Spaceship Hospital

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It’s early Thursday morning and I’m sitting in the patient lounge enjoying a quiet cup of coffee before the hospital really wakes up. It’s like living on a spaceship, one which routinely docks to allow ingress of a wave of doctors, visitors and various delightful people who do things like bring newspapers and magazines, or just drop in for a chat with lonely patients.

Then the ship takes off and orbits for the day, all its occupants circulating busily, and in the evening it docks again to let all the doctors and visitors out. But there is a constant on board, the crew of nurses and nursing students and the zombie passengers who clank and shuffle and drift and occasionally pelt around the corridors and stay aboard no matter what.

The hospital is quite separated from everyday reality. The doors are like airlocks.

It’s such a complete shadow-world that in one way I feel I never really left from last time, and even when I physically get past the airlock in a few days there will be a shadow-version of me remaining to shuffle and clunk around and around and around …

The illusion is strengthened by the fact that I’m getting to know the main staff quite well, and also some of the serious Professional Patients.

I might carry on like an old hand (well in fairness I have been a patient in various hospitals a fair number of times in the past few years), but I’m actually a raw recruit compared to some people who really do spend half their lives as patients in Spaceship Hospital.

The true beauty of this particular place – apart from its delightful committed staff and excellent standard of medical care* – is the patient lounge where you can sit over a cuppa** and watch the sun rise over the hills and meet all the staff and the seasoned campaigners as they pop in for a hot drink or a juice or some fruit, or just to sit in a proper chair and feel sort of normal for a bit.

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Sort of normal

I’ve learned all manner of incredibly useful information this way. Things like how to wrestle the obnoxious, possibly possessed hot water generating thingie so that it doesn’t keep overfilling your cup and spilling scalding water everywhere; how to operate the baffling ice and filtered water machine to refill your jug like a boss; what days the fresh fruit is replenished and even more importantly, the good biscuits***; and best of all – and I only learned this yesterday and only because of the blandishments on my behalf of a dear friend – the Secret Menu Items that you can order to make your daily fare a bit more appealing.****

The hardcore patients have an excellently gritty graveyard humour and laugh about subjects of spine-tingling horror. They all name their various pieces of medical equipment (the name ‘Fabio’, suggested for my own by my dear cousin, was heartily approved by some of the most hardcore patients. ‘The Most Beautiful IV Unit in the World.’ Although my 83-year-old roommate insists that it’s called ‘Bertie’, after the last king. I haven’t been game to ask her why.)

I’ve also had the chance to see some of the doctors and nurses as they chill on their downtime, which is brilliant because nobody wants to talk about medical rubbish a second more than necessary, so instead you can exchange Dad jokes***** and chat about nice things like gardens. It’s always easier when somebody is working with you in an incredibly intimate way and you know what their favourite flower is and that they have a brother who plays football.

Now: big news. As of today I’m officially off the opiates! Hooray! (Pauses to allow you to applaud.) I’ve increased another medication to compensate a bit. As of now I haven’t noticed the difference, which is good, although the next few days will reveal more. And then later when I come off the ketamine and get back to everyday life. Wish me luck!

I’m happier about this than I thought I might be. It means that if I need them again in future, the opiates will work better for me, and it’s also much easier as a patient to not be on such medications. They are getting very hard to get hold of and there is always a slight undercurrent of ‘are you a bad evil addict?’ every time you try, even though I am lucky that my GP and chemist know me well.

I don’t judge for a moment the people who need to be on them, I’m just grateful that I’m in this position that I can at least attempt life without them. They’re the Dangerous Drug De Jour (apologies to ice) and there are so many guilt-inducing articles in the media about them at the moment. Spare a thought for the many many people who cannot function without them because of their pain, and who would never abuse them. Because things are pretty difficult for those people right now.

