I had to peruse my past posts to see if I had used this title already. Turns out, nope, despite feeling all the grief these past years, something else always won out. Speaking of which, may I take a moment to revel in 18 published posts and 8 drafts—who is she?! I’m also feeling proud.

I’ve been shot to hell this week. Dave is playing bass in Nashville with Sarah Gross (she’s amazing) and sh*t hit the fan while he’s away. Murphy’s law and all that.

Our pup, George woke up the first morning mostly blind. Then my sister-in-law’s dad passed. It was sudden and heartbreaking, and I wish I could support them more than I’m currently able. I missed out on taking my nephew trick-or-treating, a welcome reprieve for them after a really rough week. And the supplies I sent came to my house instead of theirs, thx to brain fog. I’m doing the best I can, I repeat to myself.

Turns out, my remaining fatigue wasn’t “just” anemia. Not only did I have a ferritin of 5—how am I alive, to quote the supplement salesperson—but my PEM (post-exertional malaise) has returned after hopefully stretching my limits the past couple of weeks: a trip to the city; a (seated) Jeff Tweedy concert; a puppy adoption event at a local brewery; and many spooky movies leading up to Halloween. These limits are in outer space compared to where I was, when severe. And healing isn’t linear. I know these things logically, but it doesn’t stop me from feeling crestfallen. Defeated.

Don’t get me wrong, I’m grateful for my newfound resilience in the face of stress. I’ve been able to live independently for several days, take care of the furboys, do some online Christmas shopping, and listen to TV reruns and audiobooks with my eyes closed. This is still a pipe dream for many with Long COVID and ME/CFS.

That said, I really wanted these four or so days to paint, to work, and maybe even binge watch the new season of Nobody Wants This (I do, I want this). You know, a little staycation to make up for not having the energy or funds to join Dave on a real adventure, just yet. A wee bit of romanticizing life in the midst of, well, the horrors.

I’m not looking for advice or other interpretations of my experience. I’m deciding to sit in the grief, the frustration, the longing—the sh*t, as they say. That’s not just okay, but needed sometimes.

I also processed by writing a couple poems, which thankfully helped my crushing forehead pressure dissipate. I’ve decided to share them as an example of something I think is pretty healthy to do. Writing them helped me name and close down a couple “programs” running wild in my mind (frustration, doubt) so I can focus my energy on a 45-minute drive to the funeral home later this afternoon.*

-forcing bees-
I like myself better when I’m doing more
I’m not sure when that became a crime
Like forcing bees to sit and wait
When they’re built to build a hive
I’m not asking to be busy for busy’s sake
Overworking till I die
I just want to want to feel the sun
I just want to be alive.

-hypothetical questions-
Is this illness real or in my head?
Can I let it go and get on with it?
Right now, it doesn’t feel that way
But hey—nothing’s real, right?
Does my “energy go where my attention flows”
Or did I lose touch with me?
Which me knows me, really?
Did I convince myself I was okay?
All I know is, then I was.
All I know is, now I’m not.

I should note that I didn’t sit down, blank paper, pen in hand, and write these out. I started by scribbling, scrawling, crying, letting my hand move with a mind of its own. Then I got into the space where I could turn sh*t into poetry. I hope it helps someone.

*While I’m not feeling entirely stable today, I consider the service to be non-missable, so I’m about to eat some chicken and crack a Recess mood for support. Someone else with Myalgic Encephalomyelitis might make another choice, and that would be more than understandable. I don’t advocate for pushing through as part of healing. Only we have to live with the consequences of how we choose to use our precious energy.

Thank you, as always, for being here,
Lisa