Pacing

In this post, I want to talk about pacing. It is perhaps the most important tool for ME/CFS management. Yet, despite its outward simplicity, it can be fiendishly difficult to pull off.

Over the last 11 years, I have had mixed success with pacing. I have improved at it a lot, but there are still things I could do better. I’m also starting to understand why it is so difficult. So, in this point I’ll go over what pacing is, why it is so difficult, and my thoughts on how to address these difficulties.

Quick Review of ME/CFS and Pacing

ME/CFS is a complex, poorly understood, and diverse autoimmune disease. It has gained more attention since the Coronavirus pandemic as more severe cases of long covid present almost identically to ME/CFS. Many with long covid are diagnosed with both.

The typical ME/CFS case looks as follows: one contracts some infectious disease (Coronavirus, Epstein-Barr virus, etc.) and then never fully recovers. Persistent symptoms such as brain fog, and increased fatigue set in and usually there is a precipitous decline to a state of severe disability wherein one has much less energy. Often one develops other autoimmune diseases such as POTS, Crohn’s disease, fibromyalgia, etc.

There is a wide-range of disability that one can incur with ME/CFS. However, a “mild” case of ME/CFS is defined as a 50% decrease in activity compared to pre-illness level. I can’t think of another condition where “mild” means a permanent 50% reduction in activity. More severe cases can involve being full bed-bound, or being unable to think for more than 5 minutes at a time without crashing. Most with ME/CFS experience multiple different levels of chronic illness over the years. In my twelve years with the illness, I have been fully bed-bound without enough energy to tolerate light/sound. I’d rest throughout the day enough to save energy eat 2-3 times. I’ve also been about 25-30% the energy of a normal person—essentially living regular life at a quarter time. One thing you learn is that being chronically ill vs. healthy is not a binary. There are vastly different lives depending on the severity of your illness.

A couple notable people in my media circles with ME/CFS include Dianna Cowern, better known as “Physics Girl” on YouTube, and Kevin Nanney, better known as PPMD in the competitive super smash brothers melee scene.

“Fatigue” in ME/CFS

While we in the ME/CFS community often use terms like “severe fatigue” to describe our main disability, this does not give a full picture of what happens when those with ME/CFS expend energy beyond their modest limits. The proper term is “Post-exertional malaise” or “PEM” for short. While PEM does involve a kind of fatigue similar to that which healthy people experience, it is also comes with an across the board worsening of autoimmune symptoms. This can vary from person to person, so I’ll describe what is typical for me.

For me, I tend to get flu-like symptoms of fatigue, light febrile feeling, weakness, as well as brain fog. As I exert myself, I notice I get increasingly more out of it. I tend to lose physical awareness. This generally means a light dizziness, and my ability to perceive the physical space in three dimensions decreases. As the PEM gets worse, generally I start to get headaches, then a general sensation of desperation, and I continue to get more out of it.

These symptoms have had weird tertiary effects. For one, in my history of taking exams I am almost always the first one to turn them in. This is not because I’m trying to flex on my fellow classmates. By the time I turn in the exam, I am already so out of it that there would be no use in me checking questions. I remember a three-hour final exam for a class I took wherein I was trying to check answers but by the second hour mark I could hardly read. The words looked more or less just like loose symbols on the page. I just shrugged and turned it in. There was also a time I was heading back from MIT after being out a little too long, and I walked straight into the turnstile and fell over. I didn’t register that it was that close even while looking straight at it…

While these symptoms typically slowly creep up during the activity, oftentimes if you overdo it you don’t get the worst of the PEM until much later. If I overexert too much in a day, I would expect to feel some PEM that day, but the brunt of it I wouldn’t feel until about 48 hours later. When I get into this state, I often feel pretty wired on the second day as well. Similarly, long term overexertion can lead to crashes that last days, weeks, or even months to years. It is possible that a large part of my last sharp worsening in symptoms was due to consistent overexertion in 2021.

Pacing is simply the practice of reducing and breaking up activities to stay within one’s energy limits. Let’s go over the basic terms right now.

ME/CFS Terms:

ME/CFS: Myalgic Encephalomyelitis/Chronic fatigue syndrome.
Energy Envelope: The energy capacity someone with ME/CFS has. Often referred to as a daily capacity.
Post-Exertional Malaise: Fatigue and worsening of symptoms in response to any exertion: mental, physical, emotional, etc.
Pacing: The practice of reducing and breaking up activity in ME/CFS patients to stay within their energy envelope.
Crash: Severe PEM usually following overexertion that incurs worse symptoms and a reduced energy envelope for some time.

