I’m once more participating in A Chronic Voice’s writing prompts. This month’s words are: summarizing, crossing, moving, rebuilding, and expecting.
I’ve been thinking about writing about pacing for a while now, and these words felt useful for that process.
When the summary is too short
So to summarize what most doctors tell their patients: “You need to pace yourself.”
Often, that’s the entire statement and you’re left wondering “okay, but what does that actually MEAN, and how am I supposed to do it?”
This is such an important topic and one that too many of us gloss over because in some ways it’s stupidly obvious, but in others, it’s horribly opaque. Generally, pacing is the act of controlling your activities in such a way that you can manage them for a longer period of time, usually a prespecified one.
Pace yourself to get through the whole test(meaning skip over a particularly difficult question to go back to if you have time, or make sure that you take enough time to read each question thoroughly), or pace yourself to get through the marathon(don’t run so fast at the beginning that you’re too tired to finish the race).
When there’s a goal and a time limit, pacing is relatively self-explanatory. But pacing with a chronic condition or a long-term injury doesn’t fully make sense, does it?
How do you pace yourself in living your life?
How do you pace yourself when it comes to self-care, working(if you can), and going out and socializing?
When there isn’t an end in sight, how do you pace, and what are you pacing yourself for?
Crossing off tasks on your to-do list
Let’s work on applying pacing to life, okay?
Every day you wake up with a mental “to-do” list. The things that you need or want to do, for yourself and for others.
The goal of pacing is to be able to do more of the things, especially the things important to you and necessary for your quality of life without you becoming exhausted(physically, mentally, or emotionally) or unable to do anything more.
How do you do that?
Well, there are a few ways, but one good way to get started is to recognize what in particular triggers your symptoms, fatigues you, or otherwise makes it difficult for you to carry on.
In my case, for example, uncertainty and stress, in general, tend to trigger my Functional Neurological Disorder(FND) symptoms. I also have some very specific concepts/objects(like ladders and ambulances) that trigger my symptoms due to mental associations(both are strongly associated with my father’s death).
The lower my overall stress level, and the less stress in my life, the better able I am to handle my specific triggers.
Stress also includes exercise, hunger, fatigue, extreme cold or heat, crowded spaces, or feeling alone. It’s all about balance for me and trying to stay within certain parameters to minimize my FND symptoms.
You can divide the tasks you need to do into three different categories: recuperative/self-care(things that end up helping you feel better), mental tasks(like making doctor’s appointments, fighting insurance, figuring out finances, or writing), and physical tasks(like washing dishes, exercising, folding laundry, or participating in a sport).
Depending on the severity of your condition and where you are in your healing process, each of these will look very different.
Early on, or with something especially severe, your recuperative/self-care activities may be lying in bed in the dark or taking a nap, but there will be points where your recuperative activities may be things like watching TV or reading or going for a walk in the woods.
The point is that your recuperative activities are what YOU need to feel better and be able to handle more, not what somebody else suggests you do(the exception being medical professionals who you know, like, and trust).
Depending on what you are managing, your mental and physical activities will also adjust over time, as will what you expect of yourself.
Early on(or during a flare or relapse) just getting out of bed may be a huge struggle, or you may struggle to maintain focus on any activity.
Later, those same actions may not require much(if any) thought or effort on your part, and you’ll have different challenges to manage.
The point of pacing is to recognize where you are RIGHT NOW and create a plan to rebuild at a pace you can handle and won’t worsen your situation.
Moving through your activities at the right pace
With pacing, your goal is to alternate through these three types of activities throughout the day, always stopping BEFORE you get fatigued or symptomatic.
For example, my recuperative activities include meditating, doing PT exercises, taking my medication on time, reading a book, watching TV, playing a video game, or walking in nature(when it’s warm enough).
If I’m especially fatigued, a nap may also be in order.
My primary mental activity is to work on Thriving While Disabled, but I also may need to make appointments for myself or Al, make plans with friends or family, or make insurance-related decisions.
My main physical activities are exercising at the gym, going for walks, and handling household chores(including preparing dinner when I remember to).
Generally, I could do mental activities for much of the day, but staying still for long periods isn’t good for anybody’s health, so I make a point of setting timers and doing other things in between rounds of mental activity.
