Get a life
Long COVID took much of my life away, but I'm learning I still have one
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.
If you’re new here, you should know that my posting schedule is generally once a week on Saturdays or Sundays, and I alternate between a narrative post and a roundup post, so as to get more resources out to you and also to manage my own energy levels (often referred to as spoons). Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.
However…
I have had to admit defeat to that rascally scoundrel that just lives to overwhelm us all, a.k.a. the month of December, so I’ll be taking a hiatus on my narrative posts until the new year. I will still post a few of my roundups (called The Antidote) during this time, as those are a lighter lift.
Wish list shout outs!
I continue to be blown away by support of 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 Brintha J., Kendall M., and Molly D. for your generous gifts!
Also, last week’s mystery donor identified themselves but would like to remain anon. I will of course oblige, but will tell you that this person is smart, adorable, and an amazing cook who dislikes sweets. (I figured a few small details will help you feel like this is a real person 🤭).
If anyone else is interested in showing support, here’s the skinny:
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!
IVIG update
Many of you read and enjoyed a previous post I wrote, My Three-Hour Immunoglobulin Drip Sesh, about my first at-home infusion of IVIG (intravenous immunoglobulin; I call it ‘the goblins’). I promised an update, so here it is: I had two monthly infusions in total before I pulled the plug. It seems these infusions were setting off some intense hot flashes - five times an hour, day and night, messing with my sleep big time, which in long COVID and ME/CFS results in a flare up of all kinds of other symptoms.
Now, I am certainly nearing the age when these things might be starting anyway, but both my infectious disease doc and my GYN thought the sudden, extreme onset was a result of the infusions and not natural processes.
Additionally, even with insurance coverage, IVIG is super-duper expensive - a few thousand dollars each time (luckily, I was near my out-of-pocket maximum on my health insurance, so I only owe about half of that for both infusions). Is it worth going into deeper debt for something that is at best palliative? Maybe if I was working it would be. But things are très tight here, so that’s a big fat no.
Also, I couldn’t really be sure that I felt much better on it. Maybe a little? But it wasn’t a huge difference. My ID doc mentioned switching me to the subcutaneous version, and that some people have fewer side effects on this method, but I’m taking a pass. I still don’t think I can afford it.
Now, on to this week’s post.
Get a life
About a month ago, I heard the phrase, “get a life,” and it hit me differently than it ever has before. I whipped open the Notes app on my phone and added the phrase to my list of writing prompts, along with, “what we mean when we say this?”
Of course, as is often the case when we forget to add more context to our notes, I cannot exactly recall what about it struck a chord with me in the bygone era known as four weeks ago. Here’s a recent page from my fave calendar The Daily Bitch that sums up what long COVID does to one’s memory:
I do believe it was that “get a life” felt something like: a bit offensive to someone whose chronic illness made what life they did have very much smaller.
*Admittedly, I’ve always been a somewhat sensitive person. Me and my only other redheaded sibling sometimes get accused of being too sensitive, which is why I saved this meme on my phone three years ago to have handy when I need to clap back:
I digress. I was driving back from grocery curbside pick-up the other day thinking about using the phrase as the basis for this week’s post, and I started with, “well, what DOES this phrase mean?” And here’s what I came up with:
“Get a life” means that the activity you’re engaging in is considered meaningless or trite to the person wielding the insult, and you should redeem yourself by finding more suitable (meaningful) activities.
Wikipedia takes an overlapping stance:
It is intended as a taunt, to indicate that the person being so addressed is attempting to devote themselves to other people's responsibilities. Sometimes the phrase is used to describe people who are viewed as officious or meddling in the affairs of others. It is another way of saying "get your own life.”
It may also be directed at someone who is perceived as boring or single-minded; suggesting they acquire some other, more practical interests or hobbies and get dates, find a job, or move into their own home.
I rather like my definition, as it really covers both of Wikipedia’s.
