I have a good job and a great employer, but work is long and work is hard and work is work and my favorite part of the day is 5:20 when I get to turn my work phone off and start to wrap up for the day. That’s when I like to take a big stretch, follow up with my customers, and turn on some music or a YouTube video so I can decompress until I log off at 5:30.
Eating — at home.
One of my new year’s resolutions is to take better care of my finances, and the number one way I’m doing that is by limiting how much takeout I eat. The catch is, I suck at cooking, so I’m eating a lot of noodles and chicken tenders. I never said I was an adult.
Exercising — daily.
You may have read my post about my new exercise machine, but I exercise for 20 minutes a day, 5 times a week, and I think it’s going pretty well! I’m still out of shape, and stairs are still hard, but I think it’s most useful as an energy and stress burner. I never, ever, ever in a million years would have admitted that exercise was beneficial even five years ago… but now I do think it helps. The change in thought is also in large part due to a book I read.
Reading — Burnout.
Erin recommended the book Burnout to me a few months ago. I finally read it and while we both agreed that the later chapters are a little cheesy, the first few are fire. The book talks about exercise as being a means of completing stress cycles that humans are pre-wired with. We need a physical way to tell our brains that we’re away from the danger—and exercise is the perfect way to do so. A few years ago, I would have laughed in the face of this book, but now it makes sense to me, and it’s really helpful in conceptualizing how to cope with some of my anxiety.
Social distancing — well.
I miss my friends’ houses. I miss the inside of restaurants. I miss being able to take a deep breath without inhaling fabric when I’m inside a Target. But I’ll keep doing this as long as it takes until we’re all safe.
Zooming — weekly.
Jose, Sara, Mike and I have a weekly Zoom together on Friday nights. We recap our weeks and then sync up a show together and text each other while we watch it. It’s the highlight of my week and has helped me feel closer to Sara ever since she moved to Seattle.
a standard zoom session with Sara, Jose, Mike, and me
Watching — Grey’s Anatomy.
I have a list a mile long of shows I need to watch so I decided I should rewatch Grey’s Anatomy instead. The soundtrack to this show is pretty off the rails (Tegan and Sara and The Cardigans in ONE episode?!) and all of the throwbacks have very much enhanced my Spotify listening.
Celebrating — Joe Biden’s Inauguration.
Joe Biden’s not going to be perfect but oh my gosh, oh my gosh, oh my gosh, Trump is gone and I feel like I can BREATHE. The best part of his inauguration was hands down the beautiful and talented Amanda Gorman and I’m hoping we see much more of her in the future. She is an absolute joy.
It’s been a good start to the year. I’ve been dreaming up a lot of different plans and ideas and I’m excited to see what comes.
Merry Christmas, Happy Hanukkah, Happy Kwanzaa, Happy Solstice, Happy every single winter holiday that occurs this season!
And most of all, happy sales and free shipping!
About a month ago I had really big and grandiose plans for another installment of my dysautonomia inspired gift guide—I had plans to work on it over Thanksgiving and scour the internet for deals and recommendations and provide you with the greatest ideas ever for your loved ones.
Welp. Here we are.
I want to blame my lateness on the fact that I threw my back out on Thanksgiving and was stuck in bed sleeping for a full week after, but that doesn’t do much to explain why I’m still another week late.
This year I’m incorporating a lot of non-dysautonomia items, which is why this year is just Shannon’s Favorite Things. Life with COVID has introduced the need for a lot of new products in our lives and SURPRISE, I HAVE A LOT OF OPINIONS.
Happy shopping, and happy holidays, I hope you find a product or an idea you love!
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FACE MASKS
I think the greatest nuisance of COVID is wearing a face mask. We always have to be aware of where our masks are, keep spares in the car, clean them… Plus I’m too scared to wash my masks in my laundry machine because if I’m losing socks in there, who knows what will happen to my masks.
The good part is that shopping for masks is actually fun and it’s now the perfect gift because every one needs them and having an extra is always helpful.
