Talk to The Hand

We’re going away this weekend with a group of friends that we see a couple of times each year in person, and regularly online. We are the good side of meeting those weirdos that spend hours playing computer games – we are those weirdos.

Each time I see them a little bit of me has dipped. It’s like a health version of those growth charts where you measure the child & mark it on a door frame. The last time we all met up was last September & I was coping well – my rosacea was trying to eat my face, but I was cosplaying in a mask so it was fine. Since then, my neck has got worse and causes much more frequent blinding migraines without warning, and my hearing has got worse.

The first is unpredictable, but I can throw drugs at it & they’re used to me being gently massaged back into place by Mr Geek as we carry on our game. There’s a neck brace, but that’s to keep my skull from sinking & re-enacting scenes from GoT. Like the other braces, largely ignore it. The second is constant and more of an issue – I can’t hear you.

So this post is more of a pre-holiday Deaf Friend 101 for my friends of stuff I’ve learnt works & ideas to nake everyone a bit more comfortable. It also includes a few signs so you know why I’m flapping my arms about.

I Can’t Hear You (properly)

Seriously, I can’t stress this enough. It’s got worse since the migraines stepped up a gear and if you call my name, I’m going to hear (maybe) the vowels – if there’s other people talking, you’ve no chance. To get an idea, imagine being in a really noisy club (yes, I know we don’t do social) and trying to have a chat. Their voice melts into all the other noises & you haven’t a fucking clue what they’re saying. Now put noise cancelling headphones on that play a hugh pitched ringing, and you’re almost there in my head.

My hearing aids amplify everything, not just your voices. It’s sensory overload – whilst it makes everything clearer, listening to crisp packets open in HD all day gives me a massice headache – I prefer my quiet dentist drill head.

How to help:

  • If I’m not looking at you, tap my shoulder (it’s not rude) or wave
  • If lots of people are talking, make eye contact & still wave
  • Talk normally, shouting distorts your mouth
  • Please don’t cover your mouth (if you have a beard expect a fair bit of guess work on my part)

Want a quick answer? Try a sign:


(For help you, just switch the direction)

Playing Games

Board games are great because they have visual clues to what’s going on. Except we play arsehole games where we switch rules & co-op (badly). These are confusing anyway, but I am channelling my World of Warcraft character here – I’m on /follow and wondering why you guys are yelling.

This does not mean that I don’t want to play! I have some serious FOMO right now. I shall go to the ball & laugh inappropriately because I misread what was going on.

Ooh look! More videos – because every day is a school day 🙂

Win!:

Lose!:

Fire Alarms & Such

Being practical, you stick nine nerds in a cottage one of is going to set the fire alarm off. I do hear alarms, but duller (is that a word?) so they invoke less of a reaction. In an emergency, just point to the door – I’ll get it & as we’re on the ground floor gettig out on wheels shouldn’t be an issue.

For less desperate stuff…

Need:

Doctor:

Tired (not big boobs):

Bed:

And finally, because they’re a staple at every meetup & I want to see you sign this without laughing (icepop):

Finally finally, yay for the weekend & Superbowl Sunday with awesome people 🏈

All of the sign videos are from the BSL Dictionary.

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Cooking XMas Goose

The first weekend after Christmas was set aside for internet geekery. I’ve been sitting on this post for a while as I wasn’t sure of the start… Or middle… Or end.

When we teach internet safety, one of the first things we drill home is that people online may not be who they say they are and meeting up is a bad idea. So what do we do? We book a massive cottage for a long weekend with 17+ people who have pretty much only ever met online (aside from the couples… Those of us married to each other know each other quite well)… Oh and add to that offering a lift to the guy who lives up the road from us.

As a bit of background for those who don’t know, Mr Geek and I “play” World of Warcraft (when I say play, we sporadically jump on, have fun in guild chat but rarely actually progress through any actual game play). We’ve been playing more on than off since just before the Burning Crusades expansion which means we’re retro. That’s retro, not old. We’re also part of a guild called the Fighting Mongooses in which we’ve made some really close friends and spend an eyewateringly large amount of time with. The last 6 months or so, we’ve not played much since I’m still trying to find a way around being caused pain by using a mouse (Suggestions on a postcard please), and yet when I do pop in for quizards I’m still treated like I never left. These are good people who have seen me through some very unpleasant bed bound days. So what else would we call our Christmas gathering but XMas Goose!

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After driving 3.5 hours north (like really north where the signs point to Northern towns instead of just saying “The North”), we arrived at our cottage. The cottage was a strange conversion of many little cottages on the ground floor and an enormous first floor. The plan was to wrangle me upstairs then spend the next three days without leaving the house so I could scoot about happily in my chair. We arrived having not been full of conversation as I was exhausted from work and more than a bit nervous. The long journey had been counteracted by installing me on the back seat surrounded by my full body cushion (thanks Jo), covered in blankets, and wedged in by bags.

Can you find my legs?

