Well… fuck.

I am a mess.  But you all know me, ever the optimist *rolls eyes* I can say ‘at least it’s not a stroke or a brain tumour’.  😐

Last Sunday (it’s Friday morning now), I noticed some tingling in my tongue and around my lips and it felt like the allergy reaction that I get if I’ve been exposed to, or ingested, sulphites.  It’s normally something that I have only experienced from drinking certain ciders or wines (which I tend to avoid because I’m not fond of the sweeter stuff anyway), but because this sensation had persisted for a few days and because of my family history, I was fairly convinced something else was going on.  I spoke with BigSal and she had me do a bit of winky-blink test and asked if I could swoosh water around in my mouth, and it was fine – both tasks doable.

The following morning, Monday, woke up and – nope.  Couldn’t wink my right eye at all, and failed the swoosh test while brushing my teeth most spectacularly.  So off to the doctor I went – something I was trying to avoid since I have been effectively going nowhere except for groceries and to my mum’s or my sister’s homes since Feb 23rd.  Get to the doctor, tell him I have been experiencing dreadful headaches (with hideous light and noise sensitivity for over four weeks now), and that I have woken up with severe facial paralysis with considerable pain, numbness and tingling, primarily down the right side of my face.  He asked me if I was experiencing any other referred nerve pain or weakness, particularly on the right side of my body to which I replied: “Is this a trick question?”  Because of course, I do. I always have nerve pain in my extremities.  He did a double-take and seemed to remember who he was talking to, and said, “Well, I think you have… ” – “Bells Palsy,” we ended the statement in unison.

Him:  How did you know?  Me:  My father had it when I was a teenager and my sister had it perinatally, so I guess the dodgy nervous system and bullshit immune responses kinda run in the family.

If you don’t know what Bell’s Palsy is – you can google it.  Doctor’s are not convinced they know what causes it.  Some say it is the immune system having a meltdown response to exposure to a virus (Great… I’ve been isolated since late Feb, and gee lemme think, what crazy arse virus is globally running amok atm?).  Others say it is caused by prolonged periods of stress which causes the immune system to go haywire.  Either way, the thing is effectively inflammation that causes all the facial muscles and nerves on one side of your face to go ‘Oh ferfucksake’. No idea, why it only occurs on one side..?!

For reference and comic relief… I provide this almost photo-realistic artistic representation of my face right now with Bell’s Palsy:

Anyway, because of the horrific never-ending battle with chronic neuropathic pain that has taken over my entire adult life, the doctor decides I should go have an MRI of my brain to double-check there are no signs of a stroke or brain tumour lurking about that we might miss because my relationship with pain is somewhat NOT NORMAL.  Had the scan on Tuesday night which in itself was not fun. The technician had said that we may need to add contrast if they see something that needs further investigation or can’t get a clear scan, but that it often wasn’t needed.  So I’m in the scanner for about 40 mins when she comes over and says that she called the radiologist and we are going to need to use the contrast (not exactly comforting given her earlier statement).  Then about another 20 mins in the scanner before I can go – but of course they won’t tell you anything about the scans, ‘Your doctor will have the results by midday tomorrow.’

Which wasn’t overly helpful given my doctor doesn’t work Wednesday afternoons (he opens Saturdays instead) and that meant I didn’t get the results until Thursday morning (yesterday).  No signs of stroke and no signs of brain tumours… which was weirdly both a relief and a disappointment.  Yeah, disappointment – my ‘interesting’ relationship with chronic nerve pain actually had me half hoping they’d find some bizarre (but operable) brain tumour that has been causing my shitty pain condition these last 30 years.  Perhaps that kinda unusual thinking is something I need to spend some time on down the track…

When I did finally call and find out that I have the all-clear, and it is *just* Bell’s Palsy as we suspected. Which means a few days of prednisone – if it helps, take it, if not, don’t… though how you are supposed to tell if it’s helping when I’m feeling so completely shit, is fucking beyond me – and then I just have to wait it out.  The paralysis and pain symptoms should abate in two to three weeks with a bit of luck, and then facial massage and physio-type facial exercises to rehabilitate any muscle atrophy for the next three months or so.  Most people will recover entirely and have no noticeable long term effects – and given I recognised this for what it was really early (due to familiarity with the condition), we jumped on it really quickly.  My dad was not so lucky as he probably ignored his symptoms too long, and had a facial droop/weakness for the rest of his life that left him with a lopsided smile for the rest of his life.