If one paces well, they should expect to experience less PEM and can even have their energy envelope increase over time. Some have even increased their energy capacity to pre-illness levels—although there has not been a causal link established here. More devastatingly, going over energy limits can often lead to the opposite: a sharp decrease in energy envelope. It is critical to pace well.

Yet most people with ME/CFS, including me, find pacing very, very difficult and take quite some time to adjust to it. How could something that is so important and so simple be so difficult? Well, I’ll spend the next section describing exactly the common difficulties one can face with pacing.

The difficulty with pacing

I feel like there are three central sources for pacing difficulty: inexperience, unique physical dynamic of PEM, and the never enough problem. Let’s start with inexperience.

The inexperience comes not only from one’s self, but from your social circles and even medical professionals. Commonly, those with ME/CFS are recommended to do graded exercise therapy (GET) treatments in which one progressively does harder exercises. The incorrect theory is that the fatigue is just a result of deconditioning. This consistently leads to worsening of symptoms and shrinking of the energy envelope.

Similarly, inexperience in social circles can, and often do, make pacing harder. ME/CFS is an invisible illness—it leaves no visual signs of illness for others. People do not treat you like you are sick. While this comes with advantages and disadvantages, with regard to pacing, it is mostly the latter. Oftentimes friends and family not understanding the level of disability you have, will push you to do more than is healthy for you. In more unfortunate circumstances, they might not even believe you have an illness at all. This can lead to accusations of laziness and very explicit pressures to overexert yourself.

Lastly, many difficulties come from a lack of personal experience. Firstly, it is so difficult to accept your new severely decreased energy envelope. It’s often cartoonishly low. It takes a lot of experience just to understand what the energy envelope means. Exertion includes physical activity, mental activity, emotional stress, etc. Each of these can take a different amount of energy depending on the person. Just gaining the experience to learn which activities put you over the edge and which do not takes time. There are also myriad practical lessons learned along the way. Like many others, I find having timers/alarms to prompt me to take a break very useful. But even when adopting these common tactics, I found that I would rush activities when I had a timer on in response to the explicit limit. This way, I was doing worse quality work and expending more energy… So realizing this and adjusting to not rush in response also took time!

The Unique Dynamic of PEM

Much of the difficulty with pacing comes from the way in which PEM differs from standard fatigue. I’ve organized these differences into four sections.

Exponential Curve: When going over one’s energy envelope, you’ll incur PEM and perhaps a major crash. However, there are degrees of going over the envelope, and it scales exponentially. Say I can handle a one-hour activity just fine but by 1.5 hours I know I will feel significant consequence. Doing that activity for 2 hours straight will probably take me out for 1.5 - 2 days. For 3 hours I would expect 4-5 days and at 4 hours I wouldn’t be surprised at two weeks of heavily reduced ability. There are big risks to overdoing it.

Tired but Wired: Often, when one overdoes it they enter a “tired but wired” state. I have felt this many times. It’s like having a background body anxiety where you can’t sit still. This makes it hard to rest well and the body anxiety and discomfort often push you to do things to distract from the discomfort.

Delayed Punishment: For higher amounts of exertion, very often the severe PEM/crash comes after the exertion. Typically, 24-48 hours later. Taking the three-hour activity example. If I did that three-hour activity, I would expect to feel somewhat out of it and more wired for the rest of that day and the following day. That following day I’d often feel like I could do more than my usual envelope would allow. However, some point in the first half of the second day after I would feel a severe crash— much, much worse state. Then I’d be in that crash state for the following 4-5 days.

Combining these three effects, it is extraordinarily easy to overexert yourself and have a snowballing effect. Say you don’t know your limits for an activity, or there are some pressures to overdo it. You start overdoing it a little and one of the first effects is brain fog which makes it harder to make wise decisions. Then the second effect is that you start to feel wired, and this sensation that pushes you to do more. Lastly, you don’t get the feedback that you way overdid it until two entire days after the event so in this state you might continue to overexert yourself further. You end up way overdoing it and incurring a large crash. Perhaps after you feel behind and on responsibilities and overdo it before resting enough, and you overdo it again in this downward spiral. This becomes a PEM-debt spiral that whittles away your baseline energy envelope.

