So… you’d think being a chronic pain sufferer would make you particularly good at dealing with pain. Recognising when it’s normal and maybe… importantly! … recognising when it’s not.
But alas, this is rarely the case in my god awful, totally shit and painful lived experience.
The last few months I’ve had ‘a bit of trouble with my knees’, as I’ve been so euphemistically phrasing the excessive increase in pain I’ve been experiencing since April.
Here’s a rough timeline:
01 April: you have the COVIDs! Yay, April Fools MF!
Mid-April: go to Rowany Festival and notice that my feet and ankles are hurting more than ‘normal’; assume it’s fibromyalgia related and start walking a little tenderly but basically… ignore it.
Late-April: head to Hobart for a week and notice it’s feet, ankles and knees now, but assume it’s fibro related and well, ignore it.
Early May: head to Canberra for step down, still with increased lower limb pain, assume it’s still fibro related or maybe I twisted something wandering around at Festival in the dark and you know, continue to ignore it.
Mid-May: fly to Darwin take The Ghan to Adelaide, notice a marked increase in knee pain as we tootle around the Barossa; assume it’s from walking on the rocking train, so… just you know, ignore it.
Late May: go in for bilateral carpel tunnel release surgery (which as a minor painful annoyance, I’ve been putting off since 1994), rest up at home aware I still have foot, ankle and knee pain but it’s somewhat eclipsed by hand/wrist pain and partially overcome by post op drugs, making it easier to well… ignore it.
Early June: plodding along with hand and wrist and foot and knee pain but mostly just stubbornly ignore it.
Late June: feeling pretty good all things considered, hand surgery well on the mend but knees still a bit ick; but excitingly I’m off to London, so excess pain? Ignore it!
Early July: hanging in the village, touristing around Hever Castle and Buckinghamshire: Oxford, West Wycombe, Roman place??? Places to go, things to see, pain – yep, getting worse, but just start avoiding stairs as much as possible and ignore it.
Mid-July: head to Lyon to see Rammstein (fuck yeah!) via high speed train and notice standing in queues and walking very far is getting decidedly more painful, but meh, ignore it.
Late July: after two weeks more of traipsing and touristing around the Balkans seeing castles and clock towers and medieval towns, and museums and waterfalls and all good things – knee pain is now keeping me awake at night and causing serious difficulty navigating stairs and cobblestone street, but you know, so much to see and do; so keep walking 5-8kms a day and hope I’m not slowing everyone down so continue to ignore it!
Early August: get back to Australia and crash in a heap. Eventually think… “Yanno, maybe I should go to the physio and see if they can tell me what’s going on.“ Light physio, exercises and a suggestion to take it easy… but largely keep ignoring it.
Mid-August: take a deep breath, recognise this knee and ankle nonsense isn’t going away, so off to the GP (armed with a determination NOT to be back on prednisone) and end up with referrals to get X-Rays and MRIs… le sigh, no more ignoring it.
Result: Bitch, your knees are proper fucked!
‘Fucked’ being the medical term for what happens when you keep walking on seriously inflamed joints resulting in damaged and torn meniscuses (sp?). Two tears in the left knee and one ‘flap’ tear in the right. Well, I guess that explains the acute and excessive pain situation. 😐
So what’s next? Try and find an orthopaedic surgeon apparently because both knees now require keyhole surgery to repair the tears… and I have no one to blame but myself.
This totally sucks. I’ve spent a lifetime training myself to ignore pain and just keep going… and ignoring nerve pain rarely has physical knock ons like this. I just smile, say ‘Good thanks’ and stubbornly keep hiding my pain and keep plodding on. So I did that… cos that’s what I do. I try hard to not let it stop me doing the things I want to do and I work even harder to try and minimise how my pain and limitations impacts other people – especially when it comes to slowing people down or missing things when travelling.
So now I’m on four waiting lists for four different knee surgeons trying to get an appointment in a timely fashion because now that I’ve stopped moving – I can’t fucking walk barely 10-20m at all. The pain is beyond bearing*.
And here’s me thinking 2020 sucked arse.