Well, my busy, glamorous life as a professional patient awaits. I need to navigate the shower whilst attached to Fabio/Bertie, eat breakfast (the eggs aren’t too bad with a bit of salt and pepper on them), and then I thought I might do some colouring-in while watching BBC comedies in bed. It’s a social whirl!

 

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The Most Beautiful IV. The maintenance guys call him my ‘boyfriend’. Sorry, Captain.

*I’m not a shill for the place, we do pay out a good chunk of money to be able to enjoy the benefits of me being here, but I’m also thanking my lucky stars that I live in a country that does have such a brilliant healthcare system. I’m a fortunate one.

**Not a good cuppa by any definition, but when you’re deliberately pouring nasty ketamine directly into your veins for a week you tend to get a bit less fussy about what else you shove in there. Anyway, would you prefer your hospital to spend its funding money on good tea and coffee, or better medical care? Yep, me too.

***No, I’m not telling you. The secret stays with me and the other regular patients and we’ll take it to our graves. See if we don’t.

****See ***

*****Huge thanks to my Facebook friends who have sent me wonderful Dad jokes to share. Dad jokes are seriously like currency in this place.

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Wired/wireless

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I’ve officially reached Noticeably Stoned stage. I know this because last night one of the nurses said to me ‘OMG you are SO wired-looking!’ and my roomie suggested that I needed to settle myself and calm down for a while. *

And because when I was cleaning my teeth just now they started to look so … toothlike. I couldn’t stop staring at how toothy my teeth were. I looked at those toothy teeth for quite some time.

Also, when I look in the mirror I can see that I have one droopy half-closed red-rimmed eye and one bulgy fully open red-rimmed eye. Always a dead giveaway.

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Droopy selfie

(If any of my nieces or nephews are reading: this /\ is what happens to people who take drugs. Drugs are bad, okay?)

And finally, last night when I was setting down to sleep I started hearing a scratchy old radio playing somewhere nearby. It wasn’t very loud so it didn’t bother me, it was just a sweet, nostalgic sort of sound.

Then I went to put in my earplugs and all the hospital sounds went blissfully away, except for that scratchy old radio, and I realised I was experiencing auditory hallucinations. Awesome!

I feel quite proud of myself for this. I didn’t get hallucinations last time although it’s something the nurses have to routinely ask – name, date of birth, any allergies, rate your pain levels, any hallucinations? And some of the nurses have shared some of the more fascinating hallucinations experienced by other patients; the writing scrolling on the walls and ceiling might be my favourite. Very Harry Potter. So I felt that I’d been missing out on the fun.

I don’t know if it’s cooler or sadder that mine are only auditory, but once again I’m amused at my own brain’s capacity for whimsical doolalliness.**

This apparently is worthy of being reported to the doctor, but at worst all it will do is slow the treatment down slightly, and I’m doing good time on it so no biggie.

And it’s not at all loud or annoying, in fact it’s much nicer than my usual tinnitus. I’ll swap this one for the regular, thanks. It’s like some old wartime radio programme being played on a big wooden set in another room. I can’t quite make out what the announcer is saying*** or the tunes of the big band-style music, but I almost can. It’s a cosy sort of sound.

I’m just glad it isn’t aliens coming out of the walls or anything scary.

So what with being stoned and hallucinating, my life is so busy and glamorous that I’ve barely time to fit anything more in! I’m shoehorning a tension headache in there though, just for funsies. And feverishly eating figs. Just sayin’.

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* ‘You’re in Disneyland, I think you should stop wandering around and just lie down for a bit,’ she said to me. I’ve just now overheard her on the phone talking with her daughter, who I’ve met. ‘Ooh, yes, she’s in Disneyland!’ she’s saying to her daughter. ‘And she won’t take me with her.’

