Sunday Night Optimism 

You know those awful ten things posts? Yeah, I’m going to do one of those. 

I was being a bit of a grumpybum earlier, so decided to a list of reasons to be happy.

*accessibility warning – there are some fast rolling image gifs at the end of this post*

1. This guy. We’ve been together nearly 13 years & married for 11 of those this year. Aside from snoring like a dying gruffalo, he’s pretty amazing.

2. Mrs Gypsytree visited this summer. We didn’t get to see each other as much as we’d like as their summer started a month before ours does, but we got a lovely evening in where we celebrated them finally owning a real proper house in Norn Iron. I still miss her being a few minutes up the road, but they’re ever so happy & that’s good. 

3. I’m superhuman. Wheelchair racing has transformed being in a chair from a loss of mobility to a doorway to new friends, supportive but very real competition, and a sport that I can participate in for the first time since forever without crippling pain. Don’t get me wrong, it hurts, in fact on the first corner of this particular race my hip popped so badly that it came all the way out & I pushed 800m with a fully dislocated hip & a subluxed shoulder. At the end I was gasping for breath & Mr Geek had to haul me out of the chair and push everything back in & feed me morphine.

BUT, I competed in my first race with my friends, showed people we’re enabled, & we all came away with fist bumps and massive smiles.

This is the face of someone who is going to FINISH this race.

4. We’re getting somewhere with the joined up thinking. I’m now officially seeing the neurology team at UCLH and not only are they looking into the POTS symptoms, they’re being joined up and looking at the other weird nerve issues with the lack of feeling & strange reflexes in my feet, and looking at ways to manage the EDS. It means more time & lengthier stays here, but it’s progress and very positive. They even encouraged my chair racing as a positive way to keep the autonomic car crash that is my body as functional as possible 😆

5. Half way there! The scary seven are still enjoying lashings of ginger beer together. Despite now living 600 miles apart, the minute they get together they’re back to being the same tribe that they’ve always been. This year we couldn’t physically make it up to “our tree” so settled for a bench instead. They didn’t seem to mind, although this once again confirms that it is impossible to get a photo of all of them making a near sensible face!

6. My life doesn’t have to be restricted to reality. My hands may not grip pens or paint brushes anymore, but on a good day I can hold a controller and paint virtually. The VIVE has allowed me to return to using a virtual paintbrush & now sit quietly in a vast dark room and paint in 3D. The best bit is I can choose from any size brush and whilst the virtual brush size changes, the controller remains the size of a crutch grip & is as light as a tv remote control. I’ve learnt how high I can lift my arms now without dislocating (Although I still get engrossed and utterly forget, then re-enact the scene from Horton hears a who where the mayor runs from the dentist). Weirdly, I can self-propel in VR & it feels like normal.

7. My friends are just as daft as me. When it comes to showing cancer where it can shove itself, we certainly did. The volume of physio tape it took to hold three women with connective tissue disorders together must’ve made KT rub it’s hands together, but nothing beats seeing your proper mega serious marathon runner friend skipping beside you in a tutu. To top it off, Lizzie on the far right, won the whole flipping race as the 1st finisher in just over 17 minutes. There’s a reason she uses the hashtag #RoadToRio in her posts. And when (not if) she brings home a medal one of these days, I’ll still be chasing her like a slightly defective whippet after a rabbit!

This was one of my happiest days from 2016.

8. Yeah, ok, it had to be in there somewhere. I’m not out there kicking arse every day. Quite a lot of days I’m in here wondering how I’m going to make it those 5 meters to the loo without ending up on the floor in a heap. So to keep me amused, I have Pokèmon Go! There are a few teething issues with servers and the fact that the developers rather forgot that people with physical disabilities may have rather an issue with walking that 10k needed to hatch an egg, or get out there & explore for PokeStops… I’m sticking with it for now in case they add some more accessible features. Until then, here’s the bastard that chewed up 11 of my pokeballs & still got away!

9. Friends. But more importantly, friends who understand why I cancel plans at short notice, double book myself because my brain is shot to pieces, who still invite me to things even though I’ve declined the last four hundred times because I’m too tired. And who get that me being too tired means I’m probably actually in too much pain to be near people. Some of them are fellow Spoonies, others are just empathic enough to see through the “I’m okay!”.

They’re good people. 

