Hi, I've had lupus for so long (20 years) now that I just don't know what normal is... sometimes it's awful talking to people who don't know illness b/c you will describe a day in the life and they will agree and say that they go through all that stuff too... which has led me to second guess myself and not have any clue what is normal.
I haven't had the lupus antibody present for a few years; however, my days all look different... does this mean I may have good days and bad days? is this out of the norm? or does every person go through this?
what I experience are days where I am extremely tired. some days I am extremely energetic. after gardening in the heat, I will be flat out for 2 days after. is this normal? I sleep after work every day. I find I have a crappy quality of life of just working and sleeping and getting up long enough to make dinner and go back to bed. weekends are recovery days where I can't do anything. Is this normal or abnormal? my old nephrologist has said that I can perhaps consider myself lupus free now bc i HAven't been lupus active for so long. however, I still have meds for blood pressure, fluid retention, blood disorder and depression... I have damaged kidneys. I also get sick easily and catch things easily. am I really lupus free? if so, what's wrong with me now?
more importantly, what is normal???