I'm also a newbie. I was just diagnosed with SLE March of this year. I have my good days and my bad days. I take advantage of my good days because they don't come very often. I actually get to do my errands, clean the house, hang out with a friend, or even go shopping. And even after an eventful day, I feel ok. But on my bad days, all I want to do is hibernate and hide from the world. During these times, I have a hard time getting out of bed. I also feel like 'blah' and out of it. During the weekends, when I'm off from work, I sometimes stay in bed all day. I take naps during the day, and still feel exhausted. My joints ache at times, I sometimes have a headache that lasts all day. I just feel so miserable on the bad days. Especially when I'm out in the sun-forget it, I'm down for the count feeling soooo tired. I even get irritable. :x Lupus is unpredictable. We can feel good one day and crappy the next. We just have to take one day at a time... So, you're not alone. I understand exactly how you feel. And my hair's been falling out since March. :cry: I hate it! My hair is very thin, but, I see that it is slowly growing back (lots of little hairs growing everywhere). I can't wait til my hair becomes fuller.
"I've learned that when bad times come, you can let them make you bitter or use them to make you better."