I’m not sure when it occurred to me. It was after I had passed the third-month mark that I realized I was still suffering from COVID-19 symptoms. I was infected with the virus around March 10th, 2020, and my symptoms are still present. A crippling headache. A stabbing pain between my shoulders, like being poked with a hot poker, that never goes away. I have chest tightness and a cough that requires the use of an inhaler to clear. And the confusion is so intense that it astounds me how far I have regressed intellectually.
Fatigue and nausea come and go, and my voice frequently sounds like a whisper because I can’t breathe deeply enough to speak loudly. After dealing with these symptoms for over 100 days, which came and went like waves, and lasting without a pattern, I realized that this could be my life. It might become my new normal. That is a far cry from my previous normal state. I have fibromyalgia, but I was very active prior to getting COVID-19. I used to be a dog trainer, so I was always near a lake, kayaking twice a day, walking three miles every day, and I started tap dancing and practicing 45 minutes to one hour.
During my illness and now whenever I relapse, all I can do is look out the window at the lake. I’ve never even attempted tap dancing since contracting COVID-19. I’m aware that I lack the necessary energy. I do, however, have some days when I feel pretty good. Going for a walk, cooking, and doing laundry. Then there’s the relapse. It happens continually and can take one to two days to clear and sometimes it takes up to 10 days. When this happens, I become depressed and return to bed because I need to sleep. I become anxious and reach for my inhaler to help me breathe. This is better than when I first got COVID-19. For that first month, I had all the symptoms you have ever heard of: Nausea, chills, headache, loss of taste and smell. My entire left side, leg, and arm were stiff and exhausted from excruciating pain, and in the worst-case scenario, I could not eat or breathe deeply. I had to call 9-1-1 to ask for oxygen.
I’ve noticed some improvements over time. But it is far from a full recovery for me. It wasn’t a linear journey either. I have some good days that give me hope that I finally kicked this but then it returns. There is no medical explanation for it. The test showed my lungs are fine. Follow-up tests for COVID-19 have been negative and my oxygen saturation is still normal. Doctors are honestly confused about what is happening and they don’t know what to do about it. The only thing I do that seems to help me is taking Tylenol when I have a headache, keeping my maintenance and rescue inhalers within reach, and mentally adjusting. Sometimes I get very discouraged and think: What did I do wrong, why? But then I should be grateful that I’m still alive.
It helps to know that I am not alone although this is heartbreaking. When I joined a group of COVID-19 long haulers on Facebook, I was surprised to read post after post that sounded like me. Some people are hospitalized during their relapses and have a lot more symptoms than me, so I’m lucky, although it doesn’t always feel like that.
Now I’m trying to focus on what I can control. I’ve signed up for two clinical trials where I track my symptoms every day so researchers can learn from people like me who have not gotten better. For health reasons, I decided at this point to give up the idea that I would never fully recover so now I found new sources of Zen in quieter activities that I enjoy. I also believe that I will continue to tell my story because unfortunately, I believe that there will continue to be many others in my situation. And realistically, I’m not sure everyone will make a full recovery from this virus.
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