DM Blog

Everyone who’s met me in the last 13+ years knows I live with poor health. It’s not something I can hide. But apart from mentioning little tidbits here and there in various blog posts, my health is not something I write about a lot. Why? Perhaps it’s because I see my blog as a way of taking a break from what consumes my everyday existence.

The first time I explicitly wrote about having Chronic Fatigue Syndrome and called it by name was back in May 2013 in my post, Bobby Carcassés at Lula Lounge, but more significantly, I addressed it head-on in my February 2015 post, Systemic Exertion Intolerance Disease, which is the new/better name for the disease.

What is Post-Exertional Malaise?

From Wikipedia’s article on Post-exertional malaise:

Post-exertional malaise (PEM), sometimes referred to as post-exertional symptom exacerbation (PESE) or post-exertional neuroimmune exhaustion (PENE), is a worsening of symptoms that occurs after minimal exertion. It is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and common in long COVID and fibromyalgia. PEM is often severe enough to be disabling, and is triggered by ordinary activities that healthy people tolerate. Typically, it begins 12–48 hours after the activity that triggers it, and lasts for days, but this is highly variable and may persist much longer. Management of PEM is symptom-based, and patients are recommended to pace their activities to avoid triggering PEM.

I recently discovered an excellent YouTube video, Understanding Post-Exertional Malaise – Dr. Brayden Yellman. Anyone who suffers from ME/CFS/Systemic Exertion Intolerance Disease (SEID) or even Long Covid should watch this video! But first, here’s an excerpt from the video’s description:

PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion and sensory overload can all trigger PEM. Post-exertional malaise is a unique symptom, incongruent with experiences of fatigue after overexertion in healthy individuals. It is not the same as being more tired than normal after activity.

What I’ve learned about SEID, pacing and how to manage my symptoms

Back in early 2011, when I was going through the year-long process of being diagnosed, my family doctor told me to keep a log of all my activities and everything I ate to see if we could find any patterns. We didn’t.

In February 2015, when the US-based Institute of Medicine released its 330-page report on ME/CFS, it was a game changer for me. Until then, I was only looking at my physical exertion and didn’t realize that cognitive, emotional, or any exertion and stress were all exacerbating my symptoms. Not only that but learning that my symptoms could be delayed by up to 48 hours was like lifting a veil. I looked back at my logs from 2011, and suddenly patterns emerged; things started to make sense. That was the beginning of learning how to better manage my illness and prevent crashes.

Thirteen years after being diagnosed, I’m much better at pacing and reducing my activities to avoid triggering PEM. However, this past month has been complete hell after our landlord shut off the A/C for 14 days, sent me to the ER and triggered the worst PEM I’ve ever had. Even just letting out my dog to pee is significantly challenging these days. I’ve had a couple appointments with my family doctor after my ER visit, but I have to take a Lyft to get there and back since I’m much too weak to take the bus. I’m trying to “take it easy” as my doctor has prescribed, but dealing with the landlord’s lawyer is stressful and continually reverses the progress I make. We’re hoping that this doesn’t become my new baseline. It’s beyond frustrating that I’ve been doing so well at managing my SEID to make sure I don’t crash, only to have my health so seriously affected by outside factors.

I found the video linked above after it was posted several times on Mastodon where there’s a large ME/CFS community. Watch the video, it’s quite good!