I am not writing about this to be dramatic or to make excuses or have anyone feel sorry for me. It’s very weird having a long term illness. I’ve never done this before. Before this experience, I was maybe like you, thinking it’s all in her head. She just needs to rest, or eat better, or “get over it.”
My husband, when we were first dating had Chronic Fatigue Syndrome and I thought many times maybe he was just depressed. Because he looked fine! He didn’t wheeze or cough or throw up or double over in pain or walk with a limp. He looked completely normal, as do I. He’s now a beacon of hope for me because he recovered more than a decade ago. It happened very slowly and subtly, and hopefully that will also be my path.
I need to stay humble and patient.
For the past three weeks, I’d been feeling steadily, subtly better. Still able to move (yoga, Pilates, walking, light resistance training). The key, it seems, is to keep my heart rate low. Last Sunday, I taught barre and felt very strong. Monday, I taught a private class for two awesome pregnant people, and again felt very strong. Tuesday, I decided it was time to try a walk/jog. My plan was to jog 20%, walk 80% and keep track of my heart rate on my watch. The first time I started to jog, I felt AMAZING. My heart rate was steady, I could breathe comfortably, the weather was perfect. I jogged almost all of the 3+ miles, euphoric. I started to fantasize about teaching my first Spin class back on Thanksgiving, what my playlist would be, how I would most likely cry in front of students from the overwhelming gratitude I have for this strong body of mine.
I came home from the jog still feeling fantastic. About an hour after, the head rushes started. That evening, I got a scratchy throat. Wednesday morning I woke up fully symptomatic (racing heart, short of breath, burning lungs, nausea and general fatigue/malaise). It’s Saturday and I’m still completely sick.
What did I learn? When we have chronic illness (Long Covid, PoTS, Chronic Fatigue, Hashimoto’s, etc.), it affects each individual differently. For me, right now, my body can endure stress, but it cannot recover. If I put stress on my body, it will do what I ask, but then all my immunity and energy stores are depleted I seem unable to replenish.
When I am forced to rest, I am left with my thoughts, which is kind of a Hellscape:
“You’re going to turn into a disgusting monster. You can barely stand yourself now, how will you even survive if you can’t do the very few things you’re actually good at. You’re worthless. You’d better figure out what to do. How to pivot. Your husband is going to resent you. You’re just making this up, right? Cuz you’re so lazy and not good at anything. This is what you wanted, right? Make everyone take care of you and not contribute. Loser.”
Good times. She’s a fun girl, that inner voice. My pivot is to not run from her. Acknowledge her. We’re here for a reason, you and I. So let’s dance. Much of my ego is wrapped around doing good, being good, being helpful, helping, giving, running around, DOING. Doing to avoid that voice. I’m ready to see what’s on the other side.