**Also I’d spent yesterday afternoon watching Dad’s Army and chortling, so that might have something to do with it.

***’… That was Mr Tucker Elliott and his band all the way from the Pacific Hideaway Hotel in sunny California, playing the “Orange Blossom Beguine”. And now, a quick message from our sponsors. Ladies! Does your war service mean that you come home at night too tired to cook a proper meal for your family? Times are hard but you don’t want your family to suffer because you’re out there doing your part for your country. Try Mrs Robinson’s Tinned Puddings! They’re full of nutritious dried fruit and they taste just like your own home-cooking. Your family will love them. Ask your grocer for the economical Mrs Robinson’s Tinned Puddings which will give your family a satisfying hot pudding for sixpence. Now, back to our regular program of dance music.’****

****I’m obsessed with wartime radio so Stoner Brain has loooots of ammunition.

Zombies, shadows and clanking contraptions

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It’s 6:45 am and the hospital is starting to rev up for the day, rather thrillingly, like in a telly hospital drama but with a much nicer cast. The staff are whizzing around magnificently, clad in spotless uniforms and clutching folders; while me and the other patients snuffle and grunt, blink and mutter darkly.

I’ve been up and down and wandering the nighttime corridors: at 11:30, 2:45 and 4, with a few brief patches of sleep* in between, and quite a bit of lying down drifting about with the k-fairies while my spine rearranges itself into Maximum Insult Mode.

Last time I wrote, my ketamine levels were at four Whotsits Per Hour. Overnight they were up at 10 wph, which is just enough to induce a weird sense of everything happening just a bit in slow-mo, plus more interesting than usual dreams.

At 6 am a shadowy young man suddenly appeared in my room** and with no introduction, racked me up to 12. Which in turn racked up the k-dreams to, like wow.

Over the course of the next few days, they’ll gradually get me up to 22 Whotsits per Hour, which has been previously established as the most my brain can handle before it flings its hands into the air and starts to let bits of my body go offline.

Then I’ll stay there for a bit, tripping you-know-whats,*** before they relent and let me come back down to earth. In the meantime I will gradually decrease then cease my opiates, and bump up one of my other meds to hopefully compensate a bit.

Although my lack of sleep will not exactly help me cope with the hip, neck and back pain that this, um, ‘bed’ has created, at least I now know that I will eventually get so tired that I’ll pass out regardless of the pain, the lights, and the inevitable patient somewhere on the ward who starts yelling random stuff at the top of their voice at 1:30 am.**** So that’s okay.

From recollection today will be one of my most challenging, as my body adjusts to the hospital environment and my mind settles into k-space.

I’m really praying that there won’t be any migrainey action. So far so good.

Spoonie life is SO glam. I’ve re-entered the shadow world of pyjama-clad zombies who live in a different time zone marked out by shift changes rather than sunlight, shuffling around dark corridors dragging clanking contraptions ***** and acknowledging each other with a knowing grimace at bandages, drips, swollen and shrunken limbs, and sprouting bits of medical equipment.

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The 3am selfie you didn’t know you needed

 

 

 

 

 

 

It’s a different world and I’m becoming familiar with it. I know about bringing my own pillow and how to adjust the side table. I know what garments work best to shrug on and off over an IV, and how to shower whilst hooked up to a clanking contraption. (This skill makes me very popular with the nurses.) I understand nurse-speak and how to quickly and accurately rate pain levels and, well, stonediness levels, and when to automatically recite name, rank and serial number.

And I have rediscovered very quickly the twist-and-jerk knack of unplugging an IV from the opposite side of the bed without yanking out my own cannula, and how to manoeuvre the cable out from the mass of unexplained hardware behind the bed without unhooking, um, what is that? Somebody’s life support? Ooh. Better not touch.

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My (unnamed) clanking contraption at about 3:45 am

And all of this is good, really. I’m glad that I know what to expect. I admit I was feeling some trepidation before coming in. In fact I was feeling rather glum about the whole thing. But now that it’s happening I find that I can cope just fine, because it may be painful and unpleasant and exhausting, but at least it’s familiar. And I know it should help. And that’s what matters most.

