On risks and fear
Plus, The Antidote #25: PEM and muscle fatigue, CDC illness dashboard, researchers in Gaza, and fun animal links
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.
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Risky business pleasure
If you read my last post, you may remember that I was headed to a volleyball alumni reunion at my alma mater, which was also a retirement celebration for our longtime coach. This coach began my senior year; he is just now retiring, 27 years later. Quite a run!
I almost didn’t go. Many of you spoonies and immune-compromised folks will understand.
When one of the current coaches organizing the whole shebang sent out the first email several months ago kind of casually floating the idea of a joint alumni reunion/retirement event combo platter, I pretty immediately ruled out the idea of going. How would I be able to keep myself safe from infection? How would I sustain the energy to get through the entire weekend? I can’t play volleyball anymore - what will I do during the alumni games? How sad will I be watching others play when I can’t? And what would I have to say to people I haven’t seen in decades?
“I used to have a big, fulfilling career and I played volleyball for years and years after graduation…but I caught the pandemic virus very early, didn’t recover, had to give up my job, volleyball and most of my hobbies, and now I’m a disabled, out of work, childless cat lady with immune dysfunction.”
It all felt too depressing, honestly. But the risks of being physically close to a lot of people was the scariest part. It’s the reason I’ve turned down dinner parties, certain concerts, funerals, and baby showers (that last one never felt like a big sacrifice, if I’m being honest; they’re my least favorite event, followed immediately by parades with bagpipes. The remainder of the list is long and specific, a topic perhaps for another post or unless a reader asks for this list in the comments section, in which case I’ll happily oblige).
So, I put it out of my head. Any thoughts of the fun I might have were wiped out during the risk analysis.
My college bestie Rachel, who was my setter, often reminisces with me about those good ol’ days - the camaraderie, the laughs, the competition, the parties. She started talking about how fun it could be to go. And then slowly, really awesome people from the years I attended started RSVP’ing. Women I played with and also guys from the men’s team. Our women’s and men’s teams were like one big family back in the day - we hung out and partied together all the time. I started really, really wanting to go, but still feeling quite anxious about it.
I decided to consult with my local bestie Lisa, who is also a friend I made through volleyball but in my post-college years. She is smart and level-headed and also sentimental. She also adores me and wants me to be happy (and I her). I laid out all of my thinking for her - how this was maybe a once-in-a-lifetime reunion on this scale, how I wouldn’t have to travel too far (I live less than an hour from campus), how much I wanted to be there to celebrate our coach and catch up with old friends. Lisa has also witnessed me at my worst through this illness and is intimately aware of my limitations, my fears, and my risk-aversion.
After hearing the pros and cons, she turned to me and said, “I think you should go. I think you should wear your mask, and maybe consider opting out of some of the weekend’s events if you get fatigued. But you should go.”
It was the push I needed. Rachel RSVPed and so did I. Additional folks rolled in with their RSVPs after we did. It was like we were all kind of feeling it out to see who would come. As the weekend approached, we had a group of about 15 in our cohort - alumni from the 1990’s, the ‘geezers’ of the group. The only one I had seen in 27 years was Rachel. All told, about 75 alumni attending spanning from the graduating class of 1996 through 2024. Very likely one of the best attended sports team reunions on campus ever.
So how did I handle the risks and the fear?
Here’s the part I really wanted to discuss, because it was a messy roller coaster of a process and I’ve been turning it over in my mind since this past weekend.
First up, the coach who organized the event entered all of our numbers into an app called GroupMe so that we could communicate in real time about the weekend’s events. Once peeps started using it, I decided I would let them know that I’d be masking for much of the weekend, since I’m immune-compromised, but that I wasn’t currently sick and that hugs were okay with me. I hesitated about doing this ahead of time, but I really didn’t want strange looks when I got there and I also didn’t want anyone thinking I was actively sick. It helped me feel like I was managing expectations, and that lowered my anxiety a bit.
Next, Rachel let me crash in her hotel room for the weekend, and she offered to take an at-home COVID test, which came back negative on Friday morning. Thanks, Rachey!
That night we attended a match of the current women’s team. I wore my mask the whole time, except for during the group picture. This was a pretty exciting part of the weekend because as other alums trickled into the gym, we kept getting up from our seats in the bleachers to hug everyone. Seeing folks we hadn’t seen in decades was A TRIP. Everyone really looked great. The only issue was that the gym was hot as Hades.
This made wearing a mask extremely uncomfortable, because my face was sweating. But my anxiety around being in a crowded gym with lots of hugs happening kept me wearing it. The time in the gym also helped me feel relieved, like, “okay, now everyone has seen me in my mask; it won’t be awkward for the rest of the weekend when I have it on.”
