The Difficulty Of Living With A Fluctuating Condition




By Sally Doherty in The Mighty.


I don’t know about the rest of you, but there is such a difference between my good and bad days.

Yes, I pace which is the number one advice for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I pace till I’m blue in the face (not literally blue, you understand). People pace differently, but it involves alternating rest and activity at a level which is “manageable” for you. For me, it involves doing exactly the same thing every day. Day in, day out. If it’s 11 a.m., you’ll find me in the shower. 6:40 p.m.? That’s my 13-minute (to be exact) reading slot. This was what I was taught. Find your baseline of activity and do it every day no matter how you’re feeling.

Pacing is supposed to stabilize you. Well, it has to a certain extent. I no longer have absolutely abysmal days when I can’t, for example, carry my plate to the kitchen after eating or when I can’t send a few text messages. And I would never not live without pacing. On the whole, it has made my symptoms bearable and allowed me to increase my activities a tiny bit each year.


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Link to Pacing story

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