🎙️ We Were On Lichfield Radio & I Only Lost My Words Twice
.........well more than twice, but I hope I masked it! 💫
Right. So. 5:30am. Five thirty!. In the morning. I want it on record that I lodged a formal complaint with my own body at approximately 6:01am, and that it was, as usual, roundly ignored. 😤
BUT. Hold on. Let me just take a breath here. We did it. I know. I genuinely cannot believe it either. But we did.
Enormous thank you to Lichfield Radio, the brilliant Ruth Redgate, and our very own Paul aka @theaardvark aka #TechGuyPaul 🦔💻 for having Aimeevark and I on air to talk about Burntwood Spoonies, our carer groups, the shiny new website — and to debut our Little Tune to an unsuspecting Thursday morning audience. Sorry, Lichfield. You deserved a warning. 🎵
I started this whole thing from a place of complete, desperate isolation and loneliness. Somehow, somehow, it grew wings and took off. I don't know how. I don't know who signed off on this. But I'm not complaining. On good days and bad ones, this makes me so happy I could cry. Quietly, ridiculously proud of us all.
📻 For Anyone Who Missed It (All Three Of You Who Were Awake At That Hour)
The big message: this is not just for Burntwood. Burntwood Spoonies and Wheely Happy Days are for anyone, anywhere in the district — spoonie, carer, or just someone who Googled "why does everything hurt" and ended up here. Come find us. We've got tea, terrible puns, and absolutely no judgment. 💜
🎬 Lights, Camera, Full Existential Crisis...
I'll be honest with you. I was terrified. Anxious about my aphasia. Convinced I'd lose every word I'd ever known the second a camera pointed at me. Worried about the stuttering, the twitches, the shakes. Basically, the full Sha variety pack, right there on camera for TikTok.
And then I remembered my secret weapon.
A wig. Some lip gloss. And the audacity.
💄✨ My personal twist on the old adage: "tits and teeth, darling." Except mine is a slept-in wig, a bit of lippy, and a smile that says "I'm fine" while the internal chat is absolutely not fine. It's smoke. It's mirrors. It's theatre. And honestly? It works. For about forty-five minutes, I felt like the old me. The one with a spark in her soul and a fire in her belly, not just a faint flicker going "please, please don't let me fall asleep mid-sentence on a Thursday morning radio show."
I didn't fall asleep. I count this as a win. 🏆
(At the moment. I said, "at the moment." I'm learning, Ami! 😄)
☕ Elevenses at Costa: A Spoonie Gathering of Champions
To everyone who came out to Costa — you are legends, every single one of you, and I say that as someone who is now fully horizontal on the sofa in her PJs, in dialogue with a nap that may be trying to become a coma. 😴
The DWP got a roasting. The NHS got a gentle but firm talking-to. Politics came up. Poor Shaz's son sat there like a man who had agreed to one coffee and accidentally wandered into a spoonie summit. He nodded. He smiled. He did not run. Bless him. He is a hero of our times. 🏅
Massive love to Shaz, Lorna, and Karina. I absolutely butchered your name in the video. I am so sorry. I owe you a biscuit.
And Shaz. Shaz literally gave me one of her spoons. One of her actual, precious, hard-won spoons, so I could get home. My phone had also died by this point, so the journey home was an adventure I will be processing for some time. But I got here. Eventually.
✨ Three Good Things From Today
- 👱🏻♀️ The wig is a game-changer, and I will not be taking questions. I came. I wore it. I conquered. There may be a wig review coming. I'm just saying.
- 💜 Shaz shared a spoon with me — If you want to understand what this community is in one sentence, that's it right there. That's the whole thing. I was in the red. She topped me up. That is us.
- 🎙️ I did the scary thing and the scary thing did not kill me — Camera, microphone, full symptom bingo card, four hours' sleep, and borrowed spoons. Still here. Still talking. Slightly haunted, but here.
🌙 Tonight's Bedtime Mantra
I wore the wig. I said the words (most of them). I spilt none of the coffee. I got home (eventually). That, my loves, is an absolutely stonking Thursday. 💜
Now rest. The spoons will still be there tomorrow. Probably. We'll see. 🥄
Totally, completely, magnificently done in. But full to the brim with silver linings. 🌟
Shoot for the moon, peeps. Maybe tonight the Sandman shows up on time for once.
Sweet dreams.
Love, Sha 💜
⚡ P.S. Actions & Consequences: A Spoonie Maths Lesson
I knew what today would cost me. I did it anyway.
And I'm not going to pretend I'm not now lying here feeling like I've been wrung out and hung up to dry. Because I absolutely am. That's just the maths. Spoonie maths is brutal and it doesn't care about your feelings.
But here's the thing. Every time we show up, speak up, go on the radio half-asleep in a fabulous wig, drag ourselves to Costa on fumes, we make this community a little more visible. A little more real. A little harder to dismiss.
Someone saw that TikTok today and felt less alone. I'd bet my last spoon on it.
So yes. I'm wrecked. Yes, it cost me. The bill has arrived and it is steep.
Worth it though. Obviously. 💜
(Ask me again at 3am when I can't sleep. I'll probably still say yes.) 😄
#BurntwoodSpoonies #WheelyHappyDays #SpoonieLife #SpoonieStrong #ChronicIllness #SilverLinings #WigLife #TheAudacityOfMeOnAThursday #KOKO #ElevenzeesChampions #TikTokTookCourage #NobodyWarnedLichfield #SpooniesMaths