These last few weeks of self-imposed social distancing/isolation have not been fun. Our work has dried up almost completely, and while it has been wonderful having Mr K home so much, it has also been stressful trying to navigate the potential financial implications, cancelling all our travel plans for the entire year and the exhaustive hard work to avoid people – all the people who seem so unconcerned about this pandemic!  I’ve been watching many of my friends struggle with the adjustment of working from home and trying to help school their children (oh my god, my heart is daily going out to my teacher friends – they have been under such inordinate strain in such extraordinary circumstances.  We have been spending our days sharing health information and news articles on Facebook and seriously dark memes on Twitter, while watching America’s dumpster fire of a response to the pandemic scare the hell out of all us (and so it should – this is what happens when an apathetic constituency elects an uneducated, mouth breathing bigoted, misogynistic, narcissist to high political office), making us ever so pleased to be Australian.

Given I have no other symptoms related to viruses we are chalking this up to a genetic predisposition to stupid nervous system and immune system responses and well… stress.  Which is why I decided to write something about this and share it with my friends. We are ALL under weird stress right now, drawn-out and low-grade for some, intense and ever-increasing for others, and of inordinately long duration and with an unknown point of cessation!  I am not great at the self-care thing.  I have never mastered it, futilely seeming to prefer to ignore rather than coddle the various infirmities my traitorous body throws at me… and look what has become of that. So, I implore you all to look after yourselves and look out for each other in your isolation bubbles, and if you suddenly start to feel like you’ve just been to the dentist and the anaesthetic hasn’t worn off when you haven’t been near one for months – off to the doctor, pronto!


One quarter of one century, in pain. Everyday.

I am not one of the lucky few, for whom worries slide off them like water off a duck’s back.  I have PCOS. I am infertile as a result. I also have insulin resistance and metabolic syndrome. And I have had four majorly shitty car accidents that have each contributed to fucking up my physical and emotional health.  And yes, when I talk about my MVAs I always refer to them as ‘shitty’ car accidents, not horrific, not soul destroying, not back breaking, not any another sort of adjective… always just plain old ‘shitty’. Not entirely sure why but probably something to do with associating these incidents with having real shit luck – because none of those four shitty car accidents, were my fault.

The first shitty car accident happened when a cab driver didn’t see me and failed to give way at a Stop sign and pulled out in front of me; I hit the brakes hard and we T-boned into him anyway (it was that or veer into the oncoming traffic).  The second shitty car accident happened on a one-lane country road down near Lismore on Christmas Eve; I saw an oncoming car, dipped my headlights, got two wheels off on the shoulder and approached the crest of a hill.  The other driver said he didn’t see us, (more likely he was just young and stupid), and was on the wrong side of the road when we got to the top of the hill.  We hit head-on.  He was doing about 100kmph, I was doing about 85kmph.  The third shitty car accident happened in Tasmania on the Great Lakes ‘Highway’ (pfft, read: high speed unsealed road), where a friend took a corner too fast and got loose in gravel that was shifty after recent snow melt.  He fishtailed a bit, overcorrected and rolled us into a ditch.  I mostly remember careering for a guidepost thinking, ‘Not again.’  Came to hanging upside down in the car with a smashed windscreen in front of us and a boulder about 2.5 feet from my face. Then I smelled petrol and hit the seatbelt release and fell down crushingly on my neck. Not my best laid plan.  The fourth shitty car accident happened on my way home from work, less than five kilometres from here.  The traffic in front of me had stopped short as they braked to wait for someone to turn into a driveway.  I stopped short too.  The lady behind me, who I believe was on her fucking phone, failed to stop and just drove straight into the back of my stationary Rav4 with her Mazda RX8, lifting us up onto two wheels; we hovered for what seemed an eternity (giving us plenty of opportunity to wonder if we were going to be rolled into the oncoming traffic – a white ute), before the momentum brought us smashing down onto a silver Falcon that was stopped in front of us. Double whammy that one.

