Guest guest Posted November 7, 1999 Report Share Posted November 7, 1999 Hi, Although this is from a lupus list, the toxic fatigue is the same! It was posted so that significant others might better understand. However, I'm printing it out and will hand it to anyone who dismisses my fatigue with a " Well, I get tired too and I still function " or similiar nonsense! Hope you enjoy this - it is humorous and makes the point. take care, CHristie >>E. L. E. F. >>CARING AND SHARING, Newsletter 4 >>THE TOXIC FATIGUE OF LUPUS >> >>BY GLORIA ROSENTHAL >> >>Almost all lupus patients have heard the phrase " But you don't look >>sick " and we cringe inside, knowing >>the speaker's words do not convey the speaker's true meaning: " You can't >>be so sick if you look so well " . >> >>The fatigue that comes with lupus elicits the same reaction. Try to >>explain the feeling to a friend and the >>response is often " I get tired, too " . I want to pounce on those words >>and say " tired? You get tired? I want >>to screech that the fatigue that comes with lupus is as unrelated to a >> " tired " feeling as a hang nail is to a >>broken arm. Calling toxic fatigue a tired feeling is like saying a major >>flood is a minor trickle of water. >>So let's talk, first about what lupus fatigue is NOT. It is not a tired >>feeling. It's not a " want to take a nap " >>feeling. It's not a " lazy day, think I'll take it easy " feeling. It's >>not a " wish I didn't have to do this " feeling. > >What it is: is a full-body exhaustion that makes you feel as if you have >>no bones, that if you didn't have >>skin wrapped around your body, you would melt down into nothingness like >>the Wicked Witch of the >>West. Or that you are a melting candle, except a candle has a wick and >>there is nothing in your body that >>feels that solid. On the other hand, your bones can feel so heavy that >>lifting your arms to wash your hair >>in the shower is a chore akin to a weightlifter hefting a 200 pound >>barbell. His task is easier, though, >>because as soon as he puts the barbell down, he's through. But after >>you've soaped your hair, you have to >>rinse it. That means those bone-weary, heavy arms must be raised again >>and after the shower, these >> " barbells " must be toted around all day long for they cannot be >>discarded like the weight-lifters toys. >> >>Eating too, is an exhausting habit, especially restaurant dining. There >>must be something in the atmosphere >>and a three course meal that makes the lupus body say. " Hey hold on >>there, why are you lifting a fork so >>many times? " or " You broke off one piece of roll and now you want to >>exert that physical activity again >>for another piece? " >> >>The toxic fatigue of lupus also forces you to make major decisions. Will >>you make yourself a cup of tea, >>which means dunking that heavy teabag, or settle for a glass of water - >>and how many ice cubes can you >>use without making the glass too heavy? >> >>Am I exaggerating? Of course, but just enough to get a point across, a >>point that the fatigue that >>accompanies lupus is not like any other feeling. It is indescribable, >>but I know that as these words are read >>by my fellow lupoids, heads will bob up and down in instant recognition, >>though that frantic activity (head >>bobbing) will create yet another bout of exhaustion. >> >>How do I handle this extreme exhaustion? If I'm home, I get into bed >>when it hits though the toxic feeling >>that accompanies the fatigue makes me think that once I do that, I will >>never be able to get up again. >>However, experience tells me I will come out of it and will feel better >>when I do. I never refer to this >>melting away as a nap; it's my afternoon " coma " and my husband tells me >>it is almost impossible to wake >>me. If he must do so, it some times takes ten minutes of gentle shaking >>(and maybe one minute of >>bulldozing tactics). >>If I'm not at home when it hits, and I push through it from sheer will, >>it will be with me for the rest of the >>day. Even if I give in to it later, even if I crawl into bed after it >>has been with me for hours, I will not >>shake it. Years of dealing with it has taught me why this is so: the >>fatigue that comes with lupus hits hard >>and wants to be pampered but it knows, better than I do, just how much >>coddling it needs. If I bow to it, >>I'll revive. If I don't, the fatigue shakes its finger in my face and >>says " Okay kid, you asked for it; now it's >>the rest of the day for you " . And so for the rest of that day, I am that >>wicked witch, that melting candle, >>that weightlifter. I try to work around it. I tell my good friends they >>have to pick up for lunch out. If I >>drive to them in the morning, later, with fatigue as my passenger, I >>will have a foot that's too weak to >>depress a brake and arms not strong enough to turn a wheel. Some people >>understand, some never will. >>Perhaps this will help the ordinary fatigued person see that there is >>nothing ordinary about lupus >>exhaustion. I'm glad I'm finished here, because my body is warning me >>that a bout is coming and I'd >>better be going. My bed looks inviting and my fatigue will thank me for >> " putting it there " by giving me a >>few good hours later on. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Just FYI everyone, a good article on general fatigue. ~ G http://bmj.com/cgi/content/full/325/7362/480 Quote Link to comment Share on other sites More sharing options...
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