So...what brings you here?

The Tonic turns two and we want to hear from you. Plus, the Antidote #42: long vax syndrome, the brain-gut-immune connection, and thieving foxes.

The Tonic is a lighthearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other health conditions. Come for the info; stay for the whimsy. Or vice versa.

If you are new here and curious about the tools that have been helping me in my long COVID recovery, please check out the Recovery Tools series tab on my Substack site. (Please start with part one, as it includes an important disclaimer about how highly individualized recovery tools can be with a heterogenous illness like long COVID).

The Tonic will always be free to read - Amy is so happy you’re here! However, if you are valuing the experience and are able, please consider a show of support by upgrading to a paid subscription. If that’s too much to bite off at the moment, you can also make a one-time contribution through Buy Me a Coffee. Any help is appreciated! Anyone who does gets a 📢 in an upcoming post. Thank you!

A lil’ check-in

The Tonic recently turned two years old, y’all. Two years since I’ve had to wonder, “will anyone care what I have to say?” Over 2,200 of you at some point said you did, either with your words, your gifts, or merely by subscribing and staying quiet in the background. However you have chosen to show up here has worked for me <smile>.

After two years, I’m still figuring out the Venn diagram of what I want to write about, what people want to hear about, and FUN.

For the most part, I’ve gone with a combination of the first and last one, eschewing the things that don’t light me up or that actively dysregulate me. I may occasionally throw a more serious topic your way, but I am constitutionally incapable of biweekly gloom and doom. Most of you know by now that if you’re here for the downside of things, you’re in the wrong place.

But lately I’ve been thinking about the second one, or the “so, what brings you here?” question. All of you have jumped onto this merry-go-round at different points in the ride.

man, those were the days…

What I mean is that I have both long-time subscribers as well as newbies, and I’ve been reflecting on why various folks hit subscribe and/or choose to stick around these parts.

I don’t mean this in an insecure way; this is not about my worth. I mean it more in a “what motivates people to be here, and how does that fit in with the ‘arc’ of my posts?” way.

On the one hand, there’s the Antidote. So…many…links. Maybe they are overwhelming at times, but my hope is that folks scroll through and click on what is of particular interest. If a lot interests you, maybe bookmark the post to come back when you have a bit more time. I often receive positive feedback from people who enjoy a good link roundup. And I love learning new things and curating the whole thing, so safe to say the Antidote section is here to stay.

On the other hand, there’s the longer narrative pieces (I used to separate out narrative posts from link-heavy posts, but now I just smash them together). While there’s always been somewhat of a thread of hope and humor running through my writing, my posts in the early days were a lot of observations about life with a disability. As I have moved through regaining my energy and experiencing fewer and less severe symptoms, my posts have become a lot more about recovery. About getting back certain parts of my life that I had grieved the loss of for five years. About the things I’ve grieved that I now know I’ll never go back to, and about the changes I’m making to my life that will make it different - better in many ways than when I was “healthy.”

This has been an exciting time for me, to be sure.

And yet.

I recognize some of you more recent merry-go-round participants may be struggling still. You may be newer to long COVID, ME/CFS, or another chronic illness. You may not have any of these conditions but experience other forms of disability that may be permanent, more static or unchanging over time.

You may be here because you wanted to commiserate. To get regular information about related conditions. To find a small corner of the internet where someone (and their readers) understands what you’re experiencing. To feel camaraderie with someone who didn’t shy away from their disability and who often shined a light on it.

But you may (also?) be here for a bit of hope and inspiration, and my writing honestly about where I’m at in the arc of illness/recovery might provide that little spark and maybe some helpful insights.

This is all entering the merge lanes of my skull highway at the moment.

How can I do my best to keep myself happy here (and thus motivated) while respecting the many and varied reasons why my readers are here?

Slight detour

To be clear, as you may have gotten from my posts of late, I am now in the land of, “I believe most people with a chronic fatiguing illness can improve their health.” Many can make a full or nearly full recovery. I always believed it was possible I’d get better, even when I only believed it 5% or 10%.

For some reason, this angers some folks in this community. If others have used neuroplasticity or nervous system regulation programs or tools to get better, they think we’re somehow endorsing an “it’s all in our heads” model of thinking. Or that somehow, we were never as sick as they are right now.

Both of those things couldn’t be further from the truth. For proof of both, see my Health Rising blog piece called My Long COVID Disability Journey, or my Substack post Long COVID in Pictures. I’d be offended by such assertions that I didn’t ever have severe, disabling long COVID; that I didn’t fight like hell to eventually successfully prove that to both private and government disability agencies. But I don’t waste energy being offended by that anymore, because I don’t need anyone else to believe me.

What I needed to do was to focus on putting my mind and body in the right state to give my cells and organs the best possible shot at healing.

Will that work for everyone? I don’t know.

