Malinger – to feign illness, in order to shirk one’s duty or avoid work.

Posted on November 29, 2013 by borysSNORC

“I know what people in pain look like… and she’s definitely not in pain.” said the stupidest, most ignorant fucking prick this side of the Black Stump, to my friend…

What gives someone the audacity, sheer gall, to meet me for a few hours, pass judgement on my body, my pain and my inescapable daily experience of it, and then decide that I’m some sort of malingerer? What sort of arrogant wanker thinks he has the right to look into my mind, my heart, my body, and decide what I do or do not feel? What sort of smug, pompous, self involved, vainglorious little arse of a man (who, by the way, is not in possession of any sort of medical degree, extensive nursing training or engaged in the healthcare professions), gets to decide that I am LYING about MY pain?

Many of you know me pretty well… you’ve seen me at medieval events wearing heavy and uncomfortable clothing doing things that I shouldn’t be doing, you’ve seen me laughing and being social at parties pretending everything is fine, you’ve seen me (like this fucktard has) standing around all day in pain teaching people to shoot. You’ve seen me helping out where ever I am physically able, whilst simultaneously acknowledging and yet attempting to ignore the limitations of my body.

Some of you will know that I’m wearing bright pink today, or purple, or red, so that hopefully the people around me won’t notice the pained look in my eyes. Some of you will know that the awkward or slightly limping gait with which I am walking is from sitting too long, or the strained expressions as I execute the extremely difficult manoeuvre of getting out of a chair is from nerves shooting pain signals around my body. Some of you will know that I’ve constantly got more pharmaceuticals in my system than should be allowed for short blondes, or for operating machinery or for consuming alcohol. Some of you will know these things but then will politely refrain from mentioning it, because you know that I really don’t want to talk about it. Some of you will know that I am not really the surly bitch that my facial expressions might indicate, that it is just the strain of keeping my shit to myself all the time.

What very few of you know is just how much fucking effort it takes to keep myself upright and functioning, each and every day. Very few of you know that I have not slept for more than five or six hours any night for the last six years. Very few of you know that I am in so much pain that I take freezing cold showers in the middle of the night, to feel something other than pain. Very few of you know that I am habitually just one tiny unexpected inconvenience from tears, as I constantly channel all my energy into ignoring my pain, leaving very little energy for dealing with ‘other people’s shit’. Very few of you know how many times I have wanted to step off the planet and cease to live this painful existence. Very few of you know how dark the dark times really are, and how little real joy there is in a life filled with pain with no hope of reprieve.

What this self centred, egotistical, callous, and downright malicious cretin of a man, who made this hideously inappropriate and ignorant comment about ME, after barely four hours acquaintance, will NEVER know is just how desperately I want to march right up to him, right now, and tell him like it is. Tell him how horrid it is living in this traitorous body that gives me nothing but pain and heartache. Tell him what it is like to be constantly medicated to the point where your own recollections of the days events are notoriously unreliable. Tell him what it is like to be absolutely bone weary exhausted and yet be unable to sleep because the pain keeps you awake. Tell him what it is like to be afraid of picking up a fucking electric jug in the kitchen or reach down to pet the puppy, without steeling yourself against potentially painful spasms that could last all day. Tell him what it is like to have your first and foremost thought of every minute of every day be how much pain your body is experiencing.

Instead, I am just sitting here, asking myself why the fuck do I even go to such extraordinary efforts and measures to keep my chronically painful self TO MYSELF, if intellectually challenged individuals like this ignorant simpleton are going to judge me like this?

Just because I am not crying does not mean I am not in pain.
Just because I am not wearing a cast or a brace, does not mean I am not hurting.
Just because I am forcing a smile onto my face does not mean I am at ease.
Just because I am laughing and participating does not mean my body is pain free.

What it does mean, you narcissistic, brain dead, self-important, insensitive, chicken fucking dimwit… is that I have had over twenty years experience in dealing with MY pain. And I choose not to inflict MY pain on everyone else’s life by constantly forcing others to acknowledge its existence. Just because MY body and MY life is full of pain – day in and day out – doesn’t mean that the lives of those around me need be constantly likewise reminded and affected by MY pain. The fact that I don’t seem like I am in pain is a sign of MY achievements, in managing and mitigating MY painful circumstances, hiding MY no-longer obvious distress at being in pain, managing to attempt going about MY life as best I can.

