Teacher in a Wheelchair series : The Successful Cyborg – tips 1 – 5

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.

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).

I am in no place to judge others, but first me making it into work helps. No matter how much pain I’m in, I’m there to make an impact on those kids lives which leads to trick number 1:

1. Distraction 

Of course there are times when I’m in so much pain I can’t think.or verbalise. But for daily ‘my normal’ levels of pain being busy let’s me push through more. Handing out house points in exchange for homework is my current favourite- I’m focused on the positive & lists.

2. My Mug & Staying Hydrated

I went along to one of the most useless OT groups ever to be run recently. One suggestion first drinking was to kit use dainty china cups for your tea, but instead use a mug. I’ve never used a china teacup! 

I need to drink a good 2 – 3 litres per day to remain conscious, and I need to do this in a little & often way. Also, I hate drinking water. My solution: green, jasmine, or earl grey tea (weak & no milk) in a constant supply via my thermos mug.

Between 8am – 5pm while I’m at work, I’ll get through 4-5 of these by carrying it around with me & just topping up the hot water until I’m drinking vaguely tea flavoured water. The Thermos makes it stay warm for longer & the handle is big enough to put 4 fingers through  (this takes the strain off your smaller joints). But the biggest winner for me is the lid : it’s a suction lid, so no screwing! & the middle twists over to reveal a sippy bit which reduces spills without being obvious that I’m using a sippy cup!

3. Morning Rituals

Our mornings consist of getting me, my mum, & Mr Geek to work and both kids to school. This is a feat of epic proportions only achievable because my Dad takes the TinyPants school run (now Beanpole is at High school, Mr Geek is slowly letting her get used to getting herself there by driving her to school).

Mr Geek wakes me before 6am by putting the TV on in our room & greeting me with coffee or squash and painkillers. Then he helps me dress. After this, I have 20 mins to go through my makeup ritual. This quiet time gives me chance to let the painkillers work, or just come to without being overwhelmed.

I could have 30 minutes extra sleep, or I could disguise my exhausted face using baskets full of make up & moisturiser. This is my war paint. My axe is sharper when you can’t see how weak I am.

4. Hygiene Hacks 

You probably noticed that my morning routine didn’t include a shower. I didn’t just forget to include it, if I attempted to shower each morning, I wouldn’t have the energy to get to work. Here, a combination of baby wipes, exfoliating face wipes & a wet flannel helps freshen me up first the day. These are the very real choices we have to make to hold it together. Of course I would prefer to wash properly, but needs must, and exfoliating wipes are remarkably effective for washing face & underarms each morning.

The Nivea 3 in 1 wipes are my current favourite and smell nice too. A much cheaper (and just as effective) version is from Primary, although I’m not keen on thinking about the chemicals added to the latter. I keep my cheaper wipes in my handbag in case my stuffy classroom gets too much and I need to freshen up.

For my hair, I use a Tangle Teaser instead of a brush as I can grip it with my whole hand. With over a foot chopped off of my hair it’s much easier to handle & keeping it curly means I can miss a bit of brushing & squirt it with water / mousse and no one will know! If I want it to look styled, I still need Mr Geek’s help.


5. Painkillers are part of your toolkit

There’s a lot of debate online about opiate use & whether we’re all just junkies. Much of the debate is conducted without asking those who take them if they actually make their quality of life better. For a perfect example, watch this weekends MedX talk from HurtBlogger:


I would’ve preferred to link to her being subsequently patronised & talked over by a panel of doctors who were pushing their anti-opiate agenda, one of which suggested taking a less effective drug because a bit more pain is ok. No. It isn’t.

For me, opiates reduce my daily pain more than any other drug (oooh and I’ve tried them). They are part of my toolkit to create a manageable baseline & address and breakthrough before I hit meltdown.

Without them in my toolkit to be used sensibly*, my quality of life would be appalling. My risk of self medicating, very high. My mental health, very poor.
* sensibly in this case means at the minimum dose to achieve a suitable reduction in pain. There is no expectation of no pain, instead a tolerable reduction.