But it certainly can’t hurt to feel into your body, to calm your senses, to create moments of joy, which in turn signal feelings of safety to your brain. It can’t hurt to feel lighter, more hopeful. You can still experience all this while you’re also experiencing symptoms. That’s a choice you can make.

Back on track

Detour over.

I don’t have any ready answers for how to meet my needs here and all of yours. As I move through recovery, I naturally find myself wanting to write less about being sick and disabled and more about what life is starting to look like for me now.

But I recognize that there is sometimes a fine line between loaning out some hope and creating a feeling of abandonment.

The truth is, I have become a part of the disabled community here on Substack and that identity over these past two years has not limited me; if anything, it has reinforced me. I have felt seen, heard, and less alone. I got support and perspective from so many here, both from disabled Substack writers as well as readers. I will forever keep opening my eyes to this community, to the range of experiences and insights that I couldn’t get anywhere else. After all, although I entered one specific nation in the world of the disabled, that world is vast and the experiences are incredibly diverse and very often beautiful. The learning never ends.

I will keep chewing on the questions in this post, and to that end, I’d love for you to tell me what brings you here.

I was going to insert a survey, but the Substack poll function is notoriously limiting; it doesn’t allow you to choose more than one response. So meet me in the comments section, if you would.

I promise I’m not fishing for compliments here.

I really want to know things like: do you like the links? Do you like the narrative section? Do you like both?

Are there just too many links and they overwhelm your brain? Do you prefer links about long COVID and ME/CFS, or general health links? Or do you prefer the lighter, After-party links?

Do you want me to keep writing about my recovery and related topics, or would you prefer I wrote about other things (and what would those be)?

I make no promises about where I’ll head, but I do promise to carefully consider the feedback. If you read my posts via email and prefer, you can simply hit reply to the email to share your thoughts with me.

Thank you for your feedback.

Thank you for being here.

we are a health newsletter, so here’s an anatomical drawing of my heart loving you

COVID, Long COVID, and ME/CFS

🤕 Long COVID and ME/CFS: a study about the symptoms and causes of symptoms.

🥴 ME/CFS: a new study of illness subgroups based on cerebrospinal fluid and blood-plasma proteins.

🦀 COVID and cancer: infection may ignite dormant cancer in survivors (free MedPage Today account required).

🤒 Post-viral illnesses: an excellent brief history, from long flu to long COVID.

💉 Long vax: Living with Post-COVID Vaccine Syndrome in a Long COVID world. Many thanks to The Sick Times for shining a light on this problem.

🍴 Diets and long COVID: a study looking at intermittent fasting and a no-sugar diet for Long COVID symptoms.

🤳🏻 Crowdsourcing long COVID: an opinion piece on the dangers of patients looking for cures amongst themselves (free MedPage Today account required). My take: Honestly, what did you expect us to do - sit around and wait decades for medical research to find us the answers? Ask the ME/CFS crowd how that’s worked out for them.

🧫 Brain-gut-immune axis: an excellent, if very sciencey, piece by Eric Topol. In his piece, he covers this incredible study: merely seeing someone who is sick triggers your immune system to act. WOW!

🚽 The gut: some GI disorders have increased since the pandemic (free MedPage Today account required).

😷 Unmasking mask hate: an excellent piece on the racial-criminal pathologization of dissent by The Disability Visibility Project.

🧠 Brains during COVID: they have aged faster, even in the uninfected!

Webinars/conferences/podcasts/videos/resources

♿ Navigating SSDI: a webinar on U.S. disability benefits hosted by Pandemic Patients on August 18th at 12:30pm ET. Register here.

💊 Low-dose rapamycin: a webinar on targeting autophagy in long COVID, ME/CFS, and related conditions, sponsored by Solve M.E. and held on September 4th at 6pm ET. Register here.

👨🏽‍💻 ME/CFS autoantibodies: a recording of a Solve M.E. webinar featuring the great Akiko Iwasaki, immunologist and researcher at Yale New Haven.

🧠 ME/CFS and the inflamed brain: a recording of research findings by Jarred Younger, Ph.D.

😢 Feeling your emotions:

Health miscellany

☠️ Genocide: This piece by Noha Beshir, titled How to Absorb a Nightmare, succinctly and hauntingly drives home the disconnect and dissonance of watching this horror unfold over our phones. The horror, if you haven’t been paying attention: Dozens of kids and adults in Gaza have starved to death in July. And On Gaza malnutrition ward, a child’s arm is as wide as mother’s thumb. And Aid workers, doctors, journalists risk starvation alongside people in Gaza.

⚕️ LGBTQ+ women and Medicaid: what happens when they lose it?

🤕 Symptoms never to ignore: according to ER docs.

🪭 Neck fans: do they really cool you down? I have one of these and all it seems to do is blow cool air right into my already dry eyeholes.

🥵 Summers: hotter than ever. Can we still enjoy them?

