So here’s something weird that’s been happening.
I’ll be sitting at my laptop, working, writing, answering emails, maybe just thinking about writing while actually scrolling through memes, and then poof… I disappear.
Not slowly, like that cosy afternoon nap you give yourself permission for. I mean one second I’m here, and the next, gone. Like someone unplugged my brain. Then just as quickly, I jolt back. Blink. It’s over. The dog’s still asleep. The kettle’s still humming. But I’m sitting upright at my computer, wondering: Did I just fall asleep while working? And it happens more than once; these strange glitches come in clusters. I can be pulled out of them if the phone rings or if someone touches me, like my nervous system is waiting for a jumpstart.
I’ve had a few of these episodes now. They’re not dreamy or floaty or warm. They’re hard and fast and jarring. And they scare the shit out of me.
When you live with MS, every weird body glitch carries a question mark. Is this just MS doing its daily chaos routine? Or is this something new? I am always scared of something new because in my support group, my fellow spoonies will say, “It’s never just one disease,” or “Once you’ve got one, you’ll get more.”
Please, no.
MRI (Eventually) Incoming
I haven’t actually made the appointment yet. I know I need to. But I’m still in the bureaucratic limbo of:
A. Figuring out whether my medical aid will cover it (spoiler: only a portion, yay South African healthcare).
B. …I forgot what B was. I genuinely had it a minute ago.
Anyway. MRI, neurologist, those are on the horizon. Somewhere between the load shedding schedule and the next cup of tea.
And I’ll admit it: I’m nervous. Not because I expect a terrifying result. I’ve already got a brain with white spots and a spine full of screws and wires. But I need answers. And the options on the table are… not exactly comforting.
Here’s the shortlist:
- MS fatigue, aka “lassitude,” which is a fancy word for soul-sucking exhaustion that hits like a tranquillizer dart. It’s not “you need a nap” tired. It’s “my brain is melting” tired. I don’t know how to explain it to people who have never experienced it. Closest is, imagine you’ve been awake for 142 hours and your veins are full of cement.
- Microsleeps, which are tiny, sneaky, involuntary naps that last mere seconds but could happen while I’m sitting, reading, or, terrifyingly, driving.
- Narcolepsy, which I don’t think it is, but hey, add it to the menu of potential plot twists.
- Or, worst case, seizures, though mine don’t come with confusion or post-episode fog, so that seems less likely. Still, it’s on the board.
What’s the difference, anyway?
I did some digging because I’m me, and medical rabbit holes are my weird comfort activity. Here’s the deal:
- MS Fatigue: Creeps in slowly, can last days, weeks, months (yup), worsens with heat or thinking or breathing. It’s not fixed with sleep; you just have to wave a white flag and collapse.
- Microsleeps: Happen instantly and briefly. You might not even realize it’s happening. They often show up when you’re bored, tired, or doing something repetitive. Like, say… staring at a screen trying to earn a living.
- Sleep attacks: Similar to narcolepsy, these come on fast and can make you collapse mid-sentence. (Not happening here, thank god.)
- Seizures: Usually longer, often come with confusion or memory gaps. (Not me. I come back online almost too fast.)
So what’s happening with me? I don’t know yet. But I do know this: it’s unsettling. So much so that Bugsy seems to pick up on it and he lies next to me quietly till I’m back before carrying on with his 18th zoomie of the day.
The Mental Load of Not Knowing
This is the part they don’t tell you when you’re diagnosed. Not just the disease, but the never-ending detective work. The constant second-guessing. The mental calculus of “Should I worry about this now or later? Or never?”
It’s exhausting. And honestly? Sometimes it’s lonelier than the actual symptoms.
But I’m trying to do the responsible thing. See the doctor. Get the scan. Ask the questions. Start taking rest breaks (who has time for this?) and hydrate (not so easy when your throat muscles are experiencing spasticity).
Things I need to do:
- Rest with intention: Schedule quiet breaks, not just flopping on the couch. Phone off, eyes closed, even if it’s just 10 minutes.
- Temperature matters: I keep a fan close by. Heat makes it worse.
- Bedtime boundaries: I HAVE to get stricter about bedtime; even though I want to binge British murder shows till 2 a.m., I simply can’t. A good night’s rest is imperative.
- Talk to my doctor: Not Google. Not Facebook. Not an Ai medical app. Get actual help.
I’ll update you if/when the MRI happens. I’m claustrophobic and terrified of going in that damn thing. Maybe there’ll be news. Maybe it’ll be “just fatigue.” Maybe I’ll get a fancy new Latin diagnosis to add to my collection. Who knows?
In the meantime, I’m still here. Still working. Still trying. Still curious.
Just with one eye open.
Kate X
