For me it’s the unpredictablity. I never know how I’m going to feel on a day to day basis & I don’t know when I’m going to have the rug pulled out from under me. It sucks making plans & then have to cancel them or not being able to get something done because I’m in pain or don’t have the energy. It’s scary thinking about what could happen in the future. As someone who likes to have a plan & be in control, this part of the disease is definitely the most challenging. Also, I have restless leg 24/7 which might make me actually go insane 🤪