Pacing is the essential practice of conserving energy to prevent future symptoms. Lately I’ve been feeling more energetic (my new medication – Mestinon – is working!!) and so I have to re-evaluate my pacing plan. What new activities can I do? How long can I do them for? And how many activities in a day? The answer to each of these questions is dynamic, depending on the weather, the quality of sleep I got the past few days, the activities I’ve done recently, and some mysterious variables I have yet to identify.

When I first got long covid I woke up every morning feeling groggy. So when my physical therapist asked me each session if the exercises I’d done the previous session had caused Post Exertional Malaise (PEM – the hallmark symptom of ME/CFS) I said no. It wasn’t until I reached a point where I wasn’t treking to multiple appointments a week that I learned it was possible to wake up and feel just tired, not like I’d been dragged to the surface from a deep (and yet somehow not restful) sleep. I can now identify that I only get groggy when I don’t pace my activities well enough.

So I was surprised to find on Monday of this week that I woke up feeling terrible. In my groggy state I have to attempt to decipher what caused these increased symptoms, so I don’t accidentally repeat the activity. The chronic illnesses I have are cruel, they don’t communicate in the moment “hey, this is tiring.” Instead I get an alert “you overdid it!” anywhere from a few hours later to the next morning. Dysautonomia has a symptom called flushing, for me that shows up as what I have lovingly named “the red hot ear of overexertion.” It usually shows up in the evening while I’m resting on the couch, and it’s my first signal that I failed at pacing sometime during that day. Sometimes that’s the only consequence, blood is rushing to my head in a strange way, I apologize to my body, and then we continue on our way. Other times (like this week) that’s the first of several consequences. The rest of the symptoms wait until the next day to arrive.

I did have one additional clue on Sunday that I’d overdone it. When I went for a walk with a friend my Fitbit recorded the first 15 minutes of the walk as a walk, which is already a clue that this activity was more exertion than I have on a typical day. While I walk Brownie the dog twice a day, it involves so much stopping to sniff (and lately pausing to determine if Halloween decorations are safe to walk past) that my Fitbit doesn’t record it as a walk. But wait, there’s more! On Sunday my Fitbit counted the next 16 minutes of our walk as “Sport” – my heart rate got high enough that my watch was convinced I was doing some sort of exercise. This was perplexing since we continued walking, at a fairly slow pace, on flat ground, and then sat down on a bench at the end. On Sunday I assumed that my heart rate was high because I’d been upright for longer than I usually am (dog walks are 15-20 minutes) and that aggravated my POTS.

When I woke up not feeling well on Monday I attributed it to going for a long walk. I decided that I would rest the whole day, which was easy to do because Brownie goes to daycare on Mondays. So I would skip walking, physical therapy exercises, and guitar practice (sitting upright, reaching my arm, and focusing on my phone are all more exertion than lying on the couch). Then I promised myself I would go back to what I knew was safe – my physical therapy exercises that I do lying down, and seated rowing exercises – before attempting a long walk again. 

On Tuesday I woke up feeling groggy again. This felt wrong. I’d gone on a walk by myself the previous week without the dog and that had included climbing a significant hill. My parents hypothesized that the missing variable was the pollen count. I do have fall allergies, and I took that walk without a mask, but I’ve had allergies my whole life and allergy haze feels different than PEM groggy. Wednesday was the same, and it was after I thought about the impact my therapy session had the previous week that everything finally clicked. Exertion in ME/CFS is physical, mental, and emotional exertion. The previous week I’d been drained after therapy, despite the fact that I’d sat still for the whole session, because emotional exertion counts. During the second half of that walk on Sunday? I was ranting about a frustrating situation. The combination of walking and talking and experiencing heightened emotions was what sent my body into a three day mini-crash. I finally figured it out!

It’s important to piece through the puzzle for a few reasons:

• It’s really disheartening to be doing better and then inexplicably feel worse. I want to be able to do things and it sucks not knowing why I suddenly can’t.
• If I know what caused the problem I can avoid doing it again.
• Knowing what my body can’t do now allows me to plan for future activities. If I’m going to be having an emotional conversation I will make sure to do so seated and plan time to rest before and after. If I’m going for a walk I’ll set a timer to check my heart rate every 10 minutes and adjust as needed.

The puzzle of the Sunday walk is just one of the many puzzles I’m constantly trying to solve. Many of them are pacing – how far can I drive without consequences? Am I ready to restart cardio physical therapy? How much buffer time do I need to schedule in between work calls? I also have other puzzles, such as what cognitive activities can I handle? I’ve been successfully learning the guitar (for 15 weeks!) so I tried to add learning Spanish back into my routine. Immediate headache. Some days word puzzles are okay, other days not so much. Match 3 phone games go fine, timed levels on plants vs. zombies resulted in my body neglecting to breathe. 

Having a chronic illness requires constant calculating of what my body can and cannot handle. Having multiple chronic illnesses makes the problem that much harder to decipher. Exercising is one of the most effective lifestyle changes to make for POTS, exercising is the most disabling thing for ME/CFS. Thankfully brain fog isn’t on my list of symptoms so I have a fighting chance of solving these puzzles and finding a safe path forward.