What if my superpower is gone?

Six weeks ago, I was in the best shape I’ve been in for some time physically and mentally; I felt great! I was working out 5 days a week doing peloton cycling and boxing, yoga, and mixing in the treadmill, seriously I felt terrific. I love working out — it makes me happier and more productive. Then like someone threw a switch, it all changed.

I remember it clearly, I woke up that morning feeling great, got dropped off at work, walked across campus, and took the stairs up to my office. By the time I got there, though, I did not feel well at all. I was dizzy and nauseous; I had a headache and brain fogginess and felt awful. I sometimes get hypoglycemic (I literally have to eat like every couple of hours), so I figured I just needed to eat something, which I did. Afterward, I felt a little better and headed to class. Still, a couple of hours into class, I started not feeling well again, and headed home — that was on a Wednesday.

I called out sick the next day and then worked from home on that Friday. I rested all weekend, but by Sunday, I couldn’t walk up the stairs without being so exhausted I had to lay on the couch for half an hour. There was no way I could physically go to work, so I worked from home for the next couple of days until I could get a doctor’s appointment. As soon as my doctor saw me, she said, “wow, you do look punky”; she told me to take the rest of that week off — 2 days. I muscled through that following week, working from home, and then after repeatedly being told I did not look great, I took two more days off.

Over these six weeks, my boss, colleagues, and family were close to begging me to use my sick time, with me refusing, swearing that as long as I could work from home, I could manage. My rationale was that resting alleviated my symptoms but was doing nothing to remove the cause, and so if I was working, I could at least continue to test if I was still sick (I know it’s messed up logic). Finally though, after 4.5 weeks of this, I hit a wall so hard I thought maybe I had broken myself in a way that couldn’t be fixed; I had never felt so mentally and physically exhausted and unwell — with lots more tests planned but no answer in sight, my doctor recommended an extended leave from work for 8 days which my family and colleagues graciously made sure I took.

Basically, the gist of what has been going on is that I can’t do any extended activity that causes physical or mental exertion. When I do, I become extremely exhausted, queasy, and dizzy. I get a headache accompanied by brain fog. At its worst, over the past six weeks, there have been periods where I can’t move from the couch after even the smallest amounts of activity. Now I know what you are thinking, we are all exhausted, but I know what normal exhaustion is, I’ve spent my life doing too many things all at once. Heck, in the beginning, my sister even said to me, maybe I have what you have too, I’m always tired. It's more than just a feeling of being tired, it's an inner exhaustion that’s hard to explain, accompanied by the other symptoms I’ve mentioned, which make it debilitating at times.

For the first six days of my extended leave from work, I did nothing but lay on the couch and binge-watch TV. By day eight, I felt great, mostly back to my old self — maybe my family and colleagues were on to something? I slowly started doing some work, responding to emails, and things like that. The next day I went back to work in person; I made it about 6 hours and then hit a wall of exhaustion and brain fog. It wasn't terrible so I chalked it up to not having done much of anything the week before. The next day, again, by hour six, I was exhausted, with a low-grade headache and queasiness seeping back in. The day after that, I could barely function. I was dizzy and queasy and exhausted. It — whatever it is — was starting again and hasn’t relented.

The medical journey so far.

My doctor has been comprehensive and empathetic to what is going on — we’ve ruled out all of the easy stuff: COVID, the flu, anemia, Lyme, and mono. I was put on antibiotics just in case it was a sinus infection. All of my initial routine labs came back normal. I am the healthiest sick person I know.

Next was an MRI of the head/brain and some more labs. A couple of the autoimmune markers returned slightly abnormal, so I want to see a rheumatologist and an ophthalmologist to rule out some autoimmune diseases. The rheumatologist ordered an ultrasound to rule out Sjogren’s (still pending) and the ophthalmologist ruled out a couple of other things.

The MRI showed some incidental findings, one of which, Chiari 1 malformation, my doctor thought could be causing some of my symptoms, so I went to a neurologist. The neurologists were also very thorough and empathetic but gave me the all-clear on their end. The MRI also found lymph nodes in the parotid gland; the ultrasound found those to be benign though they could be caused by autoimmune issues, I’ve been told.

After 6 weeks of tests, labs, and specialists, all of the doctors I’ve seen think this sounds autoimmune-ish, but nothing has been definitively diagnosed. My doctor has also thrown out the possibility that this could be myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) which would not be great — and can’t be determined for at least 6 months (6 months!). So for now, I am no closer to an answer or resuming my everyday life than I was six weeks ago. My doctor assures me she is “still hunting for clues,” though. The next stop is infectious disease in case I picked up some tagalong critter while hiking through the many, many national parks and forests that litter this beautiful country last summer.

I was talking with a friend the other day who theorized that my superpower is my ability to constantly be doing things: family stuff, volunteering, teaching, working, going to school, going to protests, writing, podcasting, etc.; she wondered if whatever is going on has now taken away that superpower and made me a mere mortal. It was a disturbing thought — one I haven’t stopped thinking about since. What if this doesn't go away? What if I can’t do all of the things I thrive doing? What will I do? How will I even…?

My wife has a different take though; she feels that whatever is going on hasn’t taken away my superpower but has become my kryptonite. I just need to figure out what that is and how to distance myself from it so that my superpowers come back. Basically, I need to figure out a work-life-illness balance.

But it’s only been six weeks, six weeks — I talked to someone the other day who has CFS, they have been dealing with that for over a decade — six weeks is a drop in the bucket compared to that, and to what I hope will be a relatively long life. Still, when you are feeling chronically ill with no real idea of what is going on or when it will end, and dealing with something that has enormously disrupted your professional and personal life, six weeks feels like an eternity.

So until I figure out what my kryptonite is, I will work to distance myself from it enough to balance this “new normal” with the responsibilities of what my life entails in order to get my superpowers back and begin to thrive again.

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Marion Leary

Marion Leary

Science geek. Passionate abt Philly, resuscitation, social media, scicomm, innovation, art, & helping others. http://marionleary.strikingly.com