When rest isn't restful

I wrote the first draft of this post last weekend for #1000WordsOfSummer. I've been thinking about it all week so I spent some time revising it this afternoon and ultimately (obviously) decided to share it here.

I tried to rest today. I haven't checked Twitter or Instagram since I hit my 30-minute time limit, I've read a bit, journaled, and let myself sit in a hot shower.

But how much of that rest was erased when I later had intestinal acid leak out of my stoma and I had to rush to clean it up before it burned my skin or got on my clothes? How much was erased when I took the time to set up my feed? How much was erased just now when I checked in with my body for a moment and noticed that the right side of my back is aching all the way down and my limbs feel heavy despite doing nothing but sedentary activity for how many days now?

I used to believe that energy was transactional. That I had an amount of energy available to me and I could decide how much I used and when. That I could refill my tank by finding ways to recover. I mean, they say calories in, calories out, right? Calories are energy, so it must work that way, too.

But we know that calories in, calories out is bullshit. The idea that energy would be so simple is so obviously untrue to me now I wonder if I ever critically examined it in light of my own experience, or if I just appreciated that it was easier to explain to other people. I imagine, too, it was easier for me to believe before my fatigue became so much more ruthless.

In any case, the Spoon Theory, created by Christine Miserandino, resonated for awhile. It was back when I was first beginning to understand chronic illness—that there was a lexicon, language, community of sorts for what I was going through. It helped me to try and make sense of why it was so much harder for me to do things than my healthy peers, why trying to keep up would exhaust me for days. It was a helpful metaphor (it's not really a theory, is it?) to explain to friends and provided a way of communicating how I was feeling. I was a "spoonie" and I wasn't alone.

Now here I am—almost 30, the sickest I've ever been, likely to get sicker—and the once-helpful metaphor doesn't make sense to me anymore. There's something that feels infantilizing about it, for one (something I already struggle with since so many resources online related to feeding tubes are about small children). "Spoonie." While I have no judgment when others identify that way, the term feels very young and small to me, and I am only one of those things.

But mostly, it's that I've come to realize there's no such thing as reserving or restoring my energy. I can't save "spoons" by not showering now in order to have enough to go for a walk around the block later. I can't skip an event today to have energy for one tomorrow. There's no guarantee. I don't start each day, week, month, with an allotment of energy I get to budget out. Sometimes, in a given moment, I can't even tell how much energy I have.

And it can all change so quickly, too. I can be relatively okay in one moment and not at all fine the next. (Relatively, of course, is the operative word here. What I consider okay is not a non-disabled or healthy person's okay.) I might be—outside of a pandemic, of course—sitting with friends and enjoying conversation, and then suddenly overwhelmed with the need to be home, and consumed with the dread of knowing how hard it will be to get there, get in pajamas, get ready for bed. Back when I worked at an office, I would often end up staying later than I wanted simply because the idea of walking the 6 or 7 blocks mildly uphill to catch the streetcar, waiting for it to come, potentially having to stand for the 15-minute ride, and then walking the three blocks home from the stop was too much.

I'm constantly thinking about things in terms of measurement. How many blocks will I have to walk to get to my appointment? How many steps is that, approximately? Will there be stairs?

Even when I am lying on the couch in the evening, the work that it takes to get ready for bed can seem astronomical. Flossing and brushing my teeth, washing my tube pad, cleaning my stoma, applying Calmoseptine, covering it again. And then there's flushing my tube, clearing any formula clogs, bending over to get more formula out of the cabinet, refilling my feed and water bags for the night, rolling my heavy IV pole into the bedroom. And then changing into something to sleep in: bending down into my drawers to find clean pajamas, sitting to put them on. If, after all that, I have any energy left, I'll wash my face.

I often don't manage to wash my face.

It's ironic that the things that are supposed to be helpful and maybe even restful are themselves so much work. I haven't tried to take a bath yet since my tube was placed.* I'm nervous, mostly, about being submerged with an open hole. It's unsettling. Baths, which were once a calming and regular thing for me, are now forever changed.

Sitting on my shower chair with warm water cascading over me does feel nice, and also everything that comes after a shower—carefully drying my stoma, putting a barrier cream on, covering it, drying my body, getting dressed, reconnecting to feeds—is so much work, not to mention showers exacerbate my dizziness, tachycardia, and pre-syncope brought on by POTS.

Face mask treatments are helpful for my skin—which these days is broken out and unhappy—but require effort to wash off after, and even that can feel like a lot. Lying around and reading, which I do often, results in joint stiffness and pain. Going out for a walk requires me to move my feed set and pump into a backpack, which is its own hassle, and the walks themselves usually exhaust me and make my muscles ache unpleasantly.

I've been considering trying meditation again, something I can maybe do when sitting or lying down, something that's guided to help me breathe a little each day, and also I'm nervous about the idea of spending more time in a body that hurts and feels so broken. I wonder if part of its brokenness is that it has been doing its best without me present—without me here.

But then, where am I? If I'm not here, I must be somewhere.

Sometimes I'm observing from the ceiling or from across the room, watching myself go through the motions of living. Sometimes I'm in another time altogether, living out what could be but might not be, what could have been but wasn't.

I used to think my mind was trapped inside this body that doesn't work—that it was me and my mind versus. I know now that my mind and body aren't two separate entities but one. I don't exist without both. Even when I am disassociated, as is the case most of the time now, I am still a part of my body. It is not my temple, as the appropriative platitude suggests. But it is my home. It is me.

Knowing that doesn't resolve how sad I feel these days, nor does it make me any less exhausted. But it does help me go through the motions of self-care, regardless. It helps me choose to get up in the morning when I need to flush my tube and clean my stoma. It helps me choose to reconnect to feeds even when I know they might make me feel worse. It helps me choose to shower even though the aftermath sucks. Because, really, they're all choices, and with each of them I choose to keep living.

*This weekend, to try and manage incredibly painful trapped air in my GI tract, I took a bath. It was difficult and weird, but okay. It was a lot of work.