Four shitty car accidents, and all I got was this fucked up chronic neuropathic pain condition and a perfectly logical phobia of other people’s inability to stay the fuck away from me on the road.

Today is exactly twenty-five years since my first shitty car accident.  I’ve been through EVERY FUCKING TREATMENT OPTION available… short of heading to Mexico where they stick electrodes up your nose and fry your brain stem – and you have no idea how much I absolutely want to scream when someone says ‘Oh you have back pain? You should try my chiropractor/Bowen therapist/Reiki fucking master’.  They may as well be recommending their favourite goddamn barista for all the good it will do.  Because unless your practitioner can target the nervous system for rehabilitation and/or nerve regeneration, it’s of no fucking use to me. So happy ‘Quarter of A Century of Chronic Pain Anniversary’ to me.

I’ve been dealing with pain every waking moment of every single day for way too long.  I have gone through every fucking emotion possible over these shitty car accidents and the subsequent chronic pain. I’ve gone through the, ‘it’s not fair’, the ‘why me’, the ‘I can’t take this any more’, the ‘I hate my painful body’ and all the other incarnations of negative screwed up thinking that go with having a pervasive and unrelenting chronic pain condition. Most days, I grit my teeth, ignore it to the best of my ability, and vaguely hope no one notices.  I’ll go about the day smiling and nodding and pretending I give a crap about all the stuff that is going on around me, and expend all the energy I have not to let on to my friends and family how much I want to scream at them – “I don’t care about any of this shit, I just want to curl up in a ball, cause as much trouble as I can, and have the nervous breakdown I so desperately deserve!!!”  Instead, I smile and ask them how their work/wife/life been treating them…

Twenty five years and I am absofuckinglutely exhausted.  I haven’t had a single night’s sleep that wasn’t just a medicated stupor, for nearly a decade.  I haven’t had a day without some kind of pharmaceutical life jacket holding my head above water for longer than I can remember.  I haven’t had a moment where my brain wasn’t screaming that my body is in pain since 1991.  I haven’t had a day where I felt strong and comfortable in my body since longer than my drug addled, pain enfeebled brain, can remember.  1991 for fucks sake! I’ve been in pain every day since the C+C Music Factory was ‘Gonna Make You Sweat, Baby’!

I’m completely over it.  But have long since had to reconcile myself to one solid unwavering brick wall of a fact, that drives me every day – that where my unrelenting pain is concerned, I have only two options – keep gritting my teeth everyday and getting on with it or opt the fuck out.

And I’m no fucking quitter.

chronic pain

Carina Medical and Specialist Centre

I am somewhat nonplussed, and unimpressed, by this email that I received from the Carina Medical and Specialist Centre which is a a nearby general practitioners clinic that I have been to, twice – for a girly swot check-up a year ago, and I went there once when my usual GP was away on holidays.  That’s it.  But obviously, I am in their database and they have decided that they can email me for Movember to inform me about their Men’s Health campaign.  Now, while I applaud their initiative in getting on board with the whole men’s health month thing… using my supplied personal details to send me information that is completely irrelevant to me seems a bit much.  Especially since, they obviously have my files and I’m female and therefore not someone who needs a men’s health check up.  So I was mildly annoyed they accessed a patient database to send out a promotional campaign in the first place, and doubly annoyed that their information technology department is so inept as to target the promotional material so poorly…
carina medical centre mens health

But then a little further down email, it seemed to get a little bit worse.  My receiving this campaign wasn’t a matter of accidentally sending a men’s health check up promotion to obviously female patients.  Instead, it seems they’re pimping me out to look after ‘his’ health.  Which I kinda found inappropriate on so many levels.  For one, they’re assuming I have a ‘him’ in my life at all, which certainly is none of their business… as well, they seem to be somehow implying that I’m fucking responsible for ‘his’ goddamn health!

carina medical centre women appeal

What the hell?  I can’t imagine them sending out a blanket advertising campaign to all patients on the importance of regular pap smears and mammograms, and going so far as to say “Gents, if your woman won’t book – book for her.  Early detection saves lives!”  It just wouldn’t happen. They just wouldn’t do it.  So why does this clinic consider it appropriate to send this out and assume that I’m responsible for enforcing my assumed partner to go off and have a health check-up?

