My complicated health journey now includes post-exertional malaise

Life with chronic and rare illnesses is undeniably complex. I constantly juggle both existing and new symptoms, frequent doctor appointments, biweekly treatments, and the ongoing challenge of staying attuned to my body. Regardless of my mental resilience, my body is no longer the same, and it simply can’t live life the way it once did.

Gone are the days when I could stay up late, get toddlers ready, drive an hour to work, put in a 10-hour shift, drive home, spend time with my children, shower, remodel an entire room, and do it all over again. Now, even a simple day of running two or three errands requires careful pacing, and planning rest before and after, because it’s too much for this new body. While I know I shouldn’t push myself past my limits, I still try (and often fail) to live “normally.”

As a child, I was diagnosed with lupus and Ehlers-Danlos syndrome (EDS). These conditions affect me daily, causing a weakened immune system, joint dislocations, stress-induced skin rashes, fatigue, gastrointestinal issues, and more. However, developing what I now consider my “primary disease” brought profound changes.

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An unfair trade-off

In 2020, I was diagnosed with atypical hemolytic uremic syndrome (aHUS), a rare disease that causes my immune system to attack and destroy my red blood cells, forming tiny blood clots in organs — most commonly the kidneys, which can lead to kidney failure. My first attack targeted my kidneys, liver, heart, and uterus. I nearly died.

For me, living with lupus and EDS is like walking around with a light blanket draped over my body: I’m always aware of its weight, and sometimes it’s frustrating and gets in the way, but it’s manageable. Living with aHUS, on the other hand, feels like carrying a heavy weighted blanket. The burden is much greater, with the constant risk of complications slowing me down.

This brings me to post-exertional malaise (PEM). Before aHUS, I would push myself past the point of exhaustion, surpassing my limits to finish a project or make it through an event, then let my body rest and return to baseline the next day. For someone healthy, a little extra sleep and water are usually enough to bounce back.

But PEM makes this impossible. According to the U.S. Centers for Disease Control and Prevention, PEM is the “worsening of symptoms following even minor physical or mental exertion that would have been tolerated previously.” These episodes can last for days or weeks, and some people never regain their previous baseline. Even with time and rest, the body may never fully recover.

Imagine that on a typical day, you wake up, shower, eat, work on your computer for two hours, take a 10-minute walk, and then need to rest. Then, one day, you work for four hours, only to have friends invite you out to shop and have lunch. Even though you’re tired, you’re excited for the social interaction and decide to push through.

Most people would come home sleepy and simply go to bed early, as that’s all it would take to feel refreshed the next day. In my case, though, I’d be aching all over and feel as if I had the flu. Exhausted, I’d hope to fall asleep immediately, but migraines, swollen legs, and an upset stomach would keep me awake.

The next day, I’d wake up late, too exhausted to shower or cook, so I’d settle for a small snack. I might attempt to work, but it’s nearly impossible. I can’t focus, my head aches, my back hurts, brain fog sets in, and my body quickly declines. I might last 45 minutes before my body demands rest. That daily walk? Not happening.

Once I push my body beyond its limits, it can’t catch up. I still have good and bad days, but since aHUS, I can’t push myself like I used to. If I try, I’m laid up for two days. It’s an unfair trade-off that’s simply become part of my life.

Unfortunately, I continue to push myself in search of some semblance of normalcy. I have two active young boys and am slowly turning our new house into a home. Life’s everyday responsibilities — work, cooking, cleaning — don’t pause for illness. So when I feel good, I rush to complete as many tasks as possible before PEM inevitably sets in, especially since “good” days are becoming fewer and farther between.

Pacing has become a critical lifeline for managing my symptoms. It’s a self-regulation tool — an ongoing assessment of how much energy is needed to get through a day, and adjusting my activities accordingly. I’m even considering getting a pacing device, like an armband, ring, or earring that tracks fatigue. It’s challenging, but I strive daily to adapt to my “new normal” and avoid pushing myself too far.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.