EEGs | Week That Tried to Bench Me
Content Note:
This post discusses chronic illness, disability, seizures, medical trauma, allergic reactions, medical testing, migraines, and the realities of navigating healthcare systems while medically complex.
Please read gently and step away if you need to.
Welcome to The Crippled Cryptid
This is your gentle heads up before we begin.
These posts talk openly about chronic illness, disability, hospital visits, symptoms, and the unfiltered reality of living in a body that doesn’t always cooperate. Some weeks are soft reflections. Some weeks are heavy. Please check in with yourself before reading and come back when you’re in the right headspace.
No one will ever judge you for skipping a post here.
This blog was originally written as a way for me to keep sane during Covid times when I was going through a lot and eventually wound up being something of a chronic illness diary. Over time it evolved into my spooky corner of the internet, a place where we share folklore the same way we share diagnoses. With humor, honesty, and realness so that no one ever has to feel alone.
So, trust me when I say that I understand when some things are just too heavy to hold, and too hard to carry. I will never judge you for any of it. Ever.
If you’re new here, hi. I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Occasional chronic illness and disability advocate.
Medically complex enough to make my chart look like a horror anthology.
I cope with sarcasm, stubborn hope, whatever snacks survived the week, and a concerning amount of coffee. Don’t tell my cardiologist, he might complain. But M&M does limit me to 2 cups a day. 3 if we run into a really bad day. (We try not to have really bad days.)
Most days are lived in a haunted meat suit with a questionable warranty and a very long standing feud with my nervous system. I spend a lot of time in Bed Jail™, but I’m rarely alone thanks to Luna, my medical alert service dog.
Guardian. Enforcer. Tiny chaos gremlin with a medical degree she absolutely gave herself.
She’s the voice that says, “Hey. Sit down.” And when I ignore her, she upgrades to, “Mumther, we are not negotiating with your bad decisions today.”
Sometimes, I’m convinced that she thinks that Mumther is my full government name when I’m misbehaving. The same way that some people go from Maggie to Margaret when they misbehave. Food for thought. But I’m the one to blame there, I did teach her to be a sassy little spirit guide. But when your body throws up red flags like gang signs, and you’re a cryptid that is notorious for ignoring all of them, sass is exactly the kind of energy that you need.
There’s also M&M.
My Player 2. My soft place to land. The one who shows up with ginger ale, soup, and the kind of quiet strength that keeps the world from tipping sideways when my body decides to startle everyone. She gives the 90% when I only have 10% and reminds me that survival is still a team effort.
This space is for chronic illness without inspiration porn.
Disability without apologies.
Honesty without pretending it’s always neat or hopeful or easy.
There will probably be dog hair involved.
If you’ve been here before, welcome back.
If you’re new, take a breath. You don’t have to prove anything to exist here. I promise we don’t bite.
On Today’s Health Update: EEGs and the Aftermath
Before we get into the glue saga, we need to rewind for a second.
Last Wednesday, the 4th, was the big seizure.
I’m not going to unpack every detail here, because some stories need more space than a weekly update can hold, but it shook all of us. Luna’s alerts were relentless, my nervous system felt like it had been dragged through a storm, and it was a sharp reminder that my body still writes plot twists I never agree to.
Being alone during something like that hits different when your body already plays by its own rules. But I’ll go ahead and leave the post I wrote about it linked here for you, just in case you want to catch up if you haven’t already.
Those of you who read that post already know that M&M and Luna weren’t with me again that day, which is the recipe for disaster. But there are some days and some places where they just can’t go unfortunately. We’re trying to minimize those days and those interactions, don’t worry.
And before you say the thing that I know you’re going to say, because I’ve already heard it from Aunt Lise and the people who care about me, “we worry because we love you.” I’m taking whatever precautions I can to make these outings alone less frequent. I’m being as diligent as I can about getting my own car again. Because right now relying on friends, family, Uber, and other forms of public transport just isn’t enough. It’s too expensive and it’s something that doesn’t always allow Luna and M&M to go everywhere with me and that puts me in dangerous situations that put my health at risk.
And those are risks that just aren’t worth it.
The Apple Watch is great for notifying me for high heart rates and notifying me and everyone around me when I fall but, there’s nothing I can do when I’m alone and have a medical emergency like that. So being alone really isn’t ideal.
And that’s where this week pivots from recovery into investigation.
But the EEG itself wasn’t just another appointment. It was the follow up. The “let’s figure out what your brain is doing when it decides to go off-script” test. Especially since this wasn’t the first seizure. So, I went into it already worn down, already tender, bruised, and honestly just hoping for answers that didn’t come wrapped in more chaos.
I really hope this is the last week I say “this is the week that tried to take me out,” because lately it feels like I’ve been saying it on repeat. And I don’t like worrying my people.
The cold and I already don’t mix well. But apparently, I mix even worse with EEG glue.
