Don’t Strive for Perfectionism

I wrote a truly exciting blog earlier on my rather more professional site about whether revision is worth the hassle, I even did a video to go with it. I spend most of my professional life advising kids to chip away at tasks to make them seem less daunting. My tutor duties are definately skewed more towards skills and confidence than knowledge – often kids arrive knowing the end point, but have no idea how to transition from rabbit in the headlights to practical students. Much of my advice centres around doing your best and rewarding yourself for progress.

I am of course The Actual Worst when it comes to taking on too much and demanding perfection of myself. I don’t think I’m alone here – in fact, I’d put money on the vast majority of teachers being massive perfectionists who tie themselves in knots over the slightest thing.

Take for instance my tutoring rating. I currently sit at 94% (it’s like a centile, 6% are rated higher). Now, do I see me higher than 93% of tutors and celebrate? Noooo. I work out how to outdo the 6%.

Similarly, of my 294 lessons (IKR! How did that happen?!), 2 have been rated 4/5 which has ruined my perfect score.

This haunts me.

This really does haunt me. I even have a tattoo to remind me & bring me back to reality. 3 hours of scraping needles & ink into my skin to have a permanent reminder etched on me that I’m “Good Enough”.

This attitude is celebrated in many schools as having Highest Expectations or Always Learning. Except this is a huge mistake. Fostering a love of learning yield far greater results than scaring them into retaining facts. Fretting about missing that 0.02 is an indicator of serious anxiety issues. Encouraging this behaviour in kids is plain wrong.

We are currently raising a binary generation of people like me and people checking out entirely. The sheer volume of kids with anxiety shold be ringing alarm bells so loud that you can’t hear the lunch bell. I saw an insight of this when my girls did their SATS over the past few years

– Beanpole worked hard and chased down every mark. This was a 10 year old who knew how to interrogate a past paper. Extra lessons were attended, lunchtimes missed in lieu of revision. She acted like a 16 year old with GCSEs and would heed none of our advice to relax.

– TinyPants made herself physically sick worrying over the marks that she struggled with. She was awared no extra time despite the aching joints of Ehlers Danlos rearing their ugly head. In the end, after 6 months of revision stress she wrote “I DON’T CARE” in 3 inch letters across her exam paper. Her summer school report was a simple “Not High School Ready”. She died her hair pink & left primary school making some interesting hand gestures.

In both cases, we have been exceedingly lucky with their high school who took the pressure down and have given them a breather. TinyPants still refuses point blank to read anything for pleasure and “you just haven’t found the right book” is met with stubborn refusal. Why? Because she was forced to pick apart texts for a year, identifying modal fucking verbs instead of fanning her creative spark with literature. I will never forgive Gove for stamping out a love of reading for so many kids.

But I digress. My point was that we are teaching kids that nothing short of perfection will do all the way through life and that extreme stress just means you’re working hard enough – complain about it & you’re a snowflake (spend 10 minutes on twitter to confirm this). Despite wrapping it up in the “keep failing until you get it right” posters, nothing they are taught backs up this theory – don’t fail your SATS or you’re not High School Ready, pass your GCSES or you can’t get into College, get AAB in your A Levels or you can’t get into University… Ad infinitum.

Fast forward to the 38 year old & it’s still going. Pass your job probation, ace the appraisal observation, get the highest tutor rating, the only disability is a bad attitude! (barf), what do you mean you can’t work and parent and sort the house whist on a constant slow release of morphine that you forget to take on time because the neuro drugs have melted the intelligent part of your brain??? Brain fog is no excuse for stopping. Keep up. No-one is irreplaceable.

My unique state is part nature, part nuture. My adrenal dysfunction likes to fool me into thinking that the harmless lesson observation, or coffee with a friend is on a par with being eaten by a tiger. Nuture wise my wonderful, but ultimately messed up mother spent my entire childhood comparing me to fictional kids who were way more intelligent than me and who grew up and married very rich doctors (Go Feminism!). In short, I’m constantly terrified that I’m actually no good at the thing I’ve trained over a decade to do and get high ratings in.

Eventually, I’ll end up in a cave as a hermit where I might make friends with the tiger that’s probably less scary than leaving the house. Until then, welcome to my mind palace.

