National Poetry Day

It’s national poetry day, so because I am lacking in creativity, energy and words in general today, I thought I’d share this excellent haiku from Tumblr

There must be acid
Or nails in my bones because
Holy fucking shit

That is all.

Character Education – Judging Myself First

There’s a lot going on at school, and in the general educational circles about character education. The idea in a nutshell is that you can nuture kids to work on the traits that make them better learners. There are 24 of these babies,  but 8 specifically for learning.

Part of this process is to be introspective as a teacher and look at how these 8 traits apply to me personally. So, seeing as I’ve been rather introspective lately,  I thought I’d give it a go in a space where I’m less likely to get fired!

So here are the 8 in no particular order (OK,  in the order that I remember them):



This is the ability to keep going even when the going is tough.
People, I have this one covered.

Bust my spine? Give me those crutches.
Dislocate various limbs? Hand me the bandages & I’ll teach like a dead Egyptian on wheels.
Give birth ridiculously early to tiny child who forgets how to breathe? Stick an alarm on the kid,  whack a boob in it’s face, and… yeah, sign me up for university. (What was I thinking?!)
I am the terminator. 



This is the ability to be positive. The glass is half full.

Ok, not so much. Optimism has bitten me on the bum one too many times.

Instead I am stoic. I hope for the best outcome, but prepare for the worst.  That way, I can consider what the worst possible outcome is, and be prepared even though I go for it anyway. 



Not the same as grit. This is being able to pick yourself back up after failure.

Oh it took me a long time to work on this. I still am. Some days I can take an utter disaster and look at it like a learning experience. Other days, I still require a blanket and some sweet tea.

I’m good at looking at things like a puzzle, but when it comes to other people, I can’t stand failing in front of people. In class, I’ll admit when I don’t know or I’m wrong, but if my class doesn’t get the grades I’d expected, I feel like a shoddy teacher. I’m a contrary soul.

My resillience comes from waking up in the morning and wanting to just laying here until the pain subsides, but dragging my arse out of bed and into work. It’s not crying because my arms won’t push my chair up the ramp without popping out. It’s suggesting to the kids that we dress me up as a Darlek for Halloween.



I love learning. Not just about computing, but just learning. I love reading people’s blogs and learning about their place in the world and what makes them tick. I want to know what happens if you press that button….

What once was nosey, is now curiosity.

Self Control With Work


Do I watch cartoons with my kids, or will I get that marking done? Invariably I’ll do the marking. Is that because I can self regulate or is it because I have a ridiculous fear of deadlines? A little from column A, a little from column B.

Do I eat the cake, then yes. Why are you even asking me that question? The cake is eaten. Duh.

My self control is variable.  Don’t bring cake into this.

Self Control With Others


This is all about Social Intelligence.
I don’t lose my cool with people readily, and when I do, it’s in a quiet & controlled manner which suggests that you’re in a whole world of shit you hadn’t bargained for.

I vent in appropriate environments (here).

I’m equally able to hide a massive percentage of the pain I’m in for a good portion of the day. This slips and sometimes  (quite a lot) I do snap. And I snap at those closest to me.

I’m also a massive control freak and this escalates when I feel vulnerable. Case in point being my zero tolerance on behaviour with classes : as I can’t physically get to the kids misbehaving, I need to make full and frequent use of my death stare.



No, not the outy bit of an orange. Enthusiasm.

I’m British. I feel far more affinity with Raven than Starfire. I am The sarcasm. Over enthusiastic anything isn’t part of my genetic make up, unless you ask me to talk about code, or World of Warcraft… then you unleash the unholy nerd.

Gratitude (finally)


This tends to be the one where people get all religious. Except I’m agnostic. At best. (I was actually raised Catholic,  but I refuse to believe that any deity would want us to kill each other just to prove them right.)

I am grateful to still be working, even if it is trashing my body.
I’m grateful that I have a weird little online support network for my roller coaster ride of a diagnosis.
I’m grateful for my family.
I’m so grateful to have Mr Geek.

I’m grateful to have had the good fortune to have been born in a place where I’m safe and have the option to be independent.

Right now, I’m particularly grateful for my bed and extra blanket.

And those are the main traits of a good learner. I’m aware that I vary wildly on these scales, perhaps my introspection will help me give them a bit more slack when they don’t hit my super high standards.

Seeing is believing

Being ill is boring. We’ve had over a decade of being in pain, but since July it’s been more than your standard everyday chronic pain. It’s been stuff I can’t grit my teeth and ignore. It’s like constant chronic acute pain, which no matter how many painkillers, heat pads, massages, stretching I throw at it just won’t piss off. So it’s sort of taken over my forethoughts a for a while.