10. And very much not least are Beanpole & TinyPants. They are wise beyond their years and not given nearly enough credit for the caring that they do. I have the best time with these tiny little ladies even if I do have to pretend I’m actually a grown up who’s in charge on occasions. There aren’t many 10 year olds that just stop acting up or having fun because they can see that mummy is in more pain than usual. They carry stuff, they give up trips out to snuggle in bed with the TV, they get on with their homework so I can nap. I may regret being so impressed with them once they turn into unresponsive grunting teenagers!

For now, I’m pretty thankful & optimistic for a good week. I hope yours goes well too. Xxx

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Stripey Warriors

A few weeks ago, I blogged about losing my senses and signing up to the local Race for Life 5k to raise money for Breast Cancer research. Today was the big day & a few of you asked for some photos.

I’m currently curled up in bed with all the painkillers, shoulders loose (only 1 popped out), bruised, skin torn, & a bit crispy from the sun, but it was worth it!

I raced with Mic & Lizzie from my local wheelchair racing club. We used racing wheelchairs because they’re lighter & just like a decent pair of running shoes vs. work shoes, they’re built for sport.

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Spoiler alert! We all finished in record time with Lizzie beating all 3000 runners by finishing the whole 5k in 1st place in 17 mins!! In her own words “disabled, ha! We’re enabled.” Mic finished in a stonking 27mins 18secs after aiming for sub 40 mins and I came in at 28mins 10 secs after aiming for sub 60 mins. Fair to say, we smashed it (mainly due to gorgeous people from our racing club positioning themselves along the course & shouting encouragement).

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Joining us was the lovely tutu’d Rachel who despite only just being thrown into secondary teaching and arriving slightly wild eyed with the look of a woman who’s been surrounded by year 8s for the past fortnight, ran alongside me shouting classic encouraging statements like “get out the way! She can’t brake!”, “Don’t slow down for the dog! Move your hound!!!”, “8 minutes left!! Have any of your limbs begun to detach?”, “We’re 1k off!! We’re going to fucking make it!!” (Love you rach 💓).

To prepare, Mr Geek had learnt how to strap up my upper body with kinesiology  (physio) tape and spent the morning creating a web of sticky fabric to hold my shoulders in place. This was supported by leather wrist braces & leather wheelchair gloves covered in latex cohesive bandage over my hands & wrists creating sticky paws that allow pushing of the rims whilst protecting my joints & skin (the last few sessions at training have resulted in either torn skin or massive blisters- EDS skin sucks). Today they held out perfectly.

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Starting was difficult because of the sheer volume of people (3000 people running!). Lizzie is an absolute pro & took off like a rocket. In fact, she was so fast that Mr Geek didn’t get any finishing photos of her as she got back so fast she took everyone unawares with no time to grab the camera!

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This is by far my favourite photo of Mic. The fighting spirit is strong in this one. She was clearly in pain and yet giving it absolutely every last ounce. EDS picked a tough fight with her & she’s kicking it’s arse.

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It may have only been 5k, but you know what? It was hard. Pushing against the wind & on a camber for the first half left me like a big ball of lactic acid, panting and wondering if I’d actually make it. I was vaguely aware of my right shoulder wobbling, but had seen our coach on the way up and was not going to let him down by wussing out. Rachel double backed at the end and started running with me at the 2.5k point. Then I heard Kim shouting encouragement and something snapped inside me, but in a good way. This is going to hurt like a bitch anyway, so let’s make it count.

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The crazy tutu’d woman & I went hell for leather on the way back, picking it up another notch on the final 1k. Adrenalin totally took over as my arms kept going despite feeling like they were on fire.

With a final “I can see the finish! We are fucking champions!!” from Rach, I looked up and saw our time. What you see here is utter elation at finishing what people said I couldn’t do & sticking a massive finger up at that “there’s no cure” diagnosis. Mr Geek found me shortly after & hugged me very tight. He got his kickass wife back a little bit today.

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The after effects of kicking quite so much arse aren’t quite as much fun though. I expected my joints to hurt (and OMFG they do), but I also caught the sun which is very unlike me… Whilst wearing tape. This is not attractive. I also pulled the tape away from my boobs a bit too quickly, tearing off strips of skin! Cue much germolene over weeping open skin. At least it detracted from the joint pain!!

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Despite feeling like I’ve been hit by a bus and knowing how hard the next week is going to be after pushing my limits over what anyone expected, it was totally worth it. Wheelchair racing has impacted my health both physically and mentally. I’ve rarely looked forward to physical exercise pretty much ever, but I buzz before racing. A lot of that is due to the people. We may all have disabilities, but we’re adaptive, bloody minded, slightly unhinged, and totally enabled.

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