Updated: Mar 24, 2020
Every morning. Without fail. In every city and country. I need routines. I need my mornings to be the same. It gives me a sense of ownership over my life in a body that can often feel out of my control.
I start with a guided meditation by Joe Dispenza. I roll over, turn it on. I lay my head back and do the things he guides me through. Sometimes with utter success, sometimes with spectacular failure. But, I do it.
I get up, start some water boiling for my coffee, and sort the rainbow of pills and capsules. At home, I put them in a little joyful buddha dish and on the road, they pour out of a small plastic bag. I take the palm filling dose in one slug. Washing it all down with a mixture of probiotics and greens in powder form. Then I wash that down with a fiber drink. I feel it all slip into my belly, which has been giving me fits and starts lately. I say a silent little prayer that they all disburse to their proper places and do their jobs well.
I gather up my nebulizer medicines out of the refrigerator, the nebulizer cups that were washed and dried the night before, and hear my early morning footsteps as I walk back to my bed. My cocoon. My nest. Every morning. The same.
I carefully re-assemble the nebulizer cups, put them in order from left to right, gather the rest of the small capsules of liquid from the medicine cart that I keep next to my bed (it’s on wheels. best invention ever) and I pour them in the same order. Albuterol. Pulmicort. Performist. Dornase. Lung openers, mucus thinners. Breath-makers. I attach the hose from the small book-size nebulizer machine from my rolling med cart. It revs up with a low growl and hum. The chemical fluids become inhaled mist. My daughter calls it the CF-vape machine. (dear young people, this routine is actually the result that you get from vaping. Take note. Irony at its best.)
On the road, I have the coolest little hand-held neb. I do two meds, not four.
This takes 45 minutes. During this time, I write, I paint with watercolors and retrace my steps from the previous day’s hike in my journal, I look at my phone. These days, I don’t look much at the news. Some of the nebs cause some serious jitters. The news compounds that effect. Best to keep it off knowing the world is falling apart whether I read the headlines or not. I focus on joyful and heart-breaking news from friends. I try to stay connected. I compose hand-written letters.
By this time, dawn light is breaking through and I can see the tree branches outside of my window. When I’m finished with my medicine routine, I move to my physical routine. I roll out my yoga mat. I place a small singing bowl from travels in Thailand on the floor. I light a small hand-made soy candle crafted by a dear friend.
I practice. I practice sitting still when I want to be running around. I practice putting myself in asymmetrical positions that challenge my ability to do hard things and while breathing. I practice patience. I practice letting my body guide me and letting my bullish mind take a back seat. I practice control and lack of control. I practice turning the world upside down and draining the thick mucus out of the deepest reaches of my lungs. I practice.
I roll up my mat. I shuffle into the kitchen with the dogs at my feet. I make a concoction of coconut water, cucumbers, celery, ginger, avocado, lemon, and spinach and fire up my beloved blender. Sometimes I get dressed in real clothes. I pack up my laptop, markers, journals, smoothie, water, coffee into a lovely basket and make the long commute upstairs to my office to start the workday.
Without this routine, I break down. My lungs choke up with thick secretions. My head fills up with anxious murmurings and a bullhorn of fears and failures. Two hours. Every morning. Rain or shine. Dark to dawn. Prescribed and self-prescribed. A fine blend of necessity and luxury - treatment for my body and my mind.
For other CF'ers out there - adults and children, if you haven't heard of the free virtual yoga classes on cfyogi.org, check them out. Brilliant. Compassionate. Helpful. All the things. @YogaForce