The Long COVID Survival Guide by Fiona Lowenstein

Author:Fiona Lowenstein
Language: eng
Format: epub
ISBN: 9781615199112
Publisher: The Experiment
Published: 2022-01-15T00:00:00+00:00

My journey started in late-November 2020. The intense suffering, both mental and physical, was unlike anything I’d ever experienced. Until March 2021, it was a fight to make it through the day. Mornings were always the worst, because their arrival meant the day was just starting. Night was best. I would feel a wave of relief when seven o’clock rolled around. That meant I had made it to the end of the day. Yet, as comforting as nighttime was, it was also a time of dread. I never knew what the long night had in store for me. Often, it meant staying awake with the intense urge to shake my body, what I now have come to know as akathisia, a movement disorder that makes it hard for you to stay still. Perhaps you have experienced something similar. Or maybe you’ve experienced vertigo, cardiac irregularities, muscle weakness, limb-swelling, post-exertional malaise, prolonged fevers, rashes or hives, psychosis, or any of the many other symptoms prevalent in our Long COVID community.

Although I’m now functional and have been able to find joy in life again, my healing journey has been a fickle road. Recovery isn’t a straight line. Recognizing this was helpful for me to manage my expectations, and it may be for you, too. Some days are going to be hard—really hard. Days when your symptoms have flared after you thought you were out of the woods, when you feel the room tilt to the left from vertigo, or have to steady yourself because of breathlessness. Days when you’re simply sick and tired of being sick and tired, or when you flashback and, instantly, you’re in the toughest early months of your trauma, and you lay in bed sobbing and reeling in shock. It’s okay to feel all of it. There will also be days that almost seem normal, where you laugh, make yourself a nice meal, have a cup of tea, and enjoy the birds chirping outside in the sun. As you begin to learn about your illness, gain support in managing it, and possibly improve, your body will come out of crisis mode.

But at the beginning, Long COVID ate me up from all sides until it caved in on everything that made up who I was. Any bit of joy dried up. The neurological symptoms that left me in a thick fog also snatched away all the ways I usually distract or console myself from pain: music, television, social media, good conversation, and reading. For months, I thought Long COVID marked the end of my life. It’s not that I thought I was going to die from the disease. It’s that I didn’t want to live. Living with Long COVID didn’t feel like living. It wasn’t recovery or death—it was the limbo, the nothingness, the ghost of myself that I had to wake up and bear witness to every morning. But, slowly, I found my way back to myself, outside the limbo and back into the world of the living.

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