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Note: Paula Smith is a CFS patient from California who works as a website developer. She has been a part of the CFIDS & Fibromyalgia Self-Help program since 2014.
After a year in the self-help program, I felt considerably improved, back to 60% of my former level of health and functionality from 20%. Four months later, I was dumbfounded by an extended period of Post Exertional Malaise. How had this happened when I thought I was doing everything “right”?
Luckily, the program’s class on pacing was starting at this point, and I was able to join. Through the course, I was able to do two things I previously thought impossible: understand my Energy Envelope and, most importantly, begin to find a way to live within my Envelope.
Questions and Insights
Since I was not able to see any correlation between what I did and my relapse, I asked the instructor for help. He asked me four questions about how I had been managing my health:
- What was different about the few days or a week before your relapse started?
- What do you think your energy envelopes are at this point?
- What correlation have you found between morning resting heart rate and symptoms?
- How many rests do you take each day and of what length?
With the questions in mind, I reviewed my logging data, journal entries and other records from the previous six months. Consulting my notes using the filter of these questions, I was floored. Contrary to my belief that I was pacing myself, I saw that I had gradually fallen back into some old habits, my symptoms picking up at a similar rate.
Rather than pacing myself diligently, what I had been doing was:
- Scheduling several “Big Events” per week, without scheduling time to rest before or afterward. I planned future commitments without taking into account what I had done in the past week.
- I was pushing at my work to sustain focus for several hours at a time. I was not scheduling rest breaks to prevent symptoms and often skimping on recovery rest breaks.
- What I called “resting” was actually multitasking: listening to the radio and playing iPhone games, not lying down with eyes closed as the program suggests.
In other words, I had slipped back into my pre-pacing mindset of taking on anything that I wanted to do, even if I already had a full plate. Also, I was stimulating myself too much in the evening and running a high sleep deficit. When I slept, it was unrefreshing. No wonder I had relapsed into Post Exertional Malaise!
Experimenting with Scheduled Rests
Having realized that I wasn't resting enough and my rests weren’t restorative, I decided to experiment with taking frequent rest breaks during my working hours, working at my computer for 45 minutes, then lying down on my bed for 15 minutes. I also gave myself an earlier bedtime and made evening rules to help overcome insomnia.
The first week of my experiment was quite instructive: I took 15-minute rests after each work period of 45 minutes. I was pleased and surprised at the results.
I was able to work longer billable hours, even when unable to leave the house. I had no brain fog or headache by the end of the day. I had no additional trouble sleeping, other than my usual insomnia. On the last day of the week, I had zero symptoms, awoke early, feeling bright and energetic. This was a HUGE change from the previous few months.
Resting my mind and body, even when it feels like I don’t need to, really makes a big difference in my overall experience. I am more productive because I know I only have 45 minutes until the next break. My mind is fresher throughout the day, and I have less anxiety.
Using this strategy of integrating planned rests into my work day, I was able to work my maximum billable hours and still recover from my intense crash. I saw how scheduled rest breaks can expand my productivity, even during a crash.
Pigs at a Trough
Excited by success, I went on to getting better at “Pigs at a Trough” scheduling. This is a pacing strategy that suggests limiting our scheduled actions to a few priorities rather than adding more and more tasks.
Just as there is limited space at a trough and the only way a new pig can get in is to squeeze another pig out, people with CFS and FM are better off thinking of “substitution” rather than “addition.” In order to add a new item to our schedule, we are better off replacing an item thererin.
I have developed a system of reviewing my schedule on a weekly basis. Knowing that I can handle a finite amount of Doing in a week, I look at the previous week’s activity and rest level, then look at next week’s schedule to decide if there is room for something new. Then I look at my calendar for the next week and make a plan for how to manage my commitments.
Personal Rules
Another pacing strategy I have learned to use is to have individualized personal rules. I developed my rules based on the results of my experiments with rest, physical exercise, social events and workload.
If I follow these rules, I will stay within my current energy envelope, able to be productive without triggering a relapse:
- I can do either mental activities or physical activities in a day, but not both
- I can work up to six hours in a day if:
I do no exercise and
I keep up my 45/15 work/rest pattern
- Even if I use rules 1 and 2, I also need to schedule weekend rest time and defend my evening wind down time. If I don’t, it will all fall apart.
- Even following all above rules, I need to be diligent about limiting appointments, meetings and pleasurable events during the work week. This is a learned practice, it does not come naturally to me!
Conclusion
I was frustrated and overwhelmed with intense symptoms when I started the pacing class, and I didn’t know how I had gotten there. I was hoping that through the class I would learn better how to pace in a general way, but what I learned in the class was a breakthrough!
I learned that I can either work all day or do something physical, but not both.
I learned that my envelope is flexible but can be accurately described by my personal rules.
I now have three concrete practices that I have worked into my routine:
- 45/15 work/rest pattern throughout the day
- My “Pigs Plan,” scheduling practice, where I take a few minutes to plan how I will get through the week, and then amend this per day, keeping in mind the week behind and the week ahead
- My personal rules
Because of what I was able to do in the class and since, I feel well equipped to move forward while taking care of myself. |