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Note: Suella is a ME/CFS patient from England and a moderator in the Self-Help Program. She shared the thoughts below in a class discussion.

Learning to listen to how my body speaks to me has taken time, but it’s been worth it. Hearing and responding to its messages helps me avoid relapses, and live a more predictable and productive life.

 

Over time, I’ve found that my body speaks to me in a number of different ways.

 

My body speaks to me silently in ways I need a professional or tools to hear.

 

Blood Work and Other Tests
I’m tested annually for a range of issues including anemia, liver and kidney functions, etc.

I use a heart rate monitor daily, setting it to beep when I go above my Anaerobic Threshold (AT), the pulse rate above which Post-Exertional Malaise is triggered, as described in this article.

 

The monitor also shows me how quickly my heart rate drops and the time it takes to recover from overdoing. If it takes more than a few minutes for my heart drop below my AT, I know I have triggered a release of adrenaline and lactic acid, and must immediately reduce that day's schedule to avoid triggering increased symptoms.

 

Early warning system: I make use of the protocol described in the article referenced above to determine my morning resting heart rate, something recommended by Dr. Klimas and Connie Sol of the Nova Southeastern University.

 

I found that if the heart rate at that point in the day is five or more beats higher than my threshold, I continue to have a higher than usual heart rate and increased fatigue for the  rest of that day or even longer. When I have an elevated morning heart rate, I replan my day to have less activity than normal and more rest.

 

I use this device for spot checks whilst sitting or lying down to check if I am under my Anaerobic Threshold. I find that my oximeter is not accurate enough when I’m active or for looking at recovery, or receiving warnings of going above my AT when on the move.
 
2) Speaking

These are symptoms that, thanks to my improvement, I generally no longer have. When they occur, I know I need to reassess my level of health and adjust my rules and limit-settings.

Environmental Sensitivities
This category includes light, sounds, scents, heat and cold. I have improved and don’t normally experience these, but when any of them reoccur, I know I have then lost a lot of that improvement and need to take more care with my limit setting.

 

First Aid: Leave the area, alter clothing and consider reducing the remainder of my day’s activities.

When I find myself feeling grumpy and short-tempered, it means I have lost my equanimity and need to re-evaluate what I’m doing.

First aid: Think before I speak and withdraw from company if possible. Long rest or sleep needed here.

3) Shouting

Symptoms of any sort that are my body shouting at me.

Sudden Hitting the Wall of Fatigue
If I experience deep fatigue, it means my body has used up nearly all of my reserves and it will take days of very careful quiet rests and only low to medium activities to recover some of the energies that I have somehow lost. Back to back high activity days or emergencies can do this to me.

Unrefreshing Sleep
If I don’t sleep well, the result is feeling very tired, like I want to stay in bed all day. This is not usually a problem for me, but when it is I know I must limit that day's and the forthcoming week’s activities and pace what I do with more flat rests as well as my daily hour of pre-emptive rest. I often sleep during my pre-emptive rests to catch up on sleep.
 

 

There are feelings I know almost intuitively are not right for me. Examples are foods I shouldn't be eating as they are negative calories and physical things I shouldn't be carrying due to their weight or shape.

 

 

In sum, I have learned that my body speaks to me in many ways and that my life runs better if I listen to what it is saying and respond to its messages.