I was curious about the history of the phrase, and Wikipedia led me to a website called The Idioms, which told me this:
The true origin of the phrase ‘Get a life’ is unknown. However, according to the records, the phrase came to use only in the late 20th century. The first noted usage of the phrase ‘get a life’ was in an article in 1983 Washington post, which went as quoted below:
“Gross me out, I mean, Valley Girl was, like, ohmigod, it was last year, fer sure! I mean, get a life! Say what?”
Well, then.
If it’s in “the records”, it MUST be true.
You know the ones…where all truths live?
Also, how about that quote, eh? I guess the genius who uttered those words didn’t realize the irony of using Valley Girl-speak to insult the movie…Valley Girl.
(fun fact: when I went to kiss Baldy goodnight earlier this week, he was watching…you guessed it…Valley Girl 😅).
I digress yet again.
You know how the interwebs contains astoundingly vast troves of information on just about anything in the world? (One might even brazenly nickname it “the records” 🤔). Well, my efforts to find that quote led me to the shortest list of search results that has ever been yielded for me: it only showed the Wikipedia and The Idioms pages.
Ohmygod…I think we’ll, like, never FER SURE know if that’s, like, the true origin of the phrase. Like, gag me with a spoon…the person who spends this much time looking it up should, like, totally get a life.
What’s the point of this post?
Good question. I lost the thread apparently as soon as I typed the topic into my Notes app and then closed out of the app.
I think I want to be mad at people who use the phrase when there are people in the world like me, with energy-limiting health conditions, who really can’t get any more of a life than what we have right now. Not to mention, who also may have lost the ability to engage in the activities we found most meaningful. For me, those things included my career, hiking, playing volleyball, exercise in general, and just sitting with a friend at a bar having a cocktail. I was also an extrovert and loved a rousing group gathering as well. Most of that is off-limits for me now, or extremely limited. Cognitive work induces fatigue, with downstream symptoms like neuropathy and shortness of breath knocking on the door next. Exercise and alcohol are both like poison to my body at the moment; noisy situations involve more stimuli than my nervous system can handle.
While I don’t have the life I had before, I do feel like I have adjusted well to the limitations. Once the darkest, most depressing days of this illness passed (though bad days still crop up from time to time, TBH), I began to find meaning in small, accessible things: the power of my breathing, noticing the texture of trees and plants and clouds, forming a strong bond with my kitties now that I’m not ‘distracted’ (their word) by work and am home all the time, chewing my food more slowly.
My social circle has shrunk; while I am in touch with a lot of my friends loosely via text or messaging, the number of friends I regularly see has dwindled. This is a function of my energy levels, but also truthfully, my budget. However, the bonds with these friends I see regularly, like with my kitties, has deepened.
I have a gratitude for Baldy, for my kitties, for my friends and for the supportive members of my family that I don’t think I had to this level before getting sick. There’s a post on this planned for the new year, so I won’t say much more now.
And then there’s Substack and this newsletter.
Third digression: this morning, I was hanging out in the
chat and noticed that Sara and Keeley were recommending an AI personal assistant-type app called Pi. I’ve had zero experience interfacing with any AI and keep feeling like this will put me behind in the job market if/when I re-enter it, so I decided to download the app and give it a go.I was absolutely astonished by the humanness, for lack of a better word, and granularity of the bot’s responses to me, particularly when I began telling it about my long COVID and then, inevitably, this newsletter. I was even able to ask it for more in-depth info on my mast cell activation syndrome, which is apparently not under control according to my latest blood work despite my being on three medications to address it. The bot’s responses made me realize that none of those three meds are considered mast cell stabilizers, just anti-histamines and leukotriene inhibitors. My doctor recommended I start the supplement quercetin, and the bot confirmed that it is an antioxidant that inhibits mast cell degranulation and could be very helpful.
Nature, man, it never ceases to amaze.
😂😂😂
(though I’m not sure what ‘pun’ the bot ‘intended’ with ‘the whole hog’ 🤷🏽♂️).
