[Insert Witty Title Here]

It’s been a funny old day facilitated by a lot of painkillers. It’s been a bloody long one too. A total of 13 hours from leaving for work to returning home. That might not be much to some, but 13 solid hours in the wheelchair with no chance to transfer, or stretch out, or in fact have a nap after a tosh nights sleep was all a bit much.

I was greeted by a colleague today who goes out of his way to help me navigate the doors at work each morning. Not out of pity, but because he gets that it’s just hard opening doors and he misses the sense of community from his home country that is lacking in the UK. I enjoy our morning chats and I find his very honest love for people infectious. I’m a grumpy arsehole in the morning,  but he brightens my day by leaping out of his classroom to hold open a few doors just for me.

This morning he asked me how I stay so cheerful and positive. He really meant it. I did a presentation at the start of the year to the whole school faculty and apparently I was genuinely passionate. I do smile. I do ask how people are. I do laugh off the crappy days. It worried me that I seem so genuinely positive. Have I really got that good at faking it?

Of course I’m not going to tell you I’m in agony and my pelvis is burning. Instead put on a big smile and say “I’m fine! How are you?” Or make some stupid quip about having all 4 limbs.

Of course I won’t tell you about spending 20 minutes this morning layering on special concealer, foundation,  and powder to hide the eye bags. I do appreciate you saying how well I look though as it validates my make up skills.

Edit: before and after. Eek!
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Of course I’m going to shrug and say it could be worse, or there’s nothing I can do so why worry? These lines are so well versed that even if believe them some days. And actually only a couple of people get away with the following up of “and how are you actually doing?”. Mrs G, Mr Geek & Mr Gypsytree get honest answers. They are the glue that holds the bits of my mind together. Mrs Gypsytree aka Sherlock gets a special version where I don’t have to say much.*

How do I stay so positive?  Easy. I fake it. And apparently I deserve a bloody Oscar.

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The reality is that I got home today after a 12 hour stint at school + an hour of travelling in so much pain I found it hard to speak. I hit tired at lunchtime and pushed through tired into manic, then into plain weird where I got cross with Mr Geek for chewing to loudly near me, then finally rock bottom where I just cried buckets because I typed the Gypsytrees’ collective names. Just to help, I now can’t sleep as my legs are restless and ALL the painkillers aren’t helping my extremities or the headache that’s creeping up the back of my neck.

A huge part of that reality is being scared that if I rage about being in pain and physically useless all the time I’ll get boring and that stuck record will get old and eventually be left alone. So instead I smile as if my life depends on it. Because to a certain extent it does.

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On a much funnier note, a student at school went joy…err..hopping on my emergency crutches that I keep in my 1st floor classroom today. In his defense, he hadn’t considered why they are there, nor what would happen if there was a fire and my chair failed. Equally in his defense, with hindsight it’s quite funny watching someone describe a TWOC offense (taking without consent – which is usually reserved for vehicles) when referring to crutches. How far did he think he would get? We’re they going somewhere?  Why would you do that? Is there a crutch black market? The teenage boy brain baffles me. The hardest part : keeping a straight face.

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* Note to self: It’s OK to miss them. It’s not ok to get runny mascara over the Marvel Duvet cover. Captain America now looks like he’s been down the mines.

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Spoon Theory In Action – Ireland Part 2

Continued from part 1

Day 3 Friday

Spoon total : -10

I slept in until 9am this morning, not even hearing the kids. Mr Geek gently poked me and suggested that I may want to emerge as Beanpole was up and having breakfast (it’s her 11th birthday!). Still clad in pyjamas, I shuffled out to give my birthday girl a hug. 

Spoons +2 for lay in

The kids were far to excited to eat properly, and in true Enid Blyton style porridge was shoveled down necks and they raced off to tidy up and pack before the birthday cake was unleashed. As we waited for operation tidy up to actually commence, I sipped on the protein shake that has become my breakfast of choice (or rather necessity, as anything that isn’t smooth is now getting stuck before hitting my stomach, or just makes me feel sick). Whizzy asked what it was and asked if it was milkshake. “Sort of”. “Can I has some?”. I let her taste a bit and the facial reaction received was priceless. My 3 year old youngest goddaughter managed to convey with that one facial expression the difference between a real milkshake and a protein shake. 