For anyone catching up, I started a 3-day wearable EEG on February the 6th, and it came off Monday the 9th at 2pm. Sounds manageable on paper.
Reality had other plans.
But doesn’t it always?
The Surprise Plot Twist: Office Visit Chaos
At 2pm on the 6th I received a confirmation text saying the test would be done at the office.
This threw a wrench in my plans. A big one.
Which meant a last minute $100 Uber ride that no one warned me about, after I had been told and promised by the doctor the setup would happen at home. He knows that I don’t drive right now, and that I have no reliable transportation due to the car accident that happened in October. So, Ubering to an important appointment like this wouldn’t be ideal, and setting up transportation appointments through insurance is something that takes at least 24-48 hours to schedule beforehand and that’s only if they have volunteers who are available to take you. That was the first red flag that this entire experience was going to be a ride I didn’t ask for.
After talking to every supervisor available, the options were simple:
a.) Go in and get the test done anyway.
b.) Pay a $200 cancellation fee and wait until July to reschedule.
If you didn’t already know, I don’t have an extra $200 sitting around to throw away on a missed test. Especially not an important one that I need to have done. And Illinois in July is practically the surface of the sun. So, I will most definitely not be doing that.
So, we went. Begrudgingly, of course. My hands were tied.
The EEG tech himself was fantastic.
Was he prepared? Definitely not.
I’m sure he was expecting another patient who knew what they were going to be going through. A quick, easy setup, and then he’d be going on with his day. Instead, he got me. Crabby. Sarcastic.
Ready to fight God… me.
Because what they should have done was inform this poor man that I have MCAS, that I have Ehlers-Danlos syndrome, that I have a whole bunch of alphabet soup nonsense going on in my body at all time. And that my body tends to throw a wrench in everything and they did none of that. So, I needed to give him the crash course.
But he was funny, kind, and by the end of the appointment he was just as frustrated about the situation as we were. We talked about dogs, Fallout the TV show, and how he too is a medical disaster. He’s honestly my favorite person in that office. By the time we got home, one of the leads had already tapped out, but I was told that as long as only a couple came loose and they weren’t “the big two,” the test would still count.
What no one warned me about was how my body would react to the adhesive.
But we had feelings going into it that it wouldn’t be good.
Newsflash: we were not wrong.
MCAS vs Industrial Strength Glue
For those newer here, MCAS means my immune system sometimes treats harmless things like they’re sworn enemies. Adhesives, especially strong medical ones, can turn into a full sensory nightmare.
Before I even left the office, it felt like fire ants had taken up permanent residence on my scalp and down the back of my neck.
I barely slept for three days. The itching was constant, relentless, and honestly overwhelming. I wanted to crawl out of my own skin. Luna didn’t know what to do with herself. She kept alerting, giving me her best “sit down now” stare, and looking at M&M like she needed to fix this immediately.
Sometimes throughout those three days, it felt like Luna was looking at M&M like it was her fault. Like she did this to me. It was hard not to feel bad. Especially when I knew that it meant that I couldn’t snuggle Luna the way that I wanted to.
At one point I genuinely considered having my scissors and letter opener confiscated so I wouldn’t go digging under the leads just to get relief. Dramatic? Maybe. Honest? Definitely.
That’s the reality nobody talks about when tests are scheduled. Sometimes the hardest part isn’t the results. It’s surviving the process itself any way you can.
The Removal Day Miracle
By Sunday, the tech called to say I could wet my head Monday morning to help loosen the glue. Just in case I wanted to make his life a little bit easier, and that it would probably save me a little pain in the office.
What he wasn’t expecting was for me to show up with every lead carefully removed, labeled, packed in a ziplock bag, symptom notes written out, and his equipment ready to go.
I might not have a medical degree, but I’ve been living inside this body long enough to know how to prepare for survival mode.
He looked genuinely relieved. And honestly? So was I. I just wanted it off.
Apparently, they’d just saddled this poor man with a last minute EEG to setup for, and I saved him a lot of time and effort. I am nothing if not self-sufficient when it comes to medical settings. Over time I’ve learned that I have to be.
Leave me alone long enough with a screaming IV pole when my nurses are busy doing other things and my fluids have run out, and I’ll figure out which button sequence will shut it up too. I can also remove my own IVs, do my own blood pressure, and tell you exactly which vein to draw blood from the first time without a portable ultrasound.
(This is not me encouraging anyone to DIY their medical care. It’s just what survival brain looks like after years of living in hospitals.)
You could say I’m a pro at this.
And no that isn’t necessarily a good thing. It actually says a lot about the American health care system. A lot of bad things.
The Aftermath Nobody Prepares You For
Getting the leads removed was only half the battle. And over half of the shampoo bottle unfortunately…
Back home, I had to shampoo four times and condition three just to soften the industrial strength adhesive enough to get it out of my hair. My scalp was raw, tender, and deeply unimpressed with me.
