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How do you explain…that your “tired” is different from their “tired”? Chronic Fatigue Syndrome

  [ 31 votes ]   [ Discuss This Article ]
By Mary Ann Trickso Sotero • • January 1, 1999

… that when you are at your worst, it feels as if you are near death and all your systems are shutting down?

… that you spent your birthday celebrating the fact that it was a pain-free day?

… that your days are filled with making Solomon-like decisions? “Do I use today’s thimbleful of energy to make a few phone calls and write checks, do the laundry or begin phase one of a major job, like cleaning out the refrigerator?”

… that once you modify a recipe to fit your food sensitivities and make a detailed shopping list for your husband, you no longer have the energy to cook?

… how much you yearn to do normal, everyday things, such as jump into the car and go buy paper towels or get out of bed, get dressed in “real” clothes, put on a little makeup and some jewelry? Forget cruises or hosting a dinner party for friends!

… that when you feel a little better and push yourself to do a little more, you often end up paying dearly?

… that not knowing the date isn’t always due to a memory lapse? When your days are filled with inactivity, there are no markers to tell you today is Sunday, May 10.

… how thrilled you are when faraway family and friends write you letters but how guilty you feel because you know it may be months before you have enough energy to answer them?

… how painful it is for a shop-till-you-drop person not to be able to buy Christmas presents for those she loves?

… how much it hurts to see your fun-loving husband not be able to do all the things we used to do because you can no longer do them?

… that when, after months, you get to the supermarket with your husband and he treats you to lunch at a sub shop, you feel as though he took you to see a Broadway show and to dinner at a five-star restaurant?

… how hard it is to focus on thoughts such as “I am one day closer to recovery,” rather than, “So far, I’ve had this disease for one year and no one I’ve talked to has recovered in less than five”?

… that sometimes you feel as if Sleeping Beauty’s spiteful old fairy was present at your birth, too? Her curse: “She will look so good but will feel so awful!”

… how it hurts down to your very roots to sense that people doubt you are really sick?

How do you explain all these things to someone who has not “walked?”

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