Spoons -2

Next up was packing up our bits and time for air travel safe presents! Poor Beanpole was so tired she barely noticed the books and cards handed to her and was terribly weirded out by her birthday being completely unusual for her. She’s a creature of habit and likes to know what’s about to happen.

  
Spoons -2

The plan was to visit some of Mrs GypsyTree’s family as they were staying in a local holiday complex. What we had gauged was a 30 minute journey, was actually 50, but if nothing else gave the kids time to nap in the car, and nap they did.

Spoons -2

The place we were visiting was totally set up for outdoorsy kids and they almost instantly found the playground. And the mud. Oh, so much mud. But at least they were happy… Or just odd. I’m pretty sure they were happy though.

  

The kids played, we followed them about and chatted with Mrs GypsyTree’s lovely family, and I finally got a chance for a quick selfie with Mrs GypsyTree whilst we watched from the safe Tarmac by the playground. 

  

Selfie shot done, it was time to go.

Spoons -4

As we gathered our things, it dawned on the Beanpoles that time to go actually meant time to say goodbye until at least February. That’s a long time to miss out on seeing your surrogate sister. It dawned on me that the Beanpoles miss each other just as much as I miss Mrs GypsyTree.

  
Spoons -2

After another special day that meant a lot to all of us, we headed back to the house to collect our things then headed up to the airport for the trip home. Saying goodbye to the munchkins and Mr GypsyTree was hard and far too rushed, but we left them in a place where they’re happy. And that’s all you can ask for anyone. 
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Spoons -3

In the car, the kids regaled Mrs GypsyTree with every random story they could come up with, despite it being the end of a very long day. Dinner was junk food at the airport before a particularly eventful flight home.

We eventually landed and reached our car at 11.30pm.

Spoons -8

Once at the car, I dozed as we drove home having taken my evening meds 4 hours later than normal and beyond exhausted. 

Spoons -2

End of day total: -33
Saturday Morning

Getting out of bed isn’t happening. Even with my refreshed 20 spoons, I’m waking up with a deficit of 13 spoons. I feel like the walking dead and act like it all day, spending the whole day in my pyjamas clutching my reflux beaten chest whilst laying inside my mega pillow on the sofa. I briefly got up to attempt dinner, but decided that bed was a much better prospect. 

Thankfully, despite more painsomnia, Sunday was a much better day.
Someone needs to learn how to manage her spoons better.

Spoon Theory In Action – Ireland Part 1

Today was an utter write off. This is not a bad thing my lovely readers, I just needed some time to wait for my next set of spoons.

Some days are better than others and require fewer spoons for basic things than other days, but I’ll be as accurate as possible…

The past 4 days have gone as follows:

Wednesday:

Spoons = 20

Got up & dressed : -2 spoons

Tried to book gp appointment online & failed because their website sucks. Phoned surgery to begin for an emergency prescription as I’d calculated wrong and only had 3 days of painkillers left! : -3 spoons

Supervised kids whilst packing own clothes: -3 spoons

Helped Mr Geek return the hired wheelchair & picked up back brace and lunch : -3 spoons

Ate lunch & helped kids sort out their washing : -2 spoons

Picked up emergency prescription & drove to airport whilst running late as Mr Geek got stuck on a work call : -5 spoons

Airport & flying fiasco : -6 spoons

Late night chatting with my bestest of best friends : -2 spoons

End of day 1 spoon count: -6

Thursday

Spoons = 14

Taking painkillers late meant staying awake until 2am with painsomnia which instantly deducted spoons because I woke up tired. -3 spoons

Woke up giggling as Bambi “tiptoes” down the stairs hollering for everyone to be very quiet. I’ve missed that voice!

