I was a very active mother and stepmother of seven children. I danced and played golf, basketball, and volleyball. I did pilates and was very active in my church. I was a fun and silly person who got things done quickly. I even walked fast.
In 2010 I came down with either Whooping Cough or Bronchitis. I recovered within two weeks but the intense fatigue and chest tightness remained for nine weeks. Two years later it happened again. It was another nine weeks of CFS. Two years later it happened again, but that time I never fully recovered. I went to three pulmonologists. Two heart specialists. An endocrinologist. A rheumatologist. An orthopedist. An allergist. Several chiropractors. Two acupuncturists. I spent a week at the Mayo Clinic. The diagnosis from most is that I have costochondritis. My rheumatologist told me I also have Sjogren’s and fibromyalgia. When I told him I think I have CFS he said, “Of course.” Was that an official diagnosis of CFS? I’m not sure. When I mentioned it again he suggested I see a psychiatrist and/or a counselor. I have since seen both. They helped me deal with it, but I’m not better physically.
My chest feels like there is an anvil sitting on it, or that I’m in a very tight straight jacket. It’s hard to expand my chest to breathe, yet I pass all breathing tests with flying colors. CAT scans and MRI’s show nothing. I’ve had Post-exertional malaise for years without knowing there was a name for it. I know I have ME/CFS. I need to find a doctor who is a believer.
It used to be somewhat cyclic, where it would wax and wain with no apparent reason. Any upper respiratory virus would knock me back down and it would takes months to climb back out of it. However, in December of 2020 I got COVID-19. Over the seven weeks that I was sick my cough became so bad that my primary care doctor begged me to go to the emergency room. I was adamant that I didn’t want to go. Instead, I got Albuterol and a nebulizer and that got me over the hump so I could recover.
Since having Covid, my ME/CFS is the worst it has ever been. It’s like I dropped down to the most intense level I’ve ever had. I only leave the house to get groceries. I wake up at 9 a.m., maybe fix a meal or do some laundry and then I’m back in bed by noon or 1 p.m. I’m too exhausted to do anything that requires much brain power. I have to be very careful and protect myself from too much physical, mental, or emotional, stress or I crash for a couple of weeks. Too much of any stimuli puts my body under stress. Standing still exhausts me within a minute. Bending over hurts my chest. Conversing, in person or on the phone, is extremely exhausting.