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I was left in the car whilst discussions took place about how to wrangle me upstairs. After a while in a dark car, I was met by progressively larger and hairier men who all greeted me by name.
Sidenote: I’m reasonably sure that had this also included a winged set of Cumberbatch angels, this would be easily mistaken for having died and gone upwards.
I digress. Hello once more hairy menfolk… Oooh with vodka homebrew. Yep. I’m not intimidated, or in fear of my life. My WTF-are-you-doing metre has never been good. Shell was there – it’s all good.

Said hairy men assist with crutches and me onto them then laugh hysterically as I bum shuffle like a toddler up a set of unnecessarily steep wooden stairs until I’m sat on my arse on the floor greeting everyone else. Not wholly dignified, but hey, start as you mean to go on!

After some initial vodka based icebreaking (thank you L), and for the rest of you I know, but it was only a small glass, we discovered that midget prostitutes are a thing in Europe, fruit vodka is yummy, T watches some very dodgy manga, and it is scientifically feasible to build a wall out of cultivated living human liver (but you’d need a gate). It turns out that when you stick a load of socially awkward nerds in one cottage and add alcohol, amazing things happen. They talk for a start. This was an unhealthy concentration of programmers & IT professionals – usually there are normal people to balance out the weirdness, but not this time. Dan The Accountant was no match and so just came over to the dark side.

Card games commenced. Starting with Exploding Kittens, and quickly descending into Cards Against Humanity.

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Shell found the safest place was away from the smut and instructing from afar, much like her pixel driven clothwearer. I know she’ll hate me for including the photo, but she looks awesome in the Jedi slanket & this photo is nice. She looks happy. I like this. Other Mr Geek looks confused.
I never did thank him for helping me upstairs. Thank you other Mr Geek 🙂

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This is pretty much how the whole weekend went. Card games included, but not limited to : Exploding Kittens, Cards Against Humanity, Flux, Uno Accountant Edition, Munchkin….

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It was also decreed that all must wear a onsie at some point over the weekend. J won hands down with his seal. I mean, how could he not win?!?

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Eventually, the nerds needed more distraction than just paper based games and Mr Geek plugged in his PC (oh yes, he’d driven all this way with his gaming rig which someone had to sit in the back with). He’d also brought the Steam box so not only did we have instant PC games, but the ability to connect 8 XBox controllers. The second the OS flickered into life, it was like watching nerdy moths. Nonetheless, whilst most got stuck into a game of Gangbeasts, it gave some of us chance to catch up in person and fully connect people’s online names to their real ones.

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Eventually, everyone gathered around the TV for the final few rounds of Gangbeasts before moving onto Mount Your Friends. If you haven’t discovered this true joy of a game, stop reading this and go buy it. It’s utterly childish, but so much fun.

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The word of the weekend has to be “motherfucker”, not only because we were all child free for a whole weekend, but because of the overheard conversation where it was asked if that was actually a swearword. We nearly fell off our chairs laughing.

Over the course of nearly 3 days, we consumed a diet of nearly pure junk food in which my gluten free diet went out of the window, or I’m sad to say into my intestines (I also discovered chicken tikka masala pixza – try getting that in the home counties). There were cups of coffee in there somewhere and Mr Geek consumed more beer than I’ve seen him drink in a long time.

On which note… Mr Geek relaxed. With me installed and Shell quietly looking out for me (yes, I noticed and thank you xx), he stopped fretting and chilled. He regained the colour in his face, enjoyed being with other people, and we felt like a reasonably normal couple, aside from him relocating my shoulder for me after a particularly enthusiastic round of Uno. I won. Totally worth dislocating my shoulder for. As he put it back in, I winced as it tore a ligament slightly (the loud snap probably didn’t help) and I was compared to John Wayne. Ha! The only reason I don’t yelp that much is I know how bad it will be. You scream when the pain is an unknown quantity. It took a week for it to stop swelling – Uno is a dangerous sport.

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When it was time to leave on Sunday, we eeked it out for as long as possible with me having that same twisty gut, don’t want to say goodbye moment that we had at EGX. It didn’t matter that we’d see them all online within a week once we’d all recovered from so much social contact, the magic spell over our tiny nerdy bubble was going to be broken and we’d have to stop laughing. Even packing up was funny, aside from A falling down those damned stairs – I had said I wouldn’t catch him, but every single one of us shreiked like a girl and had visions of him rebreaking his poor shoulder. Aside from S, who true to form called him a penis.

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I dislike that we live so far away from so many of them (although we made a promise to meet up more regularly with those closer… And for reference, meant it :p ). There was a point very very late one evening where we all got a bit of an insight into each other’s psyche and found out that we’re really not that different. Somehow, through all those millions of players, we found a group of kindred spirits there, none of whom were psychotic axe murderers, and all of whom gave me a whole weekend of feeling like a normal person instead of that person who’s ill.

Driving home, I hid under a blanket and watched downloaded episodes of silent witness whilst trying not to barf (gluten combined with slow transit & car sickness is grim). I will admid to a teeny bit of under blanket sniffling.

It’s not goodbye, its au revoir. And if you need me, just put your fingers on the keyboard and just /whistle

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<3<3<3<3

Weirdos Like Me

Some days feel very lonely in the world of me. Mr Geek is a constant source of silliness in my life, but sometimes I just need my friends to cheer me up. It’s just that they live bloody miles away! Then along comes Facebook.