🤬 Government fuckery: it keeps churning on. Don't Be Fooled: Trump Is Gutting Our Healthcare System. And Trump administration to destroy nearly $10m of contraceptives for women overseas. And ACA health insurance premiums will spike next year, unless Congress acts. And Texas researcher may get deported after weeklong detention in an airport (he is researching a Lyme disease vaccine, FFS! But he got caught with some weed on him like 15 years ago, so by all means, send this hardened criminal packing. I CAN’T EVEN). But perhaps the biggest fuckery of all from the last few weeks: RFK Jr. halts $500 million for mRNA vaccine research. I can’t express the idiocy of this nor the outrage any better than Broadwaybabyto does here:

💤 Improving sleep: These 3 exercises may help with insomnia, study finds. *As long as you don’t have post-exertional malaise.

🏋🏼‍♂️ Iron: 12 foods that have more of it than spinach.

♨️ Microwaves: eight foods you should never cook in them.

🥛 Milk: Fairlife — the popular milk brand — and its many animal welfare investigation scandals, explained. We’ve been drinking a lot of Fairlife in this house. Had no idea they were owned by Coca-Cola and that their suppliers are rampant animal abusers, even when caught. Shameful.

😞 A “good” death: Dr. Lucy McBride with a poignant post about the personal nature of end-of-life choices.

Inspiration & Recovery

🎶 Dancing through life: a video with an inspiring message (at the end) by the creators of South Park. (It’s kind of ironic that this video is about how the best part of music doesn’t happen at the last note, and yet the best part of this video happens abruptly at the very end. Watch to see what I mean. Still, it’s a worthwhile message).

🐦 Frozen birds: you’ve heard of fight-or-flight, but ever hear of freeze? Check this out - from my own backyard.

🍸 No more Sex: Sarah Jessica Parker Mourns Sudden End of Alter Ego Carrie Bradshaw After 27 Years. Even though the Sex and the City sequel-series And Just Like That has been pretty terrible, I’ll still miss these gals. For those who have also been hate-watching AJLT, here’s a funny piece: How Did ‘And Just Like That’ Become So Divisive? Best line: “This show is awful. I’ma watch it tho.” 🤣 My feelings exactly.

👶🏼 You’ve come a long way, baby: World’s most premature baby celebrates first birthday. Click on the link and see what this teeny tiny peanut looked like when he was born. Pretty remarkable.

🤗 Profiles in joy: Celebrating Disability Pride During a Crisis. I’m a little late here, since Disability Pride Month is July, but really, it’s never too late for disability pride.

😃 Happy workers: the four-day workweek wins out.

🔬 RIP, Tom Lehrer: I didn’t know who he was until he died, but here’s the delightful video of his song The Elements (a cheeky ode to the periodic table).

🦊 Sly as a fox: stereotypes are sometimes kind of true, no? A Fox Has Stolen 32 Shoes (and Counting) in Grand Teton. Rangers Want It to Stop. “Maybe it’s a toy. Maybe it’s a nesting material collection. Maybe it’s fashion.”

🤦🏻 Buffoon of the week: scroll up to Government Fuckery in the Health Miscellany section. It’s RFK, Jr. A dangerous, stupid man. We will not soon recover from his brand of ignorant fuckery.

🏆 Winner of the week: let’s give it up for Katie Ledecky, who recently won her seventh consecutive world title in the 800m freestyle. “With the win, Ledecky remained undefeated in the 800-meter freestyle finals event on the world stage dating back to 2012. She has now gone 11-0 in major international titles in the event, including four Olympic golds.” Incredible talent and hard work!

🐈‍⬛ 💩 And finally, it’s this week’s Cat Dump. Operation Domesticate Ripley (ODR) continues.

You may recall from a few posts back that we are trying to get our feral girl Ripley, who resides in our detached garage, to get comfortable coming into our basement so that maybe she’ll spend winter nights there, where it’s warmer. She had been slowly coming in when we left the door open and exploring, until some dumbass (uhh, me) decided to speed up her training and close the door behind her, and she kind of freaked and was traumatized for weeks.

Well, we are happy to report that she has started venturing back into the basement again little by little, even for this dumbass. This time we won’t rush her.

She hangs out day and night now on the stone wall near the basement door and at various other places right up against the house. She has even started hanging out on our top step, and Baldy put a little hut there so she can get out of the elements as needed (she would freak and run if we opened that door, so we’re sticking to working on the basement door). As you can see, we’re still trying to get the indoor crew to get used to seeing her around and not scaring her off. Progress there is slowish too.

More ODR updates soon!

I seek external validation, because: human. Please send likes, emojis, memes, GIFs, or comments. Share and subscribe if the spirit moves you.

Above all, add some joy to your August! I’ll see you again at the very end of the month.

**Disclaimer: Although I AM licensed to drive and to practice social work, I am NOT a licensed medical professional. You should not rely on any information contained in this newsletter in making medical, health-related or other decisions. Please consult a doctor or other health professional.