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Porridge, eggs and tomato, plus a banana (out of frame). Breakfast of Zombie Shadow-world Champions.

* I assume it was sleep, or just a brief Painful Bed Coma; either way it never lasted much more than an hour. Such is (spoonie) life.

** Followed breathlessly by the night nurse, who has already experienced a minor version of my suddenly-awoken yelp/shriek of surprise, and had clearly been hoping to head Shadowy Man off at the pass before I woke the entire ward. Unfortunately for her, Shadowy Man obviously gave her the slip, but luckily for the rest of the ward, I was already conscious of my surroundings when he darted in.

*** Please do feel free to imagine a scene of me as a sixties-style cartoon character flying on a giant winged dustpan through a psychedelic forest of neon-coloured shoes and clouds of buzzing handkerchiefs, while ‘Lucy In The Sky With Diamonds’ plays. I fully intend to.

**** Have you noticed that this always happens? I’ve landed in hospital several times over the past few years and every single time there has been a patient somewhere on the ward who starts yelling random stuff at the top of their voice at 1:30 am. Is it something to do with the time of night? Is it a tradition? Do they actually just pipe the sound in to reassure everyone that yes, they may be sick/broken/expiring but at least they’re not that person yelling random things at the top of their voice at 1:30 am? Have you noticed this too? Ever been one of the nurses who goes running to deal with it? For that matter, has it ever been you doing the yelling? I’m very keen to know!

***** Which reminds me, my own clanking contraption is still unnamed. Come at me with your suggestions!

Sunset and name my IV

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I’m all settled in my hospital room now. Without wasting a moment of time, the good folks here have slapped in an IV, got my ketamine started on a low dose, which will be gradually built up until I beg for mercy, and administered an anti-emetic because ugh ketamine.

I have a bed next to a window, and am happy that I am sharing the room with another nice person. The view from the window is actually very pretty looking right out over many trees and distant hills. I’m glad to be able to get sun on my face this week, even if it’s only through glass.

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Not so rough 

From experience now, these are the things that will really start to matter as the week progresses. Access to natural light, something distant to rest my eyes on, trees and birds and weather to enjoy.

My roomie and I have already agreed that hospitals are no place for sick people. I’m lucky that apart from my usual pain and fatigue and anxiety, I’m not really sick.*

When you do feel worse than usual, you want comfort and familiarity and sofas and Netflix** and that particular type of tea from your special teapot; you want hot water bottles and cuddles from your pets and to be able to take your paracetamol without checking with the nurses first; to be able to take a warm bath, or pop into the garden to see how your seedlings are going and have a chat with the evil butcherbird.

What you really don’t want is a noisy brightly-lit heavily air-conditioned environment with uncomfortable beds, many strangers***, and food that has been sitting for a long time served at unlikely times, and being woken numerous times throughout the night to be inspected.

These things are hard enough when you do feel fairly normal! By mid-week that lovely view over the mountains is going to stop being sort of nice and start being entirely necessary to mental health.

So yay, lucky me to have it!

I’ve just enjoyed a spectacular sunset plus a small flock of flycatchers whizzing around doing their flycatchery business. At this stage it feels like it’s going to be all right.

Now, important stuff. I haven’t named my IV unit yet, and since it’s going to be with me every second for the next five to seven nights, I feel that it deserves one. So I’m looking for inspiration. Send me your thoughts!

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* Er. Okay. By ‘not sick’ I mean ‘health being poorer than usual’. I feel pretty normal, by my standard definition of normal.

** Still no wifi. Sob.

*** Albeit very kind ones.

Chucking away the parachute

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I’m about to take a flying leap off my safety ledge. That’s what it feels like.

After several months of attempting to go off my pain medication (only the night time dose), I eventually called defeat and went back to the doctor.

I thought I had been doing okay until I looked at the amount of over-the-counter codeine-based painkillers* I was taking for ‘breakout pain’. I was starting to take them regularly, just so that I could sleep.