What you can really take away from this, is that MY PAIN HAS NOTHING TO DO WITH YOU, and I work my arse off to make sure it stays that way.

SO STOP BEING A FUCKING CUNT AND MIND YOUR OWN BUSINESS.

No use crying…

Posted on August 28, 2013 by borysSNORC

Okay, here’s a weirdness.

I’ve had four shitty car accidents. And yes when I refer to them they are always ‘shitty’ car accidents, not horrific, not tragic, not destructive, not soul destroying, not back breaking, not any another sort of adjective… always ‘shitty’. Don’t know why on that one, except none of them were my fault and I feel like that is just my all round shit luck, and complete lack of Parking Fairy, that is to blame for it all.

Anyway, with four shitty accidents in my past you’d think that would give me four shitty days of the year to lament my shitty broken body and my shitty chronic pain situation – the 28th August, the 24th of December, the 21st of September and the 17th of November. But for some reason it doesn’t. Not a year has gone by since 1991 that I haven’t mentally had a sad-on, on the 28th of August. Each year, it goes through my head… One year of being in pain everyday. Five years of being in pain everyday. Ten years of being in pain everyday. Fifteen years of being in pain everyday. Twenty years of being in pain every fucking day. And it’s not just the milestone years either (though the twenty year thing was pretty hard to deal with, as it officially meant I had more years in pain than I had had years, pain free), it’s every year – thirteen years, eighteen years, twenty-two years – today!

But for reasons I truly can’t explain it’s only the 28th of August and the 19th of November that I feel myself spending the day gritting my teeth in anger and frustration over the persistent and pervasive pain I’ve been forced to endure and over the undeniable and unavoidable fact that life is not fucking fair! I don’t know why the other two dates don’t make me twitch, especially since the December 24th one is the one that came closest to, you know… seeing me end up dead in a ditch. It makes no sense.

Blargh. It’s out there for another year. Happy Painful Anniversary to me… again.

Why can’t I let go?

Posted on August 26, 2013 by borysSNORC

I’ve written many times about my IVF experiences and my feelings around having more children and my complete inability to let it go and accept my life the way it is. I’ve also written many times about my car accidents and my chronic pain and how I feel out of control and powerless, angry, resentful and often just plain useless. I’ve written about my deep rooted hatred for my own ‘traitorous’ body, which I feel has been stopping me from getting what I want and doing what I want, since the moment I hit adulthood. Most people only get a glimpse of the all encompassing sense of loss that I carry around with me all day every day, because while I know I could be a a cranky, short tempered bitch ALL THE TIME, I work really hard to keep most of my crap to myself.

I went to a personal development seminar this weekend… I wasn’t sure what I was going to get out of it, I only knew that having been out of the workplace for over ten years meant I hadn’t had any formal development, professional or personal, for a very long time. Sure I’ve been psychobabbled from here to eternity and back by a plethora or counsellors and psychologists and psychiatrists, and I know how to talk the talk and walk the walk in the consulting room. But none of them have ever been able to help me… they sit and talked me in circles, gave me drugs, gave me mindfulness exercises, attempted to recondition or hypnotise me or fuck knows what else. None of them have been able to fix my back pain. None of them have been able to fix my infertility. And none of them have been able to make me feel happy about being stuck in this shitty body and I don’t know why. This weekend I learned that I don’t let go of ‘stuff’.

I’m not talking about grudges against others here – people piss me off, or disrespect me or the people I love? I just cut them out of my life end of story. I don’t need any more negativity in my life – I’m pretty good at generating plenty of negativity of my own without accepting it from other people, thank you very much. And I don’t have the time, inclination or energy to waste on hating people or holding grudges (if it’s a grudge holding that can occur without the requirement to invest energy or time… that might be a different matter! 😉 ). So no, it’s not others that I’m talking about here – it’s ME. Why can’t I let go and learn to accept my limitations, accept my life, and accept my situation, and count my goddamn fucking blessings for a change instead of constantly wanting things to be different, or other than they are. Why can’t I just cherish my little family without looking at us and thinking ‘I want more’?.

