By Deborah Blackwell

It’s 2:30 a.m. I wake up soaked in sweat, hot but shivering. Nausea rolls through my belly like a wave. My heart pounds. I sit up, swing my legs off the bed, and try to put my feet on the floor. My head throbs like it’s about to implode. My eyesight is blurry, but I stand up, determined to make it to the bathroom. The cat lifts her head and squeaks out a meow, then hops off the bed and follows me. She knows I may or may not make it without fainting. I try not to wake up Sir Husband, he has to leave for work in three and a half hours. “Shhhhh,” I whisper.

My gait is unsteady. I hold my arms out into the air. For what? There’s nothing there to catch me. When I finally get to the toilet, I exhale. I made it. I close my eyes hoping I can get back to bed easily. The cat swirls around my legs, then waits until I stand up before leading the way. When I crawl back into bed, I pull the covers up as high as they will go around my body, leaving just enough space to breathe. I’m safe. Sort of.

Welcome to my nights. Why? Because three years ago I ate some salmonella-tainted peaches that derailed my entire life. The bacteria caused Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia — a serious condition that disrupts the autonomic nervous system. That’s the system that manages all our involuntary functions: breathing, heart rate, blood pressure, body temperature, blood flow, digestion, circulation, thinking, doing seeing. Being.

Unless you’ve lived it, it’s hard to understand.

My body calls the shots. Night and day, no warning, no reprieve, POTS mimics heart attack, stroke, and seizures. It brings on random episodes of chest pain, heart palpitations, dizziness, head pressure, extreme drops in blood pressure, blurry or double vision, nausea, numbness and tingling, trembling, sweating, chills, fatigue, weakness, shooting pain, sensations of internal pressure, noise and light sensitivity, tinnitus, brain fog, or any other scary, uncomfortable symptoms it can create.

It makes me think I’m about to die.

Thankfully, I’m not. Still, POTS isn’t easy to fix and the road to recovery is long. Ambulance ride after ambulance ride, I landed in the hospital with a laundry list of symptoms that tricked emergency room personnel. Test after test, no conclusion. How could I be having these symptoms when all my organs are fine? Countless times, I looked up from the gurney and felt shamed when I heard, “Nothing is wrong with you, you’re just having panic attacks. You have anxiety. Learn to manage your stress.” In other words, quit overreacting. Live your life differently and you will be fine.

Wrong. Panic isn’t the cause, it’s the effect.

Eventually “long Covid” brought things to light. An infection or disease preceding these extreme symptoms is a tell-tale sign of dysautonomia: a physical disorder the experts know little about. Now, it’s in the queue for research, and I know I’m not alone.

At least 80 percent of people with POTS don’t have a diagnosis or are misdiagnosed. It can take years to find the underlying cause. Recovery is a “maybe,” and symptom management is a game. I saw every doctor for every body part. Diagnostic procedures, trial-by-fire treatments — from Western medications to integrative medicine to traditional Chinese medicine to vascular physical therapy — and nothing. No relief.

The first year, I couldn’t even stand up. The hospital was my salvation, my bed, my sanctuary. But determined to heal, I persevered. Tried. Failed. Tried. Failed. Hoped. Lost hope. Like a trampled flower, my body and spirit were drained. Recovery felt way out of reach. Doctors are only as good as their knowledge, but more importantly, as good as a body will allow them to be. My body has a mind of its own, and it demanded I surrender.

I had to stop fighting the reality of my situation. I had to face this awful hard STOP to learn how to rest. I had to put devices, work, and life aside to listen to my body. I had to learn how to quiet my mind; reign in my high energy; relax habitual tension; bring stress to a simmer; release old trauma; sit with isolation; relinquish control; ignore the to-do list; soothe fear; worry less; breathe more; pace myself; find steadiness; learn balance; foster acceptance, and activate gratitude. I had to slow my entire self down, let go of virtually everything, and hope my autonomic nervous system followed.

Everything about the way I think, do, see, and be had to change. Not an easy task.

Most of us don’t understand another person’s predicament. We try, but we really can’t know how any life-changing experience feels for someone else. I can’t tell you how many times I’ve heard, “Wait, you’re still sick?” It’s defeating, deflating, and depressing. A “Yep,” is all I’ve got. While I watch everyone around me live their status quo, I’m still at the mercy of this potentially chronic condition and I’m tired of being in my shoes.

But I’ve come a long way. Now with some effort, optimism, and a serene curiosity, I can function. I’m getting better. I don’t need a reward, just some understanding until I can say, “Wheee! I’m up! I’m regulated! I’m moving! I’m normal! I’m me.” Because even though this is my life, it feels like life is passing me by.

I have to allow my body to wake when its ready and get out of bed when it wants to. No morning alarm, no pushing myself to “go.” Sir Husband is out the door early for work, and texts me when he thinks I’ve opened my eyes. Today was no different.

“Hi baby. You up?”

“OK, I’m getting up now. Wow, it’s late,” I reply.

“LOL, what are you late for?” he asked.

Life.

“Smile, breathe and go slowly. 
You have an appointment with life."

Thich Nhat Hanh