It’s hard to explain exactly what daily life is like. People ask me what’s new, family and the few friends I have. And to be honest not much changes. Because to be blunt, I barley left my bed until my new wheelchair arrived last week.
Until the motorized moving pink robot arrived last week I was in a prison; caged in by the invisable bars that is my disease that keeps me trapped in my bed. Like a giddy child on Christmas morning awaiting to see what Santa has brought, I was rolled out to our entry way where my Pink throne awaited me. My new motorized wheelchair is PINK and fast and goes every direction. And having freedom is amazing. It’s indescribable. I relied on everyone for everything. Now I run into walls and bang my paining body, but freeer than before. But my body still says you’re in prison.
My body is a prison with the walls of my bedroom locking me in. They are blue but perhaps in my mind has faded to grey. My bed that supports me is no longer soft as my muscles are weaker. The bed and sheets hurt.
My body is a prison. I can’t even pick up my phone because my hands are too flared. I can barley eat or drink from the pain of my failing, flailing body and rely on iv fluids for hydration coming out of a tube through my chest. My body is a prison.
My body is a prison my arms and legs they move erratically when I’m in too much pain. My limbs move as if no connnection to my body, they move with force and my back arches as the pain sears through. I have no control. I even hit myself uncontrolloby from the muscle spasms. I stutter. I am out of breath and often nauseas dizzy and even pass out hearing nothing but distant voices calling my name. My body is a prison.
My body is a prison. The pain is a prison. And I don’t normally write about the darkness because I don’t want to upset the family I have or make it to hard to read. But the reality needs this awareness. I don’t want to stop the conversation. I want to start a conversation about CRPS. I want Awareness and acceptance and I don’t want to be told this is made up or somatic. I want help for me and everyone else battling to their very very best with a horrifying illness.