Wednesday 21st January 2026 - The slow-paced one-finger typed Edition
...accompanied by a box of Kleenex and floods of tears. Sorry, Hannah, my lashes have taken a battering.
Sometimes stress comes at you like a speeding train, and you just hit a brick fucking wall.
This afternoon's Sweary Affirmation
I am a magnificent fucking disaster, and that's perfectly inadequate for this Tuesday.
Today started brilliantly. Woke stupidly early (because of course I did), still sporting these delightful new symptoms that refuse to bugger off, but I was being a Proper Good Disabled Person™. Pacing myself like an absolute legend. Doing little things slowly. Taking breaks. Resting. Basically, ticking all the boxes on the "How Not To Wreck Yourself" checklist. Mood was good. I was feeling quite chuffed with myself, actually. Determined to do my very best within my very limited capabilities. Up dressed, new wig on and ready to face the afternoon adventure out of the house.
Plot twist: I failed.
Everything came crashing down anyway. Now I feel bluer than Paul's beard in its less purple heyday. This sodding illness has taken so much from me - physically, mentally, emotionally. And here's the absolute piss-take: even when you do EVERYTHING right, life can still throw you a curveball from nowhere, totally out of your control, and turn your day completely on its head. You make all the "adequate adjustments" (ha!), and it's still not enough.
You've still failed. You still feel worthless, upset, and properly furious at the world. Then you suffer even MORE because of the bandwidth that emotional bollocks takes up.
Someday's You. Just. Can't. Win.
I spend ridiculous amounts of time and energy beating myself up for not being able to work, or missing meetings, or having to dial in virtually because I can't drive or my lift falls through. Missing birthdays. Parties. Watching my best friends' kids grow up from a distance. Missing their 16TH not seeing my best friend in over 18 months, the amount of gigs we've paid for and just not made. I can't even go in the bloody corner shop because I can't get through the door or walk up the road, and it's not wheelchair friendly.
I couldn't even visit my dad in the hospital until this week, and he's been there TWO WEEKS. His heart's dodgy, and then the numpty only went and caught MRSA in there. Combined with my stupid immune system, that meant I couldn't see him at all. But my dad - so chilled and funny about the whole thing. God, I love him so very much. (More than he loves me, obviously - it's our thing.) I wish I could take things in my stride like him
(The Ellyllons are having an absolute field day with that guilt trip, by the way. Little bastards.)
I'm not good enough. I hardly leave the house because I physically can't on my own. But what's life without purpose? What's it worth? I slap on a wig and a smile and try to be my best self, but today that's not good enough. I'm not good enough.
No silver linings today. Just shit. Pure, unadulterated bullshit.
The One Good Thing (Because Even Disaster Days Need One)
Dadio's getting his metal valve heart op next week - basically becoming a cyborg, which is brilliant. No date yet, but it's happening. His dicky ticker is getting an upgrade to Tin Man status.
I'm half expecting him to set off every security sensor for the rest of his life, which will provide endless entertainment. Once he's bionic and some of my stress plates empty themselves, maybe - MAYBE - I can spend proper time with my newly metallic Dadio and actually help my sister instead of being a useless lump who can't even visit hospitals without risking plague.
Where I'm At Right Now
Properly struggling. Like, really, really struggling. To the point where I'm genuinely wondering if everyone would be better off if I just fucked off entirely, because apparently "I'm trying my best" is the world's most useless currency and I'm bankrupt.
I've spent all my spoons. I've no more fucks to give. I'm stuck in bed, one-finger typing this with my dodgy finger because my aphasia and voice-to-text are absolutely NOT friends. Turns out, when your brain can't find the right words, Gemini just gives up entirely or suggests complete gibberish like "banana curtain hospital" when you're trying to say "I'm struggling."
So here I am, pecking away like a very slow, very sweary pigeon, because that's literally the only thing my body will cooperate with this evening, and even that's taking the piss. At least if I could manage sweet fuck all, there'd be no expectations. But no - I can still slowly type with one finger - so clearly I should be able to do EVERYTHING ELSE too, right? (Wrong.)
And Just To Really Complete The Day...
ARSE. I've just remembered I forgot to take the sausages out of the freezer for dinner. Shit. Bollocks. Wank.
So now Paul's going to come home from his Lichfield Live paper round, knackered from his own Long COVID shenanigans, and find his broken wife stuck in bed AND no sausages for him and Connor to cook for dinner (because my brain is apparently made of Swiss cheese and my body won't cooperate enough to let me do anything this evening.... think Sha.....Options:
- Ask Connor to defrost them in the microwave - but they'll be rubbery and disgusting
- Ask Paul to pick up takeaway (again) with money we don't have - wallet cries.
- Pretend I planned beans on toast all along - "It's retro! It's comfort food! It's definitely not because I'm a useless lump!"
This is what they don't tell you about chronic illness. It's not just the big dramatic stuff. It's remembering you need to do a simple thing, your brain goes "LOL nope, deleted that information," and then spending the next hour beating yourself up about FROZEN FUCKING SAUSAGES. I even set a reminder on my watch.
The Ellyllons are having a right laugh at this one. Tiny bastards probably hid the memory on purpose.
Right. Fuck it. Beans on toast it is. Paul loves me anyway. Probably.
(He definitely does. He married me. Poor man's stuck with me.)
Tomorrow's Mantra Tonight {For Hope}
Tomorrow the sun will rise, and so will I. Probably. Eventually.
I will try again to pace myself (and probably fail, but that's fine). I'll attempt to find whatever silver linings exist, even if my eyeballs are still painful (new symptom), my face hurts, and the best I can manage is the cats still tolerating me"
I will seek whatever good there is - I will try to do and be better. Or at the very least, I'll try to be less of a miserable cow. Or fuck it, maybe I'll just try to survive, and that'll be enough because some days that's all you've got and that's perfectly bloody valid."
Tonight's Reality Check: Some days you're the windscreen. Some days you're the bug. Today I'm definitely bug-shaped and splattered. But I'm still here. Still typing, with a different finger and that'll do me.
I wonder if Hannah can squeeze me in for a lash infill because I've cried so much. After all, it's Paul's birthday on Friday, and I'd quite like to look vaguely human for the occasion.
Oh, And While We're Cataloguing Today's Failures...
SHIT. I didn't order Paul's Birthday present either!
So let's review: I forgot the sausages, forgot the present for Paul's birthday, and now I'm lying here wondering if I can bribe my lash tech with... what? Sympathy? Empty promises? A slightly squashed Freddo I found in my handbag? A bottle of Red?
"Happy Birthday, darling! I got you fuck all, dinner's beans on toast again, but MY EYELASHES LOOK CRACKING!" He's gonna love that. Really selling the "in sickness and in health" dream here, aren't I?
Note to self: Tomorrow (if I can move), order Paul's present. And grovel to Hannah. And maybe invest in a giant whiteboard that just says "DON'T FORGET EVERYTHING, YOU MUPPET" in massive letters.
The Ellyllons have REALLY outdone themselves today. Proper little chaos gremlins.
#WheelyHappyDays #ChronicIllness #FND #MECFS #Fibromyalgia #RealTalk #SurvivingIsEnough #KOKO #BrickWallDay #NoSilverLiningsSorry
#GetUPAndStartAgain #RememberYourHusbandsBirthday #TillDeathDoUsPart