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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Important Thank Yous

Last week I had a very frank and open talk with my headteacher about how I’m coping since the EDS decided to kick my arse and kneecap me. I’ve had a number of these meetings with other people, but he has a way of really listening. I have mountains of respect for him, and whilst I don’t always agree with him, my opinion is always welcomed and heard. He doesn’t suffer fools, and I respect him immensely. So when he asked how I was coping, I was more truthful than I have been with even members of my own family.

I’m angry quite a lot of the time. This isn’t how I’d planned to spend my 30s and there are days (and weeks) that I feel like a shitty teacher. There are certainly days where I’m in too much pain to follow a lesson plan as expected and I end up needing help from the kids.

He asked me how the kids were acting towards me.

Our kids have rolled with it. They barely see my disability – all they see is a teacher and yet on my bad days where the circles get so dark under my eyes and something audibly cracks, they discreetly move chairs out of my path and ask to spend lunchtime in my classroom (which just happens to coincide with bringing me tea), or change direction so they can open doors. They’ve always been the best part of my day, but I see them in a new light now. One where teenagers are infinitely kinder than adults.

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In my desent into my special pity party, there have been a few people who have just got it, and others who don’t but still move heaven and earth to keep my chin above water.

My postman delivered a cheer up chicken gift today from my lovely friend Mrs M. There’s hundreds of miles between us, but she managed to utterly brighten my day and make me feel very humbled. She’s put up with more poop in her time than anyone deserves, and although we don’t always see eye to eye, we respect each other’s great big gobby opinions. We all need someone in our lives whose heart is as big as their mouth. Those people are the most real people. They keep us grounded.

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I also have my sister-in-law, who is a total warrior. Seriously, Xena has nothing on her. She is the ultimate role model for Beanpole as how a woman who has Aspergers can function whilst also sticking two fingers up to a world that demand she conform. I see how Beanpole struggles each day with fitting her square peg into a world full of round holes and looks to her Aunty for cues how to get there. When Beanpole visits her, you can see her visibly relax because if she squeaks or needs to stroke the eyes of her panda no one is judging her there. Aunty Squeezy is her calm in a great big stormy world. She’s also a massive support to me because she tells me straight if I need to get a grip, guides me through ways to get help, and speaks up for me when I’m too embarrassed to ask. She was also the first person aside from me and Mr Geek to see our daughters & was in fact there when TinyPants was born  (she met TinyPants before I did!). Biologically, I don’t have a sister,  but in reality I do.

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There’s also Mrs G who is always there at 3am to mop up the tears. A decade of this and she still hasn’t kicked my arse. The woman has the patience of a saint & I can’t wait to give her a hug when her children have finally stopped infecting her with germs!

And I know you’re reading this Sherlock. Don’t think that we don’t think about you guys every day.

There are lots of you and I wish I could thank all of you personally, but this is turning into a gushy Oscars style speech so if you’re reading this and we’ve had contact over the past few days, I want to say thank you. People’s kindness over the last 48 hours has been overwhelming.

Going Out – sick girl edition

I have the best friends.

A few months back I was in full on panic mode that my Sherlock was leaving. But it turns out that through joys of the internet,  I can connect with some truly wonderful people.

In just over a fortnight, we fly over to see my Sherlock. Having spent the weekend pretending not to find her tweets horrendously frightening, I can’t wait to see her & Mr Gypsytree and get a tiny slice of normal for a few days.

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Tweety link

Sunday night has been spent laying wrapped up in my massive pillow &  adding silly comments to a shared spreadsheet that my amazing friend Shell has created of possible cottages / castles for up to 16 of us to run away to after Christmas for another weekend away. She’s slogged her guts out to find the perfect venue for everyone & been so tactful about making it accessible for me. There’s very very little that would persuade me to travel north of London, but I’d brave Hadrian’s wall to spend another weekend drinking tea and just being. I hope she knows how important she is.

Saturday evening was an actual going out night. We’d made enquiries about how accessible the resturant was and they’d assured us that aside from the steps outside it was fine. (There were 3 of us with serious stair issues). Apparently toilets that are downstairs don’t count as not accessible for people in wheelchairs or using a walker!

I started the evening determined to look like a normal human and resorted to YouTube tutorials on make up to cover up looking like death. I also got into my tiny black dress (This hasn’t fit me for years! ). Slightly concerned that I looked like a lady of a certain profession, I decided to commit to the look.

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Even Roboleg was not hugely noticeable. (OK… I was at this point still elated about being back in my ‘thin dress’. The rest of the side effects of the gabapentin are horrible – the sudden weight loss is a silver lining!)

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And then we got to the resturant…. a few steps? Repeat after me: we can do this. Don’t fall on your arse. Don’t fall on your arse

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Once inside & in my chair I felt much safer. Certainly safe enough to tell off the waiter who talked to me like an imbecile. “I’d like to sit at the end please. There’s nothing wrong with my brain – you don’t need to speak slowly”.

Wine was nice.

Choose something with sauce. Eat slowly. Don’t choke. Drink water. Chew slowly. Don’t choke. Smile. I’m the last to finish. Fuck it, leave the rest.

This is me teaching Mrs G how to selfie. I couldn’t give a crap about the age difference,  she’s bloody awesome. And the toughest, outspoken, caring and sweetest person alive. If I could choose family, she’d be it. Mrs G is our official mother hen… she makes a great mum no matter what she protests.

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I was really quite proud of myself for getting out and talking to real people. I threw every spoon I had at it & have spent most of Sunday in a vague brain fog with hideous heartburn. But surprisingly mobile!

If I was being sensible, I would have saved my spoons to get through next week. But, I’m not sensible. No regrets. You never know what’s around the corner, but all across the country I’ve got people I care about. It might be thanksgiving across the pond, but life is pretty cool here too.