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. 
image

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

image

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:

image

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.

image

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.

image

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

image

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.

image

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 😉

London Baby!

I’ve not blogged about today’s appointment yet in case I jinxed it. But today was our big trip to London. We combined my appointment at the Hypermobility Clinic at St John & St Elizabeth Hospital with a birthday trip to The Natural History Museum for Beanpole’s 11th birthday.

11. How is she 11 already?!

Cue 5am start (or 3am for the kids who woke up early and snuck downstairs), then heading off and picking up Beanpole’s best friend for 6.30. Then off we drove to central London.

Having been raised on the Chalk, I’m not wholly comfortable being in London.  The South Downs are in my bones and just like the Terry Pratchett books, leaving them behind feels very odd. (Although thankfully I’m in Sven our Saab, not on the back of a broomstick).

London is busy, fast paced and doesn’t have nearly enough green. On the top of the Downs you can sit on a hill on your own and feel like you’re watching the whole world; in London, you’re surrounded by thousands of people and yet feel completely alone. I’d rather be in the company of badgers. (Mental note: must find off road chair)

I digress.

Whilst I had been given an EDS diagnoses from our GP Registrar, the surgery (and the world plus his wife)still wanted an official diagnosis from a Specialist. This is an appointment that’s been ‘on referral’ with our local hospital for coming up to 3 months. Every GP appointment recently has ended with “you need to talk to the specialist about this”. Eventually, we got fed up and phoned Mr Geek’s private health insurance to ask if they would help. Indeed they would, and an appointment was made 3 days later (today) with the Hypermobility Unit in London… I’m yet to hear from our local hospital.

I was so scared, I felt sick last night.

What if it is all in my head?
What if they don’t know either?
What if they think it’s all in my head?

We arrived at 9am and Mr Geek took the girls off for breakfast. And in I went…

We talked through everything that’s crapped out on my body since year dot. Discussed my attempts at acute physio and that the hospital now didn’t want to see me because it’s too complex. Collectively wondered why people hadnt picked up on this until I completely fell apart having been prescibed mega painkillers for the best part of a decade. She tested each of my joints (aside from my braced knee as it’s still purple) and concluded that only my right Big toe is not hypermobile.

“You definitely have joint hypermobility”

…… I’m not mad…..

“And from the rest of these symptoms,  I can conclusively diagnose Ehlers-Danlos Type 3, although I’d like to refer you for genetic tests to be sure of the type.”

…… fin.

It was all of a bit of blur from there because years of being fed painkillers by my GP and told to bugger off released themselves and I cried. I don’t do crying.

I know we talked about management options and she referred me to a heart specialist and stomach specialist and to Physio and psychology for pain management because it’s all written down. But the relief was immense. I live in hope that my GP might quit talking to me like I’m just after drugs.

After all this it was museum time! Mr Geek met me with the strangest non-fodmap breakfast in a bag. But it was so yummy! (I paid for this with horrid stomach cramps later)

image

It’s been years since we visited the Natural History Museum and it seems to have got even bigger. The kids decided to throw me completely by having a full on discussion about whether because the giant land sloth had a massive pelvis, whether it’s penis was in proportion. Welcome to the land of age 11. 

image

You can’t shock the teacher that’s taught sex ed kids… Human body area anyone? Want to talk about willies? Let’s go look at a 2ft sperm cell.

image

Children 0 – Hippygeek 1

image

As ever, the dinosaurs were awesome. This bit never changes and yet it’s just as amazing every time. Beanpole is obsessed with dinosaurs in true Aspergic style. They are her lifetime love and she is a walking dinosaur dictionary.  There’s a phrase about pigs and poo that’s very apt here.

We also discovered the kids “touch everything & press buttons” area downstairs and Beanpole found the EDS game 😉

image

And I found a example of what I should look like. The head bone’s connected to the. .. oh wait, is it still connected?

image

Finally, with all spoons used & adrenalin from the morning drained away, the girls were given 15 minutes in the gift shop before we headed out of dinner. I even found myself an appropriate souvenir for the day. And in my favourite colour too!

image

Cue using the drive home for blogging to keep myself awake and my mind off not bringing my tens machine!

Beanpole, TinyPants and friend have had a spectacular day of science, we’ve had a lovely day too, and that piece of paper from a leading consult in EDS ends any shred of doubt.

Today was pretty fucking awesome actually.

-20 spoons, but I just don’t give a flying rats testicle.

 

Date Night: Then and Now

After nearly ten years of marriage, date night is a nice space for both of us, although it’s changed a bit since our first dates….

image

Venue (Then): Cheesy meal out at Nando’s or similar then cinema.

Venue (Now): Hydrotherapy pool

Dress Code (Then): black, black and more black. Big baggy skater jeans & skinny band / weird cartoon tshirts. Vans.

Dress Code (Now): Comfy pull on clothes that are at least a tiny bit stylish (proper trousers, a buttonless blouse, and a chunky cardigan from being at work), then swimsuit & floatation belt.

Conversation (Then): music, cartoons, not so subtle suggestions of what we should get up to later

Conversation (Now): kids, cool stuff we’ve done at work, which bits hurt, ooh look! My bursitis is swollen… seriously, feel it! Ewwww!

Sexy Time (Then): Titanic style window steaming in my shitty young person car with added bra fumbling. Followed by wine drinking and falling into the washing basket.

Sexy Time (Now): Mr Geek helping me out of my swimsuit and helping me get dressed. Helicopter style waving of willies (which never gets old). Followed by handing me a hot bowl of homemade stew from the slow cooker & painkillers.

Bed (Then): generally unmade, fallen into slightly tipsy whilst we snogged until our lips fell off.

Bed (Now): double thick mattress and full body pillow with separate extra blankets for me that I can snuggle under and throw off at random points during the night. Helped into. Kissed goodnight.

It’s not all bad. It’s just different.

image