The thing about those meds is, they may be much weaker than my prescription painkillers, but those puppies will mess you up. They have far more tendency to provoke side-effects, including actually giving you extremely nasty headaches, and mucking about with your digestion, which is really no fun even if you like prunes as much as I do. And they’re addictive.

And it occurred to me that the ‘breakout pain’ they were supposed to be dealing with probably wasn’t breakout pain at all, so much as the same old usual pain, just poorly controlled.

So back to the doc went I. ‘Doc,’ I says. ‘You’ve got to help me. I want to get off these things but it’s not happening. Also, yowch with the painzilla, man.’****

So the doc (pain specialist actually) and I hatched a Cunning Plan: in a couple of days I will take up my Keta-lump and head back into hospital for my second K-Date, and while I’m there I’ll use it as an opportunity to go off all opiate-based meds.

Which may not be much fun. As I now understand, a week on a Special K drip isn’t all red jelly and spacey dreams about being a clownfish. It’s also about nausea, horribly painful mattresses, migraines and snoring embarrassingly loudly. And then there’s no safety-net of nice comforting opiates to take some of the pressure off.

I doubt I’ve been on them long enough to be hugely addicted, so at least it won’t be the fully withdrawal monty. I’m just slightly emotionally addicted to having a reliable way to escape the worst of the pain for a while.

But I have noticed that my daytime dose is not helping nearly as well as it used to: so I have only 3 opions anyway. To increase them and maybe head on down the road to eventual physical addiction; to stay as I am while the therapeutic effect gradually wears off; or get off the things altogether and learn to deal. Which is, I feel, the best choice for me.

So the idea is that I can surf into my opiate-free dream life on a wave of pain-decreasing ketamine, and hope the effects of my second infusion will be cumulative.

Another thing that I hope might help is that I convinced my GP to help me look for a diagnosis for all the muscle and nerve pain, capital F Fatigue, general malaise and brain-fartery that I have been increasingly getting.

It’s been around for a while but gradually growing and starting to get to the stage that it’s seriously impacting on my life again.

It’s been unusually difficult to get some attention paid to it by the medics.

I report it constantly but I think in the usual 15-minute rushed consultations that are targeted at specific, already-diagnosed issues, it tends to slip through the cracks. Or else get chalked up to ‘side effects’.

So I booked my wonderful, understanding GP for a long session so that we’d have time to really discuss it. Then I told her what the problem was, that I wanted to try and get it diagnosed, and why.

The ‘why’ was the important bit. Frankly I’m not sure if there is any way to treat these things that I’m not already doing, but it has been over a year and I still haven’t managed to get back to longer work hours, and that is most definitely not through lack of trying.

The fatigue, stiffness and brain fog are as much the reason for this as my back pain. In fact, these days probably more, actually.

So it’s probably not as simple as getting my workspace zhooshed by a physiotherapist or my movements and posture corrected by an occupational therapist, and voila! less painy, more worky.

In fact after around 4 hours or so at work my brain switches off like a boiling kettle, my body is overwhelmingly tired, and I need to spend 3-4 hours in the afternoon just lying down, in order to have enough energy to eat dinner and get myself back to bed. Which is boring, painful, frustrating and not nearly as nice as it sounds in theory.

But I can’t just expect the Powers of Capitalism to take my word for it when I say that I can’t handle extra hours at work. The only way they can reasonably be expected to tell me apart from a naughty slacking slacker who isn’t paying enough tax is if I have a real diagnosis from a real medical professional agreeing that yes, in fact I genuinely do feel pretty darn awful and staying at work to stare blankly at my screen wondering what day it is, where I am and what this blinky thing in front of me is, is probably not productive for anyone.

Anyhoo, my GP took the luxury of having a nice long appointment to go right back through my medical history, saw a trend that did indeed fit with my tale of woe, and decided that it was time to have a talk with my rheumatologist.

