Riding the Energy Roller Coaster: Life With Sarcoidosis, Heart Failure, and a Body That Changes Its Mind Daily

I’ve spent so many years living inside this unpredictable, high-maintenance body that I’ve basically become fluent in its moods. Not by choice, of course. If I could opt out of the daily energy guessing game, I’d happily trade it in for a system that comes with a warranty and a customer service number. But here we are, and over time I’ve learned the rhythms, the quirks, and the “please sit down before you pass out” moments that arrive like clockwork. Mornings are usually my best window. From the moment I wake up until around one in the afternoon, I’m magically functional. Then comes the one-to-four crash, a majestic free fall where my body suddenly acts like it’s been performing on Broadway for eleven straight weeks without intermission. Then around four I rally, almost like someone restarted my internal engine. That second wind usually carries me until nine at night, when everything slowly dims again. You could set your watch by it if my medications didn’t occasionally decide to remix the schedule like a DJ.

Speaking of meds, they’re half the reason this cycle exists. After twenty years on prednisone and the rest of my pharmaceutical entourage, my energy rises and falls in perfect harmony with whatever I’ve swallowed that day. The other half is sarcoidosis, heart failure, and the pulmonary hypertension that once tried to move in permanently but eventually reversed itself just to keep things interesting. My body is basically a long-running medical drama with too many plot twists and absolutely no commercial breaks.

So yesterday was one of those rare, beautiful unicorn days that trick me into believing I’m still the person who used to hop in the car with my wife, drive five hours to DC, walk around for the thrill of being alive, and then turn right back around. Yesterday my body woke up and chose chaos in the best possible way. I had energy from morning straight through to bedtime. Real energy, not the “if I stand too quickly the room will clap back” kind. My wife was out for the day, so I stayed home with a glorious to-do list and the wild optimism of a man who still believes he has the stamina of his younger self. And shockingly, I almost did. I tore through the list, crossed off nearly everything, and stopped only because I ran out of hours, not because my body quit on me. It felt so good I almost didn’t trust it. I miss that version of myself more than I admit out loud.

Then today arrived like it always does to remind me who’s really in charge. I woke up close to noon, head pounding, lungs tight, body feeling like someone unplugged me overnight to conserve power. My energy level was somewhere between “don’t even try it” and “absolutely not.” But errands had to be run and life doesn’t pause just because I’m malfunctioning again, so I dragged myself up and out with my wife. I pushed through it because that’s what people like us do. And even though I kept smiling and pretending everything was fine, she could see it. She always sees it. I hate that part — not the honesty, but the look in her eyes when she knows I’m hurting and trying to cover it with humor. We missed yesterday. We missed the magic. Those full-energy days don’t just feel good for me; they feel like a tiny gift for both of us.

Life has changed so much from the days when spontaneity was our love language. We used to fly out the door and roam wherever the day took us. Now I’m grateful if I can string together five solid hours of energy without falling over. But at the same time, I’m grateful to still be here at all. The doctors told me a long time ago that I wouldn’t make it this far, and yet here I am, stubbornly surviving, still cooking, still laughing, still holding on to the good days even when they show up less often than I want. This is the sarcoidosis-heart-failure-formerly-pulmonary-hypertension roller coaster, and while the ride is unpredictable, I’m still on it, still buckled in, still choosing to lift my hands in the air when the track suddenly drops.

If this feels familiar, you’re probably living your own version of this ride. And if you are, I hope you’ll share your story below or subscribe so we can keep navigating this unpredictable life together.