I have been sick for 14 months or 402 days or 578,880 minutes. It is a long journey. It is a hard journey. Yet, unlike too many other chronic diseases, there is an assumption that the disease will end one day and I will return to my pre-disease “normal.”
For me, it did not end in 6-12 months as originally prognosed. At this moment, an end before 24 months (or 1,051,200 minutes) seems possible. I am clearly stronger now than I have been. The amount of activity I’ve done in the last fours weeks at any other point in the last 14 months would have earned me a hard relapse, leaving me horizontal on my couch struggling to move my arm to reach my water.
Recovery doesn’t feel like normal switches turning on and off anymore, but more of a gradual strengthening. On a daily basis, I still experience tiredness, but not debilitating fatigue; dizziness, but not disabling vertigo; mental lapses; but not thick, impenetrable brain fog.
I continue to need to be extra mindful of the intensity of my anxiety, but there is much less to be anxious about. Through medical testing, we have ruled out cholecystitis and cholelithiasis (gallbladder problems), endometriosis, and malignant tissues in my esophagus, stomach, large intestine, and abdominal cavity. Per my echocardiogram, my heart functions better than average, although I continue to have high blood pressure and a high heart rate. I also do not have a stress fracture in my foot.
My stress dreams reflect a shift in my sources of anxiety. Up through my follow-up orthopedic appointment where I learned I did not have a stress fracture, my dreams typically featured stress around my physical condition. Since then, I continue to have at least two stress dreams every night but the themes have shifted primarily to relationships, except for the cameo by RFK, Jr.
It is strange to be in a place where I do not need to micro analyze every symptom of my body. It is strange to embrace the notion that I am ok even if not my normal.
I probably over-reacted to getting a nosebleed everyday between 6 and 7 PM three days in a row last week. I have always been susceptible to nosebleeds, but that was a weird pattern and none of the normal triggers applied. A year and a half ago, I would have laughed or shrugged that off. But now, after more than a year of Long COVID, I’m Googling nosebleeds and Long COVID, nosebleeds and hormones, and more. Based on the results, I found the most likely cause is pregnancy, except that’s a physical impossibility for me. Moving forward, I probably need to find a middle ground — somewhere between ignoring or dismissing symptoms and over analyzing them.
I am not out of the woods yet. One of my biggest concerns as I look to the future is getting Acute COVID again. Anecdotes from other Long COVID patients, including Giorgia Lupi1, suggest that additional bouts of COVID can exponentially worsen Long COVID symptoms.
I hope that for the next 525,600 minutes, in cooperation with persisting Long COVID symptoms, I live a life of genuine relationships while writing my stories and singing and dancing in my soul.
- Giorgia Lupi’s account of her 1,374 days of Long COVID is the most beautiful elucidation of the experience of Long COVID I’ve yet encountered. While her case is longer (presumably) and more severe than mine, much of her experience resonates. (New York Times, December 14, 2023) ↩︎
Feature image credit: Flag Date by Muneer A.Safiah from Noun Project (CC BY 3.0)
Carolyn Ristau 