My Worrisome Encounter With COVID-19 as an NMO Patient

Jennifer van Amerom avatar

by Jennifer van Amerom |

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For nearly two and a half years, I avoided catching the COVID-19 virus. When I finally ventured away from my home, I was infected. Weeks later, I’m still feeling the effects.

My daughter, Sophie, was recently given an opportunity to represent Canada at a global dance competition in Portugal. Pre-pandemic, we used to travel several times a year, as my husband, Mike, and I believe she needs to see the world.

Many countries have eased travel restrictions, and since we’re all vaccinated, we decided it was a low-risk venture. Famous last words.

Catching COVID-19

I developed an eye ache the night before we flew home, which is normal when I’m overtired. By the time we landed in Toronto the next day, though, I was experiencing hot flashes and full-body aches. The first thing I did when I got home was take a rapid antigen test that confirmed the infection.

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How Air Travel Can Affect NMO Patients

The COVID-19 virus is airborne, so we can’t say with certainty how Sophie and I caught it. However, given the timing, I believe I can identify the moment, or rather the individual, who infected us.

A part of me wants people to acknowledge when they get others sick — like when a parent knowingly sends their child to school with a head cold, and within a week, the entire class has caught it. What’s done is done, but an acknowledgement might lessen the sting. Perhaps it’s because I’m Canadian and we apologize for everything, but I’d feel better if there was some remorse.

Repeat check-ins

While I don’t hide my condition, I also don’t go out of my way to tell others about it. There’s just so much more to me than neuromyelitis optica spectrum disorder (NMOSD). People in my life know I am immunocompromised, but they don’t really understand why. As an advocate, when I’m asked questions, I’ll patiently answer them.

When it became public knowledge that Sophie and I had COVID-19, alarm bells went off in our community, and many people messaged me to check in. I know they’re coming from a good place, but when you’re in recovery, trying to respond to everyone becomes incredibly overwhelming. Maybe it was because of the recurring fevers, but soon I couldn’t keep track of whom I was speaking with. Then the bits of information I shared were passed around like a terrible game of telephone.

This is why I go into hiding.

Messages do help, as they remind me that others want me around. But it’s unrealistic and unhealthy to keep reassuring others that I’ll get through this.

A rainbow of symptoms

As soon as I tested positive for COVID-19, Mike secured a virtual doctor. In the middle of the night, I was prescribed Paxlovid, an oral antiviral medication, and by daybreak, I was ingesting my first dose. By the second day, though, I could no longer swallow. Even my saliva felt like razorblades. Breathing was difficult unless I was sitting up. I would drift asleep upright, only to wake to a feeling of drowning after toppling over or slumping down.

The ER doctor who later administered three bags of IV fluids and two bags of the anti-nausea medication Gravol described COVID-19 symptoms as a rainbow. Some patients only see red and blue, while others see the whole rainbow. Unfortunately, I saw every color and then some.

I’m still dealing with labored breathing, recurring headaches, blurry vision, and brain fog. My stamina and energy levels aren’t where they were before, so eventually I’ll need to work with a trainer to be able to go on long walks and bike rides again.

It breaks my heart that Sophie has lost some of her stamina, especially as a dancer. She still needs a midday nap, but her doctor considers her to have made a full recovery.

Lifestyle adjustments aren’t new

As an immunocompromised patient, adjusting how I live isn’t new. In my 13 years with NMOSD, I’ve tried my best to avoid infections. When Sophie was a toddler, she’d regularly bring home the common cold or flu. When I caught something from her, it took me weeks to recover. Occasionally I’d find myself in the ER, dehydrated and unable to keep down my NMOSD medications.

Immunocompromised patients often take precautions, like declining invites or continuing to wear masks in public settings. Unfortunately, there are no guarantees that we won’t get sick.

The aftermath of COVID-19

While my demeanor is calm, internally I’m trying not to panic. According to a study published this month in the Annals of Clinical and Translational Neurology, the COVID-19 virus can cause neurological disorders. A relapse of my condition is the last thing my body can handle.

My medical practitioners agree that the vaccines and the Paxlovid treatment saved my life. Without them, I’d be battling far more.

My greatest challenge will be returning to society. I’d be lying if I said that COVID-19 was like a bad case of the flu. I’m terrified of reinfection, something I’ll need to address with my mental health specialists.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).