Last week I caught what I thought was a cold, and finally took a COVID test. It was positive.
Since then, I've been exhausted and spending a lot of time in bed. When I stand up or walk a small distance, I feel woozy and lightheaded. I feel like I'm moving in slow-mo, and can get only a few things done each day because of the fatigue.
This has given me a deeper appreciation for what my husband and other people with ME/CFS or Long COVID must experience every day. I've felt frustrated when I don't have the energy I'm used to having. I've had to cut back my expectations and plans to work on projects. I've struggled with resting and feeling OK with "not being productive." I hate that I currently can't do things that I used to take for granted -- like take walks with my family. My greatest fear is that I'll develop Long COVID and won't be able to drive my loved ones to doctor appointments and do all the other things I do as a family caregiver. I'm hoping for a full recovery, but this is something we can't fully control nor find doctors who have an "answer."
This brings me to some amazing articles I'd like to share with you about fatigue, brain fog, ME/CFS, and Long COVID, in case you haven't seen them yet. The author is Ed Yong, who received the Pulitzer Prize in explanatory journalism and several other prestigious awards for his coverage of the COVID 19 pandemic. I'm a former journalist and really appreciate the amount of research that went into his reporting, as well as the great care Ed Yong took to write a nuanced and compassionate explanation of these complex illnesses that affect millions of people and have no cure.
I recently received PDF versions of three of his articles in The Atlantic magazine which are usually behind a subscription firewall. I'd like to share them here with you as a public service.
- "Fatigue Can Shatter a Person” (July 27, 2023) - "What Makes Brain Fog So Unforgiving" (Sept 12, 2022)
- "Long COVID Has Forced the U.S. to Take Chronic Fatigue Syndrome Seriously" (Sept 26, 2022)
As ME/CFS/Long COVID caregivers, reading these articles may help you and your loved ones feel seen. You may want to forward them to family and friends who are struggling to understand what ME/CFS and Long COVID feels like. What most people don't know is that ME/CFS has a worse quality of life of score than many other serious illnesses like cancer, stroke, and multiple sclerosis.
I hope you stay healthy, and I look forward to seeing you at a future support group meeting.
