Hi my Mum has had Lupus for many years and wasn’t really diagnosed until about 15 years ago. She is know bedridden cannot do anything herself and is in severe pain. So much so that she tried to take her life last June. She has been to several pain clinics to which help her for a very short period her doctors are good but I beat myself up as I cannot do much for her as I live about 2 hours away. Conversations over the phone can be difficult as well as I try to talk about things other than her condition. She is due to go to the pain clinic again on the 18th but I have now got to the stage of thinking is it worth it I obviously dont say this to her.
My Dad is 83 and does everything for her he won’t have help. I’m sorry for sounding sorry for myself but it doesn’t matter whether I suggest things to my mum and dad or if I call her doctor I just seem to be going round in circles.