After the game, we walked back to our hotel room before heading to a brewhouse for a large group dinner. Since you can’t eat with a mask on, I decided this is when I’d give the Neosporin-up-the-nose a try, which I learned about in
’s post (thanks again, Doc!):
I walked into the restaurant wearing the mask. Some of you might know that you never get funnier looks when wearing a mask than when you walk into a restaurant with one. Everyone stares at you like, “just how do you plan to eat with that thing on?” They’re not wrong. But in the last few weeks, with COVID still surging from the late summer, I attended two special dinners for friends, and I managed to keep my mask on the entire time except for when I was eating. After finishing my food, I would put it back on.
But here’s where our story takes a turn. It was loud in there. We were all catching up. I got caught up in the excitement of it all. I got tired of shouting louder through a mask just to be heard. And so…I took it off. I just took it off, stuck it in my purse, and made a conscious decision to put my fear to the side and just try to be in the moment, enjoying myself in ways I hadn’t since before the pandemic.
Was this smart? No, I don’t think it was. While COVID cases have died down since the summer, they’re still circulating to some degree. I still have immune dysfunction, according to my immunologist. I still don’t want to catch COVID again. Also, the risks were not minor. While two large groups of us were seated in a fairly open, airy room, we had to sit closely in order to simply hear one another. There were certainly droplets and aerosols floating through the air, just by the sheer force at which we all had to speak in order to be heard.
The next day there were a few events, mostly in very large spaces with decent to good air circulation. I did not mask for those either. I tried to put myself outside or on the balcony before our coach’s retirement event, for example.
I was not in denial about the risks, nor about my own fear. It was simmering below the surface all weekend. I mentioned to Rachel a number of times, “I really hope I don’t get sick.” I got nervous thinking about the week ahead, envisioning myself anxiously passing the days and fully expecting to develop symptoms of an acute infection at some point. I made myself believe that it was inevitable, and I think a part of me felt like it would happen to me because I had been so foolish and thus deserved it. No small part of this guilt involved the fact that I have managed to dodge reinfection with COVID-19 since my initial infection in March 2020; in fact, I’ve dodged any kind of acute illness, save for a minor cold I had in September 2020. If my choice led to a reinfection, which would likely amount to undoing a good deal of my recovery progress, how could I live with myself?
In the back of my mind was also all of my readers and fellow spoonies. I’ve championed risk reduction and masking for so long now, have expected family to take at-home tests for the holidays and friends to meet me for outdoor plans or indoor plans at off-hours, that I felt I’d inherently be letting down everyone who looked to me for guidance and/or supported me over these years through their own efforts.
BUT…
It is not an overstatement to say that I had one of the best weekends of my life. Seeing old friends that we shared so many great memories with, reliving those moments, laughing, observing how everyone’s quirks from when they were 19 or 20 were still their quirks today…most of us at some point talking about how fortunate we were to be able to go to such a great college, how lucky we were to have had four years of a collegiate athletic experience (and our teams were really good, some of the best on campus). We toasted (and gently roasted) our coach at the retirement event. I even got up and gave an impromptu speech after a glass of liquid courage (thank you, chardonnay) that drew a lot of laughs and a few tears from our coach (and - no nervous system adrenaline dump after, y’all. Progress!).
It helped that the fall weather was absolutely picture perfect and that our campus, which is also an arboretum, did not disappoint. We talked so much about how lucky we were to have spent these years in such a beautiful place.
My favorite part of the whole thing was how everyone who was there kept saying, both during the weekend and in the days after, how very special it was (“magical” was thrown around a few times). The fact that we were so bonded back then and that it meant the same thing to all of us, all these years later - it is hard to really capture the warmth of that feeling in words, but damn if I didn’t wish I could have bottled the feeling.
We vowed to stay in touch and to plan mini-reunions on our own. Many of us have texted or messaged this week, sending pictures from the weekend or from back when we were just kids.
Bringing this in for a landing
As I mentioned, I turned over the risks I took in my mind all weekend and in the week since. But they were mixed with such feelings of intense nostalgia and joy. It was kind of confusing for me, emotionally, to have such extreme highs be tainted by worry and possible regret.
How did I fare physically? I am writing this on Friday, a full five days since I left campus (six days since I saw folks other than Rachel). So far, no signs of infection of any kind. Perhaps the Neosporin helped, or perhaps I simply wasn’t exposed. I did have significant fatigue Tuesday-Thursday of this week, what we spoonies would call PEM (post-exertional malaise). After walking a lot of steps each day, talking and listening a lot, and drinking a bit of alcohol, I guess this was to be expected. Today is the first day I feel back to my pre-reunion baseline.