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No Pain, No… Erm…

I think the phrase is “what doesn’t kill you…”

This week has been a bit of a shitstorm that I’ve put a brave face on. After having a ‘moment’ on Tuesday (read on) I’ve been asked a million times if I’m ok. “Oh, I’m fine!” or “it is what it is”. In truth, it frightened the life out of me.

I’d had a migraine on & off since last Friday. Sumatriptan was keeing it at bay, but every few hours it popped back to say Hi & stab me in the face along with feeling whoosy & jittery. A stressful week was hitting a bit of a high (it’s coursework deadline week) and I popped off to the loo before lunchtime club. As I transferred back to my chair everything went dark & I hit the deck.

So here I am crumpled on the floor of the toilet at work with a whoozy head and, oh fuck, a leg sticking out at a right angle. So I pulled the emergency cord & waited for the cavalry.

I could turn this into a long story about our poor first aider helping me snap things back into place, an ambulance being called, sitting on a toilet foor wondering what the hell just happened, but that’s not what threw me. Part of the ambulance being called was them doing the standard blood pressure and pulse checks. You’d expect my blood pressure to be a bit raised what with trying to remove my leg and being surrounded by buzzing people who I couldn’t hear properly. What you wouldn’t expect us for them to make that raised eyebrow face at each other, take my pulse on a different wrist, wince and explain carefully that I had an irregular pulse.

After being helped up onto my chair & being stabbed a few times to get an IV line in (I have no veins – he dug around for a good few minutes & I didn’t even bleed!), we headed downstairs to the ambulance where I was hooked up to an ECG. They look scary, but apart from being a bit sticky they’re fine. So out pops the first print out…

… Let’s do another…. And another… The readings are “weird” (their words)…

… The paramedics start talking over my head about Ts & Vs and mitral regurgitation… I explain clearly that I can’t hear them properly. They take one more reading and the paramedic asks me how much pain I’m really in. “It’s not that bad” (it’s a good 7/10). Then he hit me with the line that’s been whirling around since. “You need to stop being brave so we know whether these readings are intense pain, or a heart problem, or both”

How do you explain that the only way to deal with constant pain is to employ a degree of denial, and when a combination of a major dislocation, exhaustion, and another bollocking migraine hits meadured breathing and stepping out of my body is the only way to cope. You might see me joking with you, but I’m watching from a safe distance.

The decision is made that I need to go and play musical trollies in A&E, so I head off in the ambulance with Mr Geek following.

Several hours in a converted cupboard (stretched NHS in action, it was an actual cupboard that had been converted to accommodate more beds) amd I’ve had another ECG & an xray. They attempted to take blood, but my veins were having none of it so they gave up. Even the cannula in my hand had collapsed. Vampires be warned. I’m cleared to go home with referrals. Mr Geek pops out to get my chair & lovely dr comes in to make sure I understand that cardiology will be in touch about the mitral valve prolapse and to make sure I ask fracture clinic for physio. Despite being terribly busy, she was so distressed that I don’t have a regular consultabt overseeing everything. I’m on their books, but what can they do? I have a lovely GP and that means I just get on 90% of the time.

… 2 days later, I’ve jollied up and brushed off the “are you ok?”s. My knee is braced and every time I get palpitations from sitting up ‘mitral valve prolapse’ rings in my ears. Just for reference, when you get a thing that you don’t wholly understabd, don’t google it. Especially when the self care for it is to be calm!

In very non-medical terms, it’s where the valve that stops the blood from being pumped out of your heart allows it to leak back in making it less efficient and causing a traffic jam. I’m basicallyb running on a procedural paradigm where I was in object oriented.

So, the reduced caffeine version of me remains a bit headachey & whoosy and has a very sore knee. With adrenal dysfunction and an enourmously dysfunctional family, it’s a full time mission to remain calm so I’m cracking open the Headspace app and Podbean app every five minutes.

From what I can gather, conservative treatment is to reduce caffeine, calm the fuck down, and monitor the levels of reguritation.

Blood pressure & heart rate regulation drugs can be employed and of course there’s the oh so helpful complications list of heart damage, lung damage, starving the brain of oxygen (do not google!)