So I’ll get up in the morning and meditate(sometimes it turns into a nap if I’m tired, but that’s okay), have breakfast, and take my medications.
I spend much of the day(if I don’t have outside commitments) working for 50-minute stretches with 10-minute “breaks” in between where I do household chores, PT exercises, or try to tidy up around the apartment.
If my focus or mental state slips, I usually shift into other regenerative activities to help pull myself out of the funk before it gets bad, and then after Al gets home from work, we go to the gym together several days a week.
I go to bed relatively early(climb into bed at 10 to read in hopes of falling asleep around 11 or so) in an attempt to reestablish a good sleep routine, because that’s one of the things that got really messed up when I had covid in September.
When I’m having bad symptom days, I can’t do as much, so I try to get a bead on what I can do.
I may only work on things for shorter periods of time(maybe I can only work for half an hour at a time instead of an hour), or I try to simplify the routine(I may not go to the gym, but try to take a walk instead, or I may decrease the intensity or length of time I exercise).
If it’s a really bad day symptom-wise, I may be lucky if I get anything beyond my recuperative activities done.
My goal through all of this is to be okay with whatever I can do(so no beating myself up for not getting everything done), and get myself back to my standard expectations as quickly and safely as possible.
Rebuilding after the flare, shift, or diagnosis
For some disabled folks, there’s a single setback and then their path to healing is relatively straightforward.
I’m definitely not one of those people.
My condition, FND, is extremely stress-responsive and so every new trauma, crisis, or stress point in my life can severely increase my symptoms or lead to me developing new, sometimes completely different symptoms.
I have a lot of practice with being held back and then trying to recover AGAIN. It does feel very frustrating.
Properly done, pacing helps reduce that stress, gives you a clearer path towards recovery, and reduces the likelihood and frequency of being stuck in a boom and bust cycle.
You know, where you feel good one day so you do ALL THE THINGS(boom), then spend the next (insert time period here) being unable to do anything(bust)?
Breaking that habit helps you create a more predictable and manageable life.
I’m all for it, but pacing can be really hard to do, especially because there are so many fun things out there that are made without disability in mind.
You can also use pacing as a tool to help you slowly rebuild your stamina so you have a better sense of what you can and can’t do safely, and help you reduce how often you go boom-then-bust by planning ahead for fatiguing events/activities with extra recuperation time both before and after the event or activity.
For example, I’ve gone to weddings, conferences, holiday celebrations, and other activities knowing that they were more than I’d be able to handle on an ongoing basis. However, I could rest up the day(or week) before and have low expectations for myself for a few days afterward and be able to thoroughly participate in that day or those days.
It’s not ideal, but by pacing most of the time, you’ll be able to recover from that cycle more quickly, and have it happen less often.
After getting Covid in September, I found myself not only having more FND symptoms than usual, but also being a lot more emotionally volatile than usual.
I’d jump from happy to depressed in moments, and was emotionally hypersensitive, especially to other people’s emotions.
For me at that time, pacing wasn’t just about balancing mental, physical, and recuperative tasks, but also about controlling the emotions I was exposed to and creating emotional escapes for myself.
I found that even my tastes in TV shows to watch shifted because of the intensity of my emotional sensitivity.
I think most of that has subsided now, but I’m still hesitant to risk exposure to the things that were most disruptive.
When it came to physically managing my increase in FND symptoms, pacing was exactly what I needed.
At the gym, I reduced how long I was on the exercise bike at once, and was able to get close to the same amount of time on the bike once I divided it into two periods of riding instead of one long one.
My PT is helping me plan slowly increasing the length of the first period to retrain my brain to be okay with doing one long set again, by shifting things five minutes at a time.
I became stricter on stopping my work when the timer went off, and doubled down on improving my sleep hygiene.
I may not quite be where I was in August, but I’m close, and it’s primarily thanks to proper pacing and having a good support system.
Expecting changes and managing your expectations
Is pacing going to make you able to do everything and anything?
Of course not.
But it definitely will help you be able to live a better quality life than you would if you paced incorrectly or didn’t bother trying to pace at all.
By investing some mental effort into planning your days and activities, you can get more done in the same amount of time with fewer symptoms and flares.
