Invisible wounds, after 2 years with Long COVID

Today marks two years since I contracted  COVID-19, which progressed into Long COVID and there still are not a whole lot of answers. My health has improved a lot, but the bad days show up and the good days have their limits. I have to constantly be aware of air quality, sleep, food, hormones, stress and how much I physically exert myself. I miss the comfort I used to have in my body’s ability to do anything I asked of it.

Getting well takes so much work outside of appointments. Relentless work with no promises of success. Getting up everyday, doing the work, searching your soul, the internet and books for answers and trusting that putting one foot in front of another will get you somewhere closer to knowing wholeness.

Long COVID is an illness that even doctors and researchers studying it don’t have a grasp on. So it makes sense that people who don’t have it, or aren’t close to someone who does, find it really difficult to understand. Because of where I am in my recovery, I am at the point that, with a nice dose of steroids, and a host of other medications, I can go on runs. My heart rate gets much higher than it should and I have to monitor it. I have to be very careful I don’t trigger my inflammation to get worse, fevers, heart problems to flare back up, extreme fatigue, body coating pain, brain inflammation and burning in my lungs. If I run outside I have three kinds of masks that I wear just to protect my lungs from poor air quality. 

What some don’t understand, even many medical specialists I’ve seen, is that I actually need to run to clear the lymph that builds up in my body. My immune system is still fighting as though it has an acute infection–it’s been doing that for two years and we can’t figure out why or how to get it to stop. I have to move my body enough to clear stuff out, but not too much to cause my symptoms to get worse. It’s having a foot on the gas and break pedals at the same time and I’m constantly feeling my way through. I can’t build muscle in my arms–I can’t carry my son’s jacket for him when we are out on a walk without my arms shaking for hours afterward. I can’t lift my arms over my head in physical therapy or I’m in bed for a week. So many things that most people don’t see.

I saw a doctor for experimental treatment who is focusing on treating Long COVID. He emphatically told me that I needed to stop running because he thought it was making things worse. I explained that when I didn’t run I became bedridden again. Even if I feel like total fucking trash and am exhausted, I have to at least get my ass out for a walk or it gets worse. It’s a dance I have to feel my way through everyday. 

That doctor didn’t listen. Regrettably, I did listen to him and I regressed horribly. I was back in bed in extreme pain, the volume of my symptoms turned up and I was back to being unable to do regular activities for six weeks and then had to build back up my stamina again. Yes, for some people exercise makes their symptoms worse, for me at this point in my recovery it helps me manage my symptoms.

Yet, for more than 6 months of being sick I couldn’t imagine even being able to walk a block. For those 6 months I had no idea if I ever would be able to walk more than a few steps at time again or do simple tasks like washing dishes. There was no understanding of what was happening to me and no prospects on what the future of my health held. Long COVID is such a complex disease that affects everyone uniquely that there is no one size fits all prescription for what to do. I’m so grateful for a primary care physician that understands that and is protective of my running for both my physical and mental health. I’m grateful for a doctor that sees me.

I find that with invisible diseases, cloaked in mystery and disbelief like Long COVID and mental illnesses, that the general public is confused about when someone is sick and when someone is well. You can have extreme depression, be suicidal and have the biggest smile and loudest laugh in the room. I know because this has been my experience. You can have life-altering Long COVID and go for a run. It used to be that every second of my day was defined by this disease. Now, my symptoms have improved to where that is not the case, but I literally spend hours everyday doing treatments, taking medication, dosing out medication, making appointments, going to appointments, getting lab work done, re-ordering medication, figuring out nutrition, doing PT and dealing with trauma around what I’ve been through. Just like depression, I have good days where my world is a bit brighter and more hopeful and I still have days where I can’t get out of bed. 

Having experienced both debilitating mental illness and physical illness, I know that both require so many of the same skills. The skills I gained working my way through mental illness have given me many of the skills that have helped me deal with severe physical illness. Getting well takes so much work outside of appointments. Relentless work with no promises of success. Getting up everyday, doing the work, searching your soul, the internet and books for answers and trusting that putting one foot in front of another will get you somewhere closer to knowing wholeness. Putting faith in yourself that you are capable of healing, even when there are many times when that feels like the most inconceivable outcome in the world. Even if you feel like you have no qualifications and that you are hacking your way through the densest jungle imaginable, you have everything you need inside of you to be the path builder as long as you are willing to keep taking the next step in front of you.

I was so disappointed in my body for getting so sick. I was disappointed in myself. I felt weak to be one of the people thrown to the ground by this virus. Kendall had a different perspective. He thought that my body was amazing, strong and was keeping me alive. He thought my body was taking on a Herculean challenge, fighting for my life against a horrible disease and persevering. It’s like the image of The Hag and The Beauty–you can find both images depicted in the ink.

For many people, when we are hurt, knocked down by life and suffering we can turn to criticizing ourselves. It’s not obvious, but we are searching for a way to not feel so vulnerable. Our minds struggle to accept the reality that horrible things can happen and there is absolutely nothing we could have done to make it stop. The burden of that truth is too much to bear—everyday we are at the mercy of life. We can destroy ourselves with feelings of guilt, shame, embarrassment, self-hate born out of thoughts of being a failure because we want to believe that we can prevent all suffering. 

