What is your major malfunction?

This is a ‘remember this’ post. Stream of consciousness shortly after ‘a moment’ is useful to print out and use for pain management. Apologies if it’s a bit garbled.

There’s this wonderful sweet spot after a massive pain flare where everything becomes calm & quiet. Even if it invariably returns, for now it’s like the eye of the storm and I can lay here totally still aside from my hand tapping my phone and feel the multitude of painkillers dulling each of my nerves.

Describing this might sound like I want to be high (quite the opposite! The side effects suck, but these drugs keep me functional as a human), the pleasure gained from this quiet moment is in the polarisation from less than an hour ago when I reached a crescendo which left me literally rocking in pain. No-one seems to know for certain what causes these God-awful headaches aside from craniocervical instability (posh word for wobbly neck & skull) caused as ever by Ehlers Danlos Syndrome, but after sitting up for too long, or being bumped, the flashing lights signal the party is about to start.

I’ve tried to explain this before, but without success so just bear with me on this one…

Once the flashy lights start, one eye feels like it’s bulging & a steady thud starts in my cheek. Over the past few weeks, I’ve been taking sumatriptan at this point to stop it going further – for 6/8 it’s worked. I could kiss the GP that suggested this literal wonder drug. It didn’t work tonight, but the trigger was different – tonight I’d hurt my neck washing my hair (the water weighed it down & something popped), then I knocked out my jaw at dinner.

When it progresses, which it did today, that squishy bit at the base of my skull that was sore before starts to sting, and gradually the pinching in my neck moves down my spine until my pelvis aches. The pinching feels wet – there’s no other way to describe it. Like cold water travelling through my spine to where things hurt and either sending electric, tingling above my waist, or thuddy dull pains into my legs.

With my head pounding & my spine burning, my usual level of hearing dropped. This scares me because having lost my hearing reasonably rapidly I’m always concerned about how much will come back. Usually, I’m down by the dog in the Moderate/ severe range in the graph below (I hear lower sounds better & speech is only audible if there’s no background noise), but when it dips everything becomes like listening to Charlie Brown’s teacher. It’s not that I wouldn’t cope, but I’m still very much functioning in the hearing world.

At this point I panicked. I know it’s the worst thing to do when you’re in pain and it just makes things worse, but reaching my version of an 8 / 10 on the pain scale causes me to hit the ‘make it stop’ button. There is no painkiller on the planet as successful as Mr Geek kneading my shoulders like dough when I’m backing away from my own body – why? Because in order for the actual painkillers to take effect I have to calm the fuck down.

I’m not actually rating my pain for fun here. Although monumentally subjective, pain scales are a useful way to stop, body check, and assess just how bad this is – it’s as objective as pain is going to get. The scale also provides facial images for Mr Geek to get visual cues of where we are. In this case, we’re well into nothing but the pain.

Many people with EDS have pain tolerances that would make a Spartan blush. I’ve been mildly annoyed by a broken bone, asked for paracetamol following an organ rupture, and yet had a full on sobbing fit because I had a cold. Like I said, messed up.

We treat my pain according to a pain management plan – imagine if you will a birth plan that we use daily (eg. him pointing to the plan & reminding me that heat and tea and soothing music will make it easier, and me yelling at him that if he ever wants to have the ability to get laid again he will give me drugs). This means that we work our way up from paracetamol, to codeine, to NSAIDS, to morphine, to hospital. Because of the brainfog, he’s in charge of timings & doses – this is a sensible step back on my part. Yes, it infantalises me, but on the flipside he is spreadsheet levels of anal about dosage meaning I camnot accidentally overdose.

This evening, after my spine was pinching, my arms were tingling with pins & needles, my hearing dropped out, & I was nauseous (but not sick). Despite feeling nauseous I was also really hungry. Mr Geek gave me everything up to morphine and sat behind me rubbing my neck & shoulders for an hour. The rubbing is similar to TENS – it’s distracting and the skin on skin chills me out.

It had reduced to tolerable levels & I laid quietly for a bit with my phone in ‘night mode’ & my heated blanket on but I could feel the pinching riding up again so we opted for morphine at the lower dose (this allows me to top up if needed, and keep my general dosage low). Laying in the dark with my hearing out is like sensory deprivation and having a distraction is useful.

