It’s been 212 days since I received the call from the health department notifying me of my Covid-19 exposure and instructing my family and me to quarantine. That day, my life changed forever. 212 days of battling the aftermath of this virus—impacting my health, finances, family, and everyday life. I’m currently writing this from a hospital bed, marking day 18 of yet another hospital stay. I had previously spent 14 days in the hospital in September alone. After all this time, I find myself in a worse condition than when it all began.
I have finally been diagnosed with Long Covid Syndrome, a label I fought hard to have included in my medical records. Being a “Covid Long Hauler” means not only enduring months of debilitating illness but also struggling to receive adequate medical care. It’s disheartening to advocate for oneself, especially when doctors frequently dismiss those who have been ill for such an extended period.
Given the uncertainty surrounding this virus, finding knowledgeable medical professionals is challenging. Like many others in my situation, I travel two hours each way to a teaching hospital, hoping to find answers to my ongoing health issues. While we understand that there is no treatment or cure, we still seek better symptom management and to have our voices heard.
The Daily Struggles
Living as a Covid Long Hauler has been a nightmare. For 212 days, I have endured constant nausea, vomiting, and diarrhea. The shortness of breath and chest discomfort typical of Covid-19 come and go. Recent CT scans show that my lungs still exhibit signs of Covid damage. I deal with fatigue, cognitive fog, nerve pain, unpredictable fevers, and a loss of taste. Recently, I have been grappling with severe pain radiating from my lower back down to my toes, often bringing me to tears. My new reality includes a nasojejunal (NJ) feeding tube due to my inability to retain food and medications.
Along with my Long Covid diagnosis, I’ve encountered C. diff (likely contracted in the hospital) and Post-Covid Gastroparesis, each bringing its own set of distressing symptoms. The embarrassment of having accidents and feeling helpless is something I face daily.
The Emotional Toll
One aspect that remains unspoken about Long Covid and similar chronic illnesses is the overwhelming guilt. I have been unable to fulfill my role as a mother for 212 days. Since the onset of my illness, I haven’t worked, and my partner bears the weight of caring for our family alone. On good days, I can dress myself and manage to keep liquids down. On bad days, I’m left in tears, overwhelmed by pain and despair.
The emotional toll on my family is immense. I have spent more time in a hospital bed than with my children lately, which breaks my heart. They are young and struggling with their feelings, and I feel helpless not being there to comfort them. I often reflect on how this illness has affected us financially, as both my partner and I have been unable to work since March. The guilt keeps me awake at night, alongside the insomnia, nausea, and pain.
Looking Ahead
After 212 days, there is still no end in sight. Despite the hospital’s efforts to treat me, I find myself cycling in and out of care without any real solutions. I yearn for the ability to play with my kids, to feel well enough to bake with my daughter. While I am still alive, I feel far from truly living. I am ready for recovery at any moment now.
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Summary:
The narrative highlights the struggles of living with Long Covid for 212 days, detailing the physical, emotional, and financial toll it has taken on the author’s life and family. It emphasizes the challenges of obtaining proper medical care, the relentless symptoms, and the profound guilt associated with being unable to fulfill familial roles.