I’m trying not to feel sorry for myself, but the truth is that I’m declining again. Most days I can’t walk, and I’m stuck in bed.

After a year of tests and ruling out every other possibility, my current diagnosis is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). There’s no known cause, no treatment, and no cure. It’s a complex neurological and immunological disorder marked by extreme, debilitating exhaustion, not “tiredness,” but the kind of exhaustion that drops you to the floor in tears. The kind where I can’t hold a coffee cup, feed myself, type on a keyboard, or even hold a phone. Even breathing feels like work.

Any physical or mental activity makes everything worse. Cognitive dysfunction means I lose words I know. Sleep abnormalities mean that no matter how exhausted I am, I can barely sleep, even with medications meant to help. And then there’s the pain: electrical shock sensations, stabbing pains, muscle spasms, numbness, chills. Rest doesn’t fix any of it. Nothing does.

Treatment is focused on managing symptoms and trying to improve quality of life, but so far nothing has really helped me. I get tiny improvements, then another decline. I know I should be grateful for what God has given me… but this is hard. It sucks. Writing has been my one outlet this past year. I don’t make money from my books, but I keep trying because it feels like the only thing I can still do, and even that is getting harder.

I recently got a smartwatch to monitor my health, and it confirmed what my body already knew: I’m not getting restorative sleep. I start each day at about 50% “energy battery,” and my body stays in high-stress mode even while I’m sleeping. Walking to the bathroom registers as intense exertion, like I’m sprinting on a treadmill. By bedtime, my energy drops to around 20%, and I only recover 11% to 50% overnight. As of late I have been going to single digits and by orning, day after day, I’m around 20. I fear Christmas will be difficult even without “doing” anything.

I’m learning to use even less energy each day, which means staying in bed, doing breathing exercises, and eventually learning meditation. I’m too weak right now even for gentle stretching. Still, I’m thankful that God allowed me to get diagnosed early. Many people suffer for ten years before anyone believes them, and the consequences of that delay can be severe. I still have a chance. I’m grateful for that.

But I’m also my own worst enemy. When my watch finally showed I’d reached 80% energy, I thought, “Maybe I can go into Ollie’s for a few minutes.” I walked around for about fifteen minutes, and that small outing sent me into a downward spiral. Now I’m back in bed again and not recovering my energy.

I can’t afford a motorized wheelchair, and with the way state insurance works, I have to wait another six months to see their doctors before they’ll even consider approving one. So for now, I’m housebound and bedbound. And yes, it’s hard not to feel bad for myself.

This disease is rare, but cases have increased dramatically since COVID, which many researchers now believe can trigger ME/CFS. Long COVID, for many people, is ME.

Myalgic Encephalomyelitis (ME) often called Chronic Fatigue Syndrome (CFS) is a severe, long-term illness that causes extreme fatigue, post-exertional malaise (symptoms worsening after activity), sleep problems, cognitive issues (“brain fog”), pain, and dizziness when upright. Its cause is unknown, though it’s linked to immune changes and often follows infections. There’s no cure, and treatment focuses on pacing and symptom management. It affects every system in the body.

And right now, it’s affecting every part of my life.

About MECFS