The hardest part of being chronically ill/disabled isn’t, for me at least, the pain. It’s the loneliness.
I can’t make spontaneous plans anymore because I have to know if everywhere I go is handicap accessible. How long will I need to be on my feet? Will I be able to sit down? Am I too tired? How long do I have to sit in the car? Do I need to drive? Do I need meds during the time I’ll be gone?
My entire life feels like a question mark sometimes, and that’s hard, but not as hard as the lonely feeling I get from my disability.
We need to run to the store quickly? I need to stay home, I can’t move too fast. Going to Target? Their scooters always die, I’d have to use my walker and I can’t stand that long today. Car? Can I sit up straight that long?
It’s lonely having to say no to plans, or needing special accommodations when you do go out. It’s lonely watching your friends go to events that aren’t built for you, that your body would easily leave you bed ridden for days just for trying. It’s lonely being unable to go because there’s no parking available, because you’re too medicated to drive or leave the house. It’s lonely when all your friends have graduated college and the only news you have to share is your latest doctor’s appointment and med changes and still no answers.
Being unable to try on clothing in stores because some jack ass with three kids decided to take up the handicap dressing room isn’t just frustrating, isn’t just humiliating, it’s lonely. Because I’m stuck, holding my clothes, being stared at, and unable to even try something on to tell if it fits. Old buildings I can’t get into or use the bathroom at make me feel lonely for not being able to do what others can especially when I’m out with friends.
My roommates can attest that even when I feel like shit I don’t like going to bed, especially during the day. Because there’s maybe a fifty to sixty percent chance my meds work and the pain stops, during the day if I can’t take my heavy meds there’s basically no chance, and going to bed means going to my room to be alone and in pain. Which is terrible. I don’t want to be alone when I feel bad and I don’t want to have nothing to do but stare at my wall or try to read and desperately hope the whole time that the pain will fucking stop and I’ll feel like I can breathe again.
And it just kills me sometimes.@4 hours ago with 14 notes
#in which carson is a cripple #chronic pain #chronic illness #fibromyalgia