My rheumatologist in turn agreed that yes, perhaps there us something else going on apart from the inflammatory arthritis for which I’m already getting treatment. He is sending me on a new round of exciting tests to check for various other autoimmune problems. (In fact I’m blogging this while gently glowing in the dark as I’m about to get yet another scan-whilst-lightly-radioactive. My life is weird.)

I’m happy to do so, because even if none of the tests show anything in particular, even a diagnosis-by-exclusion would be some sort of key, necessary to unlock the heavy, creaking and reluctantly-opening doors of various employee disability assistance schemes.

Anyhoo, so this is where I’m at. A new round of tests and getting my Dress Jimjams ready for another week’s stint on an IV.

I promise to let you all know how that one goes.
* Yes, the same ones you see all over the news, in hysterical headlines using the word (ugh) ‘epidemic’** and letting everyone know exactly how much money those pesky chronic pain sufferers are frivolously ripping out of your pocket in the form of taxes, in their highly suspect quests to live a life in less pain, while occasionally inconveniently dying from overdoses.***

** I am growing to hate the word ‘epidemic’ almost as much as I already hate the words ‘popup’, ‘flexitarian’ and ‘clean eating’. Please stop using them. Thank you.

*** I’m sorry, I don’t mean to trivialise the problems of opiate overdoses. I feel desperately sad that it should ever come to this. I would probably like to see less finger-waggling at ‘drug-seeking behaviour’ and pearl-clutching about the accessibility of these medications, and a bit more focus on why people might feel they don’t have the resources, the capacity or the desire to access less harmful and longer-term options.

**** I didn’t put it exactly like this, although I think I might indeed have used the terms ‘yowchie’ and ‘painzilla’ in there somewhere DON’T JUDGE ME.

Fatting all over yr bike paths

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Beware, bike paths of Canberra. I’m a mobile fatster, now. A ticked-off, fast-moving, grumpy fatster on wheels.

I have gone and bought a new bike. A new, special bike. An e-bike, to be specific. A bike with a battery. A battery that makes it go faster. And allows me to make decent progress, including up hills, without my spine deciding to bail on me and leaping out my ears and making a run for it.

My lovely new bike, known henceforth as The Yabbie*, is the ultimate environment-friendly transport for the Person With Chronic Pain/Disease On the Move. It’s a ‘step-through’, meaning I have a reasonable chance of being able to get on it in the mornings, and don’t end up hopping down the street like Jimmy Edwards in The Plank.

The Yabster is also relatively light (for an e-bike), so if I drop it I can pick it up, even on a rough day. And it folds up and fits easily into a car, so if I get too fatigued and flake out, I can get the Captain to collect me.

My plan is to use the Yabbie to get too and from work, and do my bits of shopping. It is enormously enjoyable, so I have been riding it just for fun, too.

At the moment I am developing my bike muscles (and my saddle-bum). It’s not a free ride: I still have to use my muscles and energy and can get a great workout if I wish. It just gives me a bit more speed and enough of a boost up the hills to avoid back injuries and not kick off pain flares.

Perhaps in time I will get so used to it that we can get rid of one of our cars. The Yabbie is obviously very inexpensive to run compared to a car, as it doesn’t require registration or petrol; and it’s far better for the environment. I provide most of the power, and the rest comes from the battery which is recharged from home (which means it is essentially solar-powered).

The first time I rode it to work for real, I found it so exhilarating that I probably grinned like a weirdo the whole way.

I did learn a few important lessons. Firstly, it’s a bad idea to zip up your backpack so the zipper pulls are at the top. It turns out that the vibrations gradually shake the zipper undone. And all of your bits and pieces fall out. And if, say, you’re seeing how fast you can get on a nice flat bit, and you have just hit 30km/hour, your personal items spread out along the bike path for quite some distance.

But it’s okay, some nice women on their bikes stopped to make sure I was okay and help me pick up my gear. And that was when I learned the second important lesson: avoid LWs.

