u/carrietoohey

does anybody else forget they have srs day-to-day? i’ve experienced daily pain for so long that i think ive learned to ignore it. i’ll feel a lighting sharp pain anywhere from my eyeballs to my toes and i just adapt and move along within seconds. when those pains first started for me in oct 24’ i definitely panicked and paid lots of attention to every bit of every episode, but since then i’ve been accepting excruciating pain as my normal. i’ve gone to work, social events, dates, holiday gatherings, etc. , with excruciating pain that has ranged through every single part of my body. i’ve silently dealt with the pain as it became my normal. i don’t react or mention to every sharp pain when i’m around my friends and family, because i feel like that’s become the only thing i can say about myself since it started. every time i have friends wanting to plan a trip to an amusement park, a hike, helping friends move, driving anywhere or any other activities that require not laying flat on my back, thats when i realize i truly am limited. i’ve been absent from my job and social life for so long that being on bed rest is now my normal, and it shocks me when i’m reminded that excruciating chronic pain is NOT actually normal. for example i love to snowboard, and when i see messages in my siblings’ group chat my initial reaction is to confirm i’ll meet them at the slopes, but then i realize that i don’t have that physical freedom. if i snowboard i’m at risk of my regular daily pain, an intense slip that can cause a more intense episode of pain, or even a slip that causes pneumothorax. then i have to erase my excitement to do what i love and break the news that i must lay flat on my back in bed all weekend. i often forget i’m restricted from doing those things until i’m making formal plans or try it myself, and then the realization appears. even when i’m doing daily tasks this feeling comes up, since i’ve struggled to lift off my back to wake up or bend over to spit while brushing my teeth. it’s surreal for me realizing that i do in fact have a chronic syndrome that has taken over my life, and it progressed so fast. does anyone else feel this way?