I’m just really trying to survive this breath by breath each a victory, everyone looks up to me as an inspiration and I often think they just want to see that out of me and not see all of me. I get lectured about sleep schedule me not wanting a cure but i do want the cure for everyone else and how like so many people I should be more proactive do more things. Yet none of these people get that i’m doing as much as I can and I do what I can when I can. There’s nothing wrong with having a seizure in bed instead of on the floor which is what happens most the times I get up and walk across to the kitchen, other days I can go for walks to the lake. It’s very odd and I can’t change my schedule if I tried. I’m lucky I get so much sleep. These muscle seizures aren’t anything I can control and if I could they wouldn’t exist. This disease is so complicated you couldn’t straighten it out if you tried, which I wish more people would so we could get something.

but I feel like this

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