I sometimes call myself a failure of a woman because I can’t use a standard blow dryer to save my life. I lack all coordination required to hold a hair dryer and brush my hair at the same time without smacking myself in the head every 3 seconds. In addition to that, POTS makes it impossible for me to lift my arms for any extended amount of time. As a result, I’ve strictly relied on air drying my hair for… my entire life?
I used my friend Katie’s hair dryer brush at DysConf one year and it’s a GAME CHANGER. It’s fast, it’s easy, it only requires one arm, and I LOVE IT.
If you have POTS, you’re probably not getting enough salt in your diet… and no matter how much chips and salsa I eat, I’m still a bit low on sodium.
My lovely cousin Catherine decided to remedy that by sending me the nicest birthday gift, which was a ton of amazing salts from a mine in Utah called Redmond Salts. I have REALLY been enjoying their seasoning salts in particular–their garlic salt in particular. There isn’t anything that garlic salt can’t make more delicious.
I lose things a million times a day—keys, wallets, prescriptions… it’s no good for anyone. After a few too many upset moments looking for keys, I finally decided to get a Tile and I love it. You put a little key fob on your keys or phone or whatever device you lose most often and use an app on your phone to locate it. And you can even do the reverse—if you lose your phone, you can press the button on the key fob and it’ll make your phone beep.
When I moved into an apartment, the best thing I ever did for myself was sign up for sign up for Instacart’s premium service which lets you get your groceries delivered with no delivery fee—just pay for the groceries and tip your shopper!
It’s been such a lifesaver during quarantine and also on days when I just DON’T have the energy. When I know I have a big haul of heavy things, it’s the biggest relief in the world that I can pay someone to do it for me.
I also recommend gifting someone a meal delivery service! The one I hear the most good things about is Freshly, which delivers pre-made meals and all you have to do is heat it up.
My greatest discovery of this year is joggers. Before 2020, I was strictly a yoga pants girl (and still, yoga pants and bike shorts are the bomb), but I feel spectacular in joggers, just like the 90s kid I am, who lived in sweatpants and Gap sweatshirts.
I get really dry hands in the winter which has only been made worst by washing them constantly. Thanks, COVID.
I was so happy when I saw that hand sanitizer lotion is a thing, and I LOVE Vaseline’s. With a lot of lotions and hand sanitizers, my skin burns and hurts from the cracked skin, but I don’t have that problem with this lotion at all. This is a perfect stocking stuffer.
Whatever you choose, please be safe when shopping in person, have a social distanced holiday (but still celebrate over zoom!), and have a wonderful holiday season.
How many times have I declared, YES, AT LAST, I HAVE STARTED EXERCISING AGAIN, I DID IT, I AM BORN ANEW, A WOMAN WHO EXERCISES AND MAKES HER DOCTORS PROUD and then like two weeks later I miss a couple of days and never exercise again?
That is, until my therapist Jedi mind tricks me into starting the routine again, I do it, I proclaim from the mountain tops that, YES I AM A NEW WOMAN, and the cycle repeats?
It’s been quite a few times now, right?
WELL GUYS WHAT, Y’ALL.
I AM A NEW WOMAN.
I HAVE STARTED EXERCISING AGAIN.
But this time is totally different—I swear.
Last year I moved out of my parents’ four-story townhouse into an apartment with my friend Amy. We live on the third floor, and it’s been a game changer. Sure, carrying groceries up sucks (hello, Instacart!) but having my laundry and my kitchen and my family room all on the same floor as me—all within feet of me!—makes me not only less exhausted but happier.
All of this backfired a little bit when COVID started. Now that I wasn’t walking around at work, I wasn’t even walking out and up and down the stairs to my car every day, I was barely moving at all. I was confined to my tiny little home.
A couple of months ago I saw an Amazon sale for a piece of exercise equipment called a Cubii. It was like a stationary bicycle—but just the pedals. I’d seen stuff like this before, but nothing this secure and efficient looking. AND this has an app!
