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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Gifting my Spoons

Today was the kids’ Christmas fair at school and I’d agreed to help out (you know, because I have tonnes of spare spoons). In return the parents association agreed to give all of the donations given at the door to the Ehlers-Danlos UK charity.

As usual, facepainting was really popular, but not so busy that I didn’t have time to paint a special candy skull for my friend Kate.

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I’ve not picked up a paintbrush since August, so I was so relieved that my hands held up. I’ve not been able to hold a pen for more than ten minutes, but using sponges & paintbrushes seemed to be OK.  Perhaps because the action of painting is light compared to writing. Whatever it was, although my designs were pretty basic, I lasted the couple of hours I needed to and created lots of reindeer, Elsas and Anas.

A friend asked me what I was doing there in that “but you’re ill” way, and then we fell about laughing. She’s been at the front line of all of these events for the past 5 years despite battling breast cancer in a way that made Boudicca look like a wallflower. We had a great chat about sucking it up for events like these because they make us feel normal and God it feels good to get out and feel normal.

We got home at 2.30pm and Beanpole and I have been cwtched up on the sofa under a blanket since watching Willow whilst I sink into a nice dihyrocodeine fuzz. All spoons have gone, but it’s been a good day & I’m so proud of my babies for helping out their school and taking care of me. We’re a pretty awesome team.

I’ll have to wait and update this post when I find out how much they raised. But as a nice little bonus, I got to give lots off posters and things from when I signed up with EDS UK to the school to help raise awareness with the teachers 🙂

This is me and TinyPants with the Headteacher, Mrs Harrison. I’m going to miss these days when they’re all grown up in high school.

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