The Intricacies of Pain

Last year, I was organised for Christmas. I had our budget organised, I had my gift list organised, I had our timetable organised. A lot of that timetable was about ensuring we did activities with our two sons (12 and 9), so that their holidays were enjoyable and memorable. Having a disabled mother means that holidays are usually neither. However this year I had on what my husband calls my “determined face”.

So for a month, we did activities as often as my disability would allow me. And then Christmas Eve, we went and picked up my grandmother and brought her back home for a few nights. Christmas Day, we went and picked up my mother in law to stay with us for a week. And Boxing Day (the 26th), we also had my ex-step-father over for a holiday lunch – our “Christmas meal” of the season.

My Nanna left on the 27th, and on the 28th and 29th, I couldn’t walk properly due to my feet feeling as though someone had belted them severely with a hammer. They felt BRUISED!!! Terribly terribly bruised. Every step was agony. One year in high school, a school mate got an apple, and gently tapped it until all the flesh was liquid, though the skin was still together (if memory serves, he then threw it at someone, and it exploded all over them). My feet felt like that apple!!!

For the last two weeks, I’ve done nothing but sleep and watch TV and work on my Bullet Journal. I’ve been too exhausted – both from the heat, and just getting over the Christmas period.

Today, I decided that it was time to get back into it, and take the kids out again. I haven’t left the house in two weeks aside from a trip out for ice cream. Quinn (9) has been itching to go to the beach, and I LOVE the beach, so the beach it was. I tried to get as much sleep as I could last night (managed a whole five hours!!!), and then did some chores this morning from my recliner, then just before our support worker arrived at 3:30pm, we packed our bags and got changed into our swimmers.

And off we went.

We were also going to watch the kids use their scooters, but they decided the beach was far too important, so we went straight there (plus they forgot their sneakers, and only had thongs on). Our support worker (J) took Quinn, Nicky and I down to the water. Nicky needed to go back in short order, so Jess took him while I stayed with Quinn.

We didn’t go out far as Quinn isn’t a strong swimmer, although he’s getting so much better this year, and very quickly too! Being there, in the waves, watching Quinn – the constant beating of water against my legs, ensuring my feet stayed planted so my eyes could stay on my son – it hurt. A lot. It hurt a lot. My feet hurt, my ankles hurt, my hips hurt. My back hurt. Within fifteen minutes, I was bawling my eyes next to J while we watched Quinn