Fight Of My Life
Having autoimmune diseases is a hard life to live. Everything you have known has now been turned upside down and inside out. Each day is different and no two days are ever alike. This is a scary place to find you. No matter what you are told nothing can ever truly prepare you for what life is going to become. Life is going to go from a race you can win to a race that you have no idea how you are going to even find the starting point. It is going to make like unpredictable and alarming.
The world as you knows it is now going to be scarier than you can imagine. I am sure you are wondering why it is all of a sudden becoming so scary. I will let you in on the secret as to why it is has become scary; it is scary because these diseases are dormant. By dormant I mean that they lay in wait before actively attacking the body from the inside out. Each of my diseases affects a different parts of my body and they all don’t flare at the same time most of the time. There have been times when two or more will flare and my body goes haywire.
As someone with these diseases I am always waiting on the other shoe to drop so to speak. People think if you aren’t in a flare then you are fine, you are okay, and you are getting better. All of those thoughts are false though, we aren’t getting any better, we aren’t okay, and we aren’t fine. We are surviving the best way we know how. That is the thing with dormant diseases they are progressive. They are going to get worse and that is scary. We are constantly waiting on that progression, we wait to see just how bad it is going to get. I realize that I appear completely fine most days; in fact if I am not feeling fine I won’t leave the house unless it is for a doctors appointment. I try my best to make sure that no one can truly tell what is going inside of me.
There is days lately though that I think people can tell something is not quite right. I am walking slower, I have to think of my words more carefully, and my face looks like a pizza pie exploded on it. My days are scary, my life is scary, and I have to deal with that fact every moment. I would like to try and not think about what is going to come next but with these ailments I have to think about the future. I have to figure out when I think another flare will come even though I can’t truly know. I wish I had known at the start just how invasive the thoughts of this disease would be.
Every day the thoughts invade and permeate all points of my life. These thoughts are intimidating to have to deal with as well. Dealing with them for so long though has made it seem like I am stronger than most. I am not bragging or dismissing anyone else’s struggles, but when you deal with the thought of death, paralysis, or being cripple every day it makes you either stronger or weaker. I have chosen to be stronger and not let this weaken my self-resolve. Those of us who deal with chronic pain, illnesses, or diseases seem to be a stronger lot than most “normal” people because of what we face daily. Most people can not seem to even imagine a life like we lead, admit that something this horrifying could happen, or be willing to acknowledge that one’s body could slowly kill it from the inside out.
Those of us who deal with these monsters have to decide if we are going to let them be in charge of us or if we are going to fight them with all we have. I have chosen to fight these diseases. If I could go back and talk to the newly diagnosed Katie I would tell her that she needs to accept her fate but she needs to fight it early from the start. Don’t delay in getting help and do as much research as you can. Life is going to be like living with the world’s worst roommate who at every turn is trying to sabotage you. We have to find a way to live with the dormant, obnoxious, roommate and fight the battles as they come. Like life these disease are always changing. Some times it is a good change other times it is awful but we have to fight and we have to learn to deal with it. So I am still learning to live with these dormant fighters and have them be beside me throughout my life. I can only hope for a cure one day and that these roommates will decide to move on out and leave me alone. Until that day, I will continue to battle them and live the best life that I can.