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

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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.

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.

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?

Call me what you like, I can’t hear you!

Ehlers Danlos is the Syndrome that just keeps on giving. Today I had the joys of having a tuning forks placed on odd parts of my head. No, this wasn’t some strange hippy healing ceremony, but a real life scientific hearing test.

My doctor bashed it against her desk then placed it on various parts of my skull. Everyone else could hear it except me. Seriously, you heard that? Shit.

Having checked her unusual methods on Dr Google, this was to see the type of hearing loss I have. It is actually a thing that rules out my sinuses or ear canal causing the issue.

I’d suffered a bit of hearing loss after having meningitis in 2008, but not huge volumes or enough to affect my daily life. More recently, I’ve caught myself snapping at the kids to stop mumbling when we’re in the car & insisting that Mr Geek be facing me when I talk to him because he’s talking in the wrong direction… I’m surprised no one had mentioned it TBH. The penny dropped when I went back to school and couldn’t hear the kids when they answer questions in class. I can see their lips move, but all I get is a background hum if there’s other noise. There is ALWAYS other noise in a school & I’m exhausted by lunch from second guessing what they’re saying. But I didn’t really want it to be a thing (I have enough things! I don’t need any more things.). It is apparently quite an obvious thing according to my graphs. See? Graphs. I love a good graph.

The joys of EDS means that the bones in my ears aren’t held together as tightly as they could be. Of all joints, my ears?! FFS. 

So what now? Well, I started off with an off handed tweet.

…and now, I’m trying out some basic hearing aids to see if they help & waiting to see how my referral to Action for Hearing Loss can help. Things may take a little while because I’m under 55 and I’m not meant to lose my hearing before I get old. I am a woman of many talents: I can lose my mobility, consciousness, AND my hearing. Go me.

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