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I’m Crap At Pacing

It’s December in the northern hemisphere and yet here I am laying on the sofa with an electric hand fan trying to cool myself down and feel less weird.

I’ve not blogged for a bit as I’ve been struggling to keep functioning & when I ceased functioning, I was struggling to regain functionality! There are a good few people, some close by who are struggling far more than me right now and I wish I was able to find answers for them too.

Thursday I conked out having utterly overdone it at work and had the worst car journey home. Mr Geek picked me up from school Thursday evening as it was our 10th wedding anniversary and we had an evening of cuddles & films planned. He’d dropped me off that morning not at my best (OK,  I was woozy and nauseous and finding it hard to focus – not brilliant teacher qualities). By the time he picked me up I was a lot worse. I could barely keep my eyes open and was either sleeping or passing out in the car, I’m not wholly sure, but each time I snapped awake I felt intensely car sick and in too much pain to tolerate. A 30 minute journey felt like it lasted hours.

Once we got home, I laid my head on Mr Geek’s lap and fell asleep with him stroking my head (Romance isn’t dead, but it is sleepy). This was followed by a fitful night of insomnia from pain, wild fluctuations in external body temperature, and palpitations. Suffice to say I wasn’t having fun. Friday just wasn’t going to happen. I called work, set cover lessons and collapsed in a crumple back on my bed. I vaguely remember saying goodbye to the girls and Mr Geek, but nothing existed in my world aside from sleepy acknowledgement of purring from Thomas our cat who kept me company until I woke up just after midday.

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Aside from still feeling hungover (?!), I felt more alert Friday afternoon and even managed to watch a film with Mr Geek whilst he wrapped presents in the evening. Weirdly, that worried me more than feeling unwell – what if the only way to feel vaguely normal is to stop and rest more than I am? What if I do actually need to nap? Teachers can’t nap. Teachers can’t just have a rest – after staying alert all day, teachers need to keep going with admin, planning, feedback and more feedback with those bloody green pens. Teachers can’t fall to pieces because they’ve attended just 4 out of 14 parents evenings. That’s insane. I need to get a grip.

Saturday followed similar lines, with us taking the girls to collect their kung fu black part 1 sashes in super proud parent style. It also saw final relief from some seriously unpleasant slow transit stomach issues (*** TMI poopy talk alert!!! *** ) which the pharmacist had suggested I treat with lactulose – it had been having very little effect despite increasing the dose to over 40ml. In the end I resorted back to Ducolax which prompted at least some movement even if it was not the nice nor painless version lactulose promises. This prompted me to chase my referral to professor #2 who is meant to be looking into my stomach, slow transit, and inability to eat more than a bit of solid food each day. I’ve felt nauseous since August – it’s not funny anymore.

Today started in a productive way with me sitting up in bed and wrapping the presents that Mr Geek can’t do… it would seem a bit mean to make him wrap his own stuff just because my hands are being crap. And actually, they’re not too  bad today. After 3 presents, various bits of me were complaining loudly at being forced to hold scissors and pinch paper. By 5 presents, I had to sit on my hands to “smooth them out”. Totally worth it for him.
Seeing as the kids wanted a Darth Vader tree, we’ve colour co-ordinate the wrapping paper because hey,  why make life easy? 😉

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Mid morning, we met friends that we’d been promising to see for weeks for bowling (my role was chief taker of photos) which the kids just loved. It also gave Mr Geek a chance to unwind with the kids. Robowheels really came into their own here as I could sit in a corner with my blanket and chat whilst the others weren’t throwing shiny balls down a wooden ramp towards poor defenseless pins.

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Just these two thing took me back to my previous knackered state, but we had also promised to pop in and see Mr Geek’s parents which is a weekly visit that we all enjoy. By the end of this though I was back to eyelids trying to glue themselves together and feeling sick. Any attempt at pacing over the past few days had gone out of the window and I’d blown it.

