The worst part about having a disability has absolutely nothing to do with the illness itself. Does yet suck? Yes. The pain gets old quickly, it sucks having to constantly cancel plans because it hurts to breathe, and it sucks knowing there’s absolutely nothing you can do to make it better. It sucks having to take 3083408402 different medicines to just get by.
It’s hard to keep track of everything going on & having to talk to a million different doctors & keeping them updated on what the other is doing to try to manage a “good” quality of life. But still, nothing compares to the inability to do something simple.
You have to rely on those around you to do daily tasks that others don’t think twice about- like doing your hair or showering or going to get your favorite ice cream. I have to constantly ask for help, because I physically can’t do simple everyday things and it sucks. It makes you feel like the crappiest person & biggest burden in the world.
I know you’re thinking, I’m sure your friends & family don’t feel this way & I’m sure they understand. But put yourself in my shoes for a minute.
You can’t drive, you can’t shower or do your hair, you can’t put your shoes on or get dressed by yourself, and it’s a struggle to do simple everyday chores.
It hurts to think about it, doesn’t it? Now live that every day for the rest of your life- & add the burden of a crippling, progressive rare disease.
It’s hard relying on others, and just know, I don’t like relying on you- but I need to. It’s the only way I have any semblance of a “normal” life.
Though this has been my normal for my entire life, and will continue for the rest of my life, I don’t think I’ll ever get used to asking for help.
Carli Lyn 