Content Warning: medical trauma, chronic illness, adhesive reactions, ableism, racism, discussions of heart symptoms, seizures, and food insecurity.
Welcome back to the Cryptid’s Den.
This is The Crippled Cryptid: a soft-lit corner of the internet where disability, chronic illness, service dogs, and everyday survival magic gather like familiar spirits who know when to sit quietly and when to laugh too loud.
If you’re new here, hi. I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Medically interesting enough to make half my providers sigh when they open my chart.
I sigh too. Then I roll my eyes and ask for snacks.
I live in a haunted meat suit with a deeply suspicious warranty, spend a lot of time in Bed Jail™, and am almost never alone thanks to my medical alert service dog, Luna. She is part guardian, part shadow, part “excuse me, Mama. Sit your ass down. Right now.”
Before we go any further, I need to talk about Luna.
I was worried about her when all of this started.
I didn’t know what to expect from the heart monitor. I didn’t know how big it would be, how noticeable it would feel, or what the rules were going to be. As far as I knew, I wasn’t going to be allowed to take it off at all. I was preparing for six straight days of wires, adhesives, and anxiety.
I was lucky.
Lucky that I did get a few hours without it each day.
And lucky because Luna is, unequivocally, the Best Girl™.
She didn’t bother the device. Not once. She didn’t paw at it, nose it, or try to “fix” it the way she sometimes does when something on me seems wrong. She just adjusted. Quietly. Seamlessly. And she kept alerting exactly the way she’s trained to every time I needed her.
To the point where, no, I still do not get to go to the bathroom alone. But that hasn’t been true since the seizures began, and it’s not something I resent. It’s safety. It’s love. It’s a very small, very watchful shadow making sure I come back.
She didn’t mind the Bed Jail™ days either. The long stretches of shows, snacks, and stillness. Sometimes I wonder if she’d be happier as a so-called “house dog,” enjoying a quiet, uncomplicated life. And then she answers that question for me with a nose boop, or a firm repositioning of her body between me and the floor.
This is her life. This is her job.
And everywhere I am is exactly where she wants to be.
This space is about showing up for ourselves even when our bodies refuse to cooperate.
Chronic illness without inspiration porn.
Disability without apologies.
Love without pretending it’s easy.
Returning cryptids, welcome home.
New cryptids, pull up a chair.
Welcome to the Lunatic Café. The Den is big enough for all of us.
Today’s menu is simple and deeply cursed.
All of my thoughts about the six-day wearable heart monitor.
The Setup: Or, How Five Days Became Six
Let’s start here, because I know some of you are blinking at your screens wondering if you read that right.
Yes. Six days.
This was originally supposed to be a five-day ordeal. One I was not excited about but had mentally prepared for. Mostly. Then, on December 29th of last year (still weird to say), while my older brother Matthew kindly chauffeured us around for the day, I was informed that an extra day had been added.
Surprise.
Outside of some light, well-earned whining, I didn’t say much. But since this is our weekly health update, it feels like the right time to unpack it.
First things first: this hateful little device comes off tomorrow. Sunday. The original plan was eviction today, but the universe enjoys a delay.
I am trying very hard to be a good patient.
I am not a good patient.
I don’t mean to be difficult.
And yes, if you’re wondering- M&M is a saint for dealing with me through all of this. Sometimes, I don’t feel like I deserve her.
Adhesives: A Love Story That Is Not Mutual
I was told the battery life on this thing was about 2.5 days, and that I could remove it for roughly thirty minutes a day to shower.
In theory? Lovely.
In reality, this thing has worse battery life than an angry iPhone 10 with no storage and far too many apps open. By the time I wake up each morning, it’s hovering around 15 percent. The Biocare app telling me that it is dying, dramatically.
Off it comes.
My skin celebrates.
Briefly.
Not long enough to matter. Because by the time I start feeling a fraction of an ounce better, it’s telling me via the app that it came with that it’s ready to go back on. And I would rather do anything than put it back on. M&M makes sure that I put it back on though.
Despite having one of the best nurses I have ever encountered, truly, someone who handed me an entire bag of what I will forever call “hateful glue dots” marketed as skin-friendly for allergies, fragile skin, and older adults, my body still said no.
MCAS is MCAS.
She knew it. I knew it. The glue dots knew it.
My skin has been red, angry, aggravated, and deeply offended. Having my own shirt- okay, who are we lying to, I haven’t worn a shirt in days its been a onesie this whole time- or hair brush against me feels like an act of violence. It looks like someone dripped acid around the adhesive sites, and every removal takes a little bit of my skin with it, even when we’re careful.
In my professional opinion, 3M tape has no business touching human beings.
Or crippled cryptids.
Day-by-Day Field Notes from Bed Jail™
Day One was manageable.
The appointment went smoothly. The nurse was kind. We talked horror, shared show recommendations, bonded over IT: Welcome to Derry, and sent her off with suggestions for Silo andInvasion. We’re currently deep into season three of See.
We made a Sam’s Club run.
I think this might’ve been the best part of the day because I got not just one but two tubs of the spinach and artichoke dip that I love, and a bag of baguettes. My appetite may be MIA due to Keppra but finding this dip definitely helped bring it back. Even if it was only for a little while.
We also tried Raising Cane’s with Matthew for the first time, and discovered that M&M loves their coleslaw, and agreed their sauce deserves respect.
Maybe not enough respect to get it by the cupful like you see on TikTok and drink it but… a dupe has been located. (Because how else can you pay your brother for driving you around aside from feeding him?)
We also mailed something important.
