International Long Covid Awareness Day, 2023

Today is International Long Covid Awareness Day. It’s been almost a year since my first covid infection and four months from my second. I have become one of the “Millions Missing,” - someone who has developed a debilitating form of long covid - specifically, Myalgic Encephalomyalitis/Chronic Fatigue Syndrome (ME/CFS).  
 
I don’t (and won’t) post regular health updates, but I am today because awareness doesn’t come from silence. There’s little research into ME/CFS, no cure, and no proven treatment plan. Raising awareness is the best tool we have for prevention, increasing advocacy, and for getting the needed funding to find appropriate treatments and a cure.

ME/CFS isn’t being tired a lot. I often am, but that’s not the problem. It’s the cardinal symptom of post-exertional malaise that keeps me from work and the activities that I love. Post-exertional malaise, or PEM, means that during or after exertion, the cells of the skeletal muscles aren’t able to produce enough energy to function normally. This is why sleep doesn’t cure the fatigue and why exercise makes this condition worse. No amount of coffee can stimulate my muscle cells into functioning correctly. (So maddening!!) Typically, it takes two or three days of bed rest to recover when I’ve over exerted myself. But after major events, such as the holidays, it can take weeks. 

In the spring of 2021, I graduated from nursing school, realizing my life long dream. I worked for only four months before getting covid. With the inability to maintain an appropriate amount of energy, I've been unable to continue pursuing my career. I hope to return to nursing next winter.


 

 

 

 

Ten ways ME/CFS impacts my life:

- It can feel like my legs will collapse beneath me, it can be hard to sit up, and hard to scroll on my phone because I don’t have enough strength.

- It’s the challenge of making a healthy meal and then being too fatigued to eat it.

- At it’s worst, it feels like my body is shutting down as if there’s not enough energy to function.

- It’s grief for the strong, active woman that I was and frustration with my inability to do the things I love and with the people I love.

- It’s frustration at being unable to contribute financially and to complete my usual household duties. There are weeks when a trip to the grocery store is too much.

- On days when I do have energy, it’s the joy of getting things done, the hope that this time I’m really getting better, and the despair that follows when I crash again.

- It’s pacing myself to preserve energy. Both to try to have enough energy to be able to make dinner at the end of the day, and resting up a day or two before social engagements to be able to participate and to decrease the recovery time.

- It’s the emotional pain of having an invisible and poorly understood disability that some people doubt, especially as I don’t often leave the house on bad days, so they only see the “good” days.

- It’s hope that I’ll get better. And fear that I won’t.

- It’s the fear for all of us as we get covid again, and again, and again.    


About five months from my first infection, I had days where I felt completely normal, but still experienced significant energy crashes every week or two. I have not yet reached that point after my second infection. But as there’s recently been a little improvement, I’m hopeful. Even though this has had a huge impact on my life, I’m still lucky - many people who developed ME/CFS from covid are currently housebound or bed bound.

I hope this has helped to raise awareness of ME/CFS for the estimated two million Americans who have developed it after getting covid. I hope that if you develop fatigue, you listen to your body and rest. I hope you take appropriate precautions to prevent getting infected.