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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Maths & Empathy Lessons for Politicians

There’s been a bit of a hoo haa on Twitter recently over the changes to how opiate painkillers are prescribed in the US. Not unsurprisingly, it’s left a number of chronic pain suffers rather nervous. And not just in the US, but over here in the UK where we have a distasteful habit of following on America’s heels like a irritating younger sibling.

There’s a lot of political bluster about the whole thing and lots of statistics being used to show what a terrible problem opiates cause. But I have some questions:

Opioids (including prescription opioid pain relievers and heroin) killed more than 28,000 people in 2014, more than any year on record. At least half of all opioid overdose deaths involve a prescription opioid

– CDC

Firstly, there were 318.9 million people in the US in 2014, so 0.0127% of the population died of opiate related causes. And 0.00639% of the population died from prescription based drugs (we can assume the rest were illegal…). Of this, how many were accidental or addiction related overdoses? No? Ok. How many were deliberate overdoses?
Is this a drug problem, or a mental health care issue?

Ok, let’s keep going with the maths (basically because maths is amazing)…

In the same year, there were 13000 gun related deaths. So put side by side:

Prescription Opiates: 0.006%
Gun Related: 0.004%

Now neither of these figures takes suicide & accidental death into consideration, but one has a potential to be used to help those with terminal illness (Just for total clarification, I’m referring to the opiates), so there is the potential statistically that the numbers are skewed as how were those deaths classified? But also, why is the 0.006% an epidemic that must be crushed, but 0.004% can only be solved by introducing more of the metal things killing people?

Ahem, a quick interlude for a nod to ‘Guns don’t kill people’. (Also, US friends – check out their alternate song, Your mother’s got a penis. You’ll thank me)
https://youtu.be/ICG0MuzEYzw

Right. Now that’s done…
Why are people so pissed off by politicians telling chronic pain patients no more opiates? Well, their carefully thought out alternative is over the counter drugs like paracetamol.

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Now before telling me that I probably just need a paracetamol because pain is mostly mental, I’d like you to yank your finger out of its socket. (We’ll start small). Hurts doesn’t it? Have a paracetamol.

Give it 24 hours. Now yank your elbow out. No, actually dislocate it & tear some muscle for good measure. Different arm. Take a paracetamol. And keep working. Don’t expect any handouts. That’s just laziness.

Same day, shift your hip out of its socket. Not all the way, but enough to grind bone against bone. That’s a big one, so you can have ibroprofen & an ice pack.

Next day… You’re not healed? Aw… tough. Go to work. Your spine shifts out. Paracetamol.

Next day, out goes the knee… am I making my point yet? I haven’t even got to the internal organs, muscle spasms, co-morbid diagnoses, & CRPS. It’s crap. The very fact that opiates make my general pain levels bareable means that I continue to be a productive member of society albeit on wheels & a bit wonky. Your alternative is a screaming mess.

This week one of our online EDS community took her own life because she couldn’t go on with the continued pain. She was 23. I’ve found myself several times this week staring at my phone & wondering if there were any signs that we could’ve spotted, or more support offered. But constant long term acute pain does that to you. It makes you stir crazy & pushes you to the point where you just want a break. Her death sent ripples of shock through many communities and it hit home how close some of us are to just saying enough. It would be easy to blame the conduit for her passing – it’s a tangible thing to blame. But the root cause was unmanaged, daily & unrelenting pain. I wish she knew how her loss has rippled through people shed never even met and that each of us empathises and wishes her peace now without any judgement as to why she didn’t fight longer. 

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I think the laboured point I was trying to make there is that you can’t have it both ways. Pain relief, or productivity. With sufficient pain management, we have incredible potential, but left to ‘man up’, there will be more like Sarah.

And how horrendously offensive to casually place people with chronic pain taking controlled drugs in the same category as heroin addicts taking Street drugs cut with God knows what. That’s not just sloppy science, that’s bad maths. And there’s no excuse for that.

Bad show America. Very bad show.