The kind of unimpressed that had me flinching, screeching, and wanting to disappear by the time I had to comb my hair.
Sensitive skin products already cost a fortune, and watching half the bottles disappear in one wash session felt like adding insult to injury. Part of me wants to send the office a bill for the amount of hair products I had to spend getting the goop off of my head and out of my hair. The other half never wants to shower again.
But I know that the last part is just because my head is still raw.
Even brushing my hair afterward felt brutal. Imagine 23 spots on your scalp being scrubbed, tugged, and irritated for days straight. Migraines didn’t just visit. They unpacked their bags. Threw their things all over the damn place, and moved in.
They stayed. They decided that they lived here now, and there was nothing I could do about it.
Luna got a bath too. Normally not her favorite activity, but winter has been rough on her skin as well, and she seemed relieved afterward. Small victories matter. Even when it feels like the world is ending.
Bed Jail™ Recovery Mode
Once the glue battle was over, it was straight to bed.
And I do mean straight to bed. Do not pass go. Do not collect $200. Do nothing but bed rot.
The wires, the backpack, and the short leash attached to the EEG made sleep almost impossible during those three days. Every time I rolled over it felt like something crawling on me or trying to strangle me. There’s just no way around it.
So, recovery meant catching up on sleep, letting my nervous system calm down, and finally allowing myself to rest and breathe without feeling tethered to a science project.
Headpats were reinstated. Hair down. No braids. No ponytails. Just gentle recovery.
And when it finally came off? The quiet hit first. No buzzing wires. No weight tugging at my scalp. No more cameras watching me sleep. Just that strange mix of relief and exhaustion that shows up when your body realizes the threat has finally passed.
The Migraine Hangover
I was basically one long migraine during the EEG and for several days after. Truthfully, I’m still not sure the worst of it has passed. I can still taste stale Nurtec, my migraine medication, in my mouth if we’re being honest.
Between pressure changes, allergic reactions, lack of sleep, and the lingering aftermath from Wednesday the 4th’s seizure, my body decided to run a full system reboot without asking for consent.
But the weather has warmed up a little, and I’m choosing to lean into that hope. Maybe the groundhog knew something after all. Who knows?
I know one thing for sure, the jokes I kept seeing on TikTok of people saying that January lasted for four years and people were going to grill his unseasoned ass if he said we were getting more winter were hilarious. I was 100% on board but, Woodstock Willy said we could have spring. So, your ghoul is hoping for spring.
So is Luna. She is 100% ready to go outside and play with her new ball.
Small Joys Still Count
Chinese New Year is coming up, and we’re all looking forward to celebrating. (And for you to see what we have in store! Posts are coming!)
Even Luna is getting in on the fun.
And after everything, we still managed a spooky Friday the 13th date night, which felt like reclaiming a tiny piece of normalcy after such a chaotic week. And you know what? We needed it!
Sometimes survival looks like celebration squeezed between recovery naps.
Weekly Symptom Snapshot & a Cryptid Pain Scale
0❄️ 1🌱 2☕ 3🌧️ 4🔥 5🧵 6🪨 7⚡ 8🌊 9🚨 🔟🕯️
What improved:
• Slight relief with warmer weather 🔥
• Luna settling once the EEG came off sort of | she did get a new ChuckIt KickFetch ball so she’s been a ball gremlin again! 🌧️
• Sleep slowly coming back online 🪨
What stayed rough:
• Migraine hangover 🕯️
• Raw, sensitive scalp, hair down constantly if I can help it 🕯️
• Nerve pain and pressure swings 🚨
What’s still in limbo:
• Waiting on EEG results | hoping they come in soon
• Nervous system acting like a haunted smoke alarm
• Energy levels hovering somewhere between “low battery” and “please plug in” with the ever odd moment of “let’s make the Ina Garten Brownie Pudding recipe I saw on TikTok” (which if you’re wondering is our new favorite thing)
Another loud week survived. Not gracefully. Not neatly. But still here, still stubborn, still held together by Luna, M&M, and whatever scraps of determination were left in the tank.
A Soft Check-In Before You Go
If something here hit close to home, you’re not alone.
If you stayed anyway, thank you.
Before you go, a little check-in from the Lunatic Café:
Take your meds if it’s time.
Drink some water.
Eat something small, even if it’s just a few bites.
No gold stars required. Just a reminder from one haunted meat suit to another.
-Sky
© The Crippled Cryptid
Disability. Honesty. Survival without the performance.
(As always, dog hair from Luna, lots of puppy love, and good vibes.)
🔗 https://linktr.ee/skylanarissa
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If you want to support the long, unglamorous work of survival and mobility:
💜 https://www.gofundme.com/f/support-skys-journey-to-health-and-mobility
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