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Limits, Logging and Better Health

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By Elena Rosen

Note: Elena Rosen is a ME/CFS patient from Vermont. She is a course leader and the Program Administor for the Self-Help Program.

Developing a detailed understanding of my limits has been essential to escaping push/crash cycles and learning how to enjoy my life with ME/CFS. My best tool for finding my limits has been the combination of experimentation and record keeping.

In fact, I’d say they have been crucial to my improvement from 25% in 2008 to 98% in 2019 on the ME/CFS & Fibromyalgia Rating Scale.
 

Linking Activity & Symptoms
 
I started logging when I took the Introductory Self-Help course. My first log was adapted from the program’s Activity Log. I used the basic form of recording my activity level and comparing it to the levels of my symptoms.
 
I added a column to record my mood, so I could see how my emotions impacted my symptoms, and I also had a column to record how long I slept and to rate the quality of my sleep, as well as a column to rate how I felt overall that day.

When I reviewed my logs, I focused on the days I had rated very good or very poor. They provided me with ideas for what helped and what made my symptoms worse.
 
Having finite data that showed me how my energy, cognition, digestion, pain and sleep responded to different activities gave me the information I needed to begin my journey towards better health.

For example I could see how surfing the internet, something I had thought of as a fairly low-impact activity, increased my cognitive symptoms if I stayed on for more than an hour and even affected my sleep regardless of what time of day I did it.
 
Experimenting to Gain Control
 
Once I could clearly see what was causing my symptoms to flare, I experimented to find how I could gain control. In the case of surfing the internet, I began by experimenting with limits on my computer time and by confining my computer usage to certain times of day, always noting the effects on my cognitive symptoms and sleep.
 
Through lots of trial and error, I found that my cognitive symptoms were minimally impacted if I limited myself to three twenty minutes chunks of time on the computer, interspersed with other less cognitively taxing activities.
 
I also found that cutting myself off from computer usage by dinner time kept it from affecting my sleep and my cognitive symptoms were the least impacted when I took most of my internet time in the morning.

Logging has also demystified the seemingly random fluctuations in my symptoms and showed me the patterns that my body naturally exhibits as well as the ones I cause.
 
Focus on Reducing Pain
 
When I've wanted to focus on understanding one particular area of my ME/CFS (for example, pain), I've expanded my records in that area to include sub-areas (separate columns under the pain heading for rating for joint pain, muscle pain, headache and notes to indicate where the pain is located).
 
To understand pain, I wrote that I had muscle pain at an eight in my hamstrings, lower back, biceps and forearms, joint pain at a five in my knees and headache at a five.

With this level of detail, I then spent some time lying down, put arnica and heat packs on my sore muscles, stayed somewhere quiet and dark to help my headache and scaled back physical activity for the next two days.
 
Finding Causes of Flares
 
I also use my reviews to identify probable causes of my flares. In this instance, I determined the likeliest cause of this flare was 30 minutes of vacuuming the previous morning.

I made a note in the back of my log book, in the “future targets” section, that 30 minutes of vacuuming was too much and that I wanted to experiment with two or even three shorter sessions interspersed with rest.
 
The next time I needed to vacuum I did it in three fifteen minutes sessions spread out over the afternoon. I did other less physically challenging activities in between and stretched afterwards. The next day my pain level was normal, so I knew I had found a formula that could make vacuuming doable for me.
 
Progress Through Experiments
 
One of the great gifts of logging is that it has given me a safe way to try new activities and routines. I am careful to introduce new things one at a time and that makes it easy to see the impact, either positive or negative, they have on my symptoms.

My world has expanded as I've come to realize that activities I had written off as being too tough on me are available, as long as I do them in smaller chunks, or schedule more rest around them.

Also, looking at my health as a well documented experiment has also allowed me to take the emotional aspect out of evaluating my symptoms. Instead of beating myself up when I don't feel well, I am able to see in my logs why something isn't working and then make changes.
 
An example is my experience of seeing a movie weekly at my best friend’s house. I noticed that even though it was a comfortable and fun event, and ended early, my energy was significantly lower the next day. I turned to my logs to try and find a solution.
 
I discovered that even though I took a longer than usual afternoon rest on my movie days, my activity level was still averaging out to be the same as a normal day.

So I experimented with lowering my activity level somewhat on my movie day. When I made that change, my energy level the day after was normal and I’d discovered a new way to continue participating in an activity I loved and living within my limits.
 
Summary: Benefits of Logging
 
By adapting a more balanced, analytical attitude towards my symptoms, I’ve been able to get past the fear and uncertainty I had been experiencing.

Seeing the direct correlation between my actions and my symptoms took the mystery out of flares, and made me feel that managing, and to a certain extent controlling my ME/CFS, was within my power.

Finding my limits though logging has allowed me to expand my world without fear of a relapse. Knowing where my limits are gives me freedom to fill up all of the space inside them with nourishing, enjoyable activities. I've learned that it is possible for me to live a rich, fulfilling life with ME/CFS.