By Published on

Monday 12th May 2025

Me sitting in a manual wheelchair outside Samuel Johnson Community Hospital. I'm wearing a grey cardigan over a blue dress, with sparkly rainbow sandals adding a pop of colour. My bright red hair contrasts with the more subdued hospital entrance behind me. I'm looking directly at the camera with a slightly wry expression - the familiar 'hospital visit face' that balances between determination and resignation. The wheelchair is a standard manual model rather than my powered chair.
Hospital chic: rainbow shoes mandatory for medical appointments! @theaardvark

Morning loves... well, afternoon actually. Time's a bit fuzzy when your brain's wrapped in cotton wool.

Note: When I started this blog, I promised myself I'd be honest about the wheely happy days AND the wheely difficult ones. Today definitely falls in the latter category, so consider this your friendly warning that it's not all sunshine and rainbows ahead.

My day started with a proper list of intentions, but my body had other plans. The unholy trinity of FND, Fibro, and chronic fatigue has staged a full-on rebellion today. I've swallowed the painkillers, found my comfiest spot, and tried to quiet my mind, but it's like herding cats in my head right now. Can't concentrate long enough to finish a thought, let alone actually DO anything.

Bearded Theory festival is now less than a week away. I'm frantically trying to 'bank every spoon I can find'. (For those unfamiliar, 'spoons' are a metaphor used in the chronic illness community to represent the finite amount of energy a person has each day.) It'll be my first outdoor festival on wheels - talk about jumping in the deep end! It's giving me anxiety. Will I get stuck in mud? Will I see anything beyond people's backs? But festival me refuses to be silenced. I've got my fingers, toes, and wheels crossed for dry weather.

Health Update: Had my OT appointment at Samuel Johnston today to look at mobility aids. The highlight was definitely the hot wax bath for my arthritic hands - bliss! If you have arthritis and you've never tried one, I recommend it. It's like dipping your hands into warm, soothing magic. For those few minutes, you forget they're the same hands that struggle with buttons and jar lids.

Today's Intentions (or rather, what didn't happen):

  • Potter around the house (my body laughed at this suggestion)
  • Pot plants (Paul stepped in and watered them instead)
  • Help cook dinner (ended up with takeaway - zero regrets)
  • Follow up on Councillor casework (the emails multiply when you're not looking) - done
  • Write speech for tomorrow (words are hard when brain fog descends) - done, with help

Three Good Things (because I'm determined to find them, even today):

  • Had plenty of rest (not by choice, but my body's grateful)
  • The OT nurses were properly lovely and that hot wax treatment was heaven
  • This time next week, I'll be at Bearded Theory Festival! (wheels and all)

Evening Reflection: I'm drowning in negative energy tonight. It's like a thick, heavy blanket wrapped around my mind, taking up all my head and heart space. The brain fog isn't helping - trying to sort through anxious thoughts when your brain's moving at half speed is like trying to run through treacle.

My confidence has taken a nosedive lately. Being in this chair has me questioning everything - how I see myself, how others see me, what my place is in the world now. When you go from standing to sitting overnight, people's eyes change how they look at you. Or maybe I'm just more aware of being looked at. Either way, it messes with your head in ways I wasn't prepared for.

The frustrating bit is that my go-to coping mechanism - meditation - feels impossible right now. Can't settle my mind long enough. So these thoughts just whirl around like a demented carousel, keeping me awake and making me question who I even am anymore. The Sha before the wheels and the Sha after feel like different people sometimes, and I'm still trying to make friends with this new version.

Some things are beyond my control - I get that. But learning to protect my wellbeing while navigating this new reality is taking more out of me than I expected. The physical exhaustion I was prepared for, but the mental gymnastics? Nobody warned me about those.

I consider myself a positive, happy, kind person; the one finding silver linings and cracking jokes, but tonight I'm just... tired. This chronic illness rollercoaster is relentless, and frankly, I want off. (I was always more of a hook-a-duck girl anyway - predictable, achievable, and you always win something.)

Tonight it's the sofa of dreams for me - the stairs might as well be Everest. I hope tomorrow brings more sunshine to my mind.

Affirmations (that I'm really trying to believe):

  • I am worthy (even on wheels)
  • No, really, I AM worthy (my brain needs the reminder)
  • Keep on Keeping on (what other choice is there?)

The thing about #WheelyHappyDays is that sometimes they're actually #WheelyBloodyChallenging days, and pretending otherwise doesn't help anyone. We roll on, because that's what wheels do, innit?

Anyone else feeling like they've been hit by the chronic illness bus today? You're not alone, loves.

Sha x

#ChronicIllnessReality #FNDLife #FestivalAnxiety #WheelchairAdventures #KOKO