Be unstoppable. I believe that each of us battling a rare disease personifies this statement. And we prove it repeatedly, every day. It is our superpower.
Fighting for a diagnosis
I have indolent systemic mastocytosis (SM). My becoming unstoppable began with the years it took to find a diagnosis. Knowing there is something wrong with you while doctors repeatedly tell you all your tests are normal is hard to hear. Not only could they not find what was wrong with me, but in my case they started to suspect it was all in my head.
Read about Tara’s long road to diagnosis: “My 25+ year journey to diagnosis of indolent systemic mastocytosis”
Finally finding diagnosis after so many years was just the beginning of becoming unstoppable.
Getting through the day, every day
Those of us living with a rare chronic condition understand the incredible effort it takes to live daily life. We live life differently: I wish I could find a way to put into words how it feels. A good night’s sleep sounds amazing, but I would still wake up exhausted. A day when I feel my best still feels like I have the flu. Imagine having the flu and you must get up and function anyway, every day of your life.
Going to work, taking care of kids, cleaning the house, cooking supper, everyday chores and errand running are just a few things that must be done. It does not matter if you feel good or bad. And on bad days, just getting out of bed feels like a feat.
Even something fun like meeting up with friends is daunting most of the time. It takes so much effort to get ready that I am worn out before I even leave the house.
There are no fun days. There are fun moments during the day. You just wake up and force yourself to plow through until it is over. Then you begin again the next day. That is your superpower. Living one day at a time to the best of your ability.
Highlighting the wins
To ensure my day is productive, I use checklists. This makes it easier in my mind to see what all I must do in a day. Any task I don’t complete rolls over to the next day. This works well for me.
I always have a notebook with me. It includes my everyday chores and errands and everything else that needs to be done; I fill it out when something pops into my mind. This could be as simple as paying the bills, going to the store, washing and putting away clothes, taking my meds, making appointments, reading my book and writing my patient perspectives.
I put all that I need to do down in the notebook and use highlighters to mark each item. Bright highlighters. I can see that I have achieved something — it jumps off the page at me.
Then I see what needs to be done next. And I make it though that list every day. That is how I live my life… with a checklist and a highlighter. I function daily like this.
Grasping each moment
This all may seem sad, but I still love my life. I am still so incredibly blessed.
Life is beautiful, made up of incredible moments that give my life purpose. I have lived life to the fullest and intend on doing so for the rest of my days here on earth. I could have just given up years ago, but I would have missed so much! I do not take one moment for granted. Each opportunity that comes my way, I seize it. Even when it is out of my comfort zone.
This disease does not define who I am as a person. I make that decision. And my decision is to fight with all I have to continue pursuing my dreams. My decision is to grasp at each moment that brings my life joy.
Those moments become amazing memories. And I forget how hard it was on me to make them. They all just become moments of pure joy.
Be unstoppable.
