Both Post Covid Syndrome and Chronic Fatigue Syndrome are relapsing and remitting disorders meaning the symptoms can come and go. There are days, weeks, etc where my symptoms are running the show and then days, weeks, etc where it feels like I actually have some control over my body. This is by far the hardest component of my illnesses. I’ve often thought it would just be better to always not feel good because then I’d know each day what to expect. It also makes it hard for others to understand my illnesses because I don’t always “look sick” and I’m not always dealing with my symptoms on a level that greatly impacts my daily functionality.

I often feel like I’m on rollercoaster. The days, weeks, etc my symptoms aren’t running the show and I feel like I’m in control of my body feel like the moments when you’re on a rollercoaster slowly inching up the hill to the first drop. It feels as if I am just suspended in the rollercoaster car waiting for it to descend down that first hill into the valley. I used to do my best not to enjoy the days I was on the top of the rollercoaster because I knew they wouldn’t last and inevitably I’d be back down riding the valley of the coaster soon enough. However, recently I’ve been working on enjoying, celebrating and embracing the days I am on the top of the rollercoaster without worrying about the inevitable hill I’ll race down at some point.

This morning I woke up and the Visible app I use to track my symptoms and my heart rate gives me a body stability score for the day. This score is out of 5 and this morning I was a 5/5. For an overachiever like me a 100% in anything is a win! In the past, I would have tampered my excitement at seeing such a high stability score and told myself “Yeah, but you don’t know how long it will last. Soon enough you’ll be back in the 1’s and 2’s.” I didn’t do that this morning. Instead I decided to embrace it and take my 5/5 stability score out for a spin! I rented an electric bike and rode my morning away on the beautiful paved trails in my city. With the wind in my hair and my legs peddling past ducks, trees, and other bikers I felt tangible joy. Joy that my body was able to ride a bike. Joy that I was able to be present in the day. Joy that for today I feel good enough to get out and do something I love.

I have learned the only way to live with the relapsing and remitting rollercoaster that I have to ride is to be present in each day. I don’t think about tomorrow because I don’t know what tomorrow holds and I don’t have control over it. I can do the same thing tomorrow that I did today and it may cause me to have a flare of symptoms and to crash. There is no certainty on my rollercoaster. For someone who is Type A with a capital A and finds tangible joy in buying a planner and filling it with all my perfectly laid out plans, the fact I don’t know what each day will bring in terms of how my body feels and what it can do is a struggle. I used to fight the reality of no certainty and try to get my body to conform to what I needed. I’ve learned I have to conform to where my body is at and what my body needs, which is sometimes in direct opposition with what I want to be able to do.

If you find yourself on a rollercoaster of some kind in your own life, instead of trying to control where the coaster goes, how fast it goes, and how many hills you have to go up and down, try to just sit back, enjoy the ride, and know that what goes down must go back up.