What Life with Long COVID Is Really Like

Lifestyle

Understanding the Reality of Long COVID

When Mia Johnson fell ill in March 2020, the term “Long COVID” was still unknown to most of us. At that time, our understanding of the virus that would eventually claim millions of lives was minimal. We thought it was primarily a respiratory illness. As it turns out, we were mistaken. We assumed it was mainly spread through surfaces. Wrong again. Most alarmingly, we believed there were only two outcomes to a COVID infection—survival or death. Yet again, we were misinformed.

We were unaware of the daunting reality that is Long COVID, nor did we comprehend the scale of the health crisis it would soon unleash on countless individuals.

Mia’s COVID Journey Begins

In March 2020, Mia was aware of COVID’s existence. Having heard about the first U.S. cases, she was anxious about the rapid spread of the virus. However, when her partner, Sara, fell ill, neither of them suspected it was COVID.

“We were somewhat in denial,” Mia shared in a phone interview. It’s understandable; few grasped the severity of COVID’s arrival.

Mia fell ill about a week after Sara. Her health began to decline as Sara was hospitalized, and the stress of not being able to visit her undoubtedly worsened Mia’s condition. Unlike many COVID patients, Mia did not experience the typical symptoms such as cough or fever. Instead, her issues were mainly gastrointestinal. She endured extreme fatigue, numbness in her limbs, a sensation of burning throughout her body (despite lacking a fever), and an inability to eat for nearly two weeks due to her body’s rejection of food.

By the time Sara returned from the hospital, Mia could barely muster the strength to get out of bed.

She sought help at the emergency room where doctors were convinced she had COVID, yet her tests repeatedly came back negative—likely due to the timing of her symptoms and the questionable accuracy of testing protocols at that time.

A Challenging Mental Landscape

By late May, Mia remained far from recovery. She was largely bedridden, plagued by high blood pressure, heart palpitations, excessive sweating, dizziness, insomnia, and a feeling like her chest was seizing up, as if her body had forgotten how to breathe. At one point, Mia lost the use of both hands for several days.

Food became her greatest obstacle. Each meal would trigger a complete shutdown of her body, leaving her unable to move or breathe easily until the food began to digest, as if her body could only manage one function at a time.

Mia recalls her most frightening experience involved taking just three sips of a nutritional shake. After ingesting so little, her body shut down completely. “I didn’t know if I was going to die, and I just kept waiting for the other shoe to drop,” she expressed.

Throughout this ordeal, emergency room doctors told her there was nothing they could do, and she was sent home.

The Long COVID Recovery Rollercoaster

By July and August 2020, Mia was on the mend. She could go outside, take walks, and engage in light physical therapy. While she wasn’t back to her usual self, things seemed to be improving. However, a busy day quickly led to a significant relapse that lasted until October.

By then, Long COVID was gaining more attention, at least on social media. Through a support group, Mia connected with others experiencing similar symptoms. “It was comforting to converse with individuals who understood what I was going through,” Mia noted, especially since her doctors often made her feel as though her symptoms were imagined.

After a somewhat manageable holiday season, everything collapsed in April 2021. Mia consulted a new doctor who adjusted her medications and supplements, but by the month’s end, she found herself unable to walk or perform even the simplest tasks. One night, she couldn’t lift her arm to signal Sara for help.

When twitching episodes began, Mia was finally admitted to the hospital. What followed was a series of tumultuous recoveries and relapses, including a severe setback in July that left her with temporary paralysis. During some periods, she could only communicate using code—“w” for water, “f” for food.

Dismissal by Medical Professionals

At nearly every turn, Mia faced dismissal, neglect, or mistreatment from the medical community. She recalls a psychiatrist who dismissed her extreme fatigue as being “all in her head,” and a physical therapist who pushed her beyond her limits without understanding her condition.

After that session, Mia experienced non-epileptic seizures, the first of which lasted an agonizing seven hours.

Fortunately, brighter moments emerged. A new doctor introduced Mia to compassionate care, marking the beginning of her path to recovery.

Living with Long COVID Today

In a recent email drafted with Sara’s assistance, Mia detailed her diagnosis: “After contracting COVID, I developed Long COVID, Chronic Fatigue Syndrome (CFS), histamine intolerance, Mast Cell Activation Syndrome, dysautonomia, Functional Neurological Disorder, GERD, Psychogenic Non-Epileptic Seizures (PNES), and elevated thyroid antibodies.”

Mia remains largely homebound—she hasn’t taken a walk since October 2020. She can sit up and is working toward standing. Her recovery has been facilitated by extreme rest, heart rate monitoring, dietary adjustments, and daily meditation.

With guidance from Lila Rivers, a fellow CFS sufferer, Mia learned the importance of pacing her energy, which “has helped more than anything,” she noted.

Unwavering Support

Throughout her journey, Mia has been supported by friends and family. A close friend initiated a fundraising campaign that continues to assist with medical expenses, and many have stepped up to help. Above all, Sara has been a cornerstone in Mia’s healing process. Mia acknowledges, “I couldn’t have made it this far without her unwavering love and dedication to my recovery.”

Mia is slowly improving, but she knows her recovery pathway is long. “I’m grateful for every moment of this life I’ve been given. Even with everything that’s happened, I believe there’s a purpose for it all and a purpose for me.”

Mia’s narrative is one of hardship but also of hope—hope for recovery, hope for brighter days ahead, and hope that sharing her story will raise awareness for the countless others battling Long COVID, who need recognition and understanding.

This article was originally published on November 12, 2021.

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Summary

Mia’s experience with Long COVID illustrates the profound and often misunderstood effects of this condition. From initial illness to a complex recovery journey, her story highlights the challenges faced by many who suffer from Long COVID while emphasizing the importance of support and understanding from loved ones and the medical community.

Keyphrase: Long COVID experience
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