Wheely Happy Days: The Purple Rocket Edition! 🌟

Hello again, my lovely followers! Sha here, bringing you update number... well, I've lost count, but we're definitely deep into this #wheelchairadventures journey now! For those who've been with me since the beginning, thanks for sticking around. For newcomers - welcome to my world of wheels, gigs, and refusing to let FND stop the fun!

OPERATION PURPLE ROCKET: PROGRESS REPORT 💜

So Thursday was MASSIVE in my quest for more independence! Remember I've been banging on about wanting to get to festivals and gigs more easily? Well, I finally got to try the wheelchair of my dreams - the Trekinetic GTE Mk3 powerchair!

The lovely bloke from Mobility for You brought it round to our house, and I got to properly put it through its paces. This isn't just any wheelchair - it's genuinely like something out of a sci-fi film, but in the most practical way possible.

🤦‍♀️ MAJOR SOCIAL MEDIA FAIL ALERT: I spent YEARS as a marketing and social media manager, and yet we completely forgot to take a photo of me actually IN the chair! So we've had to pinch photos from their publicity material. This is beyond embarrassing. Paul and I are kicking ourselves now. All those years of telling clients "content is king" and "visuals drive engagement," and what do I do? Forget the most basic rule of social media. The FND brain fog is real, folks! At least they gave us their brochure with photos of the chair itself. #MarketingProfessionalFail

THE TEST DRIVE 🌪️

For those who've been following my journey, you know my current wheelchair has been my first step toward freedom since my FND diagnosis. It's already opened up so many possibilities! But this Trekinetic feels like it could take that freedom to a whole new level, especially after that adventure at the High Horses gig where we realised how much more accessible the world could be with the right equipment.

We went wild with the testing:

• Up and down our street (easy peasy)
• Over those annoying kerbs that usually leave me stranded
• Across the gravel patch that normally sends my current chair into a wobbling mess
• Over speed bumps without feeling like my spine was being compressed
• And the ultimate test - our garden, which thanks to my fatigue and Paul's council duties currently resembles a small meadow 😂

The chair handled EVERYTHING! Those three wheels instead of four aren't just for show - they make it incredibly stable. And at only 34kg (with battery), it's amazingly lightweight.

FESTIVAL DREAMS BECOMING REALITY? 🎵🎪

You all know my main goal is returning to festivals and gigs like we used to before FND decided to gate-crash my life last September. This chair would be an absolute game-changer.

The removable battery means I could take just that to the charging points (rather than attempting to navigate the entire festival site to find a power socket). And unlike my current setup, I wouldn't need to lug around those massive ramps - the chair breaks down into manageable pieces that can go into the car boot.

Plus, it can switch between power and manual mode with just a lever flip. Imagine if the battery ran low at a festival - Paul could still push me without the motors fighting against him!

 

THE "HOW THE HELL DO WE AFFORD THIS" BIT 💷

Now, here's the bit that's been keeping me up at night (along with the usual FND fun). This beauty costs £14,000 ish for the model I need, even without the extras I'd like (such as the colour).

It's a massive amount of money, and there is no getting around that. We're investigating every avenue - we'll probably need to take out a loan for most of it, but we're also looking into mobility grants and disability funding options.

Paul suggested I start an OnlyFans page featuring "sexy wheelchair tricks" and "racy ramp manoeuvres." (Not really! Though the look on Connor's face if we set one up would almost be worth it.)

Some of our friends have suggested crowdfunding, but I'm not comfortable with a GoFundMe. Whilst we can't afford to stretch to this unaided, we're not badly off, especially when I see what other families are facing. That said, if anyone knows of specific grants for disability equipment or has experience getting funding for similar chairs, I'm all ears!

WHAT'S NEXT? 🦶

For now, I'm deep in research mode (when the brain fog allows) and trying to work out how to make this happen. The freedom this chair would give me would be life-changing - not just for festivals, but for everyday independence.

I'm also going to check out some alternative all-terrain powerchairs that might offer similar capabilities without the eye-watering price tag. While the Trekinetic was incredible, I need to be practical - there might be something out there that could do 80% of what I need for 50% of the cost. If any wheelchair users have recommendations for rugged festival-friendly chairs that won't require remortgaging our house, drop them in the comments!

On the positive side, at least I got to experience what's possible! Whether I end up with this exact chair or a more budget-friendly alternative, I now know what I'm aiming for.

Next week's adventure: I'm attempting my first cinema trip since the FND diagnosis. Wish me luck - hoping for no seizures during the quiet bits!

Until next time, Sha 💜

#WheelyHappyDays #FND #ChronicIllness #AccessibleAdventures #WheelchairLife #PurpleHairPurpleChair