To preface my commentary on the Push-Crash Roller Coaster (PCRC), I need to first say some things about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Post Exertional Malaise (PEM) and brain fog. Since 2020 I’ve been under doctor’s care for what was diagnosed as new allergies and idiopathic anaphylaxis. After a trigger event late in 2023, I learned about PEM via direct experience. The fatigue was crushing, so I took naps, slept a lot, and woke up unrefreshed. The brain fog was a lot more concerning, lasting about three months. During that experience there were days when I was unable to think clearly, to work, or make dinner. I had trouble retrieving words and remembering the names of people and things. I developed a slight stutter when fatigued. Sometimes I would be in a room and not know exactly how I got there or why I was there. After episodes like this, my vocal cords would become weak, my voice raspy. Thankfully that phase passed, and I have my brain back. I practice pacing to avoid a crash, but it can still happen if I “push” too much.

Now, on to the PCRC I’ve been on since 2020, with 2023 taking it up to the thrill-seeker’s level. To be clear, I do not like roller coasters and never choose to ride those in theme parks. I don’t like this roller coaster either. I hop on the PCRC on days when I feel physically well, and my brain is humming. I overdo things like work too much, clean closets, talk on the phone for too long, or walk really fast up hills. This might feel great while I’m doing it, and I might even be able to do it for two or three days. Then the ride concludes with the always surprising and oh-so-distressing PEM crash that leaves me wondering about my mortality. Crashing can happen anywhere from 24 to 72 hours after mental or physical exertion and triggers are both known and unknown. Something I’m still learning:  It’s really hard for very active people to pace successfully! Many friends in the ME/CFS and Long Covid (LC) communities have expressed similar patterns and results.

Staying with the theme park metaphor, the push/crash cycle may sound more like a merry-go-round. Why keep going round and round with this behavior? My answer is that I do not board these rides on purpose. There are just some days when I feel so much like my former energetic self that I think I no longer have these challenges. When PEM happens, it is way beyond just “being tired.” The symptoms are debilitating and sometimes life-threatening. My husband will tell me I look pale. Looking in the mirror, I can see that is an understatement. Resting is mandatory for hours or days to recover from this kind of flare. I know that millions of people of all ages world-wide are experiencing the same learning curve due to ME/CFS, LC, or other conditions that result in PEM. Knowing that doesn’t make it better. My heart goes out to anyone experiencing the malaise first-hand, especially those who have suffered from ME/CFS for years.

Upon describing the PCRC problem, my doctors recommended that I start to take pacing more seriously and to practice Brain HQ. I follow these orders and also researched everything I could find about ME/CFS, PEM and brain fog including reading the informative book, Clearing the Fog: From Surviving to Thriving – A Practical Guide by Dr. James C. Jackson. I recommend it if you are struggling with brain fog. The latest evidence-based science indicates that PEM and brain fog are linked to gut health. This happens due to a dramatic decrease in serotonin levels and viral spike protein persistence in the gut that leads to inflammation of the vagus nerve, in turn affecting the brain and nervous system. This NPR article by Will Stone explains all that in detail.

My medical team continues to remind me that these conditions are chronic, and while I work toward being as active as possible, I must respect the biology enough to resist overdoing it. They have recommended following the pacing protocols set in place by the ME/CFS community. Pacing is a coping strategy that is meant to reduce the number of relapses and crashes. It provides a framework for balanced physical, mental, and social activity supportive of a stable quality of life. Pacing is not meant to be a therapy, but when done consistently it can have a therapeutic effect, reducing the unpleasant symptoms associated with chronic pain, brain fog, and PEM. The history, principles, and practical instructions (including worksheets) are described in this article from #MEpedia. I make an honest attempt to stay off the PCRC and pace in a daily way. When I succeed, I am gratefully stable. When I don’t succeed, rest is mandatory.

The Center for Disease Control and Prevention (CDC) states that “There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).” If you are diagnosed with ME, or if you know someone with this condition, please take heart. The PCRC can present daunting limitations to living life large. But in addition to pacing, there are many other approaches to palliate symptoms. This video by ME patient, Giles Meehan presents a list of ten treatment areas. I will discuss several others in a later post.

Thank you for reading! Next time, in the Long Covid series, I will share more about ME/CFS.

Please Note:  The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions. All site content is for informational purposes only and should not be taken as medical advice. Always consult with medical professionals to address new or persisting health concerns.

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