Now I’m just bored of it. And frankly, if I’m bored of it, those around me must be sick to death of it all and my incessant introspective essays. To those people, I’m sorry for all the whining.

The latest seed of self doubt was sewn when I read a blog today about psychosomatic pain. Shit. Is this all in my head? I have photos of my wonky joints & a bloody diagnosis, but after a decade of being told there’s nothing on the MRI, it can’t hurt that much, you need to man up, the little voice telling you that you just have a low pain threshold and it’s all in your head rings loud & clear. “You’re just being sensitive”, “you’ve probably just bruised the bone” – standard phrases since pre-teens.

Is reading up about my diagnosis not actually arming myself with how to protect my joints from more injury, or against doctors who just don’t have the information about EDS? Where I thought I was creating constructive information, have I just become ‘that patient’?  Oh god, please don’t let me be ‘that patient’.

(My pain threshold is quite high – tears that have been around recently, were distinctly absent when I broke my elbow or ruptured 2 discs or broke my nose… 3 times. It’s my tolerance for constant bloody acute pain that is rather lacking)

Perhaps ignorance was bliss. I’m a self confessed control freak, and having a massively out of control body combined with a lack of specific advice and information is sending me round the bend. Incessant blogging and fretting appears to be my way of coping. 

I will man up about this eventually. Possibly when the lift is fixed at work and it doesn’t take me a full 10 minutes to get up to my office & pop my elbow out from balancing on my crutch. More likely, when I feel more in control. For now I just feel very alone and frightened and a bit of a hypochondriac because no one can see what hurts.


Stop Trying To Save The NHS Money With Your New Fangled Technology….

We’ll have none of that hocus pocus technology around here.

I actually did a full on Patrick Steward faceplant in response to a perfectly polite email I sent to my GP surgery this morning asking about PoTS.


I happened to have the email of our practice manager and thought that rather than wasting an appointment as I’d literally seen my GP last week and I just needed to forward some readings in, I’d pop it in a quick email.

I asked for an extra referral and if they could pass on some heart rate readings just for reassurance as the chest pain I’d mentioned was still around.

From the response, you’d have thought I’d emailed her a picture of my genitals! I was given a thorough telling off via an email which told me not to use email to converse with the surgery (irony anyone?) and that it was highly inappropriate to send her medical details… because you don’t get to see those working in a health centre?


Then a phone call at 6pm.

Perhaps I’d got it wrong? Maybe the Dr had taken a look…. nope. A receptionist passing on a message that the referral was made but they wouldn’t look at my other information unless it was through “normal channels” – an appointment,  phone call, or letter.

Hang on… a letter? What you mean like a printed version of the electronic letter (That’s what email stands for you know) which takes more than 24 hours to reach you and can be opened by anyone? Or a phone call…. like the one we’re having right now? Ffs (I didn’t say it, but I THOUGHT it really loudly).

I explained in words of one syllable  (6pm…. I’m too tired and in too much pain for this crap) that their appointments are only bookable between 8am – 8.30am (if you’re lucky) which is during my commute to work. She suggested I used the Internet at this time to book an appointment. I asked if she made a habit of using the Internet whilst she was driving. Ok, I may have been a bit tetchy by then.

Final suggestion. Find another Dr as we won’t make this any easier. Nice.


I’m totally feeling the love right now.

And so, people of the Internet, does this look a bit potsy to you? (I’ve been vaguely dizzy on and off since Feb when I mentioned a weird ‘bra too tight’ sort of pain feeling which is still hanging around in and off). These screenies were laying down then just standing up. No jumping jacks, or exciting moves (ha! As if.)



(I will, rather than just asking the wisdom of the internet, apparently be wasting another GP appointment tomorrow to ask what could’ve been sorted by a quick phonecall… grumble grumble… but could do with a bit of reassurance )

Exercising when your limbs keep trying to fall off.

Moving isn’t just good for the body, but good for the head too. And frankly, I’ve been a grumpy sod for the past week or so. So, on the back of having rested the whole day yesterday,  I insisted that we take the kids swimming at the local pool today.

It’ll be fine, I said. They have stairs into the pool, I said. I’ll feel better, I said.

So here it is in gif form….

Mr Geek wasn’t sure and was holding in all his internal fretting whilst the kids launched themselves bodily onto the giant pool inflatable.


I was sat at the side, slightly annoyed as they’d taken out the steps I’d promised would be there. So once we’d discovered steps weren’t going back in, Mr Geek helped me off the crutches into a sat by the pool scenario and he lifted me into the water from there. (OK,  can I get an “awwwwwww!”). Once in, I realised that even standing on the floor was causing sciatica and knee pain, so I sat on my pool noodle and bobbed about like it was a floating throne.


