My Dad – still being my dad 36 years on

What a strange concept. In a family who lives geographically close (in the same house!), we share very little emotionally. As a rule, we’re very British with our stoic attitudes, stiff upper lip, and if need be outright denial. But for a brief moment this evening, my dad and I had a real conversation.

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He’s been very practical about me losing my mobility, but I confessed to him how hard its been to accept using the wheelchair so much despite the clear benefits its had to my pain levels. And he told me not to be so hard on myself and how hard it was seeing me in increasing levels of pain.

This might be a standard conversation between most parents and their offspring. Certainly, we talk to our albeit much younger kids and never end a day without “I love you” even if its met with door slamming teen style. But that’s not a mirror to my parents. Whilst I take many cues from my parents (hey, they didn’t do a bad job!), the softer side of my parenting comes from Mr Geek’s family. I heed their advice on how to roll with the punches of two preteen daughters.

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There’s nothing more insane than a family, and even more so mine. My mum has softened over the years, and although she remains the queen of denial, is more open than ever. Much like her grandmother, she’s at liberty to be softer now there are small(ish) people who look to her for cakes and hair brushing. My dad on the other hand has become harder. We used to sing together when I was a kid, either by playing his vast collection of vinyl or with guitars. When we go away, I still end a phone call home with “love you”… But he doesn’t respond. Weirdly, whilst that smarts, I know that’s just him – he shows it in other ways like building Mr Geek an office from scratch, getting my stairlift installed, making doorways accessible for me… But rarely talking. So when we do, it’s great. My Dad is still there.

One thing that’s come out of me getting ill (is it ill when it’s a syndrome? I don’t know.), is that the house is more harmonious. When I was hiding how bad things were there were arguments over being untidy and unsociable (going to bed at 8 because, well pain = knackered), but the pieces of the puzzle appear to have fallen in and whilst I still put on a brave face along with my big girl knickers and get out there to keep working, I can be much more honest about how affected I am by being in chronic pain. Case in point, writing a blog at 3am because my legs have some kind of lightening storm going on and getting up to pee set off other bits (I really wish oramorph was a bit more effective). Tomorrow will be another 13 hour day at work, but I’ll suck it up knowing people will make allowances as I recover on the following days. 

It doesn’t matter if I can’t dance, by breaking the pain cycle of hiding how bad it actually is, I’m coping better. I state my pain levels as a fact, don’t dwell on it, then laugh at how it takes two of us to make a smoothie! Who knew that  I’d be up at now nearly 4am and actually be OK with that. Take this as a metaphorical ‘hold my beer’,I’m going to try throwing all my spoons in the air ;)

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Watch this space.

Friends

I like the idea of leaping… Then leaving a trail of limbs behind me ;)

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There are lots of things I could have tried to write my second post about, but in the end there was really only one topic that I could choose today and that’s the amzingness (is that a word?!) of my friends and how the support of friends is so wonderful.

The reason that I have to write about just how amzing the support of friends is because of one particularly wonderful friend. In fact this friend has always been wonderful, generous and kind. It was her who when my husband and I moved into our last property put together a funny ‘New Home’ kit together from Dubai’s answer to a pound shop, including a brilliant garden gnome who still sits out in the garden of our home. On the surface of it, that statement might not sound particularly wonderful, but in a city where friendships are often transient, this friend…

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#touchyourselftonight … Go on. It’s important.

Who better than to tell you to have a crafty wank all in the name of preventing cancer? It’s not going to get better than Deadpool. It’s like public health and back story in one!

Whilst you’re at it, do ensure the ladies are making an inspection of their curvy bits too… Unless you get to do that too. You know, in a totally selfless way (bonus!). I’m not ashamed to say I wouldn’t mind being checked over by the lord of spandex.

The marketing for Deadpool is genius. We’ve booked tickets for Valentines because we’re just that romantic. There’s something about him that reminds me of Mr Geek…

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I’m always a sucker for the bad guy (cue crush on Sabertooth instead of Wolverine, Harley Quinn instead of Batman (or girl), Moriarty instead of Sherlock). And now along comes Deadpool with his avacardo face, sense of humour and wild inappropriateness that holds a mirror up to that absolute dude* who snagged me with forever jewellery.

Only 2 1/2 weeks to go! Until then, try to do that sort of thing in private. On the bus is going to get you in trouble.

* I should mention that Mr Geek neither resembles fruit, nor has any terrible disfigurement. He is cringeworthy in his appropriateness though.

A Cracking Evening

There are few things as satisfying as laying down twisted on my bed, grabbing my hip and pulling my SI joint back into line with a noise in the hollow place between a crack and a thud. It’s a noise that is audible across the room and can be felt through the mattress by my poor long suffering Geek. It’s swiftly followed by tingling down both legs as the nerves adjust to this more natural spinal alignment, and for a while the Burning acid in my pelvis dulls. CRPS is under control, bit not always.

I’ve perfected this stretch from daily yanking my joints about. I know the relief that it brings, but I also know the claustrophobic pain that ensues when it doesn’t go back in.

Today was an insanely long day, and my plan was to come home and going straight to bed. However, instead of sleeping it off, painsomnia has kicked in. Rule one of painsomnia is to stretch And let everything crack out. Sometimes just relieving the pressure helps, but tonight, despite soundinhb like a bowl of rice crispies hasn’t helped. I’m out of options for more painkillers and am onto the “suck it up princess” method of coping. I’m clearly still shit at pacing.

