Dear Fatty

(Yes, I know I shamelessly stole the title)

New (academic) year, new challenges. But this year marks a big one and a massive personal challenge for me. If you’re reading my blog, then you’re probably already know about the fun & games I have with Ehlers Danlos Syndrome – TLDR; it’s shit & cramping my style, but this month marks the 1 year anniversary of fracturing my spine and just over a year since my hearing dropped to unworkable levels. Life went on. But without my beloved racing that was an outlet for lots of rage – but now I’m back! Wonkier, in more pain, and with an extensive arse (the image below is my “thinspiration” – a combo of being stationary & evil painkillers has wrecked my weight).

So, with new work challenges I knew that I needed to build in some head space and get back to racing, but with our club now super popular it would be difficult to have a chair set up for my weird & wonky limbs. I’d saved up a percentage and reached out to The 53 Foundation for support – then after completely forgetting I’d contacted them I got an email telling me that they’d love to help me fund the rest of my chair & to go ahead and order it!

As an able bodied peron, the financial layout for going for a run is as simple as some trainers & leggings – an entry level wheelchair is £625 (professioal chairs start at £3k), so this grant was quite literally a game changer.

With my chair winging it’s way to me, I knew I had to pay this kindness forward and whilst I’ll be racing to raise money for the 53 Fondation soon (I promise!), there is one woman who I can’t ignore for my first race.

That’s me in the lurid pink alongside team mates who made sport fun for the first time ever.

That's me in the lurid pink!

At the end of October, to prove I have properly taken leave of my senses, I’ll be participating in the Great South Run (oh the delicious irony!) in my chair supported by my amazing friend Rachel & Mr Geek. Instead of sponsoring me for a big charity, I would be eternally grateful if you would consider making a donation towards Shona’s powerchair GoFundMe. It breaks my heart that this amazing young woman who dedicates herself to helping others in the bendy community has to resort to crowdfunding to get an appropriate chair, but lots of us have been there.

Training starts in earnest now and I’ll be posting updates on how we’re doing (even if that is elongated whining about how much everything hurts!). I’m not aiming for a PB – because Ive never pushed that far, so it will be a PB! I have no aims for elite sport – I simpy want to finish in as few pieces as possible (and have the following week already set aside for bed rest).

Wish me luck!

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A Wheelie Good Summer

I’ve not blogged for a while as I’ve been in a bit of a slump. The lack of outdoors has rather hit me this year & combined with missing my partner in crime and her tribe as the weather attempts to look vaguely like spring I’ve been having a bit of a pity party for 1.

Having always been a bit of an active family, finding myself sitting on the sidelines or being wheeled about on nice flat surfaces is immensely frustrating. And welcome to the conundrum that is knowing that I am immensely lucky to have Mr Geek to look after me whilst also being so frustrated at being left out & having no physical outlet for stress.

I’ve made peace with the idea of being in a wheelchair. My pelvis is shot & the nerve damage is clear. But the pain Management team gave me that tiny light at the end of the tunnel that with persistent physio there is the hope of improving my general pain levels and upper body. But ongoing physio isn’t a thing that’s on offer – it’s a case of being given ideas and doing it yourself. So off we went and found this!

Hiring was our initial thought, but with only a couple of places in the UK offering this, supply & demand means that prices are upwards of £125 ($180) per week. Erk! So, what about buying? …. an adult bike is usually a few hundred pounds…. oh. The curse of the disability markup strikes again.

So, what to do. Firstly, we start saving as much as we can. Secondly, my doctor has referred me to wheelchair services to ask for help with a manual rigid chair, and finally, swallow my pride & concerns and ask for help.

image

https://www.gofundme.com/294kw344

If you’re reading this, I’d be so grateful if you’d consider sharing either this blog, or my link.

As always.
Sending much love into the ether that is the internet 💕