This is not a post out of depression, but rather to highlight the harsh truth that many individuals with chronic illnesses face. At the time I am writing this, I am in the midst of one of the most severe full body CRPS and dystonia flares I've ever had. Please pardon any grammatical errors and sentences that may not make sense.
With every day that passes, each one of us is dying. We have one day less to live and it is a reality that no one really thinks about. As a teenager, we are supposed to be in the most carefree time of our lives. You don't consider any of this until you've stared death in the face and realized that your days are numbered. You see, when you live with chronic Illness you become much more acutely aware of the time passing you by. During my pain crises, I lay in bed for days hoping and praying for the pain to go down. I countdown the hours until I can have my next dose of medication in hopes that it will relieve my terrible pain. It never does. You don't see me biting my blanket to keep from screaming at 2 o'clock in the morning, so please don't judge what you don't fully understand. My CRPS ridden body does not care that I have been days within restorative sleep. It doesn't care that I have gone days without holding down food and water. CRPS doesn’t care if I can’t button my own shirt or tie my tennis shoes. It doesn’t care if I want to brush my hair. The CRPS does what it wants and I am forced to comply whether I want to or not. I have learned over the years that it is usually best to listen to what the CRPS is telling my body or it will get mad and make me even sicker.
Comments of "You look great!" and "But you don't look sick!", said with the best of intentions hurt. It is a reminder of how hard I have to work to keep all the pain and sickness I face each day out of the sight of others. Out of sight, out of mind, right? Maybe it's that way for the people that interact with me, but for me? It's a constant battle with no end in sight. My only chance of being liberated of this chronic pain has long been shut down, with no chance of ever coming back. "It could be worse" is little comfort to me. This comment discounts everything that I have gone through and that I make currently going through. Yes, it could absolutely be worse, but at the same time, no one deserves to live like this. All this considered, in this very moment, I'm not living. Life is passing me by one day at a time.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!