May 18, 2006

How to cope with fatigue??

I can still remember back in my LBL (life before lupus) how I would bounce out of the bed as if I was on springs. I long for those days every day now. It seems like it takes me soooo long now to get out of bed-between being too tired to want to get up and too swollen to get up easily-it is just nothing like it used to be for me. I get in these moods where I throw myself a pity party every now and then and simply long for the way my life was. It is not good for me to do that and I know that but sometimes I can not help but to feel sorry for myself, my children and my husband when I think about what they lost as well as myself. I try so hard to keep things close to normal but somedays it just seems like too much. It is hard for me to know what the right answers are-how do you deal with being so different than you were? I try to make jokes alot like I bet it is easier for lazy people to gert lupus because they never want to do anything anyway-LOL. But the truth is it hurts sometimes. I can not believe this is my life-I keep waiting for this remission in which lupus may never rear its ugly head again but so far that is elusive. I have some really good days but they never seem to last and it is worse by people who say stupid stuff. We know who these people are they say "I can not believe you are having so much trouble-my aunt has lupus and she is fine" or they say "Maybe you are not doing everything your supposed to, my cousin has lupus and they never swell up like you are" just stupid stuff........................................it gets on my nerves!!

I have to close tonite at work and then open in the morning and I am already exhausted beyond belief right now-too bad I can not just sleep for about 40 hours-that is what I think I need.

The fatigue is so bad sometimes that I just want to lay down and not have to get up. If anyone with lupus has some useful tips for beating the mind-numbing fatigue PLEASE share.

Namaste

Posted by Lisa on May 18, 2006 7:53 AM