Anyway, after a slight ‘wtf’ moment, I did what any normal human would do – attempt to unsubscribe from their bullshit advertising material.  So I clicked the unsubscribe button and was greeted with this:carina medical centre unsubscribe

Yeah… kinda special.  I don’t want their stupid email promotion campaigns aimed at people who well, have penises, but if I click the unsubscribe button, I won’t get reminder emails for stuff that I actually need.  Given my laid back temperament and reputation for having a tendency to do absolutely nothing when confronted with life’s little annoyances – I emailed those bastards immediately telling them how inappropriate it was that I was getting their stupid male health check up email in the first place (given they obviously have access to my records and are therefore able to determine that I’m female!), and that I find it doubly inappropriate that I can’t unsubscribe from promotional material without potentially risking missing out on important reminders!  Fuck that.

Grrr.  What I am really wondering is, though… why does it feel like we are constantly being bombarded with this sort of bullshit on a regular basis – unsolicited promotional emails, things that are just inappropriate or offensive or downright stupid.
Over it. Over it. Over it!

Travel Tips for Chronic Pain Sufferers

Tip  #1:   Just don’t tavel.   🙁

No, just kidding that is a completly unacceptable outcome to me.  So, I have a bad back (read: chronic neuropathic daily pain condition resultant from four extremely nasty whiplash traumas). This is nothing new to anyone who reads my nonsennse, and neither is the tidbit that I love to travel… but I hate to transit.  
About four months ago, I found myself talking to an old friend who was off to Norway and Iceland on an amazing adventure, and she was going solo. We got to talking about what a cool trip she was taking and next thing you know – I’m going too! About that time, I booked a flight to London (where the cruise ship is set to depart this Saturday), and from the moment it was booked (all on QFF points), the nagging anxiety set in. I have not flown to London since 1997, the longest flights I have taken since my last car accident was to Vancouver (20hrs in transit) and to New Orleans (about 22hours)… and London, they say on the little ticketing bit on the website – is a definite 26 hours. Which of course with check in times, lay over for refuelling, and customs on each end, is guaranteed to be at least a 30hr or more transit. :/ 

Thinking I would vaguely attempt to exercise at least the pretense of having some modicum of control over the situation and in a attempt to ameliorate the impending painful flight, I decided to pay the extra $180 (the flight was free, bar taxes, so it seemed like a good idea at the time) to choose a bulkhead seat that would enable me to get up without disturbing fellow passengers in order to bend and stretch to my hearts content. It was a Qantas A380 and I haven’t flown on one of those before so I was choosing a seat without a great deal of personal reference and relying on the SeatGuru and the like for advice. The Qantas website is completely useless for this info – they will sell you the extra legroom and completely fail to mention any other issues with a seat – like it’s in a high traffic area near the galley or near the toilets so can be noisy or if it’s a seat that doesn’t recline… all the sort of shit you actually want to know when you are locking yourself into a teeny space for 30+ hours.

I thought I chose well, a window seat on the bulkhead wing with no one in front of me so I could get up and stretch and make sure I wasn’t too sedentary throughout the trip, and the most important bit – keep my lower back moving or at the very least in slightly altered postures so I wasn’t too jammed up at the other end.

WRONG. It had easy get out access alright, but being 5′ tall, I don’t need the extra leg room and that was all this seat was offering. I sat down and immediately began to panic. The arm rests did not move. Which meant, my (oxymoron alert) infertile childbearing hips, were being every so slightly squeezed on both sides and with no hope of being able to slightly shift weight left or right to alter lower back position for the duration. FUCK, FUCK, FUCKITY, FUCK!!! I felt myself pushing down tears and a sensation like I had a weight on my chest and was experiencing, what I only imagine, the beginnings of an anxiety attack feels like. As calmly as I could, I spoke to the cabin manager and explained my dilemma, why I had chosen the seat and how I had just discovered it was going to be hopelessly inappropriate for me.  