Of course this whole thing creates a catch 22 where the symptoms are mild chest pain and an awareness of the heartbeat, but you are aware of them because you’ve been told (chest pain is GERD, but mimicks scary chest pain). If nothing else, I’m seeing my lovely GP on Saturday and I can offload my worries there and I can return to denial. He’ll likely agree that being a whirlwind of stress and caffeine over btec exams probably wasn’t my smartest move and to get cardiology to just keep an eye.

So no, not so “fine”, but not in a place to talk in person about it yet.

Just as a side note for anyone in the US reading who wonders how much that little incident cost. To me, nothing. A little extra tax is paid and I was treated based on my symptoms, not my insurance. Sort yourselves out. Social Healthcare works. It’s not perfect, but what is?

Sleep is For The Weak

I watched an interesting and yet terrifying documentary on Netflix today called Take Your Pills. If you’ve not watched it, please do. It’s a worrying window into how kids cope with the academic pressures ladled onto them. There were also so many ambitious adults on there who are taking Adderall to stop burnout. Some had progressed to taking low doses of LSD, with stories of people in their 30s having exhaustion induced seizures and being called / emailed at the hospital for work they hadn’t finished.

(For point of reference Adderall is an ADHD drug similar to ritalin – both are amphetamines, but adderall is closer to methamphetamine)

Ironically, here was me watching this in bed in my pyjamas at 10am on a Wednesday morning. I’ve worked every day for the past 14 days and by Tuesday morning found myself wrapped in a blanket at 7am staring into my mirror instead of getting ready for work, after another “fun 4 hour sleep” unable to put makeup on because I was so tired & woozy. Technically I should have called then, but I felt too guilty to call in sick. My pain levels exhaust me, but I don’t want to “use them as an excuse” – the internalised ableism is almost audible around me at times like this.

As my workload went up, so did my pain levels amd my ability to cope dropped – I already have a heafty painkiller routine, but the morphine levels have risen recently. I had a bit of a stark awakening when just before a stream on Monday my shoulder popped out (fully dislocated with a torn muscle). Mr Geek returned the joint to it’s rightful place & I asked for “some morphine please”. This sparked much hilarity from my friends on camera who witnessed a totally calm woman politely request strong narcotics. From most people I’d get upset, except I know they intrinsically get this pain threshold thing – I don’t scream & wail because I’m not scared. It hurts like a motherfucker & still does, but I know why and how to solve it, and precisely how bad it will get. Staying calm stops my muscles going into spasm & helps the joint back in. Much love to Jo & her meditation techniques for this.

Anyway, knackered lots of pain etc. so in bed on my “day off” before tutoring starts. It occured to me that I was utterly confused by the concept of not being able to focus – these people wanted to push through the tired & work faster, longer, better. And were using amphetamines to do it. They are literally taking drugs to have the unpleasant side effect of my adrenal dysfunction. WTH?!

I made a list of things I’ve achieved over the past 7 days to show the effects of skidding through life in constant fight or flight:

7 days of stuff I’ve done

Learnt how to code with basic Unity & Cardboard VR

Made & released a simulation App for my department’s charity den (go look & download to raise money for our local homeless shelter!)

Written a draft short campaign for the roleplaying group I play with (3000 words & counting) based around Tudor / Medieval Sussex folklore.

Created ink drawings for a couple of characters.

Scruffy witch with long teeth stands holding a fish

Ginny Greenteeth – river hag, notorious for dragging people into water.

Joined in 2 roleplaying streams totalling a collective 6 hours (no regrets!)

They’re not on YouTube yet, here’s one we made earlier!

https://youtu.be/YcDgJos28sE

Created an ink drawing of one of the characters from our game stream.

Drawibg of a Young man in a long coat running with a flaming torch in one hand and a dagger in the other

Lamb the SaltGypsy from our Salt & Thirst Campaign with BloodThirsty Puppets

Worked at my teaching job for 32 hours + a few evenings of marking

12 hours of online tutoring

And a blog post.

….

Now in a list, I looked at that and thought “wow! I’m a fucking superhero!”. No brain, you are not. You are skimming years off of your life by not slowing down even when limbs are literally falling off and you’re crying from being tired. What my brain is failing to mention is:

The sketching is done at 1am when I can’t sleep because my CRPS is playing up & my leg feels like its on fire

Much of the middle of the night suddenly awake cold swears stuff is due to panic dreams where I can’t escape from a fire. Subconsciously I know this is because the alarms broke on Friday & we’re just waiting for an engineer & there’s a plan in place, but I don’t like feeling vunerable & not in control. Being nervous = extra adrenalin.

