Tuesday 20th January 2026 - Burning Feet and Broken Sleep

Right, let's talk about last night. Or should I say this morning? Because at 4:39am, my Ellyllons decided to host their most intense rave yet, and I definitely didn't RSVP.

Picture this: You're asleep (miracle in itself), and suddenly your feet feel like they're literally on fire. Not "ooh, a bit uncomfortable" pins and needles. Proper, intense, "I had to crawl across the bedroom floor like a sloth to press my feet against cold bathroom tiles" to try to soothe the pain because I couldn't stand at my granny Zimmer to soothe the pain. It didn't help.

New symptoms are terrifying. There's no other word for it. When you've got FND, ME/CFS, and fibromyalgia already throwing their daily party in your nervous system, and something new and more extreme shows up uninvited? That's when the anxiety dial gets cranked right up.

The 4:39am Entertainment Programme
So there I was, back in bed but unable to sleep because:
Random zingy fireworks pains popping up everywhere
Stabby shooting nerve pains (the classics)
Another  poker headache
A ramping up of the shakes and tremors
And Goosebumps and that lovely feeling of "ants crawling on my skin" sensation (not had those in ages - cheers for the comeback, body) Eyeballs so painful I wanted to remove them. Double and blurred vision cranked up to 11

Sleep? Absolutely not happening.

So naturally, I did what any rational person does at that ungodly hour - I played the Insomniomaniac Neumerrology game. YAY.

I WOKE AT 4:39 means.
Numerology reckons: It's about divine guidance, transformation, building foundations, trusting your intuition, and releasing old patterns. Angel Number 439 suggests balancing earthly discipline with helping others.
At that precise moment, my inner voice was shouting something very different, and it was all expletives. 😂

For the non-mystical folk: In Unicode, U+1F439 is the Hamster Face emoji 🐹. The binary equivalent is 110110111. Which is absolutely fascinating when you're trying not to cry from nerve pain at stupid o'clock in the morning.

The NHS Lottery
By 8am, I'd called the GP for an urgent appointment.
"You are caller number 19."
FFS.

Sixty-five minutes later: "You'll get a phone call sometime this afternoon." And here's where the anxiety really kicks in - it'll be some random doctor who knows nothing about my Ellyllons, my history, what I've been dealing with. I'll probably be dismissed. I'd love to get all my blood run while I'm actually experiencing symptoms, but that's not happening today.

But you know what? I'm still planning to go to Burntwood Afternoon Cinema this afternoon. Even though my vision's properly fucked. Because sometimes surviving means doing the thing anyway, even when your body's being a complete bastard.

Today's Three Good Things
Dadio's angiogram is today - one step closer to getting him sorted.

Dark humour still intact - if I can find hamster emojis and binary codes at 4:39am, the Ellyllons haven't won.

I documented everything - maybe it'll help the random GP understand this isn't dramatic, it's fucking real.

Today's Mantra
"My feet are on fire with pins and needles, my vision's buggered, and I'm caller number 19 in the bastard queue. But I'm still here, I'm still fighting. They can do one. KOKO, you magnificent, resilient, stubborn 'kincowbag."

New symptoms are scary. The NHS wait times are frustrating. But we keep going because that's what we do. Some days, survival IS the only thing you can do. And if you're reading this, dealing with your own 4:39am nightmare? You're not alone, bab.

KOKO
Love Sha💜
#WheelyHappyDays #FND #MECFS #Fibromyalgia #ChronicIllness #Ellyllons #KOKO #NewSymptoms #ChronicPain #DisabilityLife #ActuallyChronicIllness #SurvivingIsEnough #439am #InsomniaLife