I usually think of ‘personal development’ as being a bit too new agey, or a bit too touchy feely or a bit too self indulgent – so I’m not normally one to navel gaze or drink the KoolAid and get sucked into these things. I’ve been told in the past that I don’t have a ‘suggestive personality’ which I understand means I’m not easily led, not easily hypnotized, not readily reconditioned… alternately, you could just call it bloody stubborn. So I tried to go into this thing with an open mind. I reckon we were barely an hour in when the presenter, Nicky, started talking about Health and how it affects your entire life and if you have your health then you’re already well on your way to personal happiness. I’m sure without even really thinking about it, she trotted out a we need to look after our bodies, because ‘your body is a temple’ as cliched as it sounds, it is what will stick in people’s heads. At which point I interrupted asking ‘What if your temple is broken?’

Which started a discussion on how the body repairs itself and you can heal. I come back with ‘there are some things the body can’t or won’t recover from’… which led into her dragging my chronic back pain and IVF story out of me in front of 40 odd (and fuck me, but some of them were really odd!) strangers. Nicky suggests we have a chat during the break… So we do. And I got slapped upside the head like no damn psych has ever done to me before. She asked me questions that I couldn’t answer:

Who would you be if you weren’t this person in pain?
Why can’t you be happy with your family as it is?
What’s so bad with having an only child? He doesn’t know any different.
What belief systems am you hanging on to?

She flat out told me I have suffered an awful lot of loss in my life (Yes, yes I have heard this from soooo many therapists in the past so I thought I knew what was coming) – loss of physical strength, loss of control over my body, loss of freedom, loss of social identity, loss of career and work opportunities, loss children, loss of my identity as a woman, loss of my dreams… so much loss, oh you poor kitten. And here is where she smacked me – there’s been a metric fuckton of loss, but no actual grief. She looked at me and cut me to the quick… ‘You have never allowed yourself to really FEEL what has happened to you. You’ve spent years being ‘strong’ and sucking it up and soldiering on, and you’re still doing it. As a result, you’ve never really ALLOWED yourself to grieve any of these losses. And if you don’t grieve your losses, how can you move on? You’re stuck in your anger and resentment and frustration at this enormous amount of loss in your life and you’ve never let yourself really feel it.’

I have often jokingly said that I don’t know how to have the nervous breakdown I feel I so richly deserve! Turns out I might be right. I don’t know how to let myself just feel all the shit that has happened. I never really grieved my physical incapacities, I have just spent two decades gritting my teeth and fighting them. I never really grieved any of my five miscarriages, I barely acknowledged they happened and moved on – I certainly never allowed myself to think of them as five little babies that didn’t survive (in fact, I remember seeing a woman once with some three little children charms hanging around her neck and commented on them – she said they were her ‘angels’, her three little babies that didn’t make it, which at the time I thought was a fucking creepy thing to be carrying around with your everyday, but maybe it’s healthy?). I never even allowed myself to grieve my disappointments with each failed IVF cycle… the longer we were at it, the less and less my expressions of disappointment would be. It got to the point where I’d have another failed cycle and wouldn’t even tell Mr K about it in person, I’d just leave the (-)ve stick in the bathroom for him to see when he got up and go about my day. He’d give me a cuddle in the kitchen and say ‘I’m sorry.’ and we’d keep on going… with over forty failed cycles that were sending us broke, who has the fucking energy to grieve every one of them? Truth be told, I don’t think I grieved for any of them – I didn’t allow myself to think of them as little babies that didn’t make it, it was just another failed treatment.