My doctor and Kendall saved my life. None of us knew what was going on. We didn’t know why I was in critical condition and not getting better. It wasn’t until one weekend when my doctor went digging around for answers and to see if there were others like me that she found that there was a whole group of us being kept alive at home. That same weekend, a friend reached out to Kendall and let him know that she had a friend that was going through the same thing as me. Through her we found a self-assembled group called Long Haulers. 

We tried to piece together what was going on. Most mainstream doctors weren’t believing us. I found that I wasn’t alone in not being believed and not being able to get help from M.D.s. It was apparently pretty common. I went to a respected cardiopulmonologist months after initially getting sick. I typed up my experience because I couldn’t speak much. The doctor read it and was compassionate, but she had no knowledge of COVID Long Haulers. Yet, she shared that 5 women had come in just that week and all of them said the same thing that I had just shared. She was shocked. Repeatedly she stated that everything, from symptoms down to the emergency room experience, had been the same. She asked to keep what I had printed out. 

The interesting thing is that all of the women that the doctor had seen were young, previously healthy and had gone to urgent care and the emergency room multiple times because they couldn’t breathe. And none of us were believed. A few of the women were nurses and each described the same symptoms. Every one of us were told when we went to the emergency room that the reason we were struggling to breathe was that we had anxiety. When I was in the ER, after the doctor finished sharing how he was worried about his multiple rental properties and how they would be affected by the pandemic, I was told to meditate and then told to come back if I was struggling to breathe. When I said that I was struggling to breathe now and they were sending me home with nothing, they told me to come back when I started to turn blue. That was crazy then and upon two years of reflection it’s still fucking CRAZY.

My kids and husband sat in the car waiting for me to come out or to hear from the doctors that I was being admitted. Kendall gave one of the nurses his phone number in case they needed to contact him, in case I was dying he wanted to be able to say goodbye. They came in with the piece of paper he so lovingly handed them and were laughing. As they laughed, they told me that they didn’t know what they were supposed to do with it. I still have so much anger towards these people who were supposed to be helpers for not even being decent humans let alone helpful medical professionals.  

With my lungs so damaged I had to think about every breath. When I wasn’t thinking about breathing, I stopped breathing. If I fell asleep I woke up gasping and had to immediately calm myself and not try to catch my breath. I wasn’t going to get that much air and trying to get enough air to feel satiated made it worse. Instead, I would lay there, completely still, and resume telling myself to breathe, mentally focusing on a path my mind carved for air to make its way down the back of my throat to my lungs. When you think about every breath and every breath is a struggle to get enough air, the days become very long. 

I had to be in one room that we kept sealed. We had air purifiers in there and humidifiers that kept it a certain humidity. My lungs felt like they had a chemical burn. Any noises caused my heart rate to soar even higher, my muscles to spasm and my breathing to get even worse. No one could touch me. I wanted a hug so badly. I wanted to be comforted and told what was going on and that everything would be ok. Instead, I stared at the wall and focused on breathing. Breathing. Breathing.

I couldn’t watch shows, read, talk, or move around. I couldn’t do anything but think about breathing. Kendall had to assist me with eating, going to the bathroom, walking, getting dressed and getting in and out of the bath or shower. My muscles would spasm. My back was incredibly swollen. My resting heart rate was very high and erratic. My neck and throat were swollen like a linebacker’s. My ribs were swollen and my intercostal muscles would spasm. Eating was painful. Everything was painful. When I was well enough to type and wanted to talk I’d type it out and Kendall would read it. If I wanted to talk to my sons, Kendall had to read it out loud to my youngest son, who I’d been in the middle of teaching to read when I got sick. 

What I would picture through all this was my family’s favorite place in the world. It’s a hike we would go on when we wanted to celebrate or when we needed the world to give us a hug. It’s the place I chose to go for most of my special celebration days, when any of us needed a pick-me-up, or even just a dose of sunshine and happiness. I needed to see that place again with my family. I was terrified I never would. Yet, everyday that’s what I pictured when I wanted to give up; the four of us together there once again.

About 6 months after I first became sick I began physical therapy to try to begin walking again. I couldn’t walk outside because my lungs couldn’t handle the air quality. My PT suggested a treadmill because it would help me regulate my speed and be able to control everything. We reached out for help and a group of loving people–both that we knew and didn’t–responded and raised enough money in one day for us to buy a treadmill. I think about all of them every time I get on the treadmill. My first day on it I was only able to walk for 2 minutes at a very slow pace. Then I went back to laying down. 

After six months of speech therapy I was finally able to read books to my kids again. When I read to them or even when I was just talking, my youngest son would wrap his arms around me and tell me, “I love hearing your voice, Mama, it’s beautiful.” 

That’s how it came to be that this past Christmas, almost 2 years after getting sick, after working my way up on the treadmill and with the help of lots of medication, including steroids, I was able to join my family at our favorite place in the world. I was able to cheer. I was able to say the words, “I did it.” That day our beautiful voices joined together in that beautiful place, and we celebrated and cried. This is how we do it. We celebrate every win, big and small, along the way. There is no road to recovery, of any kind, without setbacks along the way. We fall and we cry and we make mistakes but we keep on going, being our own path builders, healing our bodies and our minds.

• Topics:
• Long Covid