The Long Haul

In January of 2020 I reluctantly hauled myself back to college after winter break. I was a freshman four hours away from home in a new town with people I barely knew. It was stressful, but I was scraping by and finally starting to manage my ADHD again with frequent trips to the library so I could work in a quiet, comfortable environment with plenty of coffee.

On January 24th at 8:08pm I sent an email to my mom saying that I thought I had the flu and was considering seeing the campus nurse. It's a strange thing, to have an exact date and time for the moment your life changed forever. The "flu" I had was, of course, COVID-19. The U.S. government wasn't aware that it was in the states, but since then several doctors in the area where I live have told me that they experienced a COVID-19 outbreak in their offices around this time as well.

I only had it for a few days, but I was one of the many unlucky people to develop "long COVID", and I didn't even know it was happening. I thought my depression was getting worse. I fought through it, determined to not let my mental illness stop me from achieving my dreams. I spent every spare moment asleep in my dorm. I had headaches often. Even getting to the dining hall for meals was sometimes unachievable. I kept telling myself it was all in my head. I went to the gym on campus to try to get into a workout routine and left dizzy, confused, and barely able to stand, but I still assumed I was just out of shape or dehydrated.

By the time I came home from college for spring break I knew something was really wrong. I could no longer force myself to fight through the fatigue. I struggled to keep up with online classes after my school closed for the virus, and eventually had to drop out. There were days when I found myself barely able to walk to the bathroom, much less read pages in a textbook. The final straw came when I lost my passion for making stimboards, something which I found fun and relaxing, because I was getting mentally exhausted so quickly. So I took to the internet to get answers.

When I looked up my symptoms, the words Chronic Fatigue Syndrome crossed my screen. I knew about it already from a Youtuber I watch, Jessica Kellgren-Fozard, and it matched my symptoms perfectly. Illness after exercising, general fatigue, light sensitivity, insomnia, brain fog, unrefreshing sleep, and "crashes" that lower overall mobility. Unfortunately, all the articles about CFS read difficult to diagnose and not real and no treatments. I knew there was a long road ahead of me. Luckily the doctor I work with is amazing and never once questioned the reality of my symptoms. After much testing to rule out other illnesses, she even offered the possibility that what I was experiencing might be a result of the "flu" I had in January, leading us to the conclusion of Long COVID.

Since discovering CFS and Long COVID I've made a lot of accommodations for myself. All of my devices have a blue light filter to protect me from light sensitivity, I have blue light glasses/sunglasses for being out in the world, I take supplements, I've applied for SSI, and I have a power wheelchair for longer outings. But it doesn't change the fact that my life will never go back to "normal". I'll likely never be able to do traditional college, I'll never be able to do weightlifting like I wanted to, I'll never be able to do long hangouts with friends, or just run for the fun of running. Everything I do has to be carefully calculated to avoid a crash, which could worsen my condition permanently.

As life returns to "normal", I ask you to remember those of us whose normal has changed. Donate to scientific research for Long COVID and CFS, become part of the You+ME registry as a control to help scientists narrow down a cause for CFS, and most of all, get vaccinated.