A new development in this body crapping out thing is the even more overwhelming tired – I’m getting used to standard fatigue where I feel more tired than I thought possible, but this is like melting into the floor tired coupled with nasty Alice in Wonderland spinning head, and muscle aches like I’ve been overdoing it at the gym. (Ha! Some hope!)

I did my standard swoony thing getting up just after dinner and checked out to see if my heart was raised – I’d gone from 53bpm to 104bpm which explains the swooning, but none of the other stuff.

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In massive contrast to how I started this blog post, half way through writing I was under a duvet with the heated blanket on as I was doing an excellent impression of an icicle. So far the specialists have banded the dysautonomia diagnosis about between them and at me and hopefully I can get this confirmed when I see professor #1 on Wednesday. I say hopefully, as at least that gives me a firm explanation why my body appears to go into shock every day or so. Because that’s sometimes how it feels with the ice cold limbs, thumping heart & random shaking (Although that’s rare).

I’d like someone just to tell me how to fix this, or how to slow down without letting people down. Or at the very least, how to stop it getting worse as its starting to scare me.

I Used To Have Brain Cells

So my GP has upped the gabapentin again and swapped my tramadol for oramorph which means that whilst I feel like I’m a functioning human  with thankfully a marked decrease in pain,  I pretty much resemble Neil from the Young Ones.

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My hip spontaneously popped back in during a year 10 class causing me to yelp in a very unprofessional manner which made the kids laugh, then when they realised what he crack was make the urgh that was your bones! face.

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Whilst discussing trying to balance pain relief with being conscious with  the GP she asked me how I was coping at work. For the first time in ever, I answered without hesitation or putting my Shields up (totally caught off guard). I’m not.
I was a brilliant teacher and as much as they still get 100% of me, there’s less of me to go around. I can’t work as much in the evenings and weekends because I’m recovering from getting myself out of bed and being present and focused in the classroom despite levels of pain that make me want to make guteral birth noises.
I’m just not ready to let this part of my life go. I’m terrified of the financial consequences of not working. And yet despite all of these things, I long for  some time to hibernate and recoup some spoons. It is a worrying point when I look back at the day I caught norovirus and spent the day holding a bucket on the bed so I could watch Star Trek whilst hurling (every 10 minutes) and consider that “me time”.
Norovirus has got nothing on the way EDS is kicking my arse, and yet here I am taking my pills, drinking my drink, then crawling into my chair to act like I can totally cope.
Tomorrow is another one of those 13 hour teach then parents evening days.

This too shall pass.

#FiveMinuteFriday – Home

I have 5 minutes with no interruptions or edits. These are my words.

Go:

I wish I was at home today.
At home, my youngest baby was having her seventh birthday.
I was at work.
I left my home at 7am so I was not late for classes.
I left her at home with a loving family that over the course of a school term I feel more and more distant from.
At home presents were opened and sweets were packed into school bags.
At home she was cuddled by all her grandparents.
At home she was tucked into bed by her Daddy and settled down to sleep happily.
I came home at 10pm to sleeping children and a sleeping husband.

I missed my daughter’s birthday entirely for the second year running because of work commitments.
I won’t get these days back.
I am doing this for all the right reasons, but soon it will be too late and it won’t matter if I’m there on her birthday or not.

Home is where my family is, but more often than not over the past few months, it’s not where I am.

Stop.

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No-one should be so tired that they contemplate climbing in the wardrobe to find Narnia just in case Mr Tumnus might let them have a nap on his sofa in peace…..

Something has gone awry. Anyone who says that teachers have a nice cushy number ought to count the number of hours I have spent with my children since Sunday night when they went to bed.

I can tell you, because I worked it out. Discounting kissing them goodnight as they slept, 70 minutes in total. That’s 15 minutes each morning while I ingest enough coffee to make me fit to drive to work and 10 minutes for two nights this week when they snuck down to say goodnight.

