With lupus, you have good days, and not-so-good days. The good days are precious, times when you feel energetic and pain free. The not-so-good days are when you just don't feel like moving, or can't.
While my current relapse isn't as overwhelming as past stretches have been, I'm just not as energized as I should be. My eyes are suffering. It's hard to breathe while on even an easy run. Some days, lately more of them, I simply cannot move off the sofa.
It occurred to me the other day that my kids have often found me asleep on the sofa. I've been feeling very guilty about it. But, I know it's not laziness, it's the lupus that causes this chronic exhaustion.
How do you handle your not-so-great days when life around you is so busy?
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It is actually quite funny that the general public impression seems to be that we're lazy (or at least we're constantly afraid that is what they think.) because all the research I've read about Lupus and Fibromyalgia both is that the patients diagnosed were at one time typically very hard workers, and on their good days still are.
When I was 16 I was in High School all day, then working the Drama office for hours before and after school, and I still found myself a fast food job. I worked my butt off! Before I realized what was ruining my body.
I became very ill, did two kinds of chemotherapy which knocked me into remission but also added to my Fibromyalgia. As soon as I was given the go ahead that I was in remission, I started working part time again.
Too bad my doctor didn't inform me that certain Lupus patients are severely effected by Fluorescent lighting, and I was knocked out of remission again. After that serious relapse and some more freaking chemotherapy, I quit working and applied for SSI.
It's a struggle everyday to force myself not to overwork my body. My brain is too busy for my body!
May 2, 2009 - 12:22pmThis Comment
I was inspired by a story I read some years ago about a 30-something lupus patient who decided to train for a half marathon, and she finished in a little over 3 hours, a very respectable time. She suffered from lupus-related arthritis, but didn't want it to control her life. Too many people give in to their condition.
On the other hand, a young woman I know can barely make it through a day because of all her complications. It's such an unpredictable illness.
Your friend is lucky to have you as a friend.
April 24, 2008 - 7:12pmThis Comment
Having known someone with Lupus for nearly three years, I can vouch that they are far from lazy. Given her symptoms during her flare ups of Pleuritis and her fatigue, I'm surprised she ever made it to work. I actually found her to be an inspiration and always thought to myself if she can do "x" with Lupus, then I need to tap my own strength to push myself. She is truly a talented and amazing person and a good friend.
April 24, 2008 - 11:55amThis Comment