He said those dreaded words ‘It’s a completely full flight, ma’am’ (please don’t call me ma’am) but he was certain he could find someone tall who would love the additional legroom who would swap seats with me… but came back reporting that most of them wanted to stay with their party. Not surprising, but AHHH! I ended up talking to the lovely young couple beside me, a girl in her 20s with her heavily tattooed bearded hipster boyfriend to see if he was interested in taking my extra legroom seat so long as she didn’t mind me moving the arm rest out of the way. Well, Mr Tattooed Bearded Hipster has a bung knee, so was very happy to swap. Thank fuck for that!

So ‘upgraded’ seat useless, and found myself in a dreaded regular aisle seat across from the bulkhead (I hate being knocked by inconsiderate people walking past or worst still – the trolley). Our flight was unfortunately delayed in Melbourne… originally something vague about a ‘technical issue’, and then something a bit more detailed about a ‘mechanical repair’, and then something much more detailed, ‘we have had an oil filter indicator come on for one of our engines, so the mechanical engineers are replacing it now, and we will then be test running all the engines, during which time, we will require all passengers to put their seats in the upright position, stow their tray tables and take OFF their seatbelts’… hmmm, why does it sound like you are wanting the plane to think there are no people in these seats while you ‘test run up the engines’? Whatever… Dear Qantas Mechanical Engineering team – take your time, do all the things, as diligently as humanly possible. Unlike everyone else on the plane already complaining about delays, I shall watch a move, enjoy my free grog and wait until you lot are 110% comfortable and certain that the plane is ready for the 14 hour stint to Dubai!  

During this time, I happened to notice a young mother with a child probably 18-24 mths old nestled asleep on her lap. Dead to the world, the child looked quite peaceful and oblivious to the mechanical hiccoughs we were experiencing. Oh dear Lord, if she had but stayed that way. By the time we were in the air, (around 12:30am for our 10:55ppm departure), and a meal had been served after midnight and about the time they were dimming the lights and convincing everyone to go to sleep… the poor little tyke was wide awake and it was apparent that she had a very croupy sounding cough, with accompanying grizzling at being stuck in a seatbelt strapped to her increasingly stressing mother. Coughing and crying, coughing and indignant screaming… for the next few hours. I have no idea if the mother drugged the kid or what, but I sure as hell drugged myself to try to overcome it. I absolutely over did it on the medication… some Panadeine Forte as we boarded the plane, a few Valium, a couple of Stillnox, and some Digesic over the course of about two hours… and thankfully managed to get some sleep, though not as much as I might have liked – thanks to Little Miss Cough’n’Scream over the aisle.

I was eternally grateful that I had thrown my custom shooting earplugs in to my cabin bag at the last moment – I had taken them with me to Japan and China on my recent trip, but didn’t use them at all, so nearly left them behind this time. So I was extremely pleased that my ‘What the hell, they don’t take up much space’, attitude at the time of packing saved me from attempting to block out the couching and screaming with ill equipped Sennheiser noise blocking headphones instead. Or even worse… some freebie foam earplugs that will inevitably keep falling out!

 At some ungodly hour, the hosties started turning up the lights and preparing breakfast in an attempt to convince us that it was morning. Yes, let’s try and put us all on Dubai time, even though most of us are going on to various European cities?! And it was probably about this time that the persistent Little Miss Cough’n’Scream had finally settled back down out of sheer exhaustion (poor little thing – I do feel sorry for little ones when they fly, let alone when they are flying when obviously under the weather), but on being disturbed, promptly started up again.Dubai turn around was uneventful – though Dubai airport was just as bad as Melbourne for not offering anywhere for people to plug in and recharge devices. Seriously – if chaotic and disorganised domestic airports in bumfuck-no-where-China can get this right, how can a major transit hub like Dubai screw it up?