A second dose of morphine was enough to create this lull and the potential for some rest and enough clarity to describe the type of pain properly instead of a mumbled “er, sort of stabby” when with my doctor. It’s very difficult with hindsight to describe the stages as it all rolls into one ‘bad headache’, so whilst this may not have been the most exciting read it will be useful for me & my doctor at the next review.

Post pain, I’m left with an ache along my back, a pounding headache, and absolutely knackered – this post was written in between sudden naps (and deleting the random characters from nodding off with my fingers touching the keyboard!)

If you got to the end, erm, hi?

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Escapism

So here’s the thing. I make a lot of jokes about goofing off & not trying too hard – all of these things are basically pure fantasy. I love my job. Teaching is in my bones and I find it nigh on impossible to switch off.

I work “part time” now, by which I mean I am contracted to work 4 days each week, spend my day off marking & prepping, and tutor 4 evenings & Saturday mornings. Part time = 45+ hours each week. When I’m not working, I’m mulling something over about work. So I needed a distraction that wasn’t generalized ranting on Twitter.

I’ve blogged a lot before about the need for pacing and work/life balance, but I just suck at it. Take right now as an example – it’s past midnight & I have a meeting tomorrow (today) with someone who I really want to approve of me as a teacher (fuck. I’m 38 & have been doing this a decade. Why am I still seeking approval like a puppy?!). Ok, I’m mainly awake because my knee dislocated, it’s swollen like a balloon, and liquid morphine keeps me awake.

So yeah, here I am at peak anxiety with pain levels that are piercing through the usual drugs & a top up of 20ml morphine. Anxiety does not help with pain, so I learnt to meditate.

I ought to mention that I’m equally shit at meditating because my brain gets bored. I sit here & do a “body check”. Breathe in……. Breathe out….. Breathe in…… Toes…um… Shit. I can’t feel my toes! …. Calm down dickhead, we haven’t felt our toes in years. Oh yeah…… Breathe out…..

I place myself somewhere calm….. here I am dancing gazelle-like through the fields of my mind… getting to know my new roleplaying character…. Clear your mind…. Nope…. And relaaaax…. Nope.

Because actually where I get to relax is inside my head creating stuff. As a weird only child, I spent ages in my room building home made maps & villages where the stories I told to the people in my head took place. I was generally far happier chatting to made up people than real ones. Mr Geek shares my love of sitting quietly with little plastic figures & watches from his office as I bring my imaginary friends out to play with others.

It’s been decades since I created something more personal than cool learning resources. I’ve sunk all of my creativity into developing CSI style codebreaking resources, Elma the Elephant hexadecimal colouring, Game of Prolog, Revision Twister… But over the past few months the games have crept back in. First came Warhammer, then Bloodbowl (if you suck at meditating, try painting teeny little orcs for weeks on end), then over the past few weeks I’ve been lucky enough to be invited to join some roleplaying games online and have just started a weekly campaign.

Before you back away from the nerd, hear me out.

Today was Game Zero – working out who we are, our back stories, the world around us & how we gel as a team. What I remember from teenage games was us as kids picking the warrior woman with the massive tits and distracting guards with nipples (and frankly nearly killing our shy DM who barely looked at women let alone knew what a real boob looked like). Instead, what we got was a game that lets us test out our psyche.

“What do you want from this character?” Holy crap, that’s a deep question. By this point I was already invested so just went with it.

In a group of just four, one is seeing what it’s like to have real faith, one is living knowing that they will die, one is merging being a young soldier with hidden disabilities, and another a manchild rebelling against caring parents for the greater good of those around him. This is heavy stuff – not your average elven archer skipping through the forest in suggestively shiney tights. I have to hand it to Blood – she unpicked our characters until they were real. We all know at some point a specific character is going to die, and yet we’re going to willingly get attached. Self-preservation mode has pressed the eject button & has shot itself through the ceiling.