I posted a thing that’s doing the rounds on 9Gag about women braiding their own beards & instantly got whoops from 2 special people, so I thought I’d give it a go. No mirror,  no dexterity in my fingers, but a beard was created.

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Then Mrs Gypsytree followed suit with her own dreadlock version. She doesn’t take much egging on to be my partner in crime…

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We were kinda dissapointed that GiddyKnitter hadn’t joined in the fun, but ce la vie….. then we realised that she’d gone full beard. She nailed it.

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My friends, no matter the huge distances between us make me feel like I’m not the only loony in this bin. You bearded women are awesome.

And they have better beards than me.

Dear Friends Inside My Phone,

There was a campaign some time ago to ‘look up’. This encouraged people to stop staring at their phones and look around them. I like this idea. I love the idea of just being in the moment as my kids run through piles of autumn leaves as I ignore my batphone. But let me show you the reality of today.

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Dysautonomia is telling me to chill the hell out today. I woke up at 6.30am with every intention of having a normal day & heading off for work, but it had other plans and whacked my internal temperature up (or rather told me I was boiling when my actual temperature was fine), and made my head spin. I lasted less than 20 minutes of sweating, palpitations and tunnel vision before I gave up and went back to bed before I barfed on everyone.

Mr Geek set a desk fan up to help me “cool down” and I slept off the weirdness. Eventually, I woke up at lunchtime, shivery because now I’m cold (wtf?) & the blinds are still closed because muting everything keeps this lovely spinning headache at tolerable levels.

This old man is channelling my energy levels today & keeping me company instead of his usual harassing of Mr Geek in his office. (Cuddles are demanded which is great whilst on an important Skype call).

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“The phone can’t be helping”. Not normally no, but a fellow blogger showed me a brilliant android app called Twilight which puts this red overlay on the screen. This can be constant for times like this when my head hurts, or you can set it to work with your local sunset & sunrise times to stop the blue light from your phone interfering with sleep patterns.

And herein lies the thing. Not being able to be a social butterfly due to a lack of spoons (and inclination), the friends on my phone are part of an intricate support network that retains a fair amount of my sanity. This is a thank you to them.

When I have down days, they send me messages letting me know I’m not on my own & they utterly get why I’m venting on my blog. They join in with me laughing at myself. They let me know that my frustrated rants made them laugh.

Just today, I’ve been able to reach out to onlinr support groups without moving from my bed to worry about this latest dysautonomia flare, and be totally reassured that it’s just me overdoing things. Just from that, I feel less panicked and validated for not pushing through and getting Mr Geek to drive me to work.

Some people I’ve never met & yet know some of the most personal parts of their lives, and vice versa.

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Others I’ve known for years, but the portal of communication has allowed us to go from that person I know of to friends.

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Sometimes people just pop on and let me know I’m not on my own.

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Others I’ve met online many years ago through gaming & then in person & then am really sad that they live so far away. Basically because I miss them.

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Then there’s Mrs Gypsytree who now lives a million miles away and yet I still get to talk to her every day because of this little screen in front of me.

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It’s not all blogging. Facebook groups have enabled me to meet real life people locally who are going through the same crap & share a common interest in cake despite it wrecking our systems.

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Then there’s the occasional tweet or like from someone online that makes everything go squeee!

Like someone liking my blog when it’s about them 🙂

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Or when TinyPants drew a get well card to a blogger in Canada when she had surgery & I found out that she saw it 🙂

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Or when Catherine Russell (Serena in Holly city) liked a tweet 🙂

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You see? The intended purpose of the internet was to share ideas widely and without boarders. It’s now far more than that, and yes there are things happening in the real world, and yes there are some awful things online, but there are also some amazing support networks that people don’t get to see.

So next time you see someone apparently ignoring the world and smiling at their phones,  don’t assume it’s just a funny cat, it could just be the human contact that they needed.

I Don’t Know What To Say To You, but @emilymcdowell_ does

Even Mr Geek has been bottling up all his fears recently. It’s shitty when someone you love is falling apart and you can’t help.

Just so it’s very very clear: Mr Geek, I love you, you’re a dick head & also everything I ever wanted. And I love you.

Right, now that’s done, for those of you who also don’t know what to say to that friend who’s having a shitty time, let me introduce you to Emily McDowell and her proper greeting cards.

These are some of my favourites & if anyone wants to get me any of these, it’ll be much more gratefully received that a get well soon card. Mainly because I won’t so it’s sort of a waste of paper.

This one is absolutely my favourite.

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… or maybe this one is

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This is good too…

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My friends have totally said this to me 🙂

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I should really send this to someone that I had a long awaited chat with last night.

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Mrs Gypsytree or in fact Mr Gypsytree would totally do this 🙂

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Isn’t she just the best card writer?

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I haven’t been paid for this post or anything. A friend posted a link on Facebook and I just think she nailed empathy cards perfectly. This is the kind of stuff that actually you want to hear when your life / body falls apart.

Thank you Emily.

overexcited edit: Emily liked my post!!!!
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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 😉