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06/17/2007 11:25
engel
Posts: 8
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From all the symptoms, I find the hardest to cope with, and the most debilitating, the extreme fatigue. It gets so bad at times that I have to lie down, whenever time of day, wherever I am and whatever I'm doing. It's invisible, I don't even get pale or anything, and I know that sometimes people think I'm crazy, lazy, spoiled or all of the above. I want so much to be able to do stuff, to be active like before... And I can't. And mostly people don't understand why, and don't believe me .

How do you cope with fatigue? How can you coquer this? I would be such a happy woman if I didn't have to lie down every two hours...

I am truly disabled.

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06/20/2007 23:47
TWValen
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You're right....it's really hard and NO one gets it.....

It is really hard with respect to others....I am african-american so I certainly don't go pale and look quite healthy almost all the time no matter how fatigued I am. *Sigh* And, get this....I even have a TWO year old active boy to try to look after and a 3 bedroom home to keep up...and with all that can you believe my husband told me he thought I was "lazy"...and that ill or not I should be able to "do everything" and that when he's ill he can "do stuff" which is ridiculous to make comparisons...and mind you the last time he had a "cold" all he did was lay on the couch....while I took care of the baby...

Others just don't get it....and it is sooo hard, especially with a child... much harder than before when I could rest. It's a little easier when I get him to Mother's day out twice a week...but it's still tough on the full-time days...especially considering some days my husband works 24 hour shifts as an intern! I understand how you feel though...I get the fatigue...and right now I have Shingles of all things...adult chicken pox that develops from within (normally only older people get it----but perhaps I did b/c of lupus---lower immunity)....argh....now b/c of that my son just got the chicken pox!

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06/20/2007 23:52
TWValen
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----Oh and I wish I remembered this book that said lupus people need to treat rest like a *PRESCRIPTION* It's so true.... I used to feel my best when I would literally put myself on "bed rest" well before I had a child and only every now and then when my husband is helpful enough (rarely)....but to do it...buy getting enough food and water/drinks next to the bed to just literally stay in the bed all day....and next day you'll feel sooo much better!
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10/13/2007 12:08
Boomernprecious
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Ahh The fatigue. IMO it truely is the worst part for me. At least of the symptoms. My husband is wonderful about it all. He knows that I really do need my rest. I am 24 and the mother of 2 small children(4 and 17months) My 4 year old is my little helper. She helps clean up toys and small things and also helps look after her brother. My husband has pretty much taken over with the real cleaning of the house. I straighten up.

It is so hard. A few months ago I was working, taking care of the kids and helping around the house and it was just so much. I do not know how I was able to do it. I have always been one to push myself. But after 4 years of Lupus and other conditions I am finally starting to realize that my body needs this rest more than anything.

The best way to cope is "Do not be to proud or anything to ask for help" I learned this the hard way. I nap when my son naps.

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02/07/2008 19:59
ld7873
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Oh I really know what you mean! Trying to deal with the fatigue has been the worst! Read up on Yerba Mate tea (similar to green tea) and have been taking it for the last 4 days. Was skeptical at first, but I have to admit, it's increased my energy and I don't feel as achy or sore as I used to. Everybody's fatigue is different, but I really feel that this is worth a try - I hope this helps you...

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