Posts

Sorted by New

Wiki Contributions

Comments

Sorted by

Chronic disease patients (in my case, CFS/ME) have a different value of their time. To us, time is health. I've been forced to accept the concept of pacing, regular napping, deliberately avoiding some tasks, and performing others at a greatly slower speed. I have to downgrade immediate productivity in favor of avoiding a health crisis. Basically, our administrative support cost is much much higher. Possibly 20:1 or 40:1.

You can spend hours each day gathering data on yourself all month and be pleased with your results, only to fail some crucial real-life test by a few percentage points that you could have easily passed if you'd just taken the most obvious strategy.

This is actually one of the foundations of pacing therapy. First, you gather information. Then your therapist will go over it to determine your average activity per day, and then work with you to make a schedule in which you try to stick to the average as closely as possible, avoiding spikes or slumps. There is some evidence (though far from conclusive) that this can allow patients to gradually increase their activity levels over time. Even if it doesn't, the improved quality of life for me from trying to avoid the push/crash cycle is worth it, even if it sacrifices productivity.

(another currency commonly used in discussion among patients and their support circle is "spoons", from this essay: http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/ )