🥳 Tonic in One-derland 🥳
We hit 1K subscribers, just in time for our one-year anniversary! Plus: take our reader poll
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.
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.
Wish list shout out!
Gifts = love! Many of my readers have chosen to support my efforts here via the Amazon wish list in lieu of paid subscriptions (which could jeopardize my disability benefits). A big Tonic THANK YOU this week goes to Jackie W., Mardi C., and a mystery donor who sent chocolate! (if this was you, please let me know! there was no note in the package)
If anyone else is interested in showing support, see below for the skinny. There’s something for every budget and any help is appreciated. (Note: please be sure to include a note with your gift(s) so I can include you in my shout out!)
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!
Happy annibirthary to US! 💃🏽🕺🏽🪩
The publication of this very post means that The Tonic is officially 52 weeks old. WOW.
Now, I’m no expert in the calendar arts™️, but somehow Substack says this is my 52nd week publishing, which my sources tell me is one year, even though my first post went live on July 23, 2023 and today is only July 13th.
Who do I blame for this discrepancy? The Greeks? The Romans? Should we rename Substack Subtract? I don’t know. But I’m not going to miss the chance to celebrate.
If you’re new here, you may have missed the fact that some years ago (like probably 10), I coined the word ‘annibirthary’ as a technically accurate alternative to the wildly overused and pedestrian ‘birthday.’ Dwight Schrute agrees (though I swear I coined my word before knowing he agreed):
I digress. Not only are we around a one-year-old publication, we also hit 1,000 subscribers just this week!
I’m kind of astonished, both at the idea that there are one thousand of you out there who thought enough of my little project to hit the subscribe button and at the fact that this milestone coincides with the one-year mark.
WAY!
I won’t thank any god for my good fortunes or accomplishments here; I practice atheism religiously. But I will thank three others:
the Substack platform - for all its room for improvement, this baby “blogger” (I’ve been a writer of sorts in past lives, but this is the first time I’ve done this type of writing) finds the app pretty user friendly. The ease of formatting, publishing, and navigation has been great, and also, where else can a disabled writer like me not charge for my writing and still get the back-end support of such a platform? (maybe there are other options, but I remain blissfully unaware and also unwilling to put in the work required to migrate, so back off, buddy).
my readers - for hitting subscribe, for showing up and reading, for engaging with me. When I started this venture, I had zero expectations of The Tonic taking off the way it has. There is more of a thirst for long COVID and ME/CFS and general health info out there than I imagined. There is also more of an audience for those who like to have some fun with it, too. Optimism, laughter, and just taking the ‘heavy’ wind out of these illnesses’ sails is what I crave, and many of you do too, it seems. Beyond that, those of you who regularly engage in the comments section of my posts or via email have really made me feel more ‘in community’ than I ever imagined could come of this. Special shout-out to my new and fellow disabled friends, whose approaches and expertise have kept me informed and inspired. But also? Those of you who pop in here regularly but don’t have long COVID or ME/CFS have a special place in my heart for your openness to learning about what we’re going through. Hopefully you’re getting something out of the experience too.
Thank you ALL for being here.
other Substack writers who have recommended my Substack - this is a big one, because most of my new subscribers have come from these other publications putting in a good word for me. I owe them all a debt of gratitude. The biggest thanks by a country mile goes to
of the ; just about half of my subscribers have come through Brandon’s super informative newsletter, which breaks down complex studies and articles for us lay people. Half! That’s huge. Thanks, Brandon (and Amy, and team?).
So what’s next?
There will be no blustery What I’ve Learned in My First Year on Substack post from me, nor will there be a How I Got to My First 1,000 Subscribers (umm, we’ve already answered that: Brandon 😆).
What there will be is some real talk.
I am tired, yo. The boss needs a break.
When I first set up my Substack, I set a goal of publishing one post a week. That is the cadence I’ve stuck to, with the exception of certain weeks where there was an extra post with some announcement or information to share. I began burning out on that pace a month or two ago, but I wanted to get to 52 weeks so I could say I did. And here we are. Mission accomplished.
A lil side trip: in my former career in victim services, there was a great deal of lauding a staff person or a volunteer as being a ‘tireless advocate.’ Some years ago, at an awards ceremony or retirement dinner or some such event where one of my ilk was being honored, I turned to whomever was sitting with me at the time and said,
“please don’t ever let anyone describe me as a tireless anything. I am human. I get tired. I’m tired all the time. I do this work despite being tired.”
When you develop a health condition that involves extreme fatigue, which was in part brought on by your go-go-go life choices and your tendency to put other people’s needs before your own, you can see so clearly how these designations of tireless this, and will not stop until the job is done that, are really dangerous standards to set. We should not be holding such people up; we should be pulling them aside well before the fucking awards ceremony and telling them, “there’s another way to do this, you know.” And if the workplace or career culture won’t allow for it to be done at a more humane pace, there are other options too. We can hop off the hamster wheel and find a new path.
Back to the here and now. I am not entirely sure what my publishing rhythm will be going forward. At times it may still be weekly. I can say for sure that I’ll be taking two weeks off from The Tonic at the end of July-beginning of August and one or two weeks off at the end of August-beginning of September. The summer has been slower anyway as far as how many of you are actively reading (and, good for you - you should be out living and enjoying your lives, and not always glued to a screen). I’ll be spending some time traveling and with family, and just generally taking a big fat breather.
