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Using Pacing to Control Relapses & Reduce Symptoms
By Kathy Mero Note: Kathy is a CFS patient from Texas and a member of our community since 2013.
For many years, life with CFS meant living with frequent relapses. Then through the self-help program, I learned pacing strategies that have enabled me to eliminate crashes almost entirely and to live symptom-free most of the time.
Life with CFS Before Pacing
I have had CFS for 27 years. When I was first ill, but had not been diagnosed, I decided my fatigue could be improved through exercise. I started with 15 minutes of walking, which intensified my fatigue greatly. My first exercise program lasted three days and subsequent tries were equally unsuccessful.
After my CFS diagnosis a couple of years later, I quit pushing myself to exercise, but still experienced a milder form of push and crash. For many years, I lived with this milder form of push-crash. I hated having to push myself to do things, but I thought it was just part of the illness.
Even after I retired, I still suffered crashes. I rested whenever I felt tired, but didn’t understand what caused me to get so tired on some days, while feeling fine on others.
My Pacing Strategies
It wasn’t until I joined the self-help program three years ago that I learned about pacing and setting limits. Using pacing, I have been able to minimize and almost eliminate crashes, and live mostly symptom-free.
Of the many pacing strategies the program describes, here are the ones that are most helpful to me.
Delegating, Simplifying, and Eliminating
I have delegated heavy housecleaning to my housekeeper, and heavy lifting of anything to my husband. I simplify as much as I can, which for me often translates to prioritizing.
For example, if I want to de-clutter or clean the kitchen, but don't have energy to do all of it, I do what makes the biggest difference and leave the rest till later. I always say, do the easy stuff first! I have also simplified cooking, by limiting the amount of chopping and dicing for each meal. Oven baking is easier than stovetop frying. Sometimes I eliminate cooking by eating out! I have eliminated most physical activities, like mall shopping and walking distances.
Taking Scheduled Rests
I rest every day after my shower. Usually my rests are sitting on the couch with my feet propped up. If I feel like it, I lie down, but normally, sitting is quite restful for me. If I have spent the day out, I often take a flat rest when I get home.
Putting Limits on Individual Activities
I don't know my limits on all activities, but I know my limit for standing in the kitchen and cleaning or cooking is about an hour when I am at my best. Computer is time is much longer, unless it involves a lot of concentration. Bill paying and paper shuffling is limited to 30 minutes.
Activity Switching
I definitely use this one! When I get tired from thinking, I get up and do some laundry or light cleaning. If I am physically too tired, then I get sedentary and watch TV.
Using Devices
I rely on my heart rate monitor to help me figure out when I need to stop. It seems to me that when my adrenaline kicks in, my heart rate goes up and it's a good indication that I have used up all my energy for the time being. If I stop at that time, I avoid the out of proportion increase in symptoms called Post-Exertional Malaise (PEM). If I stop before that happens, it's even better, because it gives me extra energy the next day, with less chance for adrenaline to kick in. I also use my resting heart rate, as Idescribe in another article on this site, to determine what my energy envelope will be for the day. If it's even 3 points higher than normal, I know that adrenaline will raise my heart rate sooner than normal. So I reduce my activity level for the day.
Rule of Substitution (Pigs at a Trough)
I love this one! It helps me to plan my days, if I think in terms of having a limited number of things I can do in a day. This strategy allows me the freedom to pick and choose what I want to do each day. I can choose to do things I like to do, rather than only things I 'should' do.
If I want to do a bit of shopping tomorrow, I cook double today, then tomorrow there is no cooking. If I do a lot of kitchen cleaning, then I don't do laundry. If it's Saturday and I want to spend the day with my husband doing fun (but easy) things, then I don't have to cook, clean, do laundry or exercise!
Strategies for Consistency
I also make use of a second set of pacing strategies that help me live more consistently within my limits. Employing them brings greater stability and predictability to my life, as well as giving me better control of my symptoms.
Rules
I have used most of the strategies in the program’s book over the years, but rules are my lifesaver these days. My life has become more unpredictable in the last 2 years with watching over my very elderly parents.
Unfortunately, my chemo, surgery, and subsequent downturn in energy happened at the same time, making the caretaking of my parents even more challenging. Before I established my rules, the weekly shopping/doctor appoint trip with my folks was really 'pushing' for me, followed by a one or two day crash. Happily, the rules work well for Mom and Dad, too! So the rules became 'our rules'. They are:
As new energy-sapping situations arise, I try to find ways to prevent or alleviate them. For example, the time my Dad shopped a bit too much and I had to help him carry the load to his room caused a big crash the next day for me!
For a while a new rule of no shopping for heavy items was in place, but my husband suggested I get a rolling cart and it has been a big help. Forgiveness
With all my rules around my special day with my folks, the trip has gone from 'pushing' to 'enjoying', and it is no longer the hardest day of my week, most of the time. Still, sometimes things go bad.
That is where forgiveness helps. My husband told me that life is full of compromises, and there will be hard days that I can neither prevent nor predict. Just accept it and don't stress about it, he says. Stressing about it only adds to the fatigue! He is so smart and supportive! Routines
I use routines, and more rules, on the days that I stay at home. I rest more on those days, so I can have the energy to do a bit of shopping with my husband on weekends. I also listen to my body very carefully on my rest days.
Stop and Choose
I find stop and choose very helpful when I am out shopping. For example, while in the store to get a prescription, should I also pick up a carton of yogurt?
I ask myself, "do you really have the energy to walk to the back of the store, or would it feel better to just go home now?" When I don't question myself, I am very apt to overdo it. Logging
I keep records every day, mostly highlighting the big events. These records allow me to analyze what event might have triggered PEM. For me, PEM can be delayed by as much as 3 days, so I review the last 3 days. If I can figure out where I exceeded my limits, I can make appropriate changes to my pacing.
The Bottom Line
Although it’s a lot of work and it took time to put it all in place, the result of using all these strategies is that I am able to live mostly symptom-free and that’s something I wouldn’t have thought possible a few years ago.
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