The streaming is my socialising. I do this from bed because sitting in a chair is too painful after work. I’d rather cut a boob off than not join in.

Same goes for tutoring. Big pile of pillows in bed. I enjoy it & it’s paying for the holiday which the girls & Mr Geek deserve so much after giving up life to accomodate me all year.

I loved creating the app, but the all consuming fear that I’d let people down if it wasn’t done meant that by Sunday morning I was covered in hives (I still argue that it was worth it)

……………………………

So the brain & I had a serious talk having been placed into a salted bath by Mr Geek who now just looks at me like a concerned pet owner does at a cat that keeps pulling it’s fur out.

I can’t keep going where the adrenalin rush pushes me. I can’t shrug off every conversation where Mr Geek tells me to rest more and stop working, or at least saying yes to more work. I can’t survive on less than 25 hours sleep per week.

Something has to give, and with a leaky heart valve we’d rather it wasn’t that. Also, that’s not a very rock & roll way to go.

The brain needs to stop flooding me with adrenalin and I need to be sensible and take a few days off. I’ve cleared my diary for the whole 4 day Easter Weekend, much to the dismay of my tutees (downside of self-employed tutoring is they genuinely believe I’m on 24 hour call).

  • Even if it snows, we are going to a National Trust garden.
  • I’m going to sit in Mr Geek’s lap, tangled up together with all the tech off and read for pleasure
  • I’m going to paint with TinyPants on a hill.
  • I’m going to watch sharknado with beanpole

I’m writing this downas a line in the sand. As a very loud, but wise man who never followed his own advice once told me: 49% work / 51% family.

– work emails are no longer on my personal device

– My tutoring books are closed

– Working on a Sunday is now emergencies only

– Anything past 7pm needs to be completed from bed

That seems like a reasonable step towards not breaking my head.

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.

Teacher in a Wheelchair Series – No 2 – Why Bother?

I’ve lost count of how many times people have asked me how I appear to just carry on despite rapidly falling to pieces. Just as often I look confused at them & say “err I just do. It’s nothing special.”.  Looking at it objectively, actually my ability to hold down a full time job is thanks to a million little tricks and adjustments. This series of blogs is all about unpicking those adjustments & sharing them. Number 1 shared some tricks on making it through the day in one piece, or at least in as few separate pieces as possible. This week, I’m focusing on mental health.

For those who don’t know, I have Ehlers Danlos Syndrome – a genetic condition which affects connective tissues throughout my body making them stretchier than they should be. For me this meant undiagnosed joint pain, weird injuries, & enormous anxiety as a child; later this became chronic pain in my back & gastric issues; finally (and this isn’t my final form) in my mid 30s I dislocate daily, have dysautonomia, intense fatigue, & the joys of adrenal imbalance making me easily “stressy” and unable to sleep at appropriate times.

Life could very easily get very dark; I could easily dwell on the potential of overdoing it & rupturing an important organ; it’s not unusual to do the 2am game of “which body part hurts the most?” – tonight, come on down thoracic vertebrae! We have a winner! ; I am human & the odd week long pity party for one is allowed (and frankly, quite health behaviour when you are faced with similar pain to a broken bone all the time & for the rest of your life). At my PIP interview the assessor took Mr Geek aside and said bluntly “keep.an eye on her, that brave face is going to slip soon & she will crash and burn”. PIP or Personal Independence Payment is the UK disibility benefit to enable us to pay for care & mobility aids. It has a very bad press & the process tested my mental health to the absolute limit. I lucked out with my assessor who was kind & fair and was so jaded by the system that he just asked me straight rather than trying to trip me up. I thought he was being dramatic when he said to look out for my mental health. He wasn’t. 

So here’s some pieces of advice on mental health in the workplace when you have chronic pain. 

1. Every Little Helps

It’s very easy to feel like Sisyphus forever rolling that boulder up a hill & getting nowhere. As teachers, even after years, we have this idea in our heads that we can create a community of well behaved & engaged kids. That ideal will never go.

