Life got lifey
Plus, a jittery book reading, big big research, and Substack fun
Welcome to The Tonic, a light-hearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.
Please note: my posting strategy is changing in response to my ever-shifting availability of energy (often referred to as ‘spoons’). I will generally post once a week on Saturdays or Sundays: a narrative post when my energy allows and resource roundups (known here as The Antidote) at all other times. Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.
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The Tonic is free to read - Amy is so happy you’re here! There is no paid subscription option here like with other Substack newsletters. However, if you are valuing the experience and are able, please consider a show of support by sending a gift of health, wellness, or joy from this Amazon wish list. Anyone who does gets a 📢 in an upcoming post. Thank you!
Life got lifey
Well, my friends, I do not have a voluminous post for you this week. This has been a doozy of a week, starting with some kitty health news that we will be dealing with in earnest for the next several weeks. I’m not ready to share details on that yet; suffice to say it is upsetting news and rattled my nervous system.
The other nerve-rattly thing that happened this week, but in a good way, was our book reading for The Long COVID Reader, which took place yesterday at my local bookshop and online (a hybrid event).
I was nervous for a few hours beforehand and tried to take care of myself, though I kept doom-scrolling on my phone, which always exhausts me. I have not usually been particularly anxious about speaking in public; I did it a lot during my career and had come to even enjoy it. But something funny happens to you when you have been away from a thing for too long: it takes on an altered meaning and can seem larger or more daunting than it used to. I was also anticipating deleterious effects on my dysregulated nervous system afterwards, and that just made me more anxious.
I saw a clip last week of Kelly Rowland on the Kelly Clarkson show, and she was telling KC about an acting role that Tyler Perry wanted her to consider that she felt was too far out of her skill level and therefore comfort zone. She called a friend, who gently reminded her:
if it doesn’t scare you, what’s the point?
So I kept playing that over in my mind and telling myself, “this will be good for me, this will be good for me.”
And indeed it was. There were some tech issues getting the event going; this was the first time the small community bookshop had done a hybrid event. The set-up issues made me a bit anxious as well, as I imagined we were losing some of our Zoom attendees with each passing minute. Luckily, the in-person audience, the bookshop owners, and the panelists all worked together to come up with the necessary fixes/workarounds, and we only started about 15 minutes late.
After introductions, I was the first reader. I felt my nerves with every word. I also got very thirsty, but I kept going. I tried not to speed through and I tried to periodically make at least some eye contact. I was so very thankful to have Baldy and a few friends in the bookshop audience - people with whom I had once worked. Little did they know that my essay was about having to give up my career because of Long COVID. I did not anticipate how deeply meaningful it would be to speak these words to people I once supervised and who I now love. That was the best part of the day.
The other long hauler panelists read their essays or poetry from the book, which were all quite moving. Then we held a Q&A discussion afterward, with wonderful audience engagement both in person and via Zoom. All in all, it was a great success.
After the event, when I got to hug my dear friends and talk with them for a few minutes, I felt an enormous sense of both relief and satisfaction. As Baldy and I walked to the car after, I felt physically shaky, like I had an insane amount of pent-up energy coursing through my body. While my first instinct was to go home and lay down on the couch, I remembered learning recently that energy like this has to be moved through the system before you can properly rest. It’s the same way when you have a trauma response; physical movement can help clear the trigger from your body. So when I got home, I rolled out my yoga mat, did a few minutes of grounding followed by about 15 minutes of floor exercises and stretches. I felt so much better after all this. I still had trouble falling asleep several hours later, but eventually I did and was fine. My nervous system hasn’t been amped up for hours like that in a few years, so naturally it took time to work through. I’m happy to report that I am not in a crash state today, and that I actually feel pretty good physically. We’ll see what tomorrow brings, as my post-exertional malaise (PEM) is often delayed by 48 hours. Fingers crossed that I don’t have PEM and that this whole event and the aftermath could be another sign of my slow but steady recovery.
Lastly, if you want to buy The Long COVID Reader (and you should; it’s full of excellent writing by both established writers/poets and bumpkins like me), you can get it here.
Long COVID and ME/CFS
There have been some significant research findings published this week and I didn’t want to leave you high and dry. The best place to go to read about it all is in
’s newsletter:
Dr. Topol and Dr. Ziyad Al-Aly also published a great piece in Science this week: Solving the Puzzle of Long COVID.
Embedded in their work is a summary of the big NIH study on ME/CFS that was finally published this week. I found this article on NPR to be easy to read: Clues to a better understanding of chronic fatigue syndrome emerge from a major study.
We’re gonna get there, people.
No After-party this week, but here’s a little fun for you
A few of my Substack co-working buds published some fun stuff this week. Check them out.
does some wacky-fun stuff with interior design and AI: walks us through this really light and fun piece that covers British culture, food, art, history, war, and the absurd. I got such a kick out of it. talks about what draws her to the sky (gorgeous pics of the sky near her home by the sea in England included).
That’s it for me this week, folks. Look for a new post next weekend. In the meantime, make sure to go outside, get some sun in your eyes, and look up at the sky.
In sickness and in health,
✌🏻 Amy
Aw, thanks so much for including me here! :-) Congrats on your public reading of the Reader - sound like it was a positive experience on multiple levels. 🧡 ps I love your title, Life got Lifey - so good!
Can I just say congrats on the book reading. How exciting was that?! And in a bookshop as well!