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I spent too long in my chair today, so my back is sore.*
I didn’t check my posture often enough and ended up leaning on the arm rest, so my shoulder is visibly out.
I ignored the pain and literally gritted my teeth, so my jaw hurts and is creating a TMJ headache.

I’m tired, so the palpitations are more pronounced. All I want to do is drift off and wake up without something trying to drop off.

I’m tired & frustrated. I’ve also worked nearly 24 hours so far this week (not including stuff I bring home) and its only Tuesday!

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*”sore” translates to still causing yelping pain after dihydracodeine, gabapentin, and a shot of morphine.

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

I used to love you

I grew up with Harley Quinn as an icon. As a bit of a feminist, this doesn’t for too well as she was (is) the ultimate bunny boiler.

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Intelligent woman tries being all independent, but ultimately loses her mind over a man (who fair enough did get her to kill him for messed up reasons). Then, like she had no chance at self esteem, falls in love with self obsessed, manipulative and abusive make up wearing man. That’s the joker btw.

I’m not entirely sure why she was my hero growing up when you put it like that. Oh yeah…. She’s hot, and slightly unhinged.

I present also exhibit B.

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My taste in women is questionable at best.

So, somehow I was miffed to find Mr Geek salivating at DC’s latest incarnation of Miss Quinn. It took me a bit of head churning to work out the two themes of why I’m not keen on this one.

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1. She’s not even pretending to be the proper Harley Quinn overtly tits in your face sexy with the severely mentally unhinged facade hiding the fatal Freudian flaw of requiring the Joker’s approval of her actions. The HQ of my comic years kicked ass, and spoke to my inner teenage girl, whereas this one appears to wiggle her ass in a girly, slightly unnervingly underagey way whilst kicking nothing but her cute shoes  (they are good shoes).

2. She’s hot. Mr Geek is right. And right now, I’m about as sexy as a vasectomy. Performed by Dr Zoidberg.
 

I’m a bit jealous…. and probably out to stick with Deadpool. He’s far more my style.

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Why @ITVThisMorning and @DrDawnHarper were wrong about #hypermobilitySyndrome and #EhlersDanlosSyndrome

It’s just double jointedness. Nothing to worry about.

These were the words of Dr Harper when faced with a parent caller on ITV’s  This Morning program who was concerned about giving her child a “note” to excuse them from PE. An Internet backlash commenced by people who were thoroughly offended by her off hand comments which was watched by a rather bemused wider community. From an outsiders perspective,  what could be wrong with being double jointed? You don’t get a note from your mum if you’re bad at maths! But equally, being had at maths doesn’t present the possibility of having a genetic connective tissue disorder that can lead to severe disability and at worst, sudden death. (That’s very much worst case & very rare – and also, you’re not bad at maths, you just need more practice and a good teacher). Dr Harper showed a similar disregard for the Hypermobility Syndromes that so many medical professionals I have met have done, and I’m not in a minority. The backlash was in part an outpouring of the frustration felt by being told we are faking, drug seeking, or just mentally ill. I like to believe that these doctors refuse to diagnose Ehlers-Danlos as it is an incurable Syndrome which is just managed with pain relief and specialised physio. Doctors like to cure. We are the square pegs in their round holes.

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Age 7 – riding my bike, by knees are clicking and ache so much that I beg my mum to rub deep heat into then at night. It’s just growing pains. Nothing to worry about.

Age 10 – I arrive in A&E every few weeks with a new sprain or twisted ankle. My teacher remarks how I love those bandages. Maybe I just want some more attention. Nothing to worry about.

Age 15 – I faint at random and I’m exhausted all the time. I’ll grow out of it. Nothing to worry about.

Age 20 – knots in my shoulders cause weekly migraines. I’ve stopped mentioning the weird growing pains that didn’t go away, but I’m fed up. They’re just headaches because of depression & the injuries… well you’re clumsy. Nothing to worry about.

Age 24 – Symphis Pubis Dysfunction in my first pregnancy has me on crutches by 18 weeks and labour threatens on and off from 20 weeks with Pre-eclampsia. It’s just a first time pregnancy. Nothing to worry about.

Age 25 – Symphis Pubis Dysfunction again, Pre-eclampsia and early membrane rupture at 32 weeks. You’re just not good at being pregnant. Nothing to worry about.

Age 27 – slipped disc and worsening back pain that just can’t be ignored with co-codamol. It’s just bad posture. Nothing to worry about.

Age 30 – using a walking stick on and off again. This time with the addition of the occasional wheelchair when it gets too much. Feeling in my feet gets lost more often. It’s just a bit of nerve damage. Nothing to worry about.

Age 35 – using a powerchair daily and now unable to walk more than 8 metres using two crutches. Knees, SI & shoulders all subluxing at least once a week, if not daily. Now using morphine to control the pain. Oh, and given my official diagnosis of Ehlers Danlos as a new GP joined the dots after recognising the signs because a friend of hers also has it. So, yeah, probably something we should have worried about earlier.

So just to return to that original quote, going on National TV and dismissing a child that complains of pain from hypermobile joints may just contribute to a pattern of dismissal by the medical profession. It might not just be Hypermobility. It might be something to worry about.

Just because you can’t cure me, doesn’t mean you can’t help me. Listen. Diagnose early. Use ongoing physio as a preventative measure. Help me not get worse.