So here we are, instead of meditating and clearing my mind to reduce pain, I’ve created Pip (Lady Philippa Billingworth), a genetically modified soldier with the anger issues of an orphaned teenage girl, topped with a mutation causted by the faulty collagen gene already in her body allowing her to bend & break her body seemingly at will. She’s the angry, frustrated internal me, albeit with a 7ft much more functional body and weapons. That can’t be a good idea…

To see what we’re up to & some of the other weird and wonderful activities from the guys, check out these links:

You can find me on Twitter at @I_Am_Spanners

Please do check out the Bloodthirsty puppets at either their website or Twitch (where you’ll get points for watching which you can use to mess with the game play!)

www.bloodthirstypuppets.co.uk

Bloodthirsty Puppets Twitch Channel – Regular games of various fun. Catch me every Monday at 7.30pm GMT, and watch along with me on Friday Night Spiced at 8pm GMT (unsurprisingly on Fridays), plus plenty of others.

And of course, I can’t do an intro to me being allowed to play with tese guys witbout mentioning ‘the hot one’

Skaggeth Twitch Channel – this guy is an absolute dude.

Almost brushed my hair

Happened just the other day.

It was getting kinda long….

Ok. Enough with the terrible Crosby, Steele, Nash, & Young puns (Apolgies to their fans).

I’ve blogged a number of times about my journey into the realms of no & low poo in the pursuit of taming my curly hair. And with all credit to Lorraine Massey, the creator of the Cirly Girl Method, it really has worked. I’ve gone from looking like this:

Red - puppet from fraggle rock who has wild fluffy hair

To this:

Merida from Brave

Now I know that Merida is not known for her uniform beach waves, and frankly neither will I be. My hair is an extension of my personality, and as such is wild, unconforming, has a mind of it’s own, and is more often than not an alarming mess. But, it’s now doing what my genetics meant it to do instead of being dried out by sulphates and brushed into a frizzy mess. It’s now a curly mess!

This isn’t it’s finest hour (or mine – this was 1.30am New Years Day!), but it was at least behaving. So, why the post title? Well…

I’ve used a number of help groups online to guide me through my curly girl journey and learnt so many new terms that I almost speak a new language. It’s been a journey to find out what makes my curls ‘pop’ (look defined) and which conditioners & products work for me – and the kids, and interestingly there isn’t much crossover despite us all having wavy/curly hair. In the end, I’ve got a list of what works for me and it’s not wholly faithful to the strictest methods.

One particular product has an alcohol listed waaaay down the ingredient list and inadvertently posting this on a CG group was met with almost apoplectic rage reactions (I’ll post the routine below). Don’t poke the hornet’s nest? Why not? Fanatics annoy me & announcing I now also used sulphate free shampoo to negate hard water in addition to the evil styling product was just too much for some. It was akin to running into a room of hard line vegans smothered in nothing but bovril & shouting “I love bacon”.

So why is my routine still working? Probably because I follow the foundations of no sulphates, no silicones, & no brushing without being terrifically obsessed by having perfect 3c curls. Because I don’t. And it’s just hair.

Current routine*:

(✔ = hardcore CG friendly)

  • Small amount of Shea Moisture Black Castor Oil Shampoo (sulphate free) ✔
  • Cowash & detangle with Sainsburys Coconut Oil Conditioner & wide toothed comb ✔
  • Condition with Shea Moisture Coconut oil & hibiscus conditioner (leave in) ✔
  • Add a bit more by squishing in Organic Shop Honey & grape conditioner ✔
  • Squish in a tiny 2 peas worth of Cantu curl activator ✔
  • Squish in some Boots pink Curl Creme (….eviiiiiiiiiil – has a bit of alcohol, but removes all frizz so fuck it)
  • Squish in some Shea Moisture curling custard ✔
  • Plop for an hour
  • Diffuse until crunchy
  • Replop into a buff/satin cap & sleep
  • Scrunch out any final crunch in the morning

*My hair is super thirsty, so this much conditioner will not suit everyone.

This only happens once every week. All other days I sleep in a buff & if need be wet, re-diffuse, thenlargely ignore.

I’m looking forward to getting a bit more length so I can properly channel Merida.

For now, have you found what works for your wavy/curly/coily hair? Share the love!