I need some good resources for people with auto-immune diseases, particularly ones that give suggestions on dealing with family and friends. Otherwise, I am just venting below.
My disease is one where doctors continually say “mmm, you definitely have something going on” but can’t diagnose it. I went from dancing and walking miles to struggling to walk. Stairs are hard, walking on sand is very painful and slow going.
I met my family for a few days at the beach. My mom rented a place where you needed to climb 25 stairs to get there. Going to the beach was a nightmare. Parking was a nightmare. There were no handicapped spots. And then you had to walk a two-block length to the pool and then it was another two blocks of sand to get to the shoreline.
I noped out on walking on the sand. I met them at the pool a couple times. I told them I could do those stairs 3x a day maximum. The first day I was so tired I fell asleep face down on the floor at 8 p.m. After three full days and two nights, I bailed. I couldn’t keep up with the beach in the morning, the pool in the afternoon and then entertaining the 7 year old at night by going out to the boardwalk.
I felt terrible. I felt terrible that they had to change their plans around me. I felt terrible that I couldn’t join them at the beach. I felt terrible that I couldn’t keep up. I said this to my sister whose response is that she worries because “I can’t do anything.” Thanks. That makes me feel tons better.
I’m seeing a new doctor this week and my mom was all “maybe this one will fix you!” It’s not going to happen. This isn’t going to disappear like an f’in cold. Other drugs haven’t worked.
I’ve become more and more isolated because people just don’t get it. I just talked to my cousin who is all - come visit! We can go kayaking! Dude, I can barely get through grocery shopping, Why can you not understand that I cannot do this stuff anymore.
It’s just easier to stay inside and alone. The end.