I am trying to be balanced about my actions from the weekend and my reactions to those actions. Mainly, I am trying to avoid being harshly ableist with myself, to avoid blaming myself too much for letting my guard down and for feeling free and joyful for a few days. Many long haulers have gotten reinfected because they have children who bring things home from school, or because they attended a wedding, or because they too relaxed their precautions at some point in the name of ‘normalcy.’ I have never judged them, and I still don’t. It actually breaks my heart on their behalf, because I deeply understand wanting this kind of freedom back, even just for a day or a weekend.
It must be mentioned just how much it wears on those of us with long COVID and ME/CFS (and others with immune dysfunction) to watch those around us, on social media, and on television living these carefree lives. We spend a lot of our time being worried for ourselves and for our loved ones who keep getting reinfected. We write posts about the dangers, present the data, connect the dots. Some people take it in; most do not. We don’t spend much time talking about how we would love the ability to live so freely, but can’t truly afford it, or at least not on a regular basis. We develop white knuckles holding fast to our current functionality, knowing that even the slightest viral or bacterial offense - or overstimulating circumstances, even - can make us lose this hard-won bit of what makes existence worth it or maybe just bearable.
As for me, this is not the start of me throwing caution completely to the wind. I took some risks and fortunately, nothing terrible happened. But I am by nature risk averse, and so I was back to masking in high-volume or high-risk, indoor public places this week (pharmacy, grocery store, etc.).
Each decision, for each of us, is a matter of our own personal risk analysis and comfort with any risks we choose. We are all human, all navigating the world of germy landmines in our own ways, trying to integrate our physical and mental health the best we think we can. I’m choosing to give myself the same grace that I’d give to you, and to bathe my brain in the feel-good chemicals from my amazing weekend for as long as I can.
Now, who’s ready for some links, eh?
The Antidote #25
COVID, Long COVID, and ME/CFS
🕊️ RIP Tinu Abayomi-Paul, a writer, disability advocate, and person living with Long COVID. The Sick Times pays tribute here. Creaky Joints also pays tribute.
🎢 California’s summer COVID surge is over. But expect another spike.
🤧 The CDC now has a respiratory illness dashboard that is updated every Friday. It provides a weekly update of where the U.S. is with respiratory illness, wastewater data, and ER visits. Check it out here.
🧪 The first home flu and COVID-19 combination test was approved by the FDA - read more here.
🫀 Covid may increase the risk of heart attacks, strokes, and deaths for three years after an infection. Important quote from this article: “There’s no sign of attenuation of that risk,” said study author Dr. Stanley Hazen. Meaning, the risk of this has not changed even with new variants emerging. Be careful out there, folks.
😷 Are you a healthcare worker? If so, please sign on to this letter being sent to the NY governor, NYC mayor, and other NY legislators to oppose mask bans in NY.
🧔🏻♀️ Sex and gender differences in infectious diseases: check out the lead article in this NIH newsletter.
💊 Low-Dose Lithium Tested in Long COVID: read about it here (free MedPage Today account required).
😣 When Nerve Pain and Numbness Are Linked to Long COVID: a blog post from Yale Medicine.
🦠 Anti-viral treatment for COVID-19 is under-prescribed to patients 65 and older (which is precisely who needs them most), according to this study.
🧠 Pathological changes in brainstem found in post-COVID patients, a new study found.
😵💫 Orthostatic intolerance in ME/CFS, Long COVID, and POTS: a book review and talk with Dr. Peter Rowe.
🛌🏻 ME/CFS patient forced onto psychiatric ward by parents & medics. Read about Katiana here. This should seriously be criminal. The denial of scientific literature around the existence of ME/CFS is just astounding.
🧪 COVID-19 testing kits sent to Russia during the height of the pandemic by Donald Trump. If you are in the U.S. and couldn’t access a test, this should enrage you.
Webinars/conferences/podcasts/videos
👩🏽💻 RECOVER seminar - Patterns of PASC with Initial COVID-19 Infections and Reinfections: EHR Insights on October 29th from 12-1:30pm EST. Register here.
🚶🏾➡️Post-exertional malaise (PEM) and pacing: my friend and fellow long hauler Chimére L. Sweeney interviews various experts in a series for #MEAction. Here’s one and you can find the others on #MEAction’s YouTube channel.
🩻 Skeletal Muscle Fatigue & Post-Exertional Malaise in People w/Long Covid & Implications for ME/CFS webinar recording:
🦠 Long COVID & Other Viral Illnesses that lead to Chronic Post Viral Illness, a wonderful interview by Dr. Funmi Okunola with Dr. Amy Proal of PolyBio.