  We duly waited until the plane had been cleaned and refuelled and then promptly all marched back to our seats. Thankfully the same lovely people who were sitting with me previously were not disembarking in Dubai and I was able to avail myself of the same seat swap for the remaining 7 hours of the trip. I must have watched another 4 or 5 movies knowing that sleep was going to be useless, particularly seeing there was a large family now where Little Miss Cough’n’Scream had been and the half of them were in the bulkhead and the other half were seated behind me, and they were insisting on constantly swapping seats… which mean every time someone got in or out behind me, they were using my seat back for leverage and jerking me around. Not only that by one of them was putting their skanky naked feet up on the back of my arm rest. Urgh… fuck off. That’s not cool. I don’t need to look down and see someone’s feet by my elbow, occasionally pulling on my hair (yes, once again hair went up due to weird people being inconsiderate of the personal space of others… just like being back in China). Anyway, lots of being jerked around and whomever was behind me for most of the flight was punching their damn touchscreen so hard, I am surprised they didn’t poke a hole in it.  

All up not a great flight. I have some tips though that probably make the long haul flight a little more bearable for the chronic pain sufferer..

1) Tell the flight stewards that you are a chronic pain sufferer – there is space on your preferred airline profile to tell them you are lactose intolerant or gluten free, but no where to identify that you have any other issues, unless you require a wheelchair. It’s not always easy to advocate for yourself when you have an invisible illness, tell them you have problems as soon as you board. If you are in luck and your flight is half empty, you may find yourself moved to somewhere more comfortable where you can manage your physical symptoms with a bit more space.

2) Ensure you have all the medication you think you will need for the duration. I have only once tried to fly long haul without plenty of sedatives and pain killers – and let me assure you it was not pretty… there were tears, anxiety, staff not knowing what to do for me and very little they could offer other than a Panadol. Take your drugs. Take all your drugs.

3) Take a heat pack with you if you find these help mask or distract from your pain problems, but always ask the stewards if it is okay to plug them in under the seat. Some will give you the okay, but some will get leery of them because they plugs are primarily used for laptops and not devices with any thermal drawing capacity. They’re usually fine, but the staff don’t want to be responsible for a fire.

4) Find a tiny stool to pack with you to put your feet up a tiny bit. Years ago, before people started travelling with enormous cabin bags causing the need to put additional carryon under the seat in front of you, long haul planes were fitted out with a flip down foot rest even in the economy cabin. These have disappeared due to the space being used for additional baggage, but can be amazingly useful in providing comfort for your lower back. Even just elevating your feet off the floor about 5″ can alter your lower back position and reduce the pressure under your thighs for DVT and help keep the ankle swelling fun to a minimum. I have a teeny one I bought in China and it will be coming with me on every long haul flight from now on… It’s lightweight and cheap and made a huge difference. 

  5) Good earplugs are worth their weight in gold. There is very little worse than having to hear the goings on in the cabin when you are already trying to shut out the screaming pain that your body is throwing at you. I have some custom made earplugs and after this flight and that unhappy little croupy baby, I will never leave home without them again. There are plenty of good audiologists around the place who can take a mould of your ear and make some for you – or you tend to find these guys are gun/shooting shows or motorbike shows. Get some they’re great.

  6) Lesson learned – avoid the bulkhead… both the immoveable arm rests and the inevitable screaming children being seated close to the the bassinets provided there. Choose a seat in the quietest part of the plane, usually the back and also the area most likely to have empty seats if the flight is not full.

7) Roll up your airline blankie to use as a quick and dirty lumbar support. I don’t know for whom airline seats are designed to be most comfortable, but I have a sneaking suspicion it’s more like 6′ tall business men rather than 5′ tall chronic pain sufferers. The back support, if there is any, will inevitably be ill placed for someone not of ‘average height’ so get creative with ways to help you hold better posture for long periods of time.

8) Even when you are desperate to sleep, get up and move about the cabin as much as possible. Stand outside the galley or bathroom areas and do a full yoga workout if it is going to keep you from seizing up in pain. I have a handful of exercises that I get up and do about every hour – particularly things to stretch and limber up my lower back and my neck and shoulders. I have no idea how I would pull up without doing these and have no desire to find out just how bad it could get.

9) When offered water, take two. Being dehydrated on long haul flights is inevitable, so drink as much water as possible. Also, there is nothing worse than looking for flight stewards when everyone is supposed to be asleep, and you are hunting for water to take more drugs and there’s no one to be found… I think they all go off for a card game or something when the paxs are mostly all asleep. Sometime there are water filling stations near the galleys – but you just know every bastard has been refilling their used bottles with it after drinking directly from the same bottle. Yuk.

