Developing Your Fatigue Response Plan, Part 2: The Basics
Spondyloarthritis has lots of things going for it as far as treachery goes. It's hard to pronounce. People don't know what it is or mistakenly think it's rare. It's seronegative. That's fancy medical talk for showing good or unremarkable lab results, no matter how sick we are. This is inconvenient and isolating because culturally, we're wired to perceive health status, illness, and disability through lab confirmation or some other "objective" form of confirmation.
Keep in mind, labs and their findings are the result of painstaking scientific research conducted over decades. It's easy to forget, but there was a time when every test we rely on didn't exist, even though the things they look for did. Testing targets could be found tonight, which would be exciting, but won't help us right now. Until then, seronegativity will shape the diagnosis and treatment process.
Fatigue is stubborn
Fatigue is often the most prominent stubborn spondyloarthritis symptom. So far, there is no reliable test to capture the presence of fatigue or reflect its impact on the patient. That's why "Shawn" can show perfectly clear labs despite feeling like something the cat dragged behind her during a mountaintop foot race. Yikes! Please remember that fatigue is not limited to spondyloarthritis, and it's possible to have more than one illness at once. Don't let seronegativity keep you from seeking medical care for fatigue.
Getting started is the most important part
I can't promise a magical fatigue fix, but acknowledging the need to attend to fatigue opens the door to powerful adaptive strategies. Your plan doesn't need to be perfect or elaborate, but it should suit your most basic needs. In time, your specific needs and solutions will become more apparent. The most important thing is to get started and keep building.
Don't lose the plot
Doing some things the same way most of the time may help buffer some of the profoundly disorienting fatigue mojo, like brain fog, total overwhelm, and feeling frozen in place. Dedicate specific time windows for things you've got to do, like laundry, trash and recycling, making grocery lists, shopping, and reviewing your calendar and commitments.
Be able to find important things
Use a dedicated charging station for your phone and other electronics so you'll always know where they are.
Put your keys, wallet, and any essential credentials in the same spot as soon as you get home. A brightly colored basket, tray, or bowl set on a small table can make a helpful target to home in on.
Make sure to return change, cards, or ID to the same slots in your bag or wallet every time you take them out. I use a business size envelope for all my receipts when traveling. Consider marking cards with brightly colored pull tabs for easy reference.
During the storm: What absolutely has to be done? When does it need to be done by? Could a few things wait awhile? For how long?
After the storm
Take a look at where your time and energy is going. Are you doing too many things? Are there some hidden leaks in your energy stream? Is it time to talk to revise your care plan?
Do you live with any other conditions in addition to AS? (choose all that apply)