::hugs tight:: This is the thing that drives me absolutely nuts about having Lupus. I understand that others are facing organ failure and have much more serious concerns, but for me, this day-to-day uncertainty is what makes me the most angry and feel the most helpless. I had a day last week where I felt FABULOUS in the morning... then after lunch I felt HORRIBLE, took a brief nap... then the evening I felt semi-decent. Talk about frustration! Most days I'm not quite so dramatically back-and-forth, but that seems to be the theme of my life currently overall. I have resigned myself to simply having to deal with this at all times, on all days. Even days where I seem to feel like my old self, I know it will not last. It's sort of the opposite of what you were saying about when you are sick, you know you will get better.
I don't mean to sound so doom and gloom, but I face this same struggle you are talking about. Sometimes I can conquer it with positivity. Sometimes it is something I can endure. Sometimes, though, it gets to me and I rage or weep. But in the end, I do what I have to in order to keep moving forward. I've been diagnosed a year now. I'm on prednisone and two chemo drugs (methotrexate and azathioprine). What I would have called a normal day before all this no longer exists for me. That previous 'normal' day is a very excellent day now, something to be treasured and savored, held close to my heart against the darker, more difficult days.
I haven't really got any advice on how to face it all, to pull through the other side, because I'm still figuring it out myself. But I did want you to know, you are not alone in this bafflement at your old ways being gone, the desire to get them back. In December I had a week or two of really wonderful days. I was SKIPPING in the grocery store with the cart! When I told my son about it, he gave me a strange look. "That isn't like you," he said. That made me so very sad! "Actually," I replied, "that is what I am like inside, what I used to be like. It is very much like me. What I'm like now is what is not like me." And it's so true. I am a very bouncy, cheerful, energetic sort of person... when I have the energy and strength to be so. It still comes out in other ways, but that physical aspect of my personality has been forced to change, and did so very slowly over time, without me even being quite aware of it slipping away.
Hang in there hon, and know I am here, hanging in there with you, along with so many other good folks here who know exactly what you and I are struggling with. Together we will make it through. Life may not be what it was for us, but that does not mean we can't make good things out of it anyway. That's why we are here, to help each other in new ways. ::hugs again::