🪫 Life with a Low Battery: Living with ME/CFS - a wonderful five-minute video explaining what it’s like to live with these energy-limiting illnesses. (The video description on YouTube page also contains links to versions of this video with no music and no color, for anyone with sensory sensitivities).
Health miscellany
🙊 Mouthtape: As #Mouthtape for Sleep Apnea Takes Off, Research Raises Concern for One Group (free MedPage Today account required). I wrote about the fact that I mouthtape at night here. Definitely talk with your doctor before considering it.
🧬 23andMe's genetic DNA data: what happens if the company goes under? I spit in that tube a long time ago, but I didn’t check the box allowing them to use my DNA for research purposes. That still doesn’t answer the question of what they’ll do with my double-helixes.
🌾 Non-celiac gluten sensitivity seems largely unsupported by research.
🍒 Double Mastectomy Doesn't Help Breast Cancer Survival Rates, according to a new study described in Women’s Health. This kind of shocked me. I’ve always thought that I’d have no problem having this operation if I developed breast cancer, but maybe now I’d take a pause before deciding.
🍌 Condoms aren’t a fact of life for young Americans. I found this article really interesting; a lot has changed in the sexual health and prevention world.
🏃🏽♂️ Rhabdomyolysis: can exercise bring it on? This article discusses what it is and if that’s the case. This caught my eye because exercise also often causes problems for people like me, with ME/CFS and/or Long COVID. (free MedPage Today account required).
🐷 Long-distance endoscopy: surgeons in Switzerland used a PlayStation controller to complete an endoscopy on a pig in Hong Kong. Mind officially blown!
🐊 Crocs are popular kids' shoes, but are they bad for young feet?
🔬 Researchers in Gaza face formidable obstacles to rebuilding their careers: destruction of their homes, bombed infrastructure, cancelled work contracts and, for Palestinians, forced relocations and the lack of electricity, health care, water and sanitation. Read more about it in the Israel–Hamas conflict one year on: researcher resilience in the face of war.
🚴🏾 Boy’s Bicycling Death Haunts a Black Neighborhood. 35 Years Later, There’s Still No Sidewalk.
🐄 Ready-To-Eat Meat and Poultry Products Recalled Due to Possible Listeria Contamination.
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🫥 Let’s kick off with some lil-too-close-to-home yuk-yuks.
👴🏼 Why you shouldn’t be mad about wrinkles: take inspiration from the elephants.
🐸 More fun from the animal kingdom: Have You Considered Just Not Pooping?
🦅 And even more: loved this Substack post by
on red-tailed hawks.
🤗 Oh, happy day: Daniel Day-Lewis ends retirement from acting after seven years.
🎼 Do you know who the singer-songwriter
is? Well, you bloody-well should because he’s brilliant (that sentence was so uncharacteristically…British of me). I’ve been a longtime fan, and I stumbled upon him here on Substack and was starstruck. And then he subscribed to The Tonic, y’all! Okay, I digress. Check out this beautiful post of his, where he turns a poem by Ada Limón into song. A recording of the song is at the end of the post, but don’t skip the post itself; you can learn a bit about his process here.(Also, two of my other favorite songs of his are Wisteria and Calling the Moon - look them up! Stunning stunning stunning.)
🤦🏻 Buffoons of the week: toxic men who are famous - I’ll just put this here - Russell Brand, Andrew Huberman and now Wim Hof: why are there so many awful stories about wellness bros? Many in the Long COVID world have used Wim Hof’s breathing program to help them recover. He’s had a quasi-cult following for a while now.
🏆 Winner of the week: congratulations to Alice Wong - writer, editor, and disability activist - who was awarded one of the MacArthur Foundation “Genius” Awards for “increasing the political and cultural visibility of people with disabilities and catalyzing broader understandings of disability.” She’s the founder of the Disability Visibility Project and author of numerous books and articles.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Fritzy the couch potato edition.
I love your articles and information links. Yours is the only mail that I read immediately when it comes through—even if I’m unable to read it all at once, I can’t wait to see your topics.
I had Covid in Jan 2020 and left work the end of March. Getting help was an uphill battle but I’m working with amazing people now. I’ve been diagnosed with ME/CFS post covid. My disability came through this summer and covers from my last work day through my full retirement age.
Thank you for sharing your journey and for the links I’ve passed on to my doctors and therapist.
You have become to me like a lifeline in a sinking boat. Good luck to you and keep sharing! You have touched my life and improved my mental well being.
To help reduce anxiety levels, I have a friend who has a portable (nearly pocket sized) CO2 monitor she takes with her. The reason: the higher the CO2 levels in the air, the greater the likelihood Covid might be in the air among all those droplets we all exhale. If it gets above a certain level, she masks up. I'm going to scrounge around on Amazon and will post a link for purchase once I find it.