Chronic pain has always permeated my life. My hips have grown inward. My shoulders and elbows crack and crunch. My knees are unhappy after decades of crawling. Muscles are tense and spasm, causing me to jerk when concentrating on a physical task. Arthritis, though present since my teen years, started infiltrating my hands after my 40th birthday. My back aches for no discernable reason.
Chronic fatigue is a newer partner. It found me after sepsis a decade ago and refuses to depart. A few hours out of my apartment means days of recovery—I sleep more, have increased pain, and battle brain fog. Visitors and sitting up in a chair without leaving home can also make things worse. Even editing or responding to emails can drain my battery.
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Each task I do requires planning. If I go out on Monday for three hours, I can't schedule anything else until around Thursday (Wednesday, if I'm extremely lucky). Working on a story for multiple hours a day for two or three days means a persistent headache and reduced ability to focus. And sometimes, I can do everything "right" and still wake up too stiff to move or with a low-grade fever I can't explain.
As writers, we're told not only to tell great stories or religiously edit our poems, but to network and get on various social media platforms multiple times a week. My YouTube channel suffers because I can't make the videos I want without sacrificing something else. Do I reschedule a doctor's appointment to write a new video script? Do I stop making holiday cards to create Instagram posts? If I have five useable "outdoor" hours a week and ten I can use on tasks mostly lying down, where do I put my energy?
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One of the things people don't talk about with chronic illness is the grief and anger that comes with it. I lost two of the people I love the most because I'm unable to babysit during first shift for months at a time. Projects, no matter how much I try, rarely get off the ground. A job would hospitalize me within a couple weeks. Medical appointments are usually a third (sometimes half or all) of my monthly outings.
There is so much I want to experience. So much I want to do. I've pivoted around obstacles to the point of dizziness, tempered my expectations to the point of near nothingness. And still, my heart breaks. The world goes by without me. People learn to drive, move to new cities, change careers, travel, and I stay put... collecting diagnoses like baseball cards. White walls creep closer. Screens are my windows to the world.
I try to hold onto the good: My husband, my two siblings, a safe place to live, beautiful music, a few (mostly online) friends, and stories that take me out of my bed and towards adventure. I tell myself that no one knows what can happen tomorrow (though the last decade of tomorrows hasn't boded well). I look out the window as farmland and small towns fly by on the way to another blood test and pretend I'm on a road trip. I write another blog post lying on my left side.
