This is Long Covid-19.
It has been 212 days since the health department called informing me of my exposure to Covid-19 and advising my family and me to quarantine. 212 days since my doctor advised that I self-isolate from my family for two weeks. Two hundred and twelve days is how long Covid-19 has been wreaking havoc on my body, my finances, my family, my life. 212 days post Covid diagnosis and I write this from a hospital bed. I’m on day 18 of this most recent hospital stay. In September, I spent 14 days in a hospital bed. My frequent flyer card is almost full. 212 days and I am worse off now than I was then.
I have officially been diagnosed with Long Covid Syndrome. A diagnosis I fought for months to get in my official medical record. See, it’s not enough to be sick has hell for weeks on end; as a “Covid Long Hauler,” you also have to fight for even the bare minimum of care. You have to fight for doctors to take you seriously, because who can believe someone has been sick for over 7 months? Doctors are quick to brush off what they can’t explain or understand.
Since so little is known about this coronavirus, there are no medical experts to turn to for guidance. If you’re like me, you have to travel two hours, one way to a teaching hospital in hopes of getting answers to why you’ve been sick for 212 days. Many of us “Long-Haulers” are willing to travel near and very far to be heard. We know there is no treatment or cure. But we are still suffering and deserve better symptom management and to be heard, at the very least.
My life as a Covid Long-Hauler has been nothing short of hell. I’ve had unexplained daily nausea, vomiting and diarrhea for 212 days. The shortness of breath and chest pain that is classic Covid-19, comes and goes. A CT scan of my lungs the other day revealed that they still look like Covid lungs, 212 days post diagnosis. The fatigue, the brain fog, the neuropathies, the unexplained near daily fevers, no sense of taste… My symptom list goes on and on. Most recently, I’ve had to live with excruciating pain radiating from my lower back down into my toes. Pain so bad it brings me to tears more often than not. My new normal is a lovely NJ (nasojejunal) feeding tube since I am still unable to keep meds and solids down consistently.
Along with a Long Covid diagnosis, I’ve also been diagnosed with C. diff (likely hospital acquired) and Post-Covid Gastroparesis. Both come with their own set of awful, terrible, no good symptoms. If I’m not throwing up, I’m having accidents all over myself. I cry from embarrassment often. My poor nurses.
The thing no one is talking about alongside Long Covid Syndrome (or any prolonged illness, really) is the heavy guilt that comes with it. I’ve been unable to be a mother for 212 days. I haven’t worked since I was first advised to isolate, back in March. I can’t cooker dinner for my family because I’m either too nauseous, in too much pain, or my brain is too foggy to remember how. Or a combo of all three. On a good day, I can dress myself, remember my date of birth, and keep liquids down. On a bad day? You’ll find me rocking back and forth, in tears from the pain, with a bucket nearby for the inevitable and a resting heart rate in the 150s+. My partner has had to do everything solo for 212 days with no end in sight.
I’ve seen a hospital bed more than I’ve seen my kids the past couple of months and that hurts. I know it’s hurting them. They are small kids trying to navigate big feelings right now and I’m not there to comfort them. I hate myself for it. I don’t remember what it’s like to be healthy. I don’t have any nausea free days, but I do get nausea free windows once all my meds are onboard and I’m so grateful for those small windows. I have tremendous guilt over how much this virus has hurt us financially. My partner and I have both been unable to work since March, as I’ve been too sick and require too much care still for him to return to work. The guilt keeps me up at night when the Covid insomnia/nausea/pain doesn’t.
212 days and there is still no finish line. 18 days in the hospital and they still can’t fix me. They are eager to, and they’re throwing everything but the kitchen sink at me, but there are still many unknowns. It seems the hospital gets me well enough for discharge just to readmit me shortly after. I can’t keep living like this. It’s too hard. It’s so unfair. I just want to be well enough to run around with my kids. I want to have enough energy and no nausea so that I can bake with my daughter.
I’m not dead but I’m definitely not living, and I hate it. I’m ready to feel recovered any time now.