Fatigue is the worst part of how I experience spondyloarthritis. Pain, stiffness, reduced range of motion, dry burning eyes, and issues using my hands and feet are serious because they possess the power to substantially curtail the choices I have about how I live my life. They all force me to respond by doing or not doing, finding adaptive technologies and treatments, and taking them into account in ways that healthy, able-bodied people don’t have to, but fatigue is my personal blue screen of doom.
Fatigue leaves me anxious and uncertain
This diabolical monster manages to ruin things in the moment and keep me worried about what might happen next by making me anxious to make plans or take on some serious commitments. It deserves a better name, something suitable to communicate its abysmal character. Fatigue is too easily confused with tired or worn out, two things that most people experience and recover from with adequate rest, nutrition, and hydration. I’m happy for them, but that’s nothing to do with what our people are dealing with.
Sometimes, I like to imagine each of these symptoms as traders at the old Chicago Board of Trade, before it went electronic. You’ve probably seen a movie or news report with all those people wearing funny looking jackets, yelling, and making hand signs?
The symptom trading floor
Our symptoms would gather around the trading pit in their own brightly colored jackets with patches or printing to stand out on the pit floor. Their job is bidding on the best chance to disrupt patients’ lives. Pain wears a red blazer in a flames print. Stiffness and reduced range of motion is in blue, printed with Tin Mans and heating pads. Dry eyes wears an intolerable shade of yellow, printed with sunglasses, bottles of eye drops, nighttime ointment, and a cooling eye mask. Hand and foot agony wears grey, printed with adaptive pens and gloves, expensive shoes, and shock-absorbing insoles.
Fatigue comes sauntering in late, wearing a white jacket printed with huge zeros and question marks and says, “nice try, everybody. You’ve all done your best to be terrible with some remarkable success, but this is a job for Fatigue Unlimited, LLC. I have enough capital to outbid all of you and then some, and still keep this platinum watch. I can power down ALL of the patients.” And then the traders throw all their little slips of paper in the air, leaving them for somebody else to clean up.
What if Fatigue and Shawn went to therapy with a social worker named Barb?
Barb: Fatigue, the file says that you and Shawn have been together for 19 years. How did you meet?
Fatigue: Shawn was minding her own business when I decided to be a part of her life.
Barb: Shawn, how does that make you feel?
Shawn: Barb, it’s not great. He’s always around, doesn’t pay rent or take out the recycling.
Barb: What do you want to happen?
Shawn: I never want to see him again.
Fatigue: I want to be with her forever!
What should we call fatigue?