Long Covid: A Lived Experience

LONG COVID: A LIVED EXPERIENCE Prior to the Covid-19 pandemic in the spring of 2020, I was a happy and active person both mentally and physically. I loved my job, profession, spending time with my friends, running, and taking different educational courses. I know, nerd alert. I was active in my professional association and a Clinical Instructor. I worked with students from physical therapist assistant schools, mentoring others who either are in this field or who wanted to be, and helping anyone that needed it. I was also an avid runner and reader. Just a month before the world shut down, I ran my first 50 mile ultra-marathon. I was also reading a book about every other month. In the beginning of the pandemic, I helped my coworkers and patients as much as possible understanding that we were all going through this together as a family. Our health care team had become the patient's surrogate family. Their emotional outlets, their confidants, and their shoulders to cry on. Not only did we do this for our patients, but for each other. We leaned on each other more than we had leaned on anyone before. I chose to be the Covid-19 therapist when our building was hit. Knowing my other coworkers were either taking care of their own family, including older adults and young children, or they too were immuno-compromised, I did not want them to suffer and get sick. I thought, “I'm young enough and very healthy. If I do get sick, it won't be bad.” Boy was I wrong! There were less than a handful of us that agreed to work the Covid-19 unit when the patients became ill. Imagine 5 to 7 of us taking care of 30+ ill patients. My job became not only therapy, but certified nursing assistant, maintenance, and housekeeping as well. I helped the certified nursing assistants with feeding patients, cleaning them, and entertaining them. I believe there is even a video roaming around of an isolation gown fashion show we put on for the patients to make them smile. We took care of each other, and them. I caught Covid-19 in December 2020. The tests were not very reliable nor were vaccines available yet. I did my 2 weeks at home in self-isolation then I was back at work. After a few weeks of continued shortness of breath while still feeling sickly and utterly exhausted, I spoke with my doctor. We were learning it took about 3 months to feel completely better and over the infection. Three months went by. Three turned into 4 and 4 into 5. I was still having a lot of shortness of breath, confusion, chest pains, and extreme exhaustion. My initial doctor was good. She always believed me; however, we took things symptom by symptom. We did not know back then to look at this as a collective. I always believed I would get better any day now. Wrong. As she retired, I struggled to find a new doctor who listened to me and believed me. As I continued being sick, and as my condition grew worse, my teammates were incredible. I was still trying to take students. It was when my brain forgot how to read, and I had my first panic attack, I knew that piece of my professional life needed to stop. My Certified Occupational Therapist Assistant, COTA, partner assisted me with multiple treatments, helping me find equipment when my vision was too blurry to see it. My physical therapist was incredibly supportive. He was always ready to cover patients for me when I was too sick to stay at work or to even go into work. It was a new feeling for me to need to lean on my coworkers that much. I was the helper, the doer. I was the one to jump in and cover for them without a second thought. Now it was my turn. On one occasion, my boss had to drive me to the ER when my legs stopped working. My teammates have had to help me into a wheelchair, into a car, and down the road to the emergency room. My life had turned upside down. I wanted to go out and run to help relieve the stress of my new state, of what was happening in the world, and in my building but I could not walk half a mile without losing my breath. I felt as if I was going to pass out. I wanted to read or watch movies to escape into a different world. I could not do this either as my brain could not concentrate or even figure out the plot of a movie I had already seen. Almost 3 years later and I finally got my official diagnosis. It took over 2 years to finally get a doctor to listen, believe, and give me the Long Covid diagnosis. From this I have also been diagnosed with fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS, or chronic fatigue syndrome. Almost 3 years later and I am still working, however, in a different fashion. I can no longer work full time at a facility. I am a travel Physical Therapist Assistant. I work for a few months and then need to take multiple weeks off to sleep and rest. Even when I work, I go to bed just after getting home because I am exhausted. Some days I have to rest and lay down at work because I am overcome with dizziness or nausea. I have an emergency snack drawer for the days I cannot get out of bed to eat. That is, if I can even eat without getting sick. If I am lucky enough to make a connection with a coworker at a new building, I tell them a little of my story, and where I keep my emergency medication should I need it. Thankfully, I have been very lucky in some of my assignments and have made some truly beautiful friendships. I have worked a few assignments with a certain Certified Occupational Therapist Assistant. She is my safe space when I work. She helps me to read my calendar to make sure I do not miss appointments, miss any patients, or any documents that are due. I know I can text her one word, and she will be right there with my medication and a hug. My teammates have stepped in to help me during the times I have needed it. I can proudly say that I have not needed it nearly as often this past year and a half with the new work. One of the hardest things I have been through, and still go through, is learning to ask for help. To accept, and be ok with, not always being the helper and the caregiver. To lean on my teammates as much as I want them to lean on me. This has helped me come to a better and more meaningful understanding of the phrase “better together,” and even “we are family.” To be completely honest, I am learning more from my patients than I ever thought possible. I can relate better with them when we talk about chronic illnesses. I believe them, even more now, when they talk about the pain. The high pain levels they are experiencing even when their faces do not show it. The random times of confusion, or being so tired you just cannot get out of bed to use the bathroom. To want so badly to get better, but the body simply will not let you. I understand. I can now not just empathize but sympathize and relate. I am learning to listen to my own words when I talk with them about using a mobility aid or a wheelchair as I am currently struggling with the reality that I have a dynamic disability which requires the use of a wheelchair at times. I can relate to the grief of losing who you once were and come to terms with who you are now. That the life you once thought you would have, will no longer be. To not be afraid to ask for help when needed, even if it is when I forget how to tie my shoes, or undo Velcro. I understand their sense of lost independence. I like to think this has made me a much better clinician.