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.

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