It’s been a staggering 212 days since I received the call from the health department notifying me of my Covid-19 exposure, advising my family and me to quarantine. It’s been 212 days since my doctor instructed me to self-isolate from my loved ones for two weeks. For 212 days, Covid-19 has turned my life upside down, affecting my health, finances, family, and overall existence. Now, on day 18 of my latest hospital stay, I find myself writing this from a hospital bed, reflecting on the long journey that has left me feeling worse than I did at the beginning.
I have been officially diagnosed with Long Covid Syndrome, a label I fought tirelessly to have included in my medical records. It’s not just about feeling extremely unwell for an extended period; as a “Covid Long Hauler,” you must also battle to receive even the most basic level of care. Convincing healthcare professionals that someone can remain ill for more than seven months is a challenge. Many doctors tend to dismiss what they cannot easily explain or understand.
Given the limited knowledge surrounding this virus, there are few medical experts available for guidance. For individuals like me, finding answers often means traveling two hours to a specialized hospital, desperately seeking explanations for this prolonged illness. Many of us are willing to travel great distances just to be acknowledged. We understand that there is no cure or straightforward treatment, but we deserve better management of our symptoms and to be heard.
The Daily Struggles
Living as a Covid Long Hauler has been intensely challenging. I have dealt with unexplained daily nausea, vomiting, and diarrhea for 212 days. The classic Covid-19 symptoms of shortness of breath and chest pain come and go. A recent CT scan showed my lungs still exhibit signs of damage 212 days after my diagnosis. I experience overwhelming fatigue, brain fog, neuropathies, and near-daily fevers. My symptom list continues to grow, now compounded by excruciating pain radiating from my lower back to my toes. The pain is often so severe that it brings me to tears. I now rely on a nasojejunal feeding tube because I struggle to keep medications and solid food down.
In addition to Long Covid, I have also been diagnosed with C. diff (likely acquired in the hospital) and Post-Covid Gastroparesis, both of which come with their own dreadful symptoms. When I’m not throwing up, I face embarrassing accidents that leave me feeling humiliated. I often find myself in tears due to the situation.
The Emotional Toll
One aspect that’s rarely discussed alongside Long Covid Syndrome is the overwhelming guilt that accompanies it. For 212 days, I have been unable to fulfill my role as a mother. I haven’t worked since being advised to isolate back in March. Simple tasks like cooking dinner for my family have become impossible due to nausea, pain, or debilitating brain fog. On a “good” day, I can manage to dress myself, recall my birthday, and keep fluids down. On a “bad” day, I am found rocking back and forth in pain, tears streaming down my face, with a bucket close by for inevitable emergencies and a resting heart rate soaring above 150 bpm. My partner has taken on all responsibilities alone for 212 days with no end in sight.
I’ve spent more time in a hospital bed than with my children lately, and it breaks my heart. I know they are struggling to cope with my absence, and I feel guilty for not being there to comfort them. I can’t remember what it feels like to be healthy. Although I haven’t had a single nausea-free day, there are brief moments where I experience relief after taking my medications, and I cherish those fleeting windows. The financial burden of this illness weighs heavily on me; both my partner and I have been unable to work since March. The guilt of how this virus has affected our finances keeps me awake at night, rivaling the insomnia and pain.
Looking Ahead
After 212 days, there is still no end in sight. Following 18 days in the hospital, the doctors still haven’t found a solution. They are trying various treatments, but many unknowns remain. It feels like each time I get well enough to be discharged, I am soon readmitted. I can’t continue living like this; it’s too exhausting and utterly unfair. All I want is to be healthy enough to run around with my kids, to have enough energy and no nausea to bake with my daughter.
I’m not dead, but I certainly don’t feel like I’m living, and I despise this existence. I long for the day when I can finally feel recovered.
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Summary:
The article shares the harrowing experience of a person living with Long Covid for 212 days, detailing the physical and emotional struggles faced during this prolonged illness. It highlights the challenges of obtaining proper medical care, the impact on family life, and the pervasive guilt associated with being unable to fulfill parental responsibilities. The author expresses a desperate longing for recovery and highlights the need for better symptom management and understanding from the medical community.
Keyphrase: Long Covid experiences
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