I liked the look of it, it had good reviews, and after watching a dozen videos about it, I hit buy. It was pricey, but c’mon! It’s an investment in my health! Plus it was $100 off!
The Cubii arrived a few days later, and there it sat. In the box. In my apartment. For weeks.
I mean, I was sort of exercising by osmosis. Just having it in my vicinity, it was like I was burning calories, y’know?
(I have since been informed that (1) that is not how exercising works and (2) that’s not even how osmosis works. It’s been a while since high school biology, I’m doing my best.)
Anyways.
In October I dragged the piece of equipment out of the box, set it up, and told myself, just 10 minutes. You got this.
And it was really easy.
Suspiciously easy. I mean, it was only on the level 1 for resistance, but still, it was so easy.
See, I think the Cubii is designed to be a piece of equipment you work out on for hours absentmindedly—set it at a low resistance level and pedal while you do send emails and take meetings. It’s designed to fit under your desk, so it’s like the seated response to standing desks. (By the way, I now know that exercise isn’t Of The Devil, but standing desks most certainly are.)
Now I’m not using my machine that way—but I don’t think there’s a “wrong” way to use it.
Every day I do a 20 minute work out on the highest resistance of the machine. For 20 minutes, I either turn on my TV or get a book and pedalpedalpedal and at the end, I’m tired, not fatigued, but this is the first time since I was a kid that I haven’t had a violently angry reaction to exercise.
The exercise is light. I’m not panting or drenched in sweat like I have with most exercise as an adult.
But it legitimately feels like I’m rewiring my brain to not abhor body movements.
And because there isn’t a negative association, I’m doing it consistently. And I’m doing eagerly, without dread. I don’t feel normal until it’s done.
Sure, I’ve exercised consistently in the past. I have exercise logs saved in my notes app to prove it. But those logs are accompanied with little side notes like “cried while doing it” and memories of being absolutely miserable.
I’m not miserable with this machine. And I never thought it would be possible post-POTS to move my body without feeling miserable.
So I’m really excited about this. It’s been a hugely positive change for me–it’s a source of pride, to check off that exercise box every day. Even if it’s not high intensity or running marathons or anything like that, it’s so much more than what I’ve done in the past.
Progress is built through consistency.
Thanks, Cubii!
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Note: this post isn’t sponsored, I just really like the product and like sharing things that I think will help my fellow POTSies.
Every night when I’m in bed, my mind drifts to COVID and my parents.
My parents are in their 60s and both have pre-existing medical conditions.
When I was little, I knew they were chronically ill before I had the words for it. But they were so solid. Unshakable. Even though my dad made his diabetes his hobby and my mom always made comments about hating her body’s unreliability—I was a kid, so as far as I was concerned, my parents would be around forever.
kirk & becky, 1980s, before the kids showed up
But then I started growing up.
And part of growing up is understanding your parents’ very real mortality.
At night, while I’m in my bed, I imagine my parents asleep in theirs ten miles away, and I think about how vulnerable they are to the world—the world where COVID exists. A disease that preys on the older populations, chronically ill populations—they’re the perfect victims.
It paralyzes me with fear. I get so scared my body forgets to breathe. The paralysis switches to convulsions as I start sobbing.
I hiss in and out and in and out, trying to regulate my breathing again.
It’s not easy.
See, it’s not so much the fear of what will happen if they die prematurely—
(Prematurely being anything before they turn 85, because I’m not ready before then and even then is highly debatable—)
If they die too soon, I already have these long, long lists of contingency plans, emergency plans, of how-I-will-keep-myself-safe-if-That-Unthinkable-happens plans that are miles long and one of them involves asking my therapist to adopt me—
No, what keeps me up at night is The In-Between.
What happens if they’re admitted to a hospital that ends up being understaffed, with no one to care for them?
What happens if they are denied a needed ventilator because doctors give it to someone more “deserving”?
What happens if they are alone in a hospital bed without me to hold their hands, to tell them how much I love them, to tell them how lucky I am to be their daughter?
