More threads by Daniel E.

Daniel E.
An excerpt:

We don’t get days off.​

Yes, some days are better than others, but few of us get a symptom-free “day off.” I don’t. The relentlessness of symptoms takes its toll, both physically and mentally. One reason is that most people we encounter (including doctors and other medical practitioners) expect us to get better, even though this is something beyond our control. In fact, we often demand of ourselves that we get better; this is fertile ground for self-blame—that cruelest of emotional reactions. (For more on self-blame, see my piece “Have You Listened to Your Self-Talk Lately?”)

“Fatigue” as a symptom is not the same as being tired.​

It’s likely that anyone reading this whose chronic illness includes the symptom “fatigue” (as most chronic illnesses do) has been told by someone: “I’m tired too.” But the fatigue of chronic illness cannot be cured by several nights of good sleep.

One infectious disease doctor explained my fatigue in a way that hit the mark. She said it was as if, when I wake up in the morning, no matter how well I’ve slept the night before, my “battery” is only charged 25 percent.

Imagine starting every day with your body only 25 percent restored by sleep. No wonder I can’t visit my son and family who are only about an hour’s drive away. Just the trip there and back uses up that 25 percent. And when they come to visit me, after about an hour and a half of chatting, my battery is down to about 5 percent, so I have to lie down. It used to break my heart, but after 21 ½ years of being like this, I’ve come to accept it and make the best of the life I have.
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