Envelope Anxiety: All the prior effects lead to something that I call “envelope anxiety.” It is the constant state of mild anxiety about overdoing it and worsening your own illness. It does not help that one’s energy envelope can also go up or down without warning. This inspires a constant vigilance about your own energy envelope. Often you won’t even be aware of how well you are doing. When you are overdoing it you are less equipped to pace better—there is a constant vague threat. And that threat makes it hard to rest well and recover.

Never Enough

In reflecting, I think the single hardest impediment to pacing is this effect. Frankly, most people with ME/CFS will experience times when they have to go without basic human needs. Most notably, that of socialization. You will have an energy envelope so small, that even a basic amount of stimulation, socialization, or work, will mean that you have to overdo it to the point of crashing—which makes your symptoms worse. This puts you in an impossible situation. You have to habitually decide which basic needs to go without.

In 2022, I was very sick following a period of overexertion. I also spent the year trying a new treatment which took a lot out of me. During that year, I was almost entirely bed bound, and I would see friends only a handful of times—less than 45 minutes at the time. I remember I was so tired that I showered about once every two weeks. I was sick, gross, and terribly isolated. Once I tried to do a light math problem for just 15 minutes and I had a crash lasting 4 days. I hardly ever left my room, let alone the house. During this time, and really most of 2022-2023, to meet any need would mean compromising my health. In practice, I would just go without the needs until I could not anymore and then indulge in them a bit… and crash.

Even those with mild ME/CFS (50% energy reduction) can feel this. The great reduction in activity can be hard to adjust to, but expectations of life can be lowered. At moderate/mild ME/CFS (I would qualify as moderate today) one can have enough stimulation, socialization, and work to be happy. It is possible. Though I do think at the more severe levels of ME/CFS there is a threshold in which one can’t meet all fundamental needs while accommodating the illness.

The solutions.

There is not a silver bullet here, but I do think there are a few pieces of advice that could be useful to someone with ME/CFS.

Be forward, educate, and ask for a little too much rather than a little too little. I appreciate both the want for privacy, and I’ve heard the cry “It is not my job to educate you” as one trying to relieve the burdened of the further burden of explanation. That being said, if I do not explain my condition to others, they will never learn about it at all. You do not have to bare every detail of your journey and physiology, but being clear that you have an invisible illness and spending time talking with friends and family about what that means is a great help. Tell them what your limits are. Tell them your withdrawing from social situations has nothing to do with them. Tell them you just need a little help to manage, but it is not too much. In the first ten years of my illness, I almost always asked for too little and would often overdo it and never under-do it. I am getting better at asking for the right amount or a little too much, and I’m finding it is better for me and those around me. Make it a consistent practice to speak up for yourself.

Cut out a lot of activity. Prioritize. Unfortunately, however your energy level looks with ME/CFS, you will have to give up lots of activity. Cut out anything not adding value to your you or those you care about. Reduce frequency and amount of exertion in activities you don’t give up. Before I was sick, I would go rock climbing multiple times a week and would do exclusively lead and top rope: going up big walls (and sometimes the ceiling) for long climbs with a rope. After becoming sick I do exclusively bouldering: short climbs with each attempt no longer than 30 seconds. I typically do 10 attempts during an hour session and do an hour session about two times a year. It is very different… though it is better than nothing. Similarly, although I am very extroverted by nature, I am trying to take it easier during social situations. For most with ME/CFS, and I’m no exception, social isolation is the hardest part. Take it easy in social settings. Enjoy simple company. When using more energy/being more engaged make sure to do so thoughtfully.

Meditate: A lot of the issues with ME/CFS is autonomic dysregulation. Meditation can help a lot. Start slow and be patient with yourself. I found it very difficult to start with meditation because it means sitting with the background discomfort of the illness with no distractions. However, with time you can accept this and the practice will lead to that background discomfort having less effect on you.

Reshape, reorganize, and reimagine how those activities look as well. Don’t let awkwardness thwart proper accommodation. In any situation, finding ways to sit or lie down with my legs up helps the most. This can sometimes be awkward, but it is usually not too difficult. Having things be cooler also helps a lot. Just recently, during social gatherings I have been taking time out more often or even just resting while around other people but being fully disengaged. It might be a little odd… but it helps. All of this is just the tip of the iceberg for what can help.

Timers, timers, timers. It also may be awkward to have little alarms going off reminding you of passing time, but I find this extraordinarily useful. Many others do too. Frequently set timers to remind you both of when to rest and simply of time passing by. A common start to a snowball of overdoing it would be hanging out with friends, getting a little more relaxed and out of it and simply not noticing the time go by. Time flying by is generally good but can lead to using up much more energy than you expected. For lots of work tasks I start a timer with a 25-minute alarm. If I’m feeling well, or I haven’t done too much during that day, I usually add 15 minutes after that. Then I reevaluate and add between 5-15 again but by the third time I know it is more wise to wrap up and rest.

