In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
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This is one of the hardest things for me to deal with, because I don't feel most "normal" people really get it at all. Why would they? Seems like it's a constant battle between explaining it to others, or denying it to myself and the tension of that never goes away. Then there is the guilt of knowing that others miss out sometimes by association. So I really found this post and thread so reassuring in the sense that it's a common frustration, others DO understand, and it is just something we have to learn to cope with (as do our friends and families). It's a heavy load, but it helps to share and feel heard.
Oh sweetie, I'm sorry I just now read your post. I think we have all been through this. Sometimes it's very difficult for others to understand if they just look at you. If it wasn't for my oxygen I would look normal. God knows I'm far from it. Don't worry about your daughter kids(including my own) are selfish by nature. I think it's written in their DNA. Somthing like When mom feels the worst it's time to kick her around.
Besides it sounds like your hubby could have gone he just didn't want to. Ok I won't attack him. My SIL and bro went to the lake monday. They asked if I wanted to go. Yeah right! I want to walk down the beach lugging a 15 lb tank with the sun beating down on me. All she aid was I need to get out and blow the stink off of me! I am just convinced even if they try they don't get it. The more they don't get it the more they try to make us feel bad. I try to tell myself if someone in my family has to have this disease I'd rather it be me. All though I wouldn't mind if they got a really bad case of measles