Writing: Susan. Artwork: Robin Mead. Page Updated: April, 2019.
I was sick for several years before I was diagnosed or learned about Post Exertional Malaise. I did a lot of damage during that time.
It’s hard enough to fight your own lifetime of habits and desires to do things, let alone with the pressure you get from other people and from doctors.
While I was researching doctors, I came across these instructions for Dr. Montoya’s patients. Dr. Montoya the former head of the Stanford ME/CFS Initiative. Excerpt from Instructions for Dr. Montoya’s Patients
Doctor Montoya’s Instructions
While in recovery, please do NOT overexert yourself.
🌷 A lot of our patients report that their level of functioning feels like a rollercoaster. This description shows that the patient is overdoing it, and we believe that this behavior may seriously jeopardize the patient’s potential for a full recovery. As soon as patients start to feel better, it is natural to want to increase their activity level; however, this is not advisable during the initial recovery process because it will likely lead to a crash.
🌷 We hypothesize that these crashes, or episodes of heightened fatigue, may have a cumulative effect on a patient’s health, and may compromise the patient’s potential for a full recovery.
🌷 Imagine that every time you crash, your immune system overreacts as a response (as CFS may be an autoimmune disorder). As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover. Even in the best-case scenario, when the viruses have been successfully treated and kept at bay, the damage that has already been done to the CNS may never be repaired. This may prevent the patient from fully regaining his or her cognitive and physical capacities. Theoretically this is how overdoing it and the subsequent crashing which results may have a long-term negative effect on health.
🌷 Each patient is unique and should develop a routine level of physical and cognitive functioning that is appropriate for him or her. Patients should feel like their functioning level is constant from day to day, so that they are not experiencing any crashes. We feel that only once patients have learned to function under their threshold for crashing have they optimized their treatment plan and their chances for a full recovery.
How to Get Others to Understand That Activity Makes You Worse
Potential Dangers of Exercise or Activity for ME and Chronic Fatigue Syndrome