And worst of all, what if they die without me getting to say “goodbye, I love you, and I’ll see you again someday”?
My therapist tells me to take these thoughts, like all negative and unwanted thoughts, acknowledge their presence, and then let them pass.
“Hello, I see you, now goodbye.”
To not let them take power or hold over me.
But oh boy, these thoughts are strong and loud and powerful, just like COVID is, and I keep saying “goodbye, thought” and then it comes back over, and over, and over again, all while the same picture plays in my head—
My parents, asleep at night,
So vulnerable to the world.
And I just want to say to them,
“Please stay home. I love you too much to let you get sick.”
And to the rest of you I want to say,
“Please stay home. I love my parents too much to let you get them sick.”
for your enjoyment:
“Here is a Heart” by Jenny Owen Youngs
It’s a Friday, and my best friend’s mom is picking me up and driving us to school together.
It’s cloudy but it’s a little chilly, it’s my favorite kind of weather, it’s the best weather to ride scooters in because the sun doesn’t get in your eyes and you have the cul-de-sac to yourself.
I arrive at school and friends have presents for me, like a cool new pencil and a book about pandas—the only thing I care about in the world is pandas.
Tomorrow my parents will take all of my friends and me to the National Zoo. I’ll longingly look at the Panda Exhibit that’s still being built—pandas will arrive in two months—I have to wait. There’s so much waiting when you’re a kid. Mom is making me a panda cake, and I’ll get presents and play with new toys and Mike will have to be nice to me because it’s my birthday.
In a few weeks, I’ll be baptized and confirmed a member of our church by my dad. I’ve been learning about baptismal covenants all year in Sunday School, and I’m excited. I know I’ll be joining the church my ancestors traveled the world to join and build.
I love my life and my I love my world and I never want it to change.
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October 6, 2010.
It’s my 18th birthday.
My world looks nothing like it did when I turned eight.
It’s a Wednesday and at school I’m gifted with a plate of Rice Krispie treats, a bag of candy, and a balloon. The Rice Krispies are consumed immediately.
It’s cloudy again and just cold enough to warrant jeans and a sweater, so it’s the type of weather I thrive in.
Even though the school day is easy—and Molly and Kristen make me a gigantic paper crown in newspaper—I’m weighed down by the longing, the confusion, the waiting that has taken residence on my shoulders and in my chest since July.
My life plan was thrown out the window last summer, and I’m now disillusioned by the idea of higher education. I want out of high school, but I don’t want to go to college. I don’t know what to do, and no adult will tell me what the answer is. They keep insisting that it’s my life and my decision.
I expect to wake up on my 18th birthday with the wisdom and clarity of an adult, but nothing changes, besides the fact that I can now vote, buy property, and get married.
I’m confused, I want a nap, and I either want to fast forward or rewind, but I don’t want to be here in this moment of uncertainty.
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October 5, 2020.
I turn 28 tomorrow.
The pandemic keeps me from celebrating my birthday the way I want to, but the weekend is full of my favorite foods, gifts, and socially distanced celebrations. Mike and Jose surprise me with a 40” television because they say my 20” was getting in the way of quality TV syncs. I am outrageously spoiled.
For years, I never thought I would ever know happiness, or even what it is to be content. I thought my life would be ruled by the waiting. And sure, there’s still lots of waiting—waiting for the end of the workday and the weekend and for holidays. But that deep, soul-wrenching waiting—the waiting for enlightenment and relief from pain and for freedom and for autonomy—the all-consuming yearning is gone.
There were a lot of things I thought would happen by the time I turned 28 that didn’t—but I’m not waiting for those things anymore.
I’m not sitting stagnant but rather enjoying what was given to me. I don’t have the degree, husband, baby, house, picket fence, body, elite job—any of that. I have chronic illness and depression and a lot of self doubt. But I have friends and parents and dogs and a beautiful apartment and a job that takes care of me and coworkers and doctors and a community and—
This was not what I planned. I know my eight- and 18-year-old selves would never have picked this.
