigue? Will this help or hinder? What do I need to do over the next few days? Will I be able to do it? Where am I in medication doses? Will they last the walk? Will I need more after? Finally is it all worth it? Now if you look back at all those questions, there isn’t a single one I can answer definitively. At best I can guess and more often than not, I’m very, very wrong. “Don’t you want to go for a walk on a nice sunny day?” seems like a very simple question, but to someone suffering from chronic illness and pain, we left simple behind a long time ago.
While I may have made it clear that simple things can actually be quite complicated for those who suffer chronic illness and pain, I think we still have a bad rep for being flaky, cranky, unpredictable, angry, sad and many other things “with no good reason.” I don’t deny that my moods can be all over the board. It’s the last bit that is, well, absolutely wrong.
To start, many of us do not sleep regular sleep cycles (or at all). Our bodies may already be confused about whether it is day or night, and our minds are not attuned to time of day or month or season. Pain can block other signals and cause brain fog. More importantly, many of us spend our lives imbalanced. We have no idea if what we choose to do now will mean that we can’t move tomorrow or that we will just get to enjoy ourselves. We are that prisoner not knowing if we go through with what we’re being asked, if we’ll get sunshine and rainbows or the rack (the torture device, not a clearance sale at Nordstrom). What kind of choices would you make if you knew going to see that movie may cost you a broken arm? Going to that party may mean a broken leg? That weekend getaway would probably mean a few slipped discs? Or maybe you will get away with it…this time.
Is it any wonder our moods can vary from one minute to the next? We are scared, exhausted, depressed, anxious, lost, disheartened, and so much more. We have no control. We know what we want and it is in sight, but completely out of reach. We are desperate to get better and many of us would gladly run marathons, backward, barefoot, naked, covered in whipped cream, carrying a monkey who was playing an organ grinder if that were the path to health, but it isn’t. For some of us, moving at all often means moving backwards.
It’s hard to fight something you can’t see or even predict. It’s even harder when your mind is struggling under all the weight. And nearly impossible when everyone around you assumes your illness can’t possibly be that bad. Well, they are right. It’s much worse.
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Kristen is an adventure, living-life-to-the-fullest, and doing-stupid-things enthusiast, whose life took a serious left turn into chronic invisible illness. Her saga of adventures in the world and in medicine never fail to keep life interesting.kristen-spinola