On finding freedom in illness

Creating and sticking to a daily routine can be a critical part of symptom management.  The sense of unpredictability in chronic illness can be overwhelming, and daily routines and rituals can help us to gain greater control and predictability of our symptoms.  However, figuring out the routine that works for you, and then sticking to it, is a challenge in itself.  I find myself struggling against two things: First, on both good and bad days, I’m tempted to deviate and fulfill the urge to simply do what I’d like.  I struggle against feelings that this illness has consumed my life and my voice, and I want to rebel against the confines of a routine.  My will does not want to recognize that my freedom & independence are actually fostered through the stability and predictability that comes with sticking to effective daily routines for symptom management.  Second, I struggle to create a routine with sufficient flexibility to account for the variability of my symptoms.  On good days, I’m able to stick to my exercise routine, prepare food, shower, or even socialize.  Other days, I need to scale things back, and find myself struggling against the urge to push myself, driven by the long list of “shoulds” in my brain.  It’s an ongoing process of trial and error, requiring a higher level of self-compassion than I am typically able to offer myself.  I also tend to overemphasize scheduling pain and fatigue management techniques, and forget the importance of scheduling time for just enjoying.

Patient Practice: Changing our habits and routines can challenge our sense of self and we can feel the loss of spontaneity that we once had.  Brainstorm one or two ways to reclaim your routine from your chronic illness.  Is there something you love to do that you set on the back burner while you’ve been prioritizing symptom management?  Is there a daily ritual you can incorporate that is simply just for fun?  By making your routine your own, you increase its sustainability while reclaiming power from your illness.

On balancing expectations

 

As a follow-up, since recording this I’ve found a few great solutions to routine out-of-the house “to dos:” 1) switched to a local pharmacy that delivers to my house; 2) found a produce delivery service to help minimize stress of grocery trips (which largely falls to my significant other, due to the highly physical nature of grocery shopping – WHY do they make stores so large??); 3) reached out to a few friends to help me once or twice a month run errands by driving me and helping to carry things and/or provide balance and walking support when I need it. Next up to work on new adaptations for: laundry and dishes! I’ve also reassessed my current abilities and expectations, and have adjusted my out of the house commitments to match, such that I only have 1 out of the house appointment per week in order to try to minimize the amount of rescheduling I do as a result of pushing to do too much and then crashing. It is an ongoing process of trial and error!

 

On the Delights of Living with Others

I recently moved into my new nest in the heart of the Mission and am being reminded what a joy living with others can be. I’m presently sitting with my door open, listening to my housemate, who I’m fairly certain thinks he’s alone, sing and play his guitar. I hold pleasures like these with others like watching loved ones sleeping or a cat awakening barely enough to stretch and roll over only to continue with his nap. The things we do when we’re alone are, perhaps, some of the most human, most beautiful. And we hide them away, divulging them to those with whom we’re closest, if those. I have a bad habit of drinking in these private moments quietly and in secret while smiling to myself. I’m that kind of housemate.

Forgetting we all live our secret lives in the privacy of our own homes is easy. We’re all musicians, dancers, authors, painters. We’re all children when there are no witnesses. While not all of us practice our freedom formally or ritually, we all have a practice. If you’re lucky enough to live in an old house with little-to-no sound barriers, you can serve as a witness to the freedom of those with whom you live.

While I sheepishly whisper Spanish at my computer, learning the language, my housemates quietly play guitar behind closed doors or not-so-quietly play synthesizer from within the kitchen ceiling. For now the shower is my stage, maybe next week, the living room.

-Ellen