*knowing me I would find a way keep grinning and bearing it, if there was a fabulous gothic cathedral at the end of any nearby walk.
Up bright and early for a 0700 breakfast so we can leave the hotel at 0830. Several of the group don’t seem to get the memo though and we leave at 0915. It’s barely my third day with these people and I’m losing a little patience for how self absorbed a couple of them are.
We have a two hour drive to get to a little town called, Sigsioara. The town has about 28,000 people living here and it is a popular tourist stop for the well preserved old town, which is a UNESCO world heritage listed area. First stop was the 13th centrum Clock Tower which is now a small history museum. The Clock Tower is the most obvious town landmark being 64m high and quite pretty.
I did however take an opportunity to pop into the local ‘Medieval Armour Musuem’ a term which sadly must be used loosely because many of the objects on display in the Museum were quite late – 17th to 19th century swords and firearms. There were some cool breast plates though and some enormous muskets.
That pink thing on the left is my Beretta baseball cap… I can’t imagine any soldier carrying this thing about.
From Sigsioara we made our way to Targu Mures. Turns out that Targu Mures isn’t a partially popular tourist spot and the only reason it was on our itinerary was so we could learn about the religious tensions that were happening thirty years ago by showing us the Citadel of the town and the Culture Square which encompasses a Catholic Church, an the Ascension Cathedral, which is an Eastern Orthodox Church and the Quo Ante Jewish Synagogue.
We were all a bit confused about it – even our ‘expert’ guide, Gorgy who had never been there before. The driver, Nick got us lost, driving around in circles several times (we went past one statue three times) before dropping us off near a school so we could find the citadel on foot. Not at all impressed by that.
Then it turns out that the Catholic Church (below) and the synagogue are not open to the public anyway, so we only got to go into the Eastern Orthodox Church..
Still, it is a very beautiful church and reminds me very much of orthodox churches I went into in Moscow and St Petersburg, and I’m glad one of the buildings on our stop in Targu Mures was open to the public. We had had a very rushed day today, what with one thing and another (getting lost, people ordering lunch and then their meals taking forever to arrive, and people just not listening to instructions and skiving off), so we were kinda glad to be having a 20 min break to take a moment to soak in the atmosphere here.
When the rest of the group joined us, we jogged off up the road to the Mayor’s house and to wait for Nick, the Boos Driver.
This is the Mayor’s residence, right next door to the Mayoral offices, and it seems the mayor who built it in the early 1900s was heavily into Italian/Latin architecture styles – which ends up in a weird mishmash of an Italian villa with a Romanian looking roof and decoration… I have no idea why Romulus and Remus are prominently out front – it’s a mystery?! And here we remained while we waited for The Annoying American on our tour to finally deign to meet up with the group. Yes, there’s three American’s on our tour, and two of them are delightful – thoughtful, engaging and considerate beautiful humans… and one horrifically entitled, self involved fucking clueless inconsiderate c&%t!!! This person had lost her sunglasses the night before – left them on a table at a Greek restaurant in Brasov, and had been whining all fucking day about not being able to get hold of them to find them for her, ‘My gawd, they’re like, $400 sunglasses, like they should at least be able to find them and like, send them to me in Bucharest.’ When she wasn’t complaining to us about her lost sunglasses, she was skiving away from group trying to find some ‘decent’ sunglasses to buy. So, we had been playing ‘Oh-FFS-Where’s-The-Annoying-American’ all day. Now we were all hurried up and getting ready to leave and she is nowhere to be found. Not answering messages on the WhatsApp group chat and eventually, she replies saying she’s buying sunnies and found ‘gold on special’ (WTF?) and will be there soon. So the ten of us stand around on the footpath outside the Mayor’s house cursing her and waiting for her to turn up.
She eventually shows up and she’s all smiles and happy is wearing her new sunnies “Yo-yo guys, Bul-garee in the house!” … took me a few moments to realise that somehow in this dinky little town she found a department store selling BVLGARI designer sunglasses. She was also showing around the ‘gold’ she’d found and turns out that was a dainty gold necklace with an Irish harp charm on it??? Urgh, we’ve been rolling our eyes about the unbelievable selfish and boastful nature of this woman for the last four days but everyone seems to have comfortably taken to quietly bitching about her behind her back and not addressing the problem.
