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I agree that how to deal with fatigue is the toughest misconception. Frequently I have to decline evening invitations and bow out of evening obligations because I know I will not have the stamina to remain standing after 7 pm. Inevitably, the asker will say, “Just take a nap and jpin us later,” not understanding that although a nap may allow me to regain consciousness, it does not restore my strength; it takes 8 or 10 hours of sleep to restore energy.
Second is the expectation that I should be able to take on mental tasks (making plans, telephone calls, writing lists and letters) because I can do them sitting down! Others don’t seem able to understand that my fatigue is not only physical. My difficulty stringing words together is not cognitive decline, it’s another dimension of the disease that comes and goes depending upon my restorative ability.