Once satisfied that I wasn’t going to fall off and drown  (I can swim, it just hurts), or try anything stupid like front crawl, Mr Geek went off to do a few lengths. I was left bobbing around kicking my legs around like a baby in one of those inflatable seat things (except my pool noodle is far cooler, and it takes core muscles of a god to balance! ). This was blissful. I was weightless & moving with only minor twingyness! Stuff started to ache after 1ish minutes, but not anything that indicated imminent death.

Then the kids wanted to move to the “fun pool”. We needed to get out. The life guard had suggested the lift that resembled one of those theme park grabbing machines. I’m not ready for those looks. Too much attention.


So between me and Mr Geek he lifted me back out of the water onto my bum, then picked me up off the floor.


Getting into the fun pool was easier (proper steps & much warmer), but because I was exhausted by now and the kids had buggered off to the slides, Mr Geek and I just hung about talking. Without me realising he had positioned me onto his leg and just held me in a sort of floaty position in the water. I was totally relaxed.


Finally, the kids were done. Sadly, so was I and couldn’t actually walk back to the car, so Mr Geek helped me change and grabbed the chair from the car.


As soon as we got home, I got (OK,  I was helped into) a hot bath & assessed the damage.

1 hour of happy floating = both knees complaining behind the patella, my right elbow popped back in (Getting out of pool 1 required me lifting myself), my right shoulder making weird noises & shooting pains down my arm and both wrists sore & crunching.

But I swear blind it was worth it for an hour of what felt like normal movement. That and hugging Mr Geek in a pool :)

The Photographic Subject

When we were first married, Mr Geek used to take photos of me doing everyday stuff as a romantic thing.

These days, on a good day he’ll grab my phone and take photos of me doing “weird” stuff to add to the mind map.


On these good days I’m happier to add photos rather than perform like a monkey at doctors appointments when I’m tired and in pain.

It works for most. I’m just hoping this is sufficient for the string of specialists that I’m waiting to see, if nothing other than for protection of any more damage!

(Getting up from that yoga mat was nothing short of hilarious)

Edit: later in the evening we also took some screen captures of my heart rate from laying down to standing up. It was a test to rule out any worries about why I keep getting stabbing headaches in the morning as I get up and swooning like Colin Firth just walked into the room shirt billowing…. ahem… ‘scuse me….


It did bugger all to alleviate any worrying & I may just email these into my GP (I’m not sure I can tolerate seeing him twice in a week). I would’ve stood for longer, but the you’re going to faint buzz at the top of my head kicked in :(

Positive Mental Attitude My Arse

I’ve never tolerated over enthusiastic people very well (unless it’s about coding,  or gaming …). I am really rather British about the whole thing and as a general rule extreme emotions terrify me.

My stiff upper lip and stoicism is practiced and rehearsed daily. I’m fine! At least I have fun painkillers! Ah well, could be worse, my leg could actually fall off!

The last time I cried was last weekend. But that was not in front of people. And it was only because I was tired and really sad that my friends had all gone. I don’t make friends easily, I never have, but I was at ease with real people :)
I thought I’d lost that when Mrs Gypsytree left. I’d wanted to give one particular person a hug before they left, because they’d made a weird situation totally normal. I kicked myself for that afterwards. But not being a hugging person normally, I went Sheldon about it all.
Public leaking is to be avoided at all costs. We are not sad. It’s just raining on our face.

Any form of anger & resentment must be stored in an airtight container and sat on…. Until I fall off and express a completely irrational rant at someone who probably doesn’t deserve it.

And today, it’s you, you bloody chirpy over optimistic gits with your mood enhancing memes.


Piss off. I’m British. If I didn’t complain about something, I’d die. It’s a bonding ritual! It’s the way we deal with our anger. We don’t have guns you see, so when people drive us crazy, we internalise it all and it escapes in tiny pieces of irritable sniping like a fart that you just can’t hold in. (Except we would hold that in).

Add to this the current bloggers using the invisible illness awareness week to push the idea that exercise will cure everything because you just need to work with your body and clean air….. just try making my body run. Actually, try getting my body to get in and out of the bath. Now tell me I get out what I put in. In the words of my daughter “what’s that on your face???!” *slaps me* “it’s pain”.


This equally applies to any gym instructor who uses the word “buddy” or whoops unnecessarily during a class (hint: it’s never necessary to whoop).

A positive mental attitude in true British terms is : this current situation may be a pile of donkey crap, but we shall car
ry on and ignore it. Nothing to see here. Good day sir.