What’s worse is I feel like I’m not being committed enough, because I’m openly complaining (only on here). I felt obliged to answer emails at 11pm and beyond last night, knowing that I needed to be up by 6am.

I know that I’m doing the absolute best for my family by being a working parent, but that parent bit is beginning to feel a bit fraudulent. I’m not really parenting anymore. How can you parent for 70 minutes a week? Apparently, spending a week hooked up to heart monitors wasn’t enough to scare me into taking it easier. It was enough to make me ‘think’ about it and realise there’s an issue, but so far I’ve yet to come up with a feasible plan of action, other than give everything up and live in a yurt.

This isn’t very in line with my attempt at being zen, but I’m too tired to put any perspective on this. I’m not being very rational, or logical. I’m too bloody tired to bring logic into this argument. I just pulled a 13 hour day plus travel (I’ll admit Thursday does contain my favourite part of the week when we do open IT activities and let the kids loose on random bits of tech like raspberry Pi and makey makeys – that’s a whole other post though).

The fact is I will cope, I will get up extra early tomorrow to wish midget a happy birthday and make her that special birthday breakfast before I leave at 7am, I will get through the 14 hour day plus travel tomorrow, I will teach the classes to the best of my ability, I will converse with parents and actually I won’t lose my temper. Why? Because that’s what you have to do.

Stiff upper lip and all that. We are, after all, British.

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Why being a Frog is better than a Prince(ss)

I feel very calm. I don’t often feel calm and it’s a bit weird. It’s the week of the mocks, the actual exam module results come out next week, my boss is away leaving me in charge of a major bit of school software and we’re neck deep in coursework. I shouldn’t be calm, I should be passing out with stress.

It’s just that I’ve discovered stoicism and it’s hit a raw nerve with me. I feel I ought to explain the frog reference, but bear with me for just a little bit longer. The concept of stoicism is to look at situations that cause us emotional distress with a realistic eye. How bad could this actually be? Am I being irrational about how bad this actually is? And even if it isn’t an ideal situation, do I actually have the power to change it? Well, in a nutshell (there’s a fair bit more).

But now for the amphibian metaphor…

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I have been a princess for far too long. I had hugely high expectations of myself and those around me and was (ok, am) massively disappointed when people, including me fall short of these. I considered myself personally responsible for the actions or outcomes of those around me, and most importantly, I clung (cling) to familiar routines and places to create a sense of security. As such, I have lived in a constant panic that the throne might be moved from under me and I will fall flat on my arse.

Instead, I’m aspiring to be a frog. I’m sitting on a lily pad and sunning myself. While I’m here, I’ll assess what’s going on in the pond and when the time is right, I’ll either dive into the pool or hop onto another lily pad to do some more rational assessing of my surroundings.

Frogs don’t obsess over maintaining a kingdom. Frogs aren’t obsessed with constantly looking like the right kind of frog – as frogs go, squishy is about as good as it gets. Frogs don’t try to control those around them – if a stalk swoops, they take evasive action (or get eaten), but they can’t influence the stalk; if a fly lands close, they eat it. Frogs don’t have expectations of their surroundings – if the lily sinks, there are plenty more.

Being a princess is high maintenance and bad for the blood pressure (as my GP has informed me on several occasions). Being a frog gives you the power to let things go.

What good will it do to worry about the exam results now? I can’t change them. I did my absolute best to provide the best learning environment possible.
What’s the worst that could happen if they’re bad? I could lose my grade 1 teacher status. People would think badly of me.
Why am I so scared of that? Why is being ‘top of the class’ so important to me? Is this a need for approval? And if so, if striving for a seemingly unattainable goal is the only route to approval, then is it time to shift the goal posts? And is it in my power to do so? Because if I have no power to change it, then worrying won’t make a jot of difference and it could be a lot worse.

So, for now, I’m a frog and it’s time to ride the lily pad.

A quick thank you to a new follower. I most definitely am becoming a happster. Ribbit.

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