I walked away from the deeply upset. I had reluctantly acknowledged an awful truth. That without my painful persona that I have obviously been living for decades, I am nothing – I have built no other identity for myself. I don’t know who I am, or who I would be if I wasn’t in pain all day. I have made my pain and infertility my entire life story. It’s who I am – an infertile, chronic pain sufferer. And I haven’t been able to move past it to define myself any further. It’s not like I have chosen to wallow in in, in fact it’s the complete opposite. I spend most of my energy trying to ignore it… and trying not to acknowledge it, trying not to let people in – because being in here sucks arse! I don’t want people to know how fucking horrible and hollow I feel deep down inside. I am just one tightly wound, short blonde bundle of anger, resentment, frustration and jealousy… and that’s all there is in here! I don’t love myself or my body. I don’t love my life or my situation – which is completely shit because I have so much to be grateful for. I have spent my life being angry and focused on all the negative shit surrounding me, and it has very likely hindered me from truly enjoying the good and positive things in my life.

I came home after the seminar and spent the night trying to figure out WHY? Why can’t I fully acknowledge and grieve the losses in my life? How come I don’t know HOW to grieve? So other more recognizable and common senses of loss came to the fore: My father’s death. I didn’t really grieve that loss either – I went off to training for a new job the very day after he passed away convinced that is what he would want me to do. My grandmother’s death. Went to the funeral, I got a speeding ticket while playing loud music and not paying attention to the road conditions on the way home – nope, no real grief there. The death of three of my cousins on Anzac Day in 1988 – still makes me sad, but did I actually grieve for them when they drowned? Not really. But then I poked around in that for a bit…

I didn’t grieve for the loss of my three cousins as an impressionable young teenager because I wasn’t ALLOWED to. If you read the link above about how they died, you’ll see I gloss over some very important facts. Yes, I mentioned that on Anzac Day in 1988 that my cousins had drowned as a result of the huge floods that were sweeping western Queensland at the time and the poor little kids didn’t know how to swim. I mentioned that the whole thing didn’t seem ‘real’ to me until I saw it in the newspaper the following day at the school library. What I don’t mention is that I became really emotionally upset by the death of these beautiful little children… the Librarian called for the Principal and that school sent me home for the day. So what?

Well, later that evening I got in trouble. My father sat me down and told me that I hardly ever saw these kids but a few times each year, that I barely even knew these kids because they were so young and had no cause to be feeling all upset at their death and that there definitely wasn’t any cause for missing school for the day. So my father, whose good opinion I respected and actively courted my entire life, taught me that when bad things happen we don’t feel them, we suck them up, keep working and move on. I always thought he was just very practical and pragmatic and not very demonstrative and that wasn’t a bad way to be. But now I think he taught me that grieving loss, any loss, is unacceptable. I’m sure that isn’t what he wanted to teach me – to bottle up my emotions and never allow myself to ‘feel’ anything… but I am starting to think that is the lesson that I came away with it from. I have never really grieved anything since. Not the my miscarriages, not the death of my gorgeous little dog companion Caesar who was my constant friend for nearly 15 years, not even my own father’s death! I don’t know how to grieve. He taught me it was self indulgent to do so and now I seriously don’t know how to.

So now I feel like I’m blocked, or bogged down or drowning in my inability to let myself feel things. Like I need to somehow truly grieve the losses in my past in some tangible, physical or cathartic way, that allows me to actually ‘feel’ the horrible things that have happened and hopefully allows me to finally let go of some or all of the emotional baggage, rather than bottling it all up and carrying it around with me everyday.

Only problem is… I have no idea how that is accomplished.

The Road to Hell is Paved with Good Intentions

Posted on July 20, 2013 by borysSNORC

After three days completely over doing it in Disneyland, I found myself having to take the day off. And by off, I mean sitting in my hotel room on a heatpack, drugged off my brain and trying to figure out what I was going to do to ameliorate the anticipated ongoing flare ups that the rest of my itinerary had in store for me.

