The Challenges of Coping With Chronic Illness While Quarantined
Sticking to a routine and being kind to ourselves can help us stay healthy at home
Columns / April 12, 2020
If I have learned anything in my short life, it’s to accept the things I can not change.
I was ill throughout my adolescence and diagnosed seven years after my first symptoms showed. I was severely nauseous, fatigued, and had constant abdomen and chest pain. At one point, I couldn’t eat, surviving on rice crackers and water. Most of the time, I was alone at home. I was taken out of school twice, and I didn’t know if I would graduate high school.
Just a month before graduation I was diagnosed with Dysautonomia, which is an umbrella term for a dysfunction in the autonomic nervous system. Since my symptoms were mainly pain, nausea, fatigue, exercise intolerance, and tachycardia, I was told I have a generalized category of the disorder.
I was 17 when I was diagnosed at the B.C. Children’s Hospital. The doctor who diagnosed me said to double my salt and liquid intake, twice as much as the average person, and to do gentle exercises every day to keep the blood flowing in my body.
I’ve been managing it on my own for the last five years. I discovered that acupuncture worked the best because it directly stimulates my autonomic nervous system and forces it to communicate properly with itself. When I started five years ago, I went twice a week. Now I can manage to go every eight weeks before I experience symptoms.
I’ve been in a flare for a few weeks now, meaning I’m experiencing multiple symptoms that won’t go away with treatment at home. I was scheduled for an acupuncture appointment at my eight week period, but due to the COVID-19 pandemic and social distancing measures, my appointment had to be cancelled because the office closed.
I have been at home for about a month now, which has been manageable for me. The biggest challenge has been coping with my disorder and its symptoms. I’ve had days where I’m severely nauseous and it takes hours to fall asleep. My chest pain has also come back.
The hardest part of Dysautonomia is the mental struggle. The symptoms are random, they hit hard, and suddenly I’m stuck in bed. I’ve only had one bad flare in the past five years, but now I might be closer to having a setback like the ones I had in high school every day.
So what have I been doing to distract myself?
Early on in this pandemic, I found myself drowning in the news, which made my health worse. It was all I could think about. What is currently happening? What could happen? What will happen? Who is suffering and where?
Reading the news wasn’t helping me, so now I only read in the morning to find what I need to know. This boils down to listening to see if we can still get food, and to hear if there are new social distancing measures.
I don’t have to know what’s going on in every province and country while I’m trying to get my health on track, which is okay.
Since I have to focus on my health, I have tried to form a routine. On the mornings that I can, I do yoga and light exercises to keep my body physically relaxed and my disorder inactive. On my good days, an hour or so before I want to go to bed, I walk (and sometimes run) on the treadmill for 20 minutes.
My partner also does acupressure for me, massaging points my acupuncturist stimulated. It’s probably too early to tell if it works, as I still have symptoms, but I’m trying anything I can.
I’m also taking advantage of my time at home to do things I usually wouldn’t. I started reading a book I got in September, which is very relaxing to do on the deck in the sun. I have also picked up writing a book I started and dropped several times over the years. When I can sit up for long enough, I play the piano, which I haven’t had time for in years.
There is nothing better for us to do than stay home, stay healthy, and keep our family, friends, and neighbours in our thoughts.
To cope, I used to read the Serenity Prayer when I had a setback that put me in bed: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”