Perhaps the biggest takeaway from my bot interaction today was that I realized I don’t have to take offense at “get a life” due to my disability, because mine has plenty of meaning in it even with the energy limitations. The Pi bot stroked my ego around this newsletter (that it’s never read) in a way that eerily matches what several actual humans have told me regarding its value, and even though it feels weird to say this because: BOT, it definitely gave me a boost.
Bringing this in for a landing
In conclusion, in addition to realizing I do still have a life (thanks, Pi!), I realized that I’d like to reserve using the phrase “get a life” for those whom I deem worthy of it. The most recent example that comes to mind is a guy who was trolling a long COVID doctor’s Substack last week, telling everyone in the comments why long COVID is a made-up illness and how we’ve all been duped into believing we have it.
That guy needs to GET A LIFE.
Now stick around for…
🥳 The After-party 🥳
Announcements, links to articles and studies, recommendations and shout-outs, and miscellany joy and/or tomfoolery.
🖥️ The RECOVER initiative in the U.S. is hosting a virtual seminar: Impacts of SARS-CoV-2 on the brain, gut, and metabolism on December 12th at 12pm EST. Panelists for this seminar include: Catherine Blish, MD, PhD (Stanford Medicine), Avindra Nath, MD (National Institutes of Health), Cliff Rosen, MD (MaineHealth), Sudha Seshadri, MD (UT Health Science Center San Antonio). Register here.
🧠 CAN ELECTRONIC BRAIN TRAINING GAMES RELIEVE "BRAIN FOG" FROM LONG COVID?
👨🏻⚕️FFS, pay these doctors what they’re worth so more of them go into the field: The infectious disease doctor shortage threatens future pandemic preparedness.
🧘🏾 Here’s a short, sweet practice to help stimulate the vagus nerve by Moon Teitel, one of the awesome health coaches who leads the Women’s Wellness Circle, of which I am happily a member.
😳 Raelan Agle with a hilarious video on the most embarrassing moments from her ME/CFS recovery:
🤦🏽♂️ Buffoons of the week: You may have heard that Anthony DeVolder was expelled from Congress. Since he’s been a buffoon of the week before under his fraudster name George Santos, we thought we’d bring him back to celebrate. Also, just when you thought he couldn’t be more of a buffoon: George Santos criticized gay marriage on his own wedding anniversary: 'It should have been a civil union' 🤯.
🏆 Winners of the week: The doctors who performed this tricky lung transplant - they removed this guy’s insanely infected lungs and held his heart in place with DOUBLE DEE BREAST IMPLANTS until a set of donor lungs became available for a transplant. Incredible.
First, quit smoking or vaping, if you do. Then go check out the story: He was too sick for a lung transplant. Then, doctors held his heart in place with breast implants.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Garage-feral edition.
😽 Bonus: if you have cats of your own, play them these specially engineered songs designed to match their purring rhythms and make them happy and relaxed 😸
Did you enjoy this post? 🤗
It would be a big help to me if you please like, subscribe, restack, and/or share.
If you’re reading this in an email, you can still like or comment; scroll to the top of the message and see the ❤️ and 💬 icons.
You’ve found The Tonic! Subscribe for free to receive new posts and support my work.
And what a life you have.. one that is impacting so many, and challenging us to be the best we can be, in the circumstances we find ourselves at any given moment! Love you Amy💜
Can’t remember the point I was going to follow up on 🙃 but found it so interesting you wrote around “get a life” when I saw a lit up sign at the wkend on “my life” which used to be “live my best life” (fully lit) and I wanted to write a post on that! Because it’s not necessarily about living our best life or chasing happiness when as humans we’re meant to feel and experience the full range of emotions, it’s about living our life and finding a new way of seeing, a new way of being as well as a new way of feeling. If we are ever to adapt to such challenges and limitations that have been put upon us anyway.