The Small Child was with the long suffering grandparents at Universal Studios for the day so I sort of got to fall apart in peace… I don’t like him thinking of me as a sick person, or an
incapable person or worse as disabled or an invalid. But the truth of the matter is that all these things are fitting descriptions for people like me with chronic pain conditions and the associate limitations. 🙁

I know exactly why I did it. We were at Disneyland, 15,000kms from home, this is likely to be the only time he ever gets to do Disneyland as a child (I’m certainly not coming back any time soon) and I wanted him to make the most of it. We had only just managed to get him over his longstanding fear of roller coasters and I thought between us four adults we’d be able to keep up with him… but I wasn’t counting on being with two that are scared of heights and one that doesn’t like roller coasters much at all.

So next thing I knew, every time the Small Child said he wanted to go again; there I was on the damn thing again knowing full well how much pain it was causing. Sure it was fun at the time, and I even managed to put on a creditable face of having a good time. After all, I’ve had twenty-two years practice in pretending like all is well with the world and you’d be surprised what you can keep to yourself until you have time to fall into a tearful puddle of painful jangling nerves in private later.

It might have been ill advised, it might have been foolhardy even, but my heart was in the right place. I really wanted to make sure my son had a memorable time at the theme park with his Mum, and didn’t want him going home disappointed or bored… so I did everything I could to make sure that happened. But jesus titty fucking Christ I am totally paying for it today. 🙁

How to: Stay awake on long drives

Posted on July 14, 2013 by borysSNORC

Yesterday, I got up at 2am and drove to San Francisco via a side stop in LAX to pick up the Small Child. Which is pretty much like getting up and driving non-stop to Sydney, but putting a massive stressful big spaghetti junction of highways somewhere around Coffs Harbour which was really difficult to navigate and on which everyone was speeding. Now this in itself mightn’t be so bad… but we went to a show the night before which ran from 10pm to midnight.

By the time we got back to our hotel, finalized the packing we started earlier and had a shower, it meant that I was going to bed at 12:50am and setting an alarm for 1:45am hoping for a cat nap well any type of fucking nap really.

No such luck. Just lay there waiting for the alarm to go off. Hit the road in full darkness and headed out of Las Vegas. Unbelievable how much traffic was on the highway all the was to LA given it was 2am on a Saturday morning. Managed to pick up the Not So Small Child without incident after a 4.bit hour drive, and set Sondra to take us to San Francisco.

After much more white knuckled swearing and cursing at the freeway system we eventually popped out of the city and were speeding through agricultural countryside going north. By now it was about 8am, and I was starting to get tired. So I’m having a Red Bull for breakfast (fuck that shit tastes foul), and trying to stay awake knowing there’s about 4-5 hours more driving ahead.

The countryside was so dry and arid it’s amazing anything was growing there at all. Every now and again you’d go through a green section near an irrigation channel that was obviously getting access to water. But every few kilometers or so, I was seeing signs that said ‘Say No to Congress Created Dust Bowl!’ And I have no real idea about but could make a pretty good guess. Nonetheless about 40% of vehicles on this highest were carrying produce – tomatoes, lemons, onions, rock melons and so on. None of which is overly exciting as you’re hurtling along with two sleeping passengers.

So I’m driving with Adele for company and slowly but surely turning that music volume up and up (frog in a boiling pot style) to keep me awake but not disturb them sleeping. I was turning the air con up much higher than needed and kept flicking the vents so one side of me would get really cold and then the other. I was shuffling in my seat and constantly pfaffing with the cruise control to keep my mind alert. But my most effective tool in keeping awake on this ridiculously long and solitary drive was turning my head.

Now I’m pretty sure this won’t work for everyone but I’d been in Vegas on too soft beds for four nights and no access to heat packs so my back pain was in full gear before I even left. My neck and shoulder muscles were as stiff and sore as if I’d spent the week painting the house, not playing tourist in one of the worlds biggest playgrounds. So I was at the point where turning my head in any direction, putting my chin down towards my chest, looking left of right, leaning it over towards my shoulders – any movement really – was causing sharp pain. Which meant whenever I felt myself getting drowsy all I had to do was lean my head over and I had sharp pain jolt me alert again. :S

If I felt really bad, I used my air con frozen hands and just poked myself in the neck or shoulder muscles a bit and ow, ow, ow, fuckity ow, I was wide awake again. We made it safely to San Francisco… but I one big mess of absolutely shattered right now.