consistent, inconsistency
the erratic nature of chronic illness
I want to start off by acknowledging my last Wednesday Commute. I realize I published something this past Friday—and it may come off as fickle, but I did need that break in the routine.
Life will always continue to move whether we are ready for what is next or not. However, that doesn’t mean we shouldn’t take time to slow down, take a beat, and shift our perspective. Though I was what felt violently pushed into shifting—re-establishing safety for myself is a new(er) skill that I am glad I utilized in this moment.
There have been many things that have raised my hackles in the past and I just forced my body through—and not only was it painful but it was unsafe, resulting in me further burrowing into myself. I don’t want to do that. So, I hit slow down, I talked with friends and loved ones about my feelings, and I feel so ready for whatever new things come from this space.
Thank you for your grace.
Last week during my pause I had my first full blown flare up in a very long time.
It started slowly, and unfortunately after a wonderful day. I started my Saturday with some of my favorite things: sweetness, heart warming conversation, laughs, delicious Matcha, a nail appointment, more laughs, a nap, some self care, and a planned night out with friends. I ended up having to cancel my plans to tend my body—implementing all the tools at my disposal and rest most importantly. I am thankful for the wonderful people in my life who took the last minute cancellation in stride.
On Sunday, it seemed I was mostly in the clear. Like 90%. I was fatigued but not in an alarming amount of pain and the physical manifestation of my illness seemed at bay. I still took the day to do the things I had planned. Sunday was my self date day. I even mentioned it in my last log, I planned to return to doing something for and by myself, intentionally. I still stuck to that plan, moving slowly, but still pouring into myself and things I enjoy. I truly felt in the clear!
Until Monday. Monday I woke up and my body felt like it had been run over, and my face…my face hurt. Like air hurt. Not the wind, air. My pain receptors were in high alert and my body was fighting itself hardcore. I hadn’t felt this level of pain in years. The pain is one thing—but to have it physically manifest into a swollen face, swollen hands, painful red spotted skin, dry splitting hands. The physical fucks with me on a psychological level that is hard to explain.
It all fucks with me.
How does one work to trust and love oneself in a body that is not trustworthy. A body that attacks itself? With no cure? How many times must I be taken to below base level and rebuild?
I am proud of myself—I often suffer in silence until I am questioned by others about my disappearance, because most often a flare triggers a deep season of self isolation. It’s hard enough to look it myself in the mirror, let alone leave the house.
This time I did not do that. I went to bowling. I showed up for my friend’s opening. I said “yes” to events and spending time with others.
How incredibly resilient and powerful and what awesome endurance I have… I always have to have and to be.
I am tired. Because there’s the physical and emotional of the flare, and then the emotional and psychological of still being able to engage with others while operating with nothing. To show up in conversation and community with the same care I would offer someone else in my position. To still show up and perform for my job. To still caretake for myself because I am alone in my day to day.
It requires a level of dissociation to move through the world while experiencing that pain and still do anything.
So, unfortunately while writing this, I am still coming out of the fog. Hence the name of this week’s piece—there are moments of stunning clarity and moments where for safety it feels like a blur and frankly irrelevant.
There is a consistency in the way a flare breaks me down, and an inconsistency in the flares themselves and when they may appear. They require a flexibility and grace that I even find hard to access for myself, let alone ask of others. Things seem erratic because they are.
I am not though. No matter how fucking much I hate the word resilient, I am. I am just hoping for more softness as I work my way back to base level. And I am asking you to hope the same for me as well—and if you can offer some, I will take all you can share.