By Rachel Baum, as told to Jennifer Clopton
I might never get better.
I don’t know the exact day I had this realization. It came at some point after I crossed the 100-day mark of still dealing with COVID-19 symptoms.
I contracted the virus around March 10th, and the symptoms still hang on. A debilitating headache. A stabbing pain between my shoulders that feels like I’m getting jabbed by a hot poker, and never goes away. I have tightness in my chest and coughing that still requires an inhaler to clear. The brain fog, clumsiness, and confusion are so bad that I’m astonished by how much I’ve intellectually regressed. Overwhelming fatigue and nausea come and go, and my voice often sounds like a whisper because I can’t get a strong enough breath to speak louder.
After 100+ days of dealing with these symptoms that come – off and on like waves, lasting and leaving with no pattern – it finally dawned on me that maybe this is my life now. At this point I’m really not sure this is ever going to go away. It just might be my new normal.
This is a far cry from my old normal. I have fibromyalgia, but pre-COVID-19, I was very active. I’m a retired dog trainer, so I’ve always been on the go. I live near a lake and was kayaking sometimes twice a day, going for a 3-mile walk every day, and I took up tap dancing, practicing 45 minutes to an hour a day.
During my illness and now whenever I relapse, all I can do is look at the lake out the window. I haven’t even attempted tap dancing. I know I don’t have the energy for that. Still, I do have days where I feel pretty good. I can go for a walk, cook meals, and do laundry. But then the relapse comes. It always comes. Sometimes it lasts for 1 day or 2, but sometimes as many as 10. When this happens, I’m knocked down, back in bed, needing to sleep, feeling anxious, reaching for my inhaler to help me breathe.
This is better than it was when I first got sick with COVID-19. For that first month, I was sick with all the symptoms you hear about – nausea, chills, headache, loss of taste and smell. For a few days, I couldn’t walk because my whole left side – my leg and arm – were stiff and in terrible pain. I had debilitating fatigue, and at my worst, I couldn’t eat or take deep breaths. Once, I had to call 9-1-1 for oxygen. In time, I did see some improvement, but for me it’s been far from a full recovery.
It hasn’t been a linear journey, either. I have some good days that make me hopeful that I’ve finally kicked this, but then I backslide. There’s no medical explanation for this that we’ve been able to find. Chest x-rays show my lungs are fine. Follow-up COVID tests have been negative, and my oxygen saturation levels continue to register as normal. Doctors are frankly mystified about what’s happening and what to do about it. The only thing it seems I can do is take Tylenol when the headache comes, keep my maintenance and rescue inhalers within reach, and try to mentally adjust to this new reality.
I get very discouraged sometimes thinking - what did I do wrong, why me? But then I think I should just be grateful that I’m still alive. It helps to know I’m not alone (even though that is heartbreaking, too). When I joined a COVID-19 Long Haulers group on Facebook, I was amazed to read post after post that sounded like me. There are currently more than 7,000 people from around the world in this group, and they too are still struggling with a seemingly never-ending list of debilitating symptoms that come and go in waves. Some people are hospitalized during their relapses and have had far more extreme symptoms than me, so I guess I’m lucky, although it doesn’t always feel that way.
For now, I’m trying to focus on what I can control. I signed up to be part of two clinical trials where I log my symptoms every day so researchers can learn from people like me who haven’t gotten better. I try to help others in my Facebook group when they’re struggling with the symptoms they’re still dealing with. For my own mental health, at this point I’ve just decided I have to give up the idea that I’m ever going to fully recover. I've got to stop treating it as if I'm going to be back to where I was before because I really don’t know if that will ever happen.
A lot of people get better and that's wonderful for them. But for some reason, there are thousands of us out there that the virus has grabbed onto and it’s not letting go.
If anyone else out there is dealing with this, I’d say – find yourself a support group because you’ll need it, and it helps – a lot. You need people who understand what you are going through and you may not find that in your family or social circle.
At this point, after experiencing symptoms for nearly 4 months, I’m trying to find the positive life lessons in this for me. I’ve always been a person who likes to go, go, go, and this is forcing me to learn to slow down, take things down a notch, and relax a bit more. I’m learning to really appreciate the good days when they come and pace myself on those days and then rest when the difficult times come.
Kayaking every day may not be in the cards for me anymore, but I can still enjoy the beauty of the lake. The other day I did fish a little bit, and that made me feel better. I’m finding new sources of Zen in quieter activities that bring me joy. I also think I’ll keep telling my story because sadly, I do believe there will continue to be many others like me. And realistically, I’m just not sure that everybody fully recovers from this virus.
Rachel Baum lives in Saratoga Springs, New York, and is currently participating in 2 studies tracking long-term symptoms in patients who had COVID-19. She says she finds great support from a Long Haul COVID-19 Fighters support group on Facebook and is happy that a book she authored in her first career as a librarian - Funeral and Memorial Readings, Poems and Tributes (McFarland, 1999) – is now helping many people who sadly have to bury loved ones from this virus.