I also have a few exciting things in the hopper personally and these things are going to require more of my attention very soon. I’m not quite ready to make any announcements, but this just means that some weeks (likely many weeks, at times) my priorities will be elsewhere.
The one-year milestone, the 1K subscribers, and my need for a wee bit of a break are all converging and had me thinking that this seems like the right time to do a reader poll. This could be a good way to help my needs and your needs meet somewhere in the middle.
I welcome any further comments or suggestions you have about my content, including whether you like the Recovery tools posts as well (the Substack poll only allows for five options, so I stuck with the larger categories).
I leave you with this
Aside from my Substack-related milestones this week, a few other very cool things happened:
I donned my “before times” workout shorts to do my little exercises for the first time since, well…the before times:
To keep tabs on my progress, I keep a calendar page near my supplements where I rank each day’s symptoms on a scale of 1-10 (10 being the most severe). Fatigue has always been my worst symptom, but I also measure neuropathy, shortness of breath, and pain. Last week, I clocked my first 4 out of 10 fatigue day - the lowest I’ve had since this whole thing began! And, although I haven’t had another day like that since, I know that it’s possible and I know I will again.
I posted this in Notes, ICYMI:
I had my annual follow-up visit to the cardiologist and she told me I could stop taking the beta blocker (metoprolol) for my POTS. She also said I didn’t have to keep coming to see her. “You mean, I graduated?”. She smiled and said, “Yes! Isn’t that great?!”
Indeed it is 🥲.
🥳 The After-party 🥳
Announcements, links to articles and studies, recommendations and shout-outs, and miscellany joy and/or tomfoolery.
➡️ Study alert! The HOBSCOTCH Institute at Dartmouth Health (https://HOBSCOTCH.org) is recruiting for a pilot study of the HOBSCOTCH (HOme Based Self-Management and COgnitive Training CHanges Lives) self-management program in people with Long COVID. HOBSCOTCH includes nine one-on-one sessions with a Cognitive Coach that include self-awareness training, problem-solving therapy, behavioral memory strategies, and mindfulness exercises (deep breathing and relaxation). The program is conducted entirely virtually. Study participants will also complete questionnaires and brief cognitive testing. To participate in this study, you must be aged 20–65 years, with a diagnosis of long Covid, cognition or memory issues, and access to a telephone and an internet connection. Other eligibility requirements may apply. There is no cost to participate, and modest financial compensation is available. To learn more about HOBSCOTCH-PACS, please contact the Research Project Manager Sarah Kaden at sarah.j.kaden@hitchcock.org or 603-650-4225 and they will share further details and discuss next steps for enrollment. (For added inspo, I myself am enrolling in this study. I may have graduated from cardiology, but not yet from neurology 🤷🏻♀️).
😷 ICYMI: Second gentleman Emhoff tests positive for COVID. Stay safe out there, friends!
🚴🏻♂️ Biggest 2-Day Exercise Study Ever Validates the Energy Problems in ME/CFS: Pt. I. One of the co-authors of this study is Betsy Keller, the PhD exercise physio who conducted my own 2-day CPET in July 2022. This test helped me obtain disability. If you want to read more about my experience, go here.
🦠 ‘Visionary’ study finds inflammation, evidence of Covid virus years after infection. Here’s a quote: “Investigators found long-lasting immune activation months and even years after infection. And, even more concerning, they report what looked like lingering SARS-CoV-2 virus in participants’ guts. Even those who’d had Covid but no continuing symptoms had different results than those who’d never been infected.”
⬇️ And this, from
:🤷🏽♂️ And then there’s this. Scientists closing in on why some people never get COVID. That could help with future vaccines. Baldy is still counted among the NOVIDs, and although he is fairly anti-social, it still boggles the mind.
🦋 Big news also this week in the autoimmune world: Scientists say they have identified a root cause of lupus.
🧠 I found this super fascinating: Not Everyone Has an Inner Voice Streaming Through Their Head. I realized a few months ago, when trying to get my nervous system calmed, that I have like four inner voices as well as one or two songs running in the background at all times. Sometimes I have to acknowledge them or write down what they’re saying in order to clear the cache.
🤦🏽♂️ Buffoon of the week: my first thought? OMG, I would DIE if I had snakes in my pockets! my second thought? this guy is totally the buffoon of the week. my third thought? Snakes (WERE TOTALLY) On a Plane 😆
🏆 Winner of the week: Violet Affleck, eldest child of Jennifer Garner and Ben Affleck, made an impassioned speech against a proposed mask ban in L.A. In her rapid-fire speech, she acknowledges having experienced a post-viral illness herself in 2019. This young woman has mad leadership skills! She wins this week.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Get to know Mo Show, the Cat Rapper. He’s always making me smile.
Thank you!! I'll look forward to hearing from you from time to time. Take care of yourself, thank you for your humor and inspiration on the road to recovery ❤️❤️
Congratulations Amy! This is quite an achievement! I am looking forward to hearing about whatever comes next for you. And I found the article about our inner voices fascinating!
xo Paula