Which of course meant I was the one confronting her about not being able to leave the group like that and keep us all waiting. Even the tour guide didn’t take her to task. This is the second time in three days that I left her standing agape looking like I’d slapped her.
Urgh… Annoying American finally acquired, so Gorgy called the bus driver and we head off to Cluj-Nepoca. When we get there – we find the Cluj-Nepoca’s Union Square in the middle of evening summer concerts of traditional music and not-so-traditional tunes being played on weird traditional instruments – very loudly! Thanks to Her Nibs being late, we weren’t able to check out some of the buildings around the square that were on the itinerary but we did manage to check out the cathedral very briefly because it was closing at 1900.
The square was full of locals out to enjoy the evening and the noise.The Matthias Corvinus sculpture – you know, the guide didn’t tell me who he was or why there was a statue to him and I didn’t bother supplementing that for a change by googling it myself (which is another recurring theme lately), so this is him, but fucked if I know what he did to be worthy of a huge sculpture in the town square.
Ok, I lied… Fresh to you from Wikipedia: was King of Hungary and Croatia from 1458 to 1490 and after conducting several (presumably successful) military campaigns, he was elected King of Bohemia in 1469, and adopted for himself the title, ‘Duke of Austria’ in 1487. There’s way more to the dude than that, like his lineage etc, but that’s the TL;DR.
St Mikhail’s Church is the second largest church in Transylvania (behind the Black Church from yesterday). The construction was begun in the St JamesChapel (in the back of the church). The money to pay for this was largely collected from indulgence income apparently – man we should go back to the good old days of selling indulgences, only maybe the money could go to building housing for the homeless or something.
Anyway, the first documents relating to the building of the church date back to 1349. There are some fragmented frescoes in the church that make sense with that time period, but they’re pretty dilapidated, covered over and poorly kept. The construction was completed between 1442-1447 apparently, the original tower was built between 1511-1545, but the tower that can be seen now was erected in 1862.
Small evidence of poorly kept frescos… I don’t seem to have taken a photograph of the saints on the wall whose faces were all scratched off when the church was turned over to Lutheran hands in the 16thC.
By this time it is well on 1930 and we are hunting for dinner, along with every other resident of Cluj-Nepoca by the looks of it. We eventually found a restaurant with a vacant table and wouldn’t you know it a place called, ‘Toulouse’ in Romania doesn’t have French or Romania food, but burgers, pizza and pasta. Sigh… there was one oddity worthy of taking note of; in the back of the drinks menu was a cigarette menu and every table had a Dunhill ashtray on it. Yuk. Thankfully there was a decent breeze (blowing the right way for us) and we were able to while away an hour or so over some cheap ciders – $4 bottles of Strongbow.
We leave town to go the hotel about 2130 because of course the Annoying American is late again. We serve up yet another episode of the Blind Leading the Blind as our guide and driver got lost. Again. Seems Nick is using a decade old Tom Tom to navigate us around Romania and Gorgy can’t seem to read Waze properly but here we are in the back of the bus with Google Maps open trying to tell them the hotel is only 200m further up the street when Nick does a three point turn and goes back in the wrong direction only to discover they’re moving further away from the hotel and to do another three point turn and go back the way we were… ugh. We eventually pull up outside a restaurant and the Hotel sign can be seen in the back and I’m like, ‘Hello, according to the map, we need to go to the next driveway.’ Gorgy goes in to check things out, Nick meanwhile is unloading baggage, and when Gorgy comes back, he says ‘We need to go up to the next driveway.’ So we all carry/drag our bags up to the next driveway to get in the hotel.
Such a long day. It’s well and truly 22:30 by the time we got settled into our room and I had no energy to do this so, this was yesterday’s clusterfuck. I’ll get onto today’s clusterfucks in a few moments.
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!
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.
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…
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!
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:
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!