When I first used my wheelchair at school, I was scared that it would impact on my authority and the kids wouldn’t behave. Quite the opposite. It’s allowed me to be softer with them because I’m in less pain, so have more patience, and they copy my more happy style.

It’s not all sunshine & rainbows though. This week I’ve encountered all sorts and it’s worn me down. We’ve had uniform “adjustments”, monosyllabic grunting  (that drives me up the wall), swearing, use of the words “retard” “gender bender” “gay” “mong” (can you say detention with an essay researching the history of why that is offensive?), graffiti, large items thrown through windows, parents complaining that I’m horrible. I’m painting an awful picture, but this is not business as usual. 

I work in an outstanding school. Not because Ofsted say so, but because it’s a place I want to go to. I gladly increase my pain levels to spend time with the kids & my colleagues. And you can bet any amount of money that each of those issues will be dealt with in a style similar to Thor’s Hammer.

Yes, I’m sick to the back teeth of kids talking to me like something on their shoe, but what they don’t realise is that I’m grittier than them. They will pass this course if I have to drag them kicking & screaming. I secretly like them. Even when they’re making my life hellish.

And that’s my secret weapon. They don’t need to like me, they need to know I have their best interests at heart. They initially think I’m evil. I set all this homework and demand proof that they’ve revised. Then had the audacity to set a test for year 11 on Tuesday. They got their results today & the majority did wonderfully. I gave them proof that their hard work paid off. I won.

2. It’s not personal

Meet the teenager who greets you with “let me sing you the song of my people: that teacher hates me”. The song translates to a number of things:

  • “that teacher set me work that I don’t immediately understand and they won’t do it for me”
  • “That teacher won’t let me sit with my friends and chat”
  • “That teacher doesn’t understand why I’m struggling in class”


In the 3rd instance, yes, we’re in the wrong. And we are not infallible and do miss things. But when those complaints come in because you set high expectations & push for independent thought  (and they will), it’s not personal. Not for you as the teacher. It’s hard for children (and nd adults) to adjust from being spoon-fed answers to being investigators. It’s natural to dislike the person who is pushing you out of your comfort zone. I hated my programming teacher. As he strode around the classroom proclaiming we were all useless & a waste of his precious time so no he wouldn’t lower himself to giving us the answer! We resolved to make him look stupid by proving him wrong and aceing the module. We were played. Looking back, he was one of the best teachers I’ve ever had.

I’m not suggesting his style of teaching. But be firm. Follow your behaviour guidelines. Write home. Know that you are the target for their fear of failure & self doubt.  And by knowing that, you also know it’s not as personal as there words suggest.

3. Cake Monday

Make time for your colleagues. They are your support network. This year is arrived on our first day back with a home baked black forest cake and declared Monday breaktimes “Cake Monday” where we all stop, Drink tea, eat cake, and most importantly talk about us (not work, but what’s going on with our lives). That 20 minutes each week allows us to touch base & gauge if anyone is wobbly. Case in point being my wobble over going to hospital in October – I talked about my fears & whilst they can’t fix it, they are keeping it low key with questions about it banned unless I bring it up.

4. Mark your work!

Err how is this good for mental health exactly? Well, set a routine with books. Collect then in each week & leave a minimum of one positive comment in there. Where they need to improve, ask a question instead of telling them.

When you write down positive things about your class, you feel more positive towards them. This is especially helpful for new classes, or ones you find challenging.

My favourite right now is to buy packs of DC & Marvel stickers which go on the cover of their books if they show effort or grit or self control. These also equate to housepoints, but they love my silly comments of “super effort” or my personal favourite “incredible homework ” accompanied by a sticker of the hulk.

4. Ask for help

Do as I say, not what I do. I am so bad at this & am paying the price. My job this weekend whilst away is to put together a list of tasks that are causing me pain, or issues at work.the reason being so I can propose a change in my support from Access to Work. I’ve reached a stage where I’m aware that I’m overstretching my physical capabilities and need a support worker in some capacity. Travel in a converted van with my wheelchair strapped down is painful & noisy to the point of tinnitus.