I’d been warned about Lycra Warriors, a.k.a Boy Racers. People (especially of the male persuasion), who dress in tight lycra cycling gear and bug-eyed glasses, and who race along roads, bike paths and public footpaths as though they were in some extreme cycle race, and who stop for nobody and no road rules. ‘Watch out for them,’ I was warned.**

Well, myself and the kind women had just about cleared the bike path of most of my belongings when along comes a Lycra Warrior, heading the other way.

I wasn’t duly worried, as his path was basically clear, when he suddenly swerved to the wrong side. Not to avoid anything, but to deliberately run over my reading glasses, which were at the edge of the path, in their case.

My specs went flying one way and the case, another, and the LW rushed by us as though nothing had happened. The kind women and I turned to one another, eyebrows raised and hands on hips.

‘Did you see that?’ ‘That was deliberate.’ ‘Rude!’ ‘Scoundrel!’*** we all said to one another. Then I retrieved my glasses, and luckily they were fine. But the case has definitely seen better days, and has entirely lost its spring.

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Seen better days

I went on my merry way, not too upset because I had been warned after all, and my glasses were okay, and the kindness of those women diluted all the ickiness quite nicely.

But when I mentioned the occurrence to several people with plenty of previous experience, the picture became clear. You see, the greatest natural enemy of the LW, it seems, is the Unashamed Fat Woman On An E-bike.

The attempted reading glasses murder was by way of my punishment, for being out in public fatting all over the bike paths, being an older unattractive female, and having the temerity to take my Big Fat Cheating E-bike out onto the public paths that should belong only to the fit, hot and slender.

And may I admit, that knowledge has given me the most tremendous surge of self-confidence, like you wouldn’t believe?

It’s the power, you see, to annoy by my very presence. My visibility, being all fat and disabled and female and stuff, is evidently quite the potent social and political statement.

I have a new super-power. The Power of Visibility. Yes, the exact opposite of my other super-power, but it certainly has an impact. Otherwise mild-mannered (heh) LWs are driven to frothing rage by my mere existence in their line of vision. Perhaps I ruin their days.

I do hope so.

By extension, it seems that many other people on the paths are pleased by the sight of a colourfully-dressed fat woman bearing down on them with a cheerful ‘morning!’ as they move past on the right on a ticking e-bike.

I have had far more smiles, waves and nods from fellow cyclists and pedestrians than I have had bad experiences with LWs.

I’ve heard teenaged boys mutter ‘Cool e-bike!’ to me as I whizz by happily, seen flocks of grazing parrots, felt the wind on my face, felt my mind unwind as I ride home after work. I’ve avoided parking hassles, rude drivers and scary near-misses at that one infernal intersection where people so frequently seem to forget to give way to three lanes of fast-moving traffic.

Now all I have to do is get to the stage that I can ride more often than I drive. So far, increased pain, bad weather ****, random illness and more distant commitments have prevented me from riding more than once per week.

As I develop my bike muscles (and bike arse) and the weather moves from Merciless Sun’s Anvil into Mellow Autumn, I expect to see more of the Yabbie and less of the inside of my car.

Also I have ordered some decent bike panniers, minimising the risk of my poor glasses being run over again!

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Fast-moving, visible and coming to a bike path near you …

 

* Or, as the Captain prefers, Cherax destructor.

** Obviously not referring to every Lycra-clad male cyclist, as many are perfectly pleasant and blameless. Just the very rude ones who don’t believe in road rules, common manners or other people. You definitely know to whom I refer …

*** Perhaps we didn’t use that exact word.

**** Many keen cyclists will ride in rain, hail or disgusting heat. And I wish them well. As it turns out, e-bikes don’t particularly like very heavy rain (all those electrical connections), and I don’t particularly like collapsing from heat exhaustion. The Yabbie and I are fair-weather friends.

