When The Triggers For Your Illness Are Constantly Changing




By Lisa Alioto in The Mighty.


For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion.

The tricky part is “minimal exertion” may change daily. What I can do just fine one day, will cause me to relapse and spend the day in bed the next. And this is where my fear comes
in — the not knowing what my triggers are.

I’ll admit I like to be in control. But in this case, I think it’s warranted, because every relapse leaves a scar. While I will recover from my relapse, I will never quite recover to the degree of “health” that I was before the relapse. So, a person needs to take these things quite seriously. This isn’t the kind of scar that one would say there is a “story of beauty” behind it.


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