Eleanor’s Story

Eleanor received a diagnosis of ME/CFS following COVID illness.

Eleanor

NOTE: Eleanor’s story is one of ME/CFS following acute COVID-19.

My story starts off with a timeline of my symptoms. In July of 2021, I tested positive for COVID. I have been a nurse for 12 years and work at a busy hospital, but I probably got COVID the way many people have—through my son and his daycare provider. I never had a history of infection before getting COVID. My symptoms were fatigue, swollen lymph nodes, muscle and joint pain, fever, chills, and dizziness when standing and walking. Over the next week my fever resolved, and my muscle pain and lymph nodes improved. I had a cough and total loss of smell, taste.

By August I was back at work but was easily exhausted and short of breath. I took the elevator now when I previously took the stairs. In September, I started to experience difficulty concentrating and finding words, and I needed to write things down unlike before when I could multitask without effort. I could not drive without the GPS system even when a route was routine. I also experienced forgetfulness.

In October, I got a COVID booster shot and after, I felt like the dizziness was not as bad, but the fatigue was still there. At this point I had to change my work schedule. I had worked three 12-hour shifts but now had to make sure that I took a day off in between each shift so I could recover, especially from the feeling of being exhausted after doing something. And the brain fog and insomnia were hard. As I planned Thanksgiving, I almost went over the edge with depressing thoughts, and had difficulty making non-routine decisions or choices.

I made an appointment at a post-COVID clinic, but it took until January 2022 for me to see the doctor. The doctor told me that my post-COVID symptoms were parallel to ME/CFS and that it was all very similar. For me, the neurological symptoms (dizziness, brain fog), fatigue, and POTS (postural orthostatic tachycardia syndrome) were the worst. Also, the activity intolerance. Learning to live with my symptoms and the management plan (medications and building in breaks) have helped me.

My family is from Southeast Asia and the cultural traditions are different, but we maintain many of them through family celebrations and respecting our elders. In many Southeast Asian cultures if you have symptoms that are not physical, then your illness does not exist. Mental illness or depression and anxiety are taboo. My family had not heard of ME/CFS but commented that I cannot be tired forever.

My husband has been very supportive although he has struggled at times with being the primary caregiver for me and our son. For example, I would vacuum and then be flat out tired. Or I would cook and forget certain ingredients. Looking back, I wish I would have taken a longer leave time when I was first diagnosed with COVID because I was just not functional.

I was scared when the doctor told me ME/CFS because I knew a coworker who had it and I saw her decline. She said it was the most challenging period of her life. It really opened my eyes to ME/CFS, and I know now what it is like to have ME/CFS. I confess that my coworker did not just have anxiety or that it was all in her head; it was ME/CFS. My other coworkers and I should have paid more attention to this debilitating disease that has no lab test to pinpoint what is wrong. People who have it are suffering.