I’ve said it so many times that it flows off my tongue with ease: I’m the guru of go and when I can’t go I get low. When you’re in pain every day it can be debilitating. The little things that so many people take for granted, like walking through a grocery store, doing dishes, cooking dinner or folding laundry, become overwhelming. It takes internal pep talks and what my mentor and life coach calls “heavy lifting” to complete the every day tasks.
For me, and I imagine for so many other people living with chronic pain, it’s not the pain itself that is the most debilitating. It’s the fatigue and wear down factor that accompanies the daily grind. The pain sucks, that just is what it is. It becomes a companion of sorts as it’s always there. Some days it’s louder than others, but it’s always present. The fatigue is the ass kicker. The fatigue is the game-changer.
Diagnosed with ankylosing spondylitis on the verge of my twentieth birthday, I vividly remember speaking to my family doc as a twenty-four year old senior at the University of Montana. When asked how I felt energy-wise, I candidly responded “I don’t’ remember what it’s like to feel good.” Twelve years later I can honestly say things haven’t changed. Are some days, weeks, months and years better than others? Of course. But re-charged is no longer in my vocabulary. Waking up refreshed and ready to take on the world simply isn’t my reality. So, like millions of others living in chronic pain, I grind on, doing my best to navigate the pain labyrinth as gracefully and courageously as I can.
I once read a piece that a friend and husband of a local super mom thriving with lupus shared with me, where the author constructed a powerful analogy about spoons. Yep, spoons. The premise of her story was simple. When you awaken each day you have a certain number of spoons representing your daily energy allotment. Those living with chronic pain are given fewer spoons and unlike their less pain-riddled counterparts, little things like taking a shower, getting dressed and walking up the stairs each represent an expenditure.
You can see where this gets tricky. Some days you have more spoons than others (this is true of everyone), so for those of us living with chronic pain, prioritization becomes essential. The really frustrating part of the equation is the unknown. Did I practice delicate self-care the day before or did I go 100 mph? Did I get a solid night’s sleep or did I wrestle with the comforter? What will the daily energy lottery grant today?
Like so many type A’s, I’m a driven, energetic and a high output kind of guy. So I go hard. When I’m producing I feel good about myself. When I’m floundering I drift into a funk.
When we are worn down, it’s easy to be touchy, moody, less resilient and prone to depression. We have to be more intentional in our interactions with our people. Because there’s nothing worse about the pain and exhaustion equation than not being your best for those you love most.
For me the darkest part of the wear down factor is going to blows with the demons of shame. Am I man enough? Am I going to be able take care of my family? Am I a good enough father and husband? Though I know the shame is unjustified, it requires mental stamina and fortitude to challenge these automatic thoughts, which are not traits we are overflowing with when worn out.
When you live with any chronic disease, all you want is to feel good again. But what do we do when our “normal” is a painful reminder that returning to form may not be in the cards? We have one choice: we adapt. There is no portion of the population that represents Darwin’s Origin of Species more beautifully than those living with chronic pain. “It is not the most intellectual of the species that survives; it is not the strongest that survives; but the species that survives is the one that is able best to adapt and adjust to the changing environment in which it finds itself.”
When pain is habitat that we occupy, we adapt and thrive or wither and fail. The choice is simple. We must always choose the path where we thrive.
While some friends and family may not get it when your spoon-counting keeps you from being your social, charismatic self, prioritization is essential if we are going to thrive in pain.
If you’re a parent, that is likely where you are going to put the majority of your spoons. Unable to do the many of the things I used to with my daughter (the activities that other dads not riddled with pain are able to), I’m bound and determined to use my spoons where they matter most, and some days that simply means being “good enough.”
Instead of powder days, I hold her hand and walk Kamiah to class each morning (two spoons, three years running). Instead of hiking trails, I park my truck every afternoon, walking by the line of parents waiting at the curb, and stand in the foyer, eager to drop to my knee and exchange a hug and “I love you,” (two spoons spent daily). Rain, snow or shine, for an entire winter on crutches following hip surgery (ten spoons) and since then with a little hitch in my stride, I walk beside my daughter and her classmates for her school’s Friday morning walk (four spoons spent weekly). Though the energy expenditure often makes me feel like climbing back into bed before my workday has begun, it is my hope that when she’s older, she’ll remember, “Dad was always there.”
Can we be a good partner and parent while living in pain? Can we thrive and live a life that matters in chronic discomfort? Without a doubt! We simply have to get creative, be willing to ask for help while remaining adaptable. I may flounder more often than I like to admit, but I’ve come to recognize an important key to functioning well when we are running on empty from living in pain: acceptance.
Fighting pain and fatigue is a losing battle. I used to see acceptance as giving up and therefore always chose to fight like hell. But pain is helping me to become a little wiser. I share this quote multiple times in my latest book, Be Audacious: “Acceptance is allowing reality to be as it is without requiring it to be different.” These are the words from the same mentor that provides the “heavy lifting” analogy. And it’s these words that have helped me to put “acceptance” into proper context.
Pain forces us to prioritize, to dig deep and to really become in touch with who we are and what we’re about. As my mom reminds me often, “Pain is the gift no one wants.” And sometimes, it’s the element that wears us down to the bone. It forces us to embrace ODAAT mode: one day at a time. Which isn’t necessarily a bad place from which to operate.
But how do we weather the metaphorical storm that comes with the wear down factor? We push ourselves. We practice gratitude. We remain optimistic. We take the dog for a walk. We give our children a hug. We write a loving note to our partner. And we trust that our sense of purpose and creative flow will return.
And then…we wake up and do it all over again.
~Michael W. Leach