I am one of the 10-20% or 24.2 million people who got Covid-19 and went on to develop Long Covid or Post Covid Syndrome. If you’ve met one person with Long Covid, you’ve only met one person with Long Covid. This disease presents differently in each person who has it, which is what makes it so difficult to diagnose. Long Covid affects the both the central and autonomic nervous system, the immune system, the mitochondria of cells, and can cause widespread inflammation and allergy issues. Basically, Long Covid enjoys messing with a person’s entire body and its mantra is “Go Big or Go Home.”

The daily symptoms I deal with are fatigue, brain fog, muscle weakness, inflammation, and allergy issues. Most mornings I wake up and I feel like I have the flu. I struggle with remembering things as well as visual spatial awareness. If you see a silver Kia Sportage parked completely crooked in a parking lot in Omaha, it’s me. As Taylor Swift sings, “It’s me. Hi. I’m the problem it’s me.” Actually, the problem is the neural inflammation and functional connectivity deficit in my brain sponsored by Post-Covid Syndrome.

What makes Long Covid or Post Covid Syndrome so hard to deal with is the unpredictability of the disease and the comorbid diseases it has caused for me.. Welcome POTS and Chronic Fatigue Syndrome to the club! I can walk a mile one day and be perfectly fine. I can walk a mile two days later under the same conditions and end up feeling like I am going to pass out and I spend most of the next day in bed. So far I have found no real rhyme or reason to the change in my symptoms. According to my doctors at Mayo, they can be affected by weather, barometric pressure, stress, what I eat, sleep, not drinking enough fluids, what I did or didn’t do 24-48 hours earlier, the fact I don’t have dog, the horrible drivers in Omaha, etc. Those last two have yet to be researched as triggers for Long Covid Symptoms, but speaking from personal experience they absolutely are.

The unpredictability of Long Covid has left me feeling like I am in a body that isn’t mine and that I have no control over. Things I never thought about before such as, my heart rate, my o2 stats, my blood pressure, etc are now things I have to think about multiple times a day and take into consideration when planning my day. I think about my body now far more than I ever have. I miss the ease of life before when I could just get up and go without a thought. I also miss looking in the mirror and recognizing the person and the body looking back at me.

I meet with a Health and Wellness Coach through Mayo Clinic’s Post Covid program and during our first session last week he said “The focus isn’t healing. The focus is wellness.” I felt like I had been smacked by a 2×4. He said it so casually and it so easily rolled off his tongue as if he was telling me the weather report for the day instead of handing me what felt like a life sentence. The focus isn’t healing because these are chronic issues I will deal with all my life. They will never be gone or “healed.” The focus is how to live a rich and full life while also living with these life altering symptoms. I’ll be honest.. I don’t have the answer to that question. I feel most days like I am just coping. I do know that I don’t want to spend the rest of my life just coping through each day. I want to live a life as full as the life I lived before even though it’s going to look and feel different.

That’s the goal, friends.. to make peace with, find acceptance for, and LIVE with these new illnesses that are going to unfortunately be my lifelong traveling companions in some form and that at least once a day have me thinking or sometimes screaming WTF?!?