Tracey’s Lived Experience with Chronic Illnesses: Long Covid, POTS, MCAS, Chronic Lung Disease, Chronic Sinusitis
On 2/2/22, I contracted COVID-19, leading to Long COVID and POTS (Postural Orthostatic Tachycardia Syndrome), leaving me homebound and bedridden for months. Since this interview, filmed in the first year of my illness, I’ve been diagnosed with additional chronic conditions, including Mast Cell Activation Syndrome (MCAS), Chronic Lung Disease, Recurring Pneumonia, and Chronic Sinusitis. Almost five years after contracting COVID, I’ve been referred from one specialist to another as doctors try to determine the cause of my many unexplained symptoms. I can only stand for a few minutes at a time, and I can only leave the house using a wheelchair.
I gave this interview in late 2022 for ME Support New Zealand to help others struggling to understand what they’re going through after contracting COVID. I look at it now and wonder how I managed to put on makeup. What you don’t see is the weeklong crash that followed this interview.
At the time of the interview, my main focus was treatment for POTS. I shared my long list of symptoms and the strategies that helped, including difficulty breathing, digestive issues, fatigue, sleep problems, and body pain.
Over the past almost five years, I’ve also suffered two frozen shoulders (the name belies the pain) and sepsis, which landed me in the hospital fighting for my life. As a result of that battle, I now have chronic lung disease: bronchiectasis and bronchiolitis, recurring pneumonia, and small airways disease. I’m about to undergo surgery to clear my sinuses, which my latest specialist believes are contributing to my recurring pneumonia. These issues have had a major impact on my ability to manage my POTS, which remains severe.
My life has changed dramatically; suffering one health issue after another put me into survival mode, but when I finally recovered well enough to move beyond that, I struggled to understand where I fit in the world and God’s plan. I used to say, “If I have only learned God loves me from this, then that is enough.” In that first year, my cardiologist asked if I’d like a referral to a health psychologist. I didn’t understand why - I was going to get better, right? But then I didn’t, and one thing after another led me to realize a health psychologist was exactly what I needed.
That’s when I began to write the story of Rachel, Beloved of Israel. Instead of focusing on what I couldn’t do, my psychologist helped me focus on what I could. God had laid the story on my heart a couple of years before I became unwell; my research partner had just given birth to her daughter, whom she named Rachel Beth; and because of my severe brain fog, I couldn’t remember why it was important. So, with God’s help, I pulled up our research notes, and it all came flooding back. I remembered why God wanted this story written.
Thank you for watching this video. I hope you’ll gain some insight into chronic illness, particularly Long COVID and POTS, and the hidden story that led to the writing of Rachel, Beloved of Israel.
Tracey shares her journey with Long Covid with ME Support NZ to help other sufferers understand their symptoms and find the help they need.
