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How I Use Pacing to Manage ME/CFS

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By Bianca Veness


Note: Bianca Veness, a ME/CFS patient from Australia, is a moderator in the Self-Help program. This article is adapted from a message sent to a group she led.


I spent many years living outside my limits in an exhausting cycle of push and crash. Then, through the self-help program, I learned how to pace myself and listen to my body.

By using pacing, I can manage my symptoms, I've reduced the number and severity of flare-ups and life is a lot less stressful.
 

My Pacing Strategies


Pacing is not one thing for me, but a set of techniques I use to manage my ME/CFS. My pacing strategies include:
 

Taking Scheduled Rests

I have found that regular small rests spread evenly throughout the day stop me from 'hitting the wall' (that is, reaching the point where I feel seriously ill and absolutely have to lie down). I have four and a half to six hours of rest each day, usually in 15 to 30 minute sessions.

I find being flexible with the length and times of my rest breaks each day, provided I get the same overall amount of rest, helps me manage my symptoms without feeling stifled by routine.


During some of my rest breaks, I listen to relaxing music or books on tape or use guided relaxation CDs. I also have some quiet rest time when I don't listen to anything, but use relaxation techniques like breath awareness, body scanning or focusing on sensory awareness.

I also use visualization techniques to imagine my body getting well. Some people see resting as a passive activity, but I see it as a proactive health strategy, a time I can use to feel better and release any worries and stresses. Rest is my best medicine!
 

Staying Inside My Energy Envelope

Another concept I use from the self-help program is the energy envelope. This term means that ME/CFS or FM imposes limits on us and that we can control our symptoms to some extent if we live within those limits, rather than fighting them.

When I first began pacing, I wrote out a detailed energy envelope, trying to be as specific as possible about things like how far I could walk without tiring, how much housework I could manage each day, how much sleep and rest I needed, and what made my illness worse (environmental factors, foods, secondary illnesses, etc).

This gave me a general picture of what I could manage each day, and I used it as a guide in developing pacing strategies and setting targets for myself. I review it every few months.


Creating my envelope was a great motivator for me, because it showed me that I could a lot more each day than I thought, as long as I kept within my limits and didn't overdo it on days when I felt ‘well'.

It has helped to reduce my symptoms because it evens-out the amount of activity I do each day, helping me get out of the push-crash cycle.

Living within my envelope, I'm able to stick to a regular (but flexible) amount of activity and get more done in the long-run without damaging my health.
 

Planning and Prioritizing

I try to stay organized by using calendars, To Do lists and reminder notes. Every night before bed I write a To Do list, numbering the activities (never more than five) for the next day in order of importance, then I put the list up on my wall. In the morning, I plan my day based on activities from this list.

I also keep a long-term To Do list on my computer or in my diary, with a list of the things to get done over the next few months. I use this to set priorities for each day and week.

To Do lists help me to plan ahead and stay within my envelope, but also give me a sense of achievement as I tick off each item - on bad days it might be as simple as ‘have a shower', but at least it's something I've achieved!


I also keep a calendar which helps me prioritize my week and limit my outings, as well as being a record of symptom events like migraines or flare-ups. If I have a project I'm hoping to complete, I'll frequently write out a three-month plan with goals for each week.

Even if I'm unable to follow it due to illness, writing it all down helps me to prioritize, and to see where I can reduce or eliminate activities, and where I can get help from others.
 

Preparing

I find it beneficial to plan for events and outings ahead of time. I try to do as much as possible the day before: packing my bag, planning my route and transportation, and writing a list of things to get done while I'm out.

I give myself time limits for outings, because I find I can make bad decisions for my body when I'm out and about. Of course, sometimes I end up exceeding my limits anyway, but the planning helps me limit the damage.


I also prepare in a similar way when traveling. I make packing lists, sort out travel arrangements well in advance, and plan my activities to reduce worry and stress.
 

Activity Switching

I change from one activity to another frequently. For example, I switch from mental exertion (like using the computer or reading) to physical (like washing up) before I lie down.

Changing from one type of activity to another helps reduce brain fog. I've also found it's helpful to make the transition from rest back to activity in steps.

After a rest, I first do a gentle activity and then switch to something more strenuous. I developed this strategy after I noticed that doing strenuous activity (like hanging out the washing) right after rest is much more tiring as my body isn't prepared for it.
 

Breaking Up Activities

I break every activity into the smallest possible units. For example, I break cleaning the bathroom into a number of tiny steps: getting out the cleaning things, wiping down the sink, bench and mirror individually, sweeping the floor, shaking out bathmats, wiping down the bathtub, and so on.

I only do half of an activity at a time or I use an egg timer to keep to a time limit. For example, I might only wipe down the sink, then return later to do the taps and the bench around it.

Or I might time my dinner preparation and stop after fifteen minutes. I generally don't go for longer than half an hour with any activity, and the more strenuous it is the less time I spend on it.
 

Record Keeping

I keep some kind of health diary everyday, which I change depending on what part of my life I want to work on at the time.

I've kept sleep diaries, food diaries, symptom journals, activity logs, rest charts and research diaries (where I keep notes on what I'm learning about ME/CFS, health and nutrition).

At the moment my doctor and I are working on improving my digestion, so I'm keeping a chart of my IBS symptoms. This helps me feel I'm better managing my IBS, because I use it to make connections between certain foods and flare-ups, and I can see if medications are really having an effect.


One diary I find particularly helpful is a positive action diary. Every day, I write a list of the things I have done that day that have been good for my health.

This might include resting, eating good food, having a warm bath, doing relaxation or gentle exercise, visiting the doctor, pacing my housework, setting targets, or any number of things. I find it's a great way to focus on the positive and motivate myself to do even more.
 

Pacing and Exercise


For many years, I didn't exercise regularly because I couldn't figure out how to exercise in a way that didn't make my symptoms worse. Then I realized that it might be possible to exercise successfully if I applied the idea of pacing in this part of my life, just as I had elsewhere.


Thinking about exercise in terms of staying within my limits, I changed my goal from trying to get fit (very hard to do with ME/CFS) to relieving some of my symptoms.

I began doing light stretches several times a day. I chose to do significantly less than I was able, so that I wasn't fatigued at all by the activity. I started with a level I could do even on my worst day, which was five minutes.


This approach worked. I now stretch gently for three or four minutes at a time, three or four times a day. This amount of stretching has greatly reduced my neck and shoulder pain, and the number of migraines I get. Stretching is the most helpful strategy I have found for treating my pain.


I am trying to extend my stretching slowly and add some strengthening exercises too, at the rate of about a minute a week. I only increase the time if I'm finding the stretches easy, otherwise I maintain the same time.

Because the stretches have been so helpful, because they don't fatigue me and because I enjoy them, I've been able to maintain my exercise program with no problems so far.
 

Pacing: My Daily Rhythm


By using planned daily rest breaks, activity limits and the other pacing strategies I've mentioned, I've gained a sense that I am controlling my illness, rather than the other way around.

Using pacing techniques in a flexible way gives me a sense of freedom, as I feel I am listening to and heeding the needs of my body and living with the rhythms of the day, not forcing myself into an unmanageable routine. By staying within my energy envelope, I am liberated from feeling awful, and I can truly enjoy life once again.

Other Articles by Bianca