Why I’m Quiet

Hey guys. I know quite a few of you pop in here regularly to say hi (I’m still bemused by the ongoing stats!).

I’m not actually being completely silent, but instead have been flat out classroom teaching, tutoring, and blogging with my professional hat on!

If you fancy seeing what I’ve been up to, I’m in full glorious Technicolor over at www.TeachAllAboutIT.uk

It’s been a total whirlwind this year & I’ve just popped on to say whoooo! My tutoring business had it’s 1st birthday this week. How very exciting!

That, and I promise to write something not to do with teaching soon…

Advertisements

Doctor Doctor, I keep falling asleep

…during the only hour you can book appointments. Which is infuriating.

I tried booking an appointment through their app, but the next available one is 6th May. My current prescription will run out this weekend. Fuck.

This is the downside of setting GP practices targets on appointments – their solution to seeing people within 12 hours is to release all the appointments at 8am, deal with the stampede and if there are no appointments, well you haven’t booked one so you’re not part of the stats.

So why not just join the stampede? Well, because the screaming leg & hip pain has a lovely habit of showing up like a drunk ex at 1am and demanding I pay attention. This means that once I do get to sleep after electrocuting my pain into submission (TENS ftw, and sadly we don’t get to electrocute the ex) I’m generally unconscious from a combo of being exhausted and heavy opiates… 8am gently rolls past… 9am and I log on bleary-eyed to no appointments and a rising feeling of panic that I’m going to run out of my super-effective slow release painkillers & have to return to the boom & bust of 4 hourly doses.

Going back to work on Monday whilst in the current “shiteverythinghurts” phase is going to be a barrel of laughs. I’m still in the sleepy bunny stage of having swapped to slow release morphine instead of the massively wired state of the max dose of Dihydrocodeine. The change hasn’t stopped the pain, but I care less. My joint pain is way more stable, but the nerve pain from reducing the Gabapentin is like white hot needles in my thighs. Which is nice (said in my best Felicity Ward voice). CRPS is a pain in the arse, or legs in my case. Or top half of legs as my lower legs are numb (small mercies).

I’m not sure how many TENS pads you can put on at once, but let’s give it a go!

Wish me luck gor the 8am syampede I have an alam set (& 5 1/2 hours to get some sleep!).

Night night x

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.

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.

What Keeps Me Going

I actually wrote this a week ago, but have been too knackered to proof-read & post it. So yeah, pretend you’re reading this a week ago… Or not. Same pills today.

“That’s a lot of pills!” exclaim my friends when I see them in the evening and they see me take my evening painkillers. This is true, but I’m held together by a lot more.

There’s a trend of people with chronic illness posting photis of their pills – although it may look like “sicker than thou” behaviour, it’s actually a response to people who see us functioning and berate others who don’t have the capacity and/or backup to do the same. This isn’t a positive attitude, or other such inspiration porn nonsense getting us through, it’s a shit load of pills, coping strategies, and people who carry us (sometimes literally). So let’s take a look at today as an example…

This morning started at 6am with a cup of coffee, overpowering nausea, and vitamins! Heart rate 56, blood pressure 86/62.

A hand with a variety of vitamin tablets

Due to the joys of Ehlers Danlos, I simply don’t digest or hold onto vitamins so need to take high doses to gain any effect. Other times, my stomach holds onto drugs for a few hours then digests them all of a sudden with the next dose. Because there’s nothing scarier than your stomach having a parasitic grudge against you. This morning contains:

  • Multivitamin with extra iron
  • Cod Liver Oil with glucosamine, both of which are good for joints, reduce inflamation, and tissue repair
  • High dose vitamin E to bolster immunity and improve circulation (useful for keeping POTS in check)
  • Evening Primrose Oil – because of lady things

Couple this lot with a naproxen to dull the aching and I was ready for breakfast. As usual, it’s a cinnamon pastry swirl thing which is basically the only thing I can eat in the morning without wanting to vomit.

Mr Geek gets me washed & dressed, then I can paint my face. Being over-tired at the weekend sparked off my rosacea, so beneath the foundation is a layer of Rozex – this stuff is miricle cream for rosacea in general, but it attacks the evil deep cysts that appear when nothing else does. It’s a mild antibiotic that restricts blood flow around the skin, sort of like acne cream but for inappropriate immune responses.

A hand hoding a used tube of Rozex cream

Cup of coffee #2 comes into work with me & raises my blood pressure higher than the previous undead level. HR 65, BP 102/73.

Work is a welcome distraction and despite feeling a bit overwhelmed right now with marking coming out of my ears, getting into some meaty project work took my mind off wanting to hurl. At the same time, I also kept sipping frim my bottle of diet coke which is another good way to settle stomachs…. And yes, I know diet Coke is the root of all evil, but I’m not being sick, so meh.

Lunchtime rolled around & I looked at my snack pasta & made a face, so opted for the bottle of slimfast in my bag. I’ve tried the medical ones & build up shakes, but I can never stomach them. Slimfast works for me, so I’ve stuck with it. Add in some Naproxen as a pain relief desert because my neck is sore & my back is in icy pain. HR 96, BP 91/65 (eating carbs doesn’t suit me but how else do I get through the day?!)

