Pacing tips

I was recently talking to a friend/fellow Potsie about pacing and it inspired me to write about the nuanced criteria that I use nowadays. Pacing is managing activities in a way that prevents flare in symptoms or post-exertional malaise. It can be a challenging strategy and it has taken me a lot of trial and error to “nail it”.

To read more about the basics, the “why”, and other tips about pacing, check out my post on Working Within Your Energy Envelope.

Below I will explain how I handle the two fatiguing sensations I get- fatigue with “gassed muscles” and fatigue with achiness. This may or may not resonate with you as everyone’s POTS and ME is different. Therefore, take this for what it is worth.

How I handle fatigue with gassed muscles

My POTS or ME, whichever one it is, manifests in causing a “gassed muscle” feeling. It feels like very little oxygen is getting to my tissues or like I have perpetually run a 400m race. As I have improved overall, this symptom has improved. Mestinon and massage therapy have also helped. Side note- I am planning to wean off of Mestinon soon per my doctor’s recommendation and I feel mostly optimistic about it, but part of me is worried that the gassed muscle feeling will get worse. But, I digress…

Here is a sample of what a gassed muscle day is like: Wake up. Walk to the bathroom. Get “booty lock” from said excursion. Whisper “crap” to myself. Attempt yoga. Struggle through about 20 minutes until my muscles fail. Spend the rest of the time in Child’s Pose. Walk my son to school. Did the school get farther away overnight? You get the point. Everything is 10x harder than usual. At some point in the evening, I wave the white flag and collapse in a heap.

I typically push through gassed muscle days. There comes a point where my muscles will fail, and then I back off that particular activity. However, pushing through gassed muscle days does not cause me to crash. Don’t get me wrong, it feels terrible in the immediate, but I typically do not have long-term set backs or crashes.

How I handle fatigue with achiness

I do not have fibromyalgia or joint pain. When I start to crash, though, I get this sensation of a vague achiness. It feels like the aches that come with a fever. When I used to take my temperature, I noticed that I would typically have a low-grade fever accompany this feeling.

This sensation is an SOS saying “STOP WHAT YOU ARE DOING IMMEDIATELY AND REST!”. If I try to push through this feeling, I will pay for it and get worse. Earlier in my illness journey, this could mean crashing for weeks. Pinpointing this cue was monumental to my recovery.

Resting

Rest is an extremely difficult thing to balance. Too much or too little rest can have the same negative consequences on my body. I want to reiterate that my experiences may not translate, particularly if you have severe ME.

I find that for my brand of POTS and ME, I should not rest too much. Particularly sitting with my legs bent or tucked up close to my body for too long. I will get pre-syncopal when I stand and feel “stagnant” for a while afterwards. However, resting the proper amount is key. I cannot go through a whole day without some rest. If I change positions regularly (ex. sitting, lying, varied surfaces etc.), I feel better after the period of rest.

When resting, I also consider mental activity. Sometimes, while I rest, I can do something like write this blog, pay bills, plan meals for the week etc. Other times, I need to mentally check out. During those times, I will take a short nap or watch mindless television. If I have fatigue with achiness, I always mentally check out to spare myself a crash.

Sharking

Bear with me, here. This may be total BS, but I heard that if sharks stop swimming, they will die because of how the water moves through their gills to get oxygen. With POTS and ME, there are times where you know that no matter what, when you stop, you are going to be done for the day. When I push through that, I call it “sharking”. I shark sparingly. I do it when I need to finish a task, like cooking dinner. I do not recommend sharking when you are first getting the hang of pacing as you are more likely to cross that threshold to a crash. However, further down the line, you may find that you are able to shark through the occasional task.

What pacing tips have you learned that work for you?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.