Someone recently told me how upbeat and positive on social media I always seem. It struck me that we truly never know what someone is facing.
I do my best to shield the outer world from my pain because at times it's so overwhelming.
When I'm asked how things are its always the vague "I'm hanging in there."
So here's the truth: I'm struggling.
I apologize in advanced for the whiny post ahead but there is light and beauty in sharing my truth.
I decided to share my journey for awareness three years ago. Mainly so people would have an inkling of knowledge into the life of the chronically ill.
My friends and I joke about every time something goes wrong in my body by saying "all aboard the struggle bus."
But the struggle bus is actually real. And it's filled with many different people.
Not only am I dealing with seizures and syncope, but there's also the matter of my faulty organs, completely losing the ability to swallow, pee, see, and breathe at times. Being stuck in a body you can't control is terrifying. Being consumed by nerve, joint, and bone pain is just exhausting. Trying to go shopping with your friends only to realize that if you stand too long you might be stuck in bed for the next few days. Or wanting to go out to eat but being allergic to everything on the menu. I'm not gonna lie to you, it's not easy. At all. Constantly checking and correcting things in my body in fear that if I don't keep levels between very strict guidelines, I could spend the next week in a hospital bed. I know how to check vitals, draw blood, administer rescue drugs and access ports. This is not something a 20 year old should know without training.
But, alas, its just another day on the struggle bus.
I do my best to shield the outer world from my pain because at times it's so overwhelming.
When I'm asked how things are its always the vague "I'm hanging in there."
So here's the truth: I'm struggling.
I apologize in advanced for the whiny post ahead but there is light and beauty in sharing my truth.
I decided to share my journey for awareness three years ago. Mainly so people would have an inkling of knowledge into the life of the chronically ill.
My friends and I joke about every time something goes wrong in my body by saying "all aboard the struggle bus."
But the struggle bus is actually real. And it's filled with many different people.
Not only am I dealing with seizures and syncope, but there's also the matter of my faulty organs, completely losing the ability to swallow, pee, see, and breathe at times. Being stuck in a body you can't control is terrifying. Being consumed by nerve, joint, and bone pain is just exhausting. Trying to go shopping with your friends only to realize that if you stand too long you might be stuck in bed for the next few days. Or wanting to go out to eat but being allergic to everything on the menu. I'm not gonna lie to you, it's not easy. At all. Constantly checking and correcting things in my body in fear that if I don't keep levels between very strict guidelines, I could spend the next week in a hospital bed. I know how to check vitals, draw blood, administer rescue drugs and access ports. This is not something a 20 year old should know without training.
But, alas, its just another day on the struggle bus.