This is Day 97 of the Positive 100, a countdown to Rare Disease Day 2014 and an exercise in being positive despite it all.
Battle. War. Fight. These are the words we use to talk about surviving and coping with illness and disability. I often talk about my battle scars or how I struggle and fight. In the health arena, going to war is a good thing. It means you are present in your struggle and you haven’t given up hope.
But these aren’t battles fought by soldiers on enemy fields. These are wars being waged in our bodies against ourselves – bodies and minds. Combat happens in bedrooms and hospitals. Arsenals are filled with medications and treatment options. Communities, families and friends are jointing the platoons.
And battles are never fun. Or easy. And they always leave a mark.
They are always worth it.
Each day I arm myself with my blankets and soft pants, an arsenal of medications and a community. I am not retreating because I refuse to end up in a wheel chair. Or to be a thirty-something with a cane. If it is in my power to delay or prevent, I am going to do it.
I will keep walking wherever I can and working in fitness even on the days my body would rather I didn’t. I will keep showing up for the nerve blocks even though I would rather see less of the hospital. I will fill my diet with more superfoods and a few
less cupcakes. I will take the time to charge my robot parts and I will be ok never joining a ski trip.
I will do those things because they will help me fight the stigma of chronic pain. They will help me maintain control over my body and how it works for longer. They are the weapons in the fight for control of my body that might just let me keep a stalemate going, until fighting to win becomes an option.
If I can fight a battle that won’t ever end, and do it with blankets and cupcakes, then I know you can fight yours. Maybe you are fighting for your body. Or maybe it is for your mental health. Or for respect from your boss and colleagues. It doesn’t matter what you are fighting for in your life, as long as you keep fighting.
How are you staying in the battle? Share your answer on social media with the hashtag #100positivedays on Twitter, Instagram and Google+.