When day breaks and the dogs stir, my eyes crack open. My first thought turn toward them and my husband and I am filled with gratitude to be here another day, that I get to spend it with them, that I get to love them. I’ve trained myself to wake up with a grateful heart since my sarcoidosis diagnosis. Prior to getting sick, I used to wake up with a crazed mind of worry, feeling overwhelmed about the day’s responsibilities and how I would ever manage to find the energy to rule my world and get it all done with perfection. I no longer worry about perfection. Now I think about how to be happy and I have sarcoidosis to thank for this.
Once I am fully awake, I do have to stop though, and assess. What hurts today? Every time my feet hit the floor in the mornings, I do feel the full weight of my disease, every joint moans a little, every bone creaks and cracks a little. I have to assess how tight my chest feels. Do I need to start the day with my inhaler or can it wait until after breakfast? Oh and breakfast. That’s something I have to talk myself into eating every day. Rarely do I have an appetite but I have trained myself to eat breakfast because it does give my morning a little boost of energy.
Some time during breakfast comes what I like to refer to as my “fatigue analysis”. How sluggish do I feel? How heavy are my muscles today? Do I need my waste high boots to slog through the mud and muck of my everyday physical exhaustion today? Will I need a nap or will this be a good day? This is an important part of my day, this investigation of my energy, because it provides direction for the day.
Each morning includes a little pep talk, a release of guilt for what won’t get done and a healthy dose of self motivated encouragement. I tell myself that today is the only day I have and that all I can do is the best that I can today. I let go of expectation and set my course for what needs to be done. Some days I exceed my goals and others I fail miserably. I have to remember to celebrate the success and let go of the failures.
A morning the day of a life with sarcoidosis requires a new kind of disciple, a different perspective because life has changed. I am not the same. Physically, things are harder for me. Sometimes much harder than I’d like to admit. I struggle with this, I won’t deny that. I hate it. Every day demands that I practice the tender art of acceptance. I must accept things as they are and me as I am. I must start each day’s journey in a place of loving forgiveness, for I did not ask for this disease but I have been saddled with it. Accepting this reality without judgement or question removes the barrier of self-reproach. I am better able to just live. I am better able to appreciate what is before me and I can let go of regret.
Living with a chronic condition is not easy. I need not make it harder than it has to be. A morning in the day of a life with sarcoidosis requires that I remember this every day…one day at a time.