As part of this, I used an accelerometer on my phone to measure some of the bumps over my 30 minute journey into work. These show a reading in m/s2 (meters per second squared)

Remembering that travelling in a wheelchair means you are sat bold upright thus placing the ptessure of any bumps directly onto the spine: at it’s highest reading, this was a 3g pressure downwards. That’s on a par with a roller coaster. This could explain why I start each morning with tea & painkillers.

This kind of data will help me to legitimately ask for help & not be seen as moaning. It’s unlikely that’s they would, but I’m my head I’m biting the hand that feeds me.

So, a bit of a long rambley post which I guess is fitting for looking after your mental health when you’re dealing with life & chronic pain. 

Until next time xx

#spoonie #blogs about #chronicillness (hashtag city)

See that? That’s my final spoon flying into the distance. Off it goes along with my ability to appear like I’m coping.

A year ago, I said I’d be happy if I made it to Christmas with my job and life in general in tact. I pushed for medical help & I’m the end paid for it as it was not forthcoming locally.

At Christmas, I was determined to make it to the end of the year (academic, so July. I know, us teachers even mess with the calendar). Since then, the liquid food is almost gone & I’ve gained most of the weight I lost (meh, would’ve preferred not to, but health over flubber). By my own criteria in two weeks I will have won. Made it to the end. Two short weeks currently feels like a lifetime & I’m not wholly sure I’m going to get there.

Let me tell you about EDS fatigue. I’m writing this whilst I clock watch because in 15 minutes I can take more painkillers. I’m exhausted, but every time I lay my head down I’m jolted awake by the pain in my legs & shoulder… & neck. I have a migraine brewing at the base of my neck & pushing against my eyeballs. 13 minutes.

I took on too much this week (normal teaching + new form induction for year 8 + year 5 taster day + parents evening). Tomorrow is Friday, but also sports day #2. I’d sent a concerned email to PE about my ability to trek across the field and through trees in potential rain to the athletics in my powerchair, but was assured that the field was totally accessible and the weather would be “hot and sunny”. Actually, it was chilly and drizzly and whilst the powerchair did make it slowly this was not without having my bones shaken out of place to a point where I took oramorph at school for the first time in several months. I have to do this again tomorrow. The fear of adding to current pain levels combined with zero spoons = no sleep and rising anxiety levels.7 minutes.

The question should be asked at this point, why don’t you just put the blog down and get some sleep?

Well, here’s the thing about fatigue and EDS. Imagine you got up at 4am (bleary & a bit confused). Now stand up holding cans of beans in each  hand – raise your arms & keep them there… how long? Well, all day. Gravity isn’t working in our favour – where connective tissue fails, simple lifting of your own arm can be exhausting and eventually painful.

Now you have another tin strapped to the back of your head – tilt your head back and look at the sky. Same thing – All. Day. Spines are there to keep us upright. Unless the connective tissues are lax meaning that sitting up straight, or holding your head up is akin to doing situps all day. I wobble between focused controlled posture & slumpy withered flower.

Finally, get home and drink three cups of coffee before bed because your autonomic system is wrecked and thinks it is bloody hilarious to release a shit tonne of adrenalin into your system as you try to rest. Couple this with overnight hives due to mast cells chucking out histamine in reaction to the drugs that keep you from becoming one of the zombies from 28 days later through sheer pain levels, and EVERYTHING IS JUST PEACHY.

So yeah, when I grit my teeth and sing song “good morning! Yes I’m fine thank you. Nearly there!” at you in the morning, I’m doing it to hide the rocking quietly whilst I do mental battle of “I can’t do this anymore…” with the “yes we can!” chant missing in action. 

Times up. The cavalry has arrived.

Life In A Cage

I had a bit of a strop today. Not uncalled for, but stressing over something I can’t do a great deal about with immediate effect.

Yesterday, the plan had been to grab the bikes and head out for the day. Mr Geek decided that buying the new roof rack for the bikes was on the cards as the old one takes an age to put on & isn’t entirely stable. He would only be an hour getting that and lunch, so I supervised the kids getting their swimming stuff together & cracked on with the last of my marking. An hour later he returned triumphant & we had lunch… then waited. After 2 hours, I was going stir crazy. The kids had returned to their room or were whizzing around the garden on their bikes. And I paced between the kitchen & conservatory like a caged animal.