By breaking up your activities into pieces your body and brain can handle, you prevent the fatigue or other triggers that have caused your symptom flares in the past.
You also can develop a better sense of what your limits are and what you can handle, and you can use pacing to slowly ramp up your activities so you have a more consistent idea of just what you can safely handle and what is too much of a push for you now.
You’re more likely to be able to recognize and respect your actual limits, rather than constantly cycling between overdoing it and recovering from overdoing it.
That combination is never going to lead to true recovery or a good sense of what you can and can’t handle.
If instead you plan ahead and pace yourself, you can slowly and carefully discover your limits, have much smaller flares and much simpler corrections and spend most of your days feeling better than you otherwise would.
You absolutely can pace when dealing with mental health issues too.
As I mentioned, my bout with Covid did a lot more damage to my mental health than my physical. I could feel my anxiety ratcheting up and my tolerance for certain types of stress dropping dramatically.
I took time to recognize what was happening and to notice my new mental health triggers. I discussed it with my psychiatrist and adjusted my medications slightly.
I also shifted the type of meditation I was doing, from exercises on controlling my body to more exercises focused on my mindset and processing my emotions. I took time to examine my feelings, what triggered them, and how I could manage them. I got support in this from my therapist as well.
Just like in managing my physical health, I recognized my triggers and avoided them until I could recuperate and explore other management methods.
In the meantime, I continued to alternate through recuperative, mental, and physical activities, but with a recognition that my thought process and emotions were a bit unreliable, so I was prepared to shift things as needed, and potentially place more emphasis on my recuperative activities than I normally would.
Anxiety or depression can easily sneak up on you when dealing with the unknown, and the world of chronic illness is full of unknowns and uncertainties.
Pacing is such a vital tool for health and well-being
All too often, the term “pacing” gets thrown around, but too rarely is the precise meaning discussed, or HOW to pace considered.
You deserve to live the best life you can, and that is reached through carefully analyzing your needs, limitations, and abilities, and carefully pacing yourself so you can have more good days than bad, and have consistent and realistic expectations for yourself.
As a person with any kind of chronic condition, you are dealing with more uncertainty and stress than most other people, and that uncertainty and stress is primarily rooted in things abled people take for granted. This isn’t an easy path to walk.
Pacing is too frequently oversimplified and minimally explained by many professionals, and it’s too often hard to get useful details when you need them. By dividing what you do into recuperative, mental, and physical, you can help yourself better balance the tasks you need to do, no matter what they are.
As you recognize your own triggers, understanding how and why they work will help you to better pace yourself by changing activities before you are triggered or immediately afterward, rather than “pushing through it” and making yourself worse.
You can also use pacing to recover from each flare or reinjury you experience, recalibrating what’s “too much” now, and giving yourself small, manageable pushes to help yourself recover at a reasonable rate, instead of pushing yourself back into a boom-and-bust cycle that is so easy to fall into.
You can rebuild after any setback, whether it’s physical, emotional, or mental, as long as you recognize that you experienced a setback and are recovering from it.
Pacing isn’t a one-time thing, it’s a process that repeats every time there is a major change in your life. The better you learn to pace yourself, and the recovery rate of your body and mind, the greater chance you have of living your best possible life!
It’s been a while! Happy New Year! I loved your guide to pacing and thought you hit every nail on the head, so to speak. I’d say pacing is the number one piece of advice that I give to newly diagnosed patients who ask me ‘how I do it’. (We both know we’re not doing it by choice, but anyhoo…)
2022 was rough on me too and I feel bad that I’ve fallen behind on keeping up with my friends. I’m glad I was able to catch up with you a bit through this post! Wishing you a better 2023 and here’s to both of us for continuing on this marathon!
Happy New Year to you too Carrie – hopefully this year will be better than last was for you!!
Pacing is so very vital for our health, and yet doctors seem terrible at explaining it – so I thought I’d take a stab at it myself.
Nope, this is one of those clubs that nobody actively wants to join, it’s all about making the best of what you’ve got! And you’ve done a lot of work towards making the best of it all!
Absolutely thrilled to be on this marathon with you and I understand why you’ve been out of touch – I’ve been struggling to maintain some connections myself, and had things easier than you have from the sound of things! Always happy to have you grace my site with your presence!