bucket list grief

i can feel my body deteriorating day by day and it’s possibly one of the scariest things… i know what my future holds health wise- i have many friends/connections that are older with EDS, it only gets worse. there’s so many things i want to do… life goals, bucket lists. and i feel like im running out of time to fulfill these dreams simply because my body is giving up on me. every-time i feel ‘worse’ i fear that it’s going to be the new normal…. that every setback is permanent because i know eventually it will be, it’s just a matter of time. i look around and i see all that everyone else can do…. how they look at and judge me for what i can’t do, how some doctors even look and judge. they can’t see the pain or the effort that i try to put into living. i just want more time with my body… time without pain. i wish i had known when i was younger what would come to be. had i treated my body better would it be different..? i’d still have this condition but maybe it wouldn’t have escalated as fast. i wish more people understood what it was like, had sympathy. i’m tired of being judged for what i cannot control… the pattern of being judged and then pushing myself to do too much just to have a setback and be in excruciating pain. having an invisible illness is made all the harder by the fact that it’s invisible. others don’t understand nor care to, they just judge. assume you’re lazy or seeking attention…. trust me if i could, i would. if i could do the things i wanted to right now without barriers i’d do it in a heartbeat. but they’ll never understand. and i’m tired of trying to explain. so i keep pushing myself, and with each push i set myself permanently back more and more…