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Why? Because having busted a gut getting us all ready, I have to wait for Mr Geek before I can leave the house. I can’t get out the back door at all & the front door requires an able bodied person to put down our portable ramps. So I’m stuck. In the end I slouched on the sofa & read my book, then had a nap as I’d worn myself out being pissed off at not being able to reach the good weather aside from leaning precariously out of the door to just breathe in the air. I’ve tasted a bit of freedom now & I’m not keen to go back inside my box.

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Today took a similar turn, with me being perfectly happy to visit with in laws (I really enjoy their company – how many people get to say that eh?), but plan A was scrapped so we came up with plan B of visiting, then some family outside time to de-stress everyone. Having explained that Beanpole was stressing about the looming SATS that start tomorrow & I’m stressing about expectations to make the kids revise; This combined with explaining that sitting still in my chair is causing thunderous pain, but propelling allows me to engage my muscles and fight it off for a bit. So we gathered bits from the shop on the way over & sat still in the sun for over 2 1/2 hours. The net result of this was no time for family outside time as I couldn’t pluck an accessible alternative out of thin air, a bastard of a backache, and bright red shoulders (guess who can’t feel the burn over the nerve pain. Silver linings…). Eventually, instead of brooding I said something. What was heard was “I’m angry because I didn’t do what I wanted today”. I didn’t explain it properly & I apologised for being grumpy. Then took that feeling, screwed it up tightly and shoved it in a mental box. Except that box is full & wont close so I wrote a blog about it to remove it all from my head & keep it sealed up tight. I’m angry because my voice wasn’t heard, I’m angry because I have no physical freedom & feel like I have to doff my cap because otherwise I’m fucked.

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That in itself makes me feel even more trapped. In that way it’s a double whammy because not only do I have to wait until someone else is ready to help me, I have to be constantly grateful and keep my temper. Most normal adults have the option of walking away to cool off, or frankly, walking. How exactly am I meant to do that when I reach the front door & face the prospect of faceplanting if even attempt to get my wheels over the threshold?!

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So here I am, working through it all in my head and realising that I’m not actually angry with Mr Geek; I’m living for the weekends when life is about my important people & when I spend most of that time waiting for them to want to engage with me, I feel hurt. They are my important people. I came second to Pintrest & a bike rack (TinyPants, in her defense, recognised the caged animal thing & read me Grimms fairytales even though she proclaims to hate reading, but she knows I love to hear her read). I’m reacting like anything that once roamed & now has a cage put around them – I’m on constant fight or flight on the off chance that I see an escape. This combined with pain means no sleep. No sleep means bad temper & more pain. And so it continues.
I’m resentful that I now have to sit in that bastard bloody powerchair and crush my spine & pelvis for another week to smile & cajole like a tortured CBeebies presenter, kids who now outrightly ask why I can’t just do their coursework for them, or threaten to bring parents in when I don’t grade them high enough (I do love my job – this half term is always particularly tough. This year moreso than others). However, I’d rather be there to collect my stressed out offspring & feed her ice-cream until she forgets about the exams.

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As with most things, I don’t just offer problems, I find solutions, and here’s my first offering: A customised Google Map for those of us who need a bit more info on places we could achievably get to or get around. I’ve started adding the places we’re visiting & maybe you’d like to contribute? As a crowdsource, we could create an awesome free resource! Just drop me a twitter message @WorthingWeb with your email or leave me a message below.

My Accessible Google Map

The next has got to be rampage. As in ramps, not going on a rampage. Without access to anything outside the house without help, a rampage is going to be quite ineffectual. But if I continue to feel trapped inside the house, there’s going to be an issue. More than just me grinding my teeth at night and sleeping even less than usual. Either I’ll get pissed off and start making my own solutions like bum shuffling over the threshold then dragging the chair after me, or I will mount a protest by refusing to go inside. The latter is pretty much what my old cat did. The fact that I’m considering taking protest cues from a deranged and not mildly psychopathic ball of fur, teeth, & claws ought to be saying something.

I’m asked a lot at various appointments about my physical symptoms & Mr Geek is more often than not asked how he’s coping. Only very occasionally do professionals ask with any actual interest how my head is. God forbid, I might tell someone the truth one day and tell them that I was a real tiger once, but now I just pace back and forth between the corners of my strange cages.

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