Deal with the devil

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So I’m doing a slightly scary thing: attempting to go off my opiate-based painkillers. And it’s making me all philosophical-like.

At the moment I’ve only attempted to go off them at night. Although I haven’t taken any of my big powerful painkillers in the evening for a couple of weeks so far, I woudn’t call it an unqualified success. I have some codeine-based tablets for breakout pain, much lower dose, but I seem to be averaging one dose of those most nights. Which hardly qualifies as ‘going off opiates’. And in spite of that I have still lost quite a lot of sleep.

Most unnervingly, I have been reminded of just how much pain those puppies had been killing. Cer-ikey! Even though I am still taking my morning dose, the much higher pain levels from overnight have been bleeding through into my days.

Waking up in the morning is not good. And I’ve been using my breakout pain relief (heat, TENS, paracetamol, anti-inflammatories) ALL the time. Getting all the run-on effects – vertigo, jaw pain from tooth-grinding, nausea, totally foggy brain making me constantly forget my … thingies. Words. Being very low on spoons.

The temptation to go back on the Big Stuff is very, oh very strong. And I could. I could always say, oh, work is especially busy (which is true), and maybe it’s not the right time just now. I’ve basically been given the go-ahead by my doctors to stop for a while and try again if that’s what I need to do.

But I keep thinking: I went onto these things knowing they were temporary. I knew the risks from the start. I went on them to save my sanity, and to get my pain management ducks lined up.

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And they are.

Taking opiate pain relief for chronic pain is a deal with the devil. You can have what you wish for – some kind of relief from grinding, sanity-sapping pain.

But the devil doesn’t do freebies, and you pay up big. You will never get quite as much relief as you’d prayed for. After a while, the drugs start to lose their power and you need more and more to maintain your relief. Keep going, and the meds actually start to cause you more pain. And the devilish little suckers are addictive. And they are not great for your liver, long-term.

So, having made my deal and gone onto the painkillers, I’m left with two choices. Either stay on them and end up addicted to medications that are making me miserable, or go off them and deal with what I now understand is the reality of the matter: life without painkillers is more painful than life with them.

The truth is, there will never be a ‘good time’ to do this. I probably haven’t developed a hard addiction yet so now is as good a time as any.

I guess the main shock is rediscovering my pre-opiate pain levels. They are really no joke.

There is a saying: one definition of insanity is doing the same thing over and over, and expecting different results. So why am I so surprised that stopping painkillers means more pain?

What has changed since I started taking them?

I know more about my conditions

I no longer hope for a cure: I am more able to accept that my life is different

I am on other meds to deal with my other symptoms, which are safer for long-term use

I have strategies in place to help me manage my life, e.g. less hours at work

I am fitter, and continuing to get fitter still

I know more about myself in regard to nutrition: I don’t expect miracle cures through food, I know what suits me and what doesn’t and I have learned to reject ‘miracle diets’ in favour of eating a normal nutritious diet without stressing over it

I am more confident in myself and less anxious (thanks ketamine!)

I have the option of continuing with ketamine infusions to control anxiety and keep my pain triggers turned down a bit

I have strategies and tools in place: mindfulness, counselling, TENS, yoga, hydrotherapy, healthy distractions like my garden.

What hasn’t changed?

My pain levels. Speaking honestly, they don’t appear to have decreased at all.

So, I’ll probably be in as much pain as I was pre-opiates, but I will be a much more confident, less stressed version of what I was before.

Taking this all into account, I honestly can’t see any reason not to ditch the opiates.

The serious challenge will be going off the daytime dose. If nights are so bad, I can’t imagine any way that daytime won’t be utterly ghastly. I sincerely doubt that my lifestyle won’t be adversely affected, at least for  while until I get used to it. Perhaps the sensible thing to do would be taking some time off. Possibly I can combine it with my next infusion.

The thing about a deal with the devil is that it always costs more than advertised. Here is where I start forking out.