10) Where budget allows – upgrade if you think it will help. I would have flown premium economy. I could have flown premium economy and yes, I might have been more comfortable. But I just can’t get past the extra $2k or so – it is a lot of money towards my next trip. And besides, I know the nature of neuropathic pain means I am going to have a terrible painful time no matter where I sit, so it’s only a matter of perhaps being able to grab a bit more sleep. Sleep is good, it helps me ignore being in pain a bit easier… but is it $2k easier? Probably not. I’m going to be in stupid unbearable amounts of pain anyway, so I feel I can’t honestly justify the additional money. There’s no arriving feeling fresh as a daisy when you’re a pain sufferer anyway.

So that’s it – arrived in London, painful flight over. Got met at the airport by a dear friend who I was so grateful to see – being met and not having to immediately figure out a new transport system while you’re still out of your gourd on your last helping of Valium is invaluable. I am eternally grateful to Stephola for coming out to meet me. Then it was check into my Airbnb place and straight off to the pub to acclimate to local time lickety split!  

It’s a Tuesday.

One of the things that amazes me most about being in chronic pain is how on earth do I manage to stay asleep through the pain signals my brain is receiving, right up until the moment when consciousness returns and the first thing I notice is that my inescapable pain filled body is still there, still doing its thing?  How do I sleep through that at all?

I woke up this morning and did my usual ‘body check’.  Tension headache from Sunday?  Yep, still here – no doubt the result of sitting on an uncomfortable barstool for a few hours on Saturday night.  Anything unusual hurting?  Yes, my right should blade is in agony, and I don’t use that word lightly. I don’t remember doing anything odd or strange yesterday that would cause a flare up of pain in my shoulder blade area, but it is certainly talking to me this morning, loud and clear. I sort of lever/roll myself out of bed, my neck, back, hips and shoulders all sort of going ‘snap, crackle, pop’ as the stiffness of sleeping so dead still (yay Valium) works itself out, and put my feet on the floor.  My feet hurt, though no more than usual –  it’s a shooting sort of pain.  I’ve obviously been clenching my toes in my sleep again which causes tension through the arches of my foot and up my shins.  A quick stretch and a rub of my hands followed by a fumbled attempt to pick up my phone to check the time, also indicates that I have been doing my best ineffectual little fists of rage all night too, so my hands are a bit, ‘best not boil the kettle this early, lest one tip hot water all over oneself’ unreliable to say the least.  My teeth are feeling pretty icky lately – my ‘barometer’ tooth, the right upper lateral incisor, feels like it’s been moving, which of course it hasn’t – it’s just had my bottom lateral incisor pushing against it all night as I have been subconsciously clenching my teeth against pain all night. The muscles which run from the back of my jaw up to my cheekbones feel tight and horrible, not spongy and malleable like they’re supposed to, and when I open my mouth to yawn, it feels like of an old rubber band being overstretched that just might snap… cra-cra-crack-crack.

I stumble to the bathroom to pee and am screwing up my face against the pain in my hips as they complain about the very ordinary effort of being upright.  Bending down to lift up the toilet seat sends a shooting pain up the left side of my neck, again.  I go to pee and have to wait a moment… like everything else in my entire body, my entire pelvic floor also tenses up when I sleep and I have to consciously will it to relax in order to be able to go.  I stand up and face the handbasin to wash my hands, the cold water actually feels good – the colder the better, at least it’s not a pain sensation.  At this point I usually avoid looking in the mirror – I am fairly confident that I look as bad as I feel, and I just don’t really want to see the evidence of my pain all over my face, I especially hate seeing it in my eyes, as I know that means other people can see it too.  I wash my hands and lean over the basin (more cracking rubber band sensations in my lower back) to splash cold water on my face.  A few facefuls of bracing cold water and I feel like I’m trying to flush away the Valium induced drug hang over – it doesn’t really work, but I do it habitually anyway.