Make sure your digital tools have your best interest in mind. Truthfully, this is advice anyone who uses a computer should take. That includes you, blog reader. Our digital tools are largely built on maximizing engagement time. That is, be as addictive as possible. Use tools like cold turkey blocker, screen zen, or even custom (often vibe-coded as I am) tools to shape your digital world to push you to do what is best for you.

Commit and experiment with pacing. Adopt the disposition of a detached scientist with respect to your health and pacing. You won’t know what activities will be within your energy envelope at the outset of your illness. Your energy envelope can also change without you knowing it. All of this leads to envelope anxiety that can further worsen your symptoms. The best thing you can do is to accept that you will not pace perfectly. You will make mistakes, and that that is ok. Try things out and learn from what goes well and what doesn’t. Don’t do obviously ridiculous things “in the name of science” like taking a 16-hour work day when you typically can work for at most 2.5 hours a day. Though do try things differently and if you have more PEM you’ll learn from that. Approach pacing and health with care and curiously but not attachment. Not knowing is part of the process. Embrace it.

So what am I doing next?

This post is mostly a reflection to help me evaluate my own pacing. There are a few questions I still have: How is socializing affecting my pacing? Am I resting enough? Can I adjust how I do things to better my life without using too much energy? What are parts of my lifestyle I can experiment with that might lead to better pacing?

I felt like I did not pace perfectly well on the two months working on the YouTube video (6/1 - 8/4). I didn’t do a terrible job. There were no terrible crashes, and there was only one week when I had a significantly reduced energy envelope (week of 6/7). It was also a lot of new activities, so it meant learning a lot. However, I feel like I was consistently in that medium PEM range which I should not be in. What went wrong? What could have gone better?

What went wrong? What could have gone better?

For one, I felt a bit rushed with this video as it was on a timely subject. The state of AI in mathematics changed a mere 3 days after the video was posted. That being said, it was not a big enough change to flip the video on its head so if it came out two weeks later it would have been fine. Due to this pressure, I worked longer days and more on weekends than I otherwise would have. I, naively, originally thought I would have this video done in two weeks. Then, with scope (and more-so quality) creep, it ended up being two months.

Another problem with pacing was simply the physical act of doing these things. That can be fixed by a few things. Many adjustments are covered in my last blog post. However, I think I could have compromised by taking longer breaks during recording. I could have used a different laptop for recording. I had this thought that I needed to record every section on the same day as my hair and appearance would change slightly between takes. Although, I think this is not a big enough change to warrant stretching out recording sessions. I’ll try wearing the same shirt and recording on different days within the same section.

To prevent overdoing it, I think backstopping or putting on default bans on work could help. That is, if I want to work after 7pm, or during a weekend, I have to do a typing test to unlock it. I have to consciously choose to do this. Maybe this will work, maybe it won’t. Another possibility is setting up my personal data tracker to prompt me when I’m doing more than usual. Perhaps activity against reference. I think I’ll try to do that at some point too, but it takes some setting up.

An imagined world where the YouTube video work went better:

Have blocks during weekends/later at night so worked less per day
Took a one week, or even four day, break in the middle after a month of consistent focused work
Took longer breaks during recording and set up to record throughout the day instead of just at night.
Have a little more socialization than I did in practice when working on video production - especially during the weekends/week break.

In all, these adjustments would probably have lead to about the same video coming out 10 days later ago with no update video. Also, likely leave me in better shape. Again, I think I did a pretty good job pacing during the video process but much can be improved.

General experiments/adjustments I am going to try going forward.

All activities behind typing test.
YouTube bans: try out having YouTube entirely banned 9-5
Much more time resting outside my room
Trying to orient my work around more social things.
Trying out a vibe-coded pacing assistant.
Reaching out to specific people to socialize in a low energy way.
Making a browser extension that more quickly allows you to create focus lists through cold turkey
Only playing video games with friends
Some light push to getting out of the house more in short ways
Chatting lightly with others more
Take rest time around others more often

Ending random personal thoughts

I have improved since my last health update… I think. It can be hard to tell. I think I am going to stick to my general work schedule/rate. Perhaps a little more time in. The theme of this next few months is focus. When I spend time, or really energy, it should be worth the energy and be towards something I want to build on.