Pacing Strategies That Help Me
By Kate Morgan
Note: Kate is a ME/CFS and fibromyalgia patient from Toronto who works as an office manager in a high school. She joined our program in 2014.
I struggled a lot with ME/CFS and fibromyalgia, and experienced many rounds of push and crash before taking the Introductory course.
Thankfully, by using the pacing strategies I learned there and will describe in this article, my crashes aren't as frequent or as severe as they used to be and my recovery time doesn’t last as long. Also, I’ve learned a strategy for avoiding relapses.
One part of pacing is recognizing the many ways we affect our symptoms. Here’s what I have learned makes my symptoms worse and what I’ve found I can do to reduce my symptoms.
What Makes My Symptoms Worse
1) Skipping My Scheduled Rest Breaks
Through experimentation, I found that I need three major rest breaks a day (7:30 am, noon and 4:30), plus two brief rests, at 10 and 2. I'm usually OK if I skip the short rests, but if I skip the others, I pay the next day, with substantially increased fatigue, muscle pain and brain fog.
If I do more than my body can tolerate I crash. Overdoing falls into one of two categories.
· Overscheduling: Planning more than one appointment (medical, personal errand, etc.) in a two week span. If the event is a social outing, the limit is one per month.
· Overexertion: Doing more than my body can tolerate. Some examples include going up the stairs at work more than once a day, unloading the dishwasher and putting laundry away on the same day, or going 10 paces too far on my usual walking route.
3) Sensory Overload
This refers to overstimulation of two types. The first is from noise, lights, smells, people, crowds, and talking. All these types of sensory input intensify my symptoms.
The second is overstimulation of emotions from TV shows, reading, etc. I find that an extreme state of either good or bad emotions triggers fatigue. I do best when I can keep my emotional state in the “middle of the road.”
What Reduces My Symptoms
1) Taking Rest Breaks
No treatment, medication or supplement works as effectively to control my symptoms as my rests. [Note: See Kate's article How I Used Rest to Escape Push and Crash.]
2) Using a Heart Rate Monitor
The monitor tells me if my heart rate is OK or in the area where symptoms are intensified. If I’m over my limit, I stop what I'm doing and rest until my heart rate comes back within my safe zone.
For example, if my monitor says the rate is too high when I climb stairs, I pause half way up the stairs and rest. [Note: For more on how heart rate affects symptoms, see the article Pacing By Numbers.]
3) Using a Pedometer
By wearing a pedometer, I have found that my pain and fatigue increase if I take less than 3,000 or more than 4,000 steps per day. So I have a small window of "just right" and I try to keep my steps within that range. The pedometer really helps me to stay in my Energy Envelope.
I can't say enough about the importance of keeping records. I use a phone app to log activity levels and symptoms. The app is very simple and it takes me only a few minutes throughout the day to enter the information. What I like best is the bar graph that will show me my exertion rate vs my exhaustion rate.
Once a week, I transfer the highlights from my app (energy vs fatigue levels, pain levels, etc.) onto a paper calendar, so I can get an overview of how I’m doing. The whole system helps me plan my daily activities and rests. Also, I use the paper calendar to plan my activities for a month so I can see at a glance where I'm scheduling busy days too close together.
To summarize, logging is key for me as I can visually see (a) a reminder of when to take my rest breaks (b) how many activities and at what level (low, medium or high) I have planned over a week or month (c) the cause and effect of my activities vs symptoms.
Avoiding a Relapse
The self-help program suggests that we think about non-routine events differently from everyday life. These special events make extra demands and often trigger relapses. Based on this understanding of special events, I adopted a saying and a question to help me decide how to manage such events:
The saying: I can't do everything
The question: What will it cost me?
Let me give you an example.
Recently, my family and extended family were going on a weekend trip. I was expected to join them. But the idea of the trip made me anxious. My life had been going well; for the first time in years, I had made it through the first six weeks of school without a crash or severe flare. I worried that attempting a trip might knock me into a major flare.
So I reminded myself of my saying and my question. To answer the question, I reflected on the cost if I went on the trip, measured in terms of the effects on my various Energy Envelopes.
Thinking about the effects on my physical activity envelope of a three and a half hour drive each way, I had to acknowledge that it would be greatly fatiguing. I wouldn't be able to manage the sightseeing and would end up spending most of the time in the hotel. So I told myself, in that case I'd rather stay in my own home.
In addition to physical exertion, I would be exposed to an increase in external stimuli, noise, lights, sounds. This would add greatly to my fatigue and thus to the recovery time after the trip. And third, my social/emotional envelope, which is my most restrictive, would be completely depleted by spending three days with a large extended family group with no place for quiet recovery
So I asked myself, “What would happen if I stayed home?” The answer: I would have three days of blissful quiet and peace in my own safe environment and I would return to work on Tuesday feeling stable and rested. So I chose not to go on the trip.
As always, my family were very supportive of my choice. They had a wonderful trip and came home and shared stories and pictures with me. As for me, I rested quietly, enjoyed a few slow walks in the neighbourhood park to take in the fall colours and returned to work feeling calm and rested, living fully within my energy envelopes.