We’re in Omagh and Mr Geek was heading out with Mrs Gypsytree to get some breakfast for everyone. I shuffled out to the kitchen to be presented with coffee by Mr Gypsytree and generally be surrounded by the 7 kids that we have collectively produced : -2 spoons

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Mr Gypsytree is about as close as having a brother gets for me. He is dry and pokes fun at me and attempts to come across as the big hairy man in my life, but has discreetly been my absolute saviour on a number of occasions. When he left for Ireland, I cried more than his wife did!

Breakfast returned with a shining example of why Mr Geek & Mrs Gypsytree shouldn’t be left unsupervised:

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Yes. That is a Batman Onesie. Ffs.

I nibbled my way through a croissant that made me feel nauseous whilst we decided what to do that day: -2 spoons

We decided to let the kids play until after lunch then we’d go out to the memorial gardens and the park. The kids were totally happy to race around the house just being them whilst we chatted in the kitchen. My eyelids were stinging from overdoing it the day before and I had to fight hard to maintain focus whilst we chatted (There were a few occasions where the eyelid fairies were hanging off my eyelids and I needed to prop them open). We haven’t seen them in 3 months goddamit. I will enjoy this!
-4 spoons

After lunch we wrapped me up in my jumper and blanket, got the wheelchair out and headed out into Omagh. Our first stop was the memorial garden which was far more moving than I expected. Reading the names of all those people with a mirror created for each of them (including the unborn twins) just made my heart hurt.

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By this point, I was cold. But the kids were still lively, so we carried on over to the park.
-4 spoons

The walk down to the park left me shivering (Northern Ireland is bloody freezing!), and yet the kids were happily parading around with our coats whilst I huddled under my shawl. The park was lovely and reminded me of the park that Mrs Gypsytree and I spent many damp summer holiday afternoons having car picnics at back home.

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I’ll hand it to Ireland – they really know how to do Autumn, and who wouldn’t want to be happy for these two:

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Eventually, the kids started showing signs that dinner would be appreciated and so we gathered the masses and started the wander (push) back home.
-3 spoons

Back at the house, pizzas for the kids were put in the oven and the menfolk were sent out to hunt for dinner (in Asda). Mrs Gypsytree provided sustenance to each child who promptly plonked their exhausted bottoms in front of a film whilst the adults pottered. This included me warming my various extremities on the radiator. (I was expecting to meet a polar bear at any point).
– 2 spoons

Kids weren’t so much put to bed as asked to go as it was kiddie Sleepover time, and they wanted to sleep!

The rest of our evening was spent eating baked camembert, bread & brisket (totally FODMAP friendly) and playing either Exploding Kittens or Adventure Time Munchkin.

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Some parts of our friendship never change. Time flies and before we knew it, bedtime had hurtled past us.
-4 spoons

End of day 2 spoon count: -10

…. to be continued 😉

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.

Same thing we do everyday, try to take over the world

I read an interesting blog today from someone who is equally struggling with the idea that a single genetic mutation has royally buggered up her plans. It’s a funny idea that you’re not going to take over the world anymore.

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Except that actually, I am. Just not in the way I’d thought. I’m not sure how things will pan out & I don’t think it’ll ever be how I’d planned it.

Last academic year ended with me dragging myself around in a big ball of pain. I started the summer feeling so much better, then bombed. And each time I bomb, I go a little bit further downhill.  But despite that I’m still trying to take over the world. But it’s so bloody tiring.

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So, somehow despite reading up on spoon theory, apparently I can’t count. All spoons were used by 1.30, but I still had another class and a duty to go. By the time I fell into bed and inhaled more painkillers, I ran out of all cutlery. I am the Uri Geller of spoon theory, except I’m not bending them, I’m screwing them up and throwing them at my life.

I’ve used up my spoons and everyone else’s spoons. I have spoon debt. And what feels like shards of glass in my hip, back, hands and knees that codeine isn’t touching despite mushing my brain up.

So basically, I started the day as The Brain and I’m ending it as Pinky.

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