No spoilers. The person who it belongs to will be getting it shortly after this post goes up.
M&M and I are thrilled.
Even with mail holiday delays due to the new year.
Day Two was when the battery lie revealed itself. The hour it spent charging felt like mercy.
Day Three was New Year’s Eve.
We scrapped the paella plans. Health has been unkind. Seafood was not cooperating. Instead, we made pizza dough early and spent the day with See before switching to the Stranger Things series finale.
Pizza. Garlic bread with Guinness cheese sauce. Sparkling grape juice from Trader Joe’s at midnight. Family. Aunt Lise on the phone. Laughter.
No BJ injuries this time. We still laugh about how the wine bottle cork refused to come out on Christmas Eve.
Day Four, New Year’s Day, was spent almost entirely in bed. This monitor has been kicking my ass. The only relief comes from the brief daily window where it goes back into its box and away from my body.
The app loves to notify me when my heart rate drops below 50 or spikes above 130, as if I have actionable choices here.
Thank you. Please stop.
Cheese fondue happened. Cheese remains undefeated.
Day Five, by the time you read this, will be yesterday.
I escaped Bed Jail™ for a few hours. Not because I wanted to, but because my back demanded a change of scenery. I missed my desk. I missed my keyboard. I missed writing like this.
No shade to the iPad keyboard. Just facts.
Day Six is tomorrow. Saturday. The final stretch.
We’re skipping the food bank this week. Not out of lack of love, but fear.
Fear of being stranded again. Fear rooted in racism we have already experienced- whether it was directly at our bodies or not. Fear made heavier by bad weather, a heart monitor, and mobility aids I do not feel safe juggling right now. If you want to know more, I’ll leave it linked around here somewhere.
So, we stay home.
And we hope to make it through mostly unscathed.
Saturday Update: Day Six (Live from Bed Jail™)
When I woke up this morning, the device itself was at six percent.
Lower than I’ve ever seen it before. Fine. Great.
My skin felt like it wanted to crawl off my body and take the rest of me with it.
That is not something I wanted to tell you.
But transparency means telling you anyway.
I had the monitor off before M&M even made it out of the bathroom. Much to her surprise, I was already peeling at the hateful glue dots. I am not a good patient, but she didn’t need an explanation. One look was enough.
She helped me into the shower, where we confirmed what we already suspected.
My skin is not okay.
This thing is waging open war on my body, and it still has more than twenty hours to go. The only reason I get a break right now is because it needs to charge, and I need it away from me.
I don’t usually cry from pain. But the water touching my skin was too much.
No onesie today. We’re pivoting to survival mode. A nightgown, or the softest hoodie I own. Coffee. Veggies with cabbage sauce. Leftover fondue. Spinach and artichoke dip. Bed Jail™. The last episodes of See on Apple TV+.
The only people I want to hear from already know how to reach me.
And of course, you. My readers.
I hope you’re having a gentler day than I am.
Wish me luck. It looks like the last day might be the hardest.
What Six Days Taught Me
This experience sucked.
Adhesives hate me. I hate them back. I hate knowing my skin will take weeks to calm down and find its way back to baseline.
But it also taught me things.
I logged symptoms ninety-eight times at the time of writing this.
Palpitations.
Shortness of breath.
Dizziness.
Chest pain.
Other… (Nausea, vomiting, the time I fell down the stairs)
I am dizzy more often than I admit. Standing. Stairs. Existing. Coughing.
Suddenly, an Apple Watch feels less like a shiny bauble and more like medical equipment. Something concrete I can show my doctors when words fail. Especially when it has a feature on it to tell me when my walking is unsteady- because I no longer trust myself to know these things, whether its due to Keppra or due to the seizures and my body lately in general.
It taught me that Bed Jail™ is not a punishment.
Luna knows that before I do.
She has learned my body in ways I’m still catching up to. The pauses before I sit. The sway when I stand. The way my breathing changes before I ever name it. While I was busy fighting the monitor, fighting the itch, fighting the idea of needing rest at all, she was already adjusting her job around it.
She nudged me back down when I pushed too far. She stayed closer on the bad days. She reminded me, over and over, that listening to my body isn’t weakness. It’s communication.
Some lessons arrive as data points and graphs.
Some arrive as a warm weight pressed against your leg, saying without words: you don’t have to prove anything today.
If you’re reading this and your first instinct is to tell someone like me what we should be doing differently, pause. The work you’re looking for isn’t in our homes or our routines. It’s in learning when to be quiet.
I know now that the test doesn’t end when the device comes off. Recovery has its own timeline, and my body is still negotiating it.
Bed Jail™ is sometimes survival.
Some days survival looks like Keppra doing its best while also making me dizzy, miserable, and uninterested in food.
Some nights survival looks like pizza rolls for dinner.
And that is allowed.
Leftovers exist for a reason.
Rest exists for a reason.
Closing the Den Door Gently
It’s a new year. I have hopes. Dreams. Quiet wishes for better health and a body that listens.
If you’re reading this from Bed Jail™, you are not failing.
You are surviving.
Love you.
Now say it back.
-Sky
© The Crippled Cryptid
Disability, honesty, and a little chaos.
If you’re here, you belong here.
If today was heavy, thank you for carrying it with me.
If you’re reading from Bed Jail™, give your service dog an extra scritch for me.
🔗 https://linktr.ee/skylanarissa
There’s never pressure to donate. Reading, sharing, or simply staying is more than enough.
If you’d like to support my ongoing journey toward health, stability, and mobility:
💜 https://www.gofundme.com/f/support-skys-journey-to-health-and-mobility
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