Final lesson of the day started with a mild headache from trying to (and failing) listen in big conference centre meetings*. As the lesson went on, the lovely flashy lights started and the right side of my face thumped. Metaphorically limping back to my office, I could’ve cried when my lovely colleague signed to me to ask if I was ok. The pain in my head was pulling my hearing levels down further & the brain power needed to lipread was too much. I was really lucky to catch the migraine early and attacked it with a Sumatriptan and Dihydrocodeine as what had been one side of my face was now in my spine (see my migraine post for why all the big drugs). I could literally feel the fog lifting. Bliss.

Unfortunately, post headache I’m tired & foggy and by the time I get home at 5pm I can’t function verbally or focus enough to lipread. The girls & I head up to bed to watch Bob’s Burgers & rest.

After I’ve semi-napped, Mr Geek brings up tea of grilled salmon & vegetable rice. It’s bland enough to et, but tastes nice. For the 4th time this week, we eat dinner in bed as I’m too exhausted to sit at the dinner table.

Evening drugs of:

  • More Dihydrocodeine – opiate painkillers that control my baseline joint pain well
  • Gabapentine – this is technically an anti-epilepsy drug, but it works well on the nerve damage pain.
  • Vitamin D – massive doses of this reduce joint pain, increase energy (ha), improve bone density, and make me a little ray of sunshine
  • A few others to deal with the ahem.. side effects of the opiates

Around 11.30pm my neck pops so hard that it triggers my spine being an arsehole again so Mr Geek measures out a safe dose of liquid morphine to at least help me sleep.

So there you have it. Before you chastise someone for not working through ill health because you see people with chronic illness “coping”, remember what goes into that image you saw. We are excellent actors, but also have a supporting cast of narcotics, and people who feed us, dress us, and take on all the jobs around the house that we can’t do because we’re busy looking like we’ve totally got this.

Even so, I’ve totally got this ok?

…. As a final word, I am a firm believer in science and I am perfectly aware that my headaches are triggered by orthopedic issues. But that doesn’t stop people giving some interesting advice /cures! Here are some of my favourites:

1. Head-TENS – Now I’m all for TENS as part of my toolkit, but I’m not up for electrocuting my heart or my brain.

2. Sex – with a migraine? Ha. Hahaha. Hahahahaha! No.

3. Um.. Pulling the blood from your head! You know, I’m not even sure what’s going on here even with the explanation. The internet needs a child lock.

*please don’t stand in front of windows when presenting. If people are lipreading, it’s nigh on impossible.

Talk to The Hand

We’re going away this weekend with a group of friends that we see a couple of times each year in person, and regularly online. We are the good side of meeting those weirdos that spend hours playing computer games – we are those weirdos.

Each time I see them a little bit of me has dipped. It’s like a health version of those growth charts where you measure the child & mark it on a door frame. The last time we all met up was last September & I was coping well – my rosacea was trying to eat my face, but I was cosplaying in a mask so it was fine. Since then, my neck has got worse and causes much more frequent blinding migraines without warning, and my hearing has got worse.

The first is unpredictable, but I can throw drugs at it & they’re used to me being gently massaged back into place by Mr Geek as we carry on our game. There’s a neck brace, but that’s to keep my skull from sinking & re-enacting scenes from GoT. Like the other braces, largely ignore it. The second is constant and more of an issue – I can’t hear you.

So this post is more of a pre-holiday Deaf Friend 101 for my friends of stuff I’ve learnt works & ideas to nake everyone a bit more comfortable. It also includes a few signs so you know why I’m flapping my arms about.

I Can’t Hear You (properly)

Seriously, I can’t stress this enough. It’s got worse since the migraines stepped up a gear and if you call my name, I’m going to hear (maybe) the vowels – if there’s other people talking, you’ve no chance. To get an idea, imagine being in a really noisy club (yes, I know we don’t do social) and trying to have a chat. Their voice melts into all the other noises & you haven’t a fucking clue what they’re saying. Now put noise cancelling headphones on that play a hugh pitched ringing, and you’re almost there in my head.

My hearing aids amplify everything, not just your voices. It’s sensory overload – whilst it makes everything clearer, listening to crisp packets open in HD all day gives me a massice headache – I prefer my quiet dentist drill head.

How to help:

  • If I’m not looking at you, tap my shoulder (it’s not rude) or wave
  • If lots of people are talking, make eye contact & still wave
  • Talk normally, shouting distorts your mouth
  • Please don’t cover your mouth (if you have a beard expect a fair bit of guess work on my part)

Want a quick answer? Try a sign:


(For help you, just switch the direction)

Playing Games

Board games are great because they have visual clues to what’s going on. Except we play arsehole games where we switch rules & co-op (badly). These are confusing anyway, but I am channelling my World of Warcraft character here – I’m on /follow and wondering why you guys are yelling.

This does not mean that I don’t want to play! I have some serious FOMO right now. I shall go to the ball & laugh inappropriately because I misread what was going on.

Ooh look! More videos – because every day is a school day 🙂

Win!:

Lose!:

Fire Alarms & Such

Being practical, you stick nine nerds in a cottage one of is going to set the fire alarm off. I do hear alarms, but duller (is that a word?) so they invoke less of a reaction. In an emergency, just point to the door – I’ll get it & as we’re on the ground floor gettig out on wheels shouldn’t be an issue.

For less desperate stuff…

Need:

Doctor:

Tired (not big boobs):

Bed:

And finally, because they’re a staple at every meetup & I want to see you sign this without laughing (icepop):

Finally finally, yay for the weekend & Superbowl Sunday with awesome people 🏈

All of the sign videos are from the BSL Dictionary.