The other night, a horrifying realization jolted me awake: I haven’t rode my bike in over two years.
Suddenly, the memories came rushing back, and I imagined myself biking like I once did. I remembered how, in college, I would bike to errands and class. I remembered zipping around town with the wind in my hair. I remembered the long rides in the bike lanes and on the greenway, and my riding buddy’s incredulousness when I’d already run ten miles that morning and still was hard to catch.
And then I remembered those glorious solo runs, charging up the bridges on only my own two legs, my quads burning with the effort, and the payoff of looking out over the whole town from the top. I remembered how I got to know the area like the back of my hand from all of the running and biking I did. I remembered running fifteen miles just because it felt good. And most of all, I remembered the freedom I felt by being in peak condition and knowing I could theoretically get up and run a half-marathon at any moment if I had to.
But today, my goal is to simply be able to walk around the block again.
“I’m sick all the time,” I remember telling my PCP when things began to unravel. “I suddenly can’t run anymore… It’s like my legs are made of lead.”
And I remember how, after examining me and scanning through my chart, she looked sad and told me to read up on Chronic Fatigue Syndrome. “Unfortunately, there’s not much I can do to help,” she said. “You may feel better if you start learning how to pace yourself.”
And boy, was I mad and frustrated. Why isn’t she trying harder to help? I asked myself. No way is this how things have to be from now on.
Nevertheless, I took her advice and learned about pacing, and I got to a point where I didn’t always feel under the weather. But I’d had to completely give up all running and biking to get to that point. All I could do was walk a mile or two a day for exercise. I missed running and biking terribly, but in my mind, I couldn’t possibly develop another life-altering illness—whatever this was would surely pass within a few months.
At that point, I was still recovering from my last big PANS relapse. It was arguably the worst episode of brain inflammation I’d ever had, with catastrophic symptoms that nearly flunked me out of college and put my life in serious danger. Multiple rounds of IV steroids had seemingly gotten the disease under control. However, I now believe that I sustained a brain injury before I could get the steroids, and this combined with years of fighting various infections, including Lyme disease, has led to the constellation of neurological and immune system symptoms that gave me the diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.
From my diagnosis on, it was always the same thing when I saw a new doctor to chase down some answers, and they invariably asked about my exercise habits. I would choke back tears recalling what I could do just months earlier and how limited I was now. But no one was concerned about a long-distance athlete who could only go for short walks anymore. No one acknowledged the pain of losing my favorite hobby and my main coping mechanism for facing the depression and anxiety from my other illness. It’s like doctors thought it was healthy that I bothered to go for a walk every day and didn’t consider that it wasn’t healthy for me.
As the months went by, I did slowly regain some exercise capacity. I was ecstatic when I worked up to running a single fourteen-minute mile all at once without stopping—despite my personal best mile time being under six minutes while in my prime. I could only manage one slow single-mile run one time a week without making myself ill, but running at all again was an amazing feeling.
But then last year, everything changed.
For unclear reasons, everything came falling apart worse than ever before. I couldn’t walk more than fifty feet at once. I couldn’t drive myself places. I couldn’t cut through my foggy mind long enough to get anything productive done. It was like I had a perpetual case of flu that had also scrambled my mind.
Fortunately, I gradually improved as I stumbled on the right combination of supplements. I can now do some part-time desk work. I can usually drive myself to appointments and go into a store for my own errand on a good day. I can walk two tenths of a mile. I’m surprisingly effective at the part-time job I do from home, and I often forget how sick I am when in the thick of a project.
But now that I’m in isolation, I’m constantly aware of how sick I am, and all of this thinking about my illness is making me worse.
I would have thought I’d be more prepared than most people to be in a month or two of lockdown. Before this pandemic, I already spent the vast majority of my time at home. I was glad whenever I had a week when I didn’t have to leave the house for any doctor’s appointments.
But now, the realization that I’m stuck at home perhaps through the summer is making me feel panicked.
Rationally, I feel like I have no need to panic when everyone in my family is working from home, and my risk of exposure is very low. My loved ones are safe. I still have income. I still have plenty of projects I can do to stay entertained. Instead of being grateful for this, I’m more acutely aware than ever of everything I can’t do anymore.
The pandemic has forced me to acknowledge that I’m immunocompromised, and that if I caught the virus, it could permanently worsen the ME/CFS. Every time I get a delivery and we Lysol the crap out of it, I’m reminded that I’m at higher risk of getting COVID-19 because of my illness. I’m reminded that I’m not a healthy twenty-something like most of my friends are.
Even worse, I’m growing increasingly stir-crazy, and the ME/CFS means I’m unable to do much about it. I look out the window longingly every day, just wishing and dreaming about being able to take the dog for a walk in the neighborhood. I look at the nearby trees and wish I had the strength to climb one like I once did. I watch cyclists and runners go by and long to join them—what I wouldn’t give to have just one day when I could feel the freedom of movement again!
It’s been incredibly easy to sink into despair not only over what’s happening in the world, but over my own limitations while trying to cope with it. I feel like I’m of very little help in the household and to society because of the ME, and if I’m not careful, this fact will make me start feeling like a burden again—and then my depression will take over. It’s been a huge challenge to keep my spirits up right now.
But you know what? When I think back to how ill my brain and mind were while my body was in peak condition a few years ago, I don’t for a moment want to go back to how I was back then. It’s easy to romanticize that time because of the enjoyment I got from being active, which I can’t do any more, but I must not forget that exercise was often the only time I was okay with living in the mind I had. It was the only peace I ever felt in a life otherwise dominated by irrational fears and involuntary movements. Training for races was sometimes the only thing I looked forward to and the only reason I got out of bed each day. When I was in my running shoes, it didn’t matter that PANS had made my cognitive abilities at times like that of a child—I never forgot how to put one foot in front of the other and keep running.
I suspect I will continue to mourn the loss of my vitality until I regain it in any meaningful quantity, and that’s okay. But it’s important to not dwell on the past, but instead to be hopeful about the future. I’m now getting aggressive treatments for ME (yes, they exist!), so I have a better than usual chance of recovering. How amazing it would be to someday have the freedom to run while not tormented by PANS…