Back to my room and I pick up pants and a jumper that I carefully left on the end of my bed… god knows if they get kicked off and end up on the floor, I’m kinda fucked when it comes to picking them up.  Hang onto the bed end, one leg in, the other leg in, hips are going – ‘what the hell do you think you doing?’ Yes, it is rather adventurous to think one should be able to put on pants without an increase in pain.  And yay, I notice I am clenching my teeth some more from the effort of ignoring Putting On Pants Pain.  Stop doing that!  I do some jaw exercises as I get my jumper on with the minimal amount of lifting my arms over my head – ever wondered why so many of my jumpers have zippers up the front… wonder no more. They’re definitely not purchased to show off my cleavage to best advantage.  Next big obstacle… the bedroom door knob.  Slippery little sucker; it often gives me grief.

Walk to the kitchen… all 15 paces of it, thinking, ‘Oh you little shit, right shoulder blade, what the hell have I done to you?’  I grab a heatpack and put it in the microwave, wishing for not the first time that the microwave wasn’t in one of those face height (well, for someone of only 5′ in height, it’s at face height) wall wells, and thinking I’d be better off it if was on the bench.  The heatpack must weigh about 2kgs if that, but when I want to pick it up above my shoulder in the morning, I’m not happy about the extra 12″ higher that I have to lift it from bench height to face height.  I punch the buttons with seemingly unwarranted ill humour towards the appliance, and wait for the comforting noise of the microwave doing it’s heating things up, thing.

I turn around and lean over on the centre island bench with my forearms laying flat and my forehead resting on my arms… gently stretching out my lower back and trying to dissuade it from screaming at me.  I usually find myself staying in that position for a full 2 mins and 25 secs, shifting my weight from leg to leg as I persuade my hips to move even a little bit without pain.  I lift my head up, usually just in time before the microwave does it’s godawful and annoying, ‘beep beep beep’ schtick – my internal timer for 2:30min periods is pretty good, after hundreds and hundreds of similar waits for a heatpack to warm up.  I grab the heatpack out, still in a drug fucked haze and walk away from the microwave -usually having forgot to press the cancel button… the 2 or 3 seconds I have left on the microwave timer will annoy me later, but I’m not compis mentis enough to deal with that just yet.

I stumble to the living room and push a puppy out of the way – sorry puppy, no cuddles for you until I get this roaring fucking nightmare in my right shoulder blade to shut the fuck up a bit… though in all fairness, this morning it’s a right shoulder blade, tomorrow it could be the back of my hips, or the top of my neck or the middle of my back or wherever the fuck the tension and pain wanted to ‘settle’ for the night.  I sit down and position the heatpack behind me and wait… ten, nine, eight, seven, six, five, four, three, two, one, a half, a quarter, *sob* oh, fucking hurry up.  Finally, there it is.  Heat.  Heat sensations radiating through my spine instead of pain sensations.  I know it’s not actually taking the pain away – not really.  It’s just tricking the nerve endings into sending some different signal other than a pain signal to my brain.  Okay puppy, you can come for a cuddle now.  My back SHOULD be fine.  I SHOULD not be in pain.  But my nervous system is shot to shit after four nasty car accidents and my nerves send pain signals to my brain 24/7.

So what’s the point?  The whole morning heatpack ritual isn’t actually fixing anything so why am I doing it?  It’s pretty simple really.  When you’re tired, it’s awfully hard to ignore being in pain.  When you’re drowsy, or in my case completely drug fucked, it’s pretty hard to push those thoughts and sensations of pain to the back of your mind in order to be able to think about anything else.  In the mornings, because I am tired and drowsy, the pain is overwhelming.  Once I wake up a bit and can master my consciousness somewhat, I am able to apply the energy necessary to compartmentalise the pain to some place in the back of my head to be able to engage with the world in some hopefully useful capacity.  It doesn’t mean the pain is gone – it’s not – I’ve just learned to ignore it to a certain extent.  It’s why sleep, even the drug induced Valium unconsciousness that I call sleep, is so important.  Without it, my ability to ignore or manage my pain is significantly diminished.

I’d like to be able to say that today was a bad day.  If it was, maybe that would make this whole situation more bearable. I would like to be able to say that today my pain was particularly bad and that I went through this bullshit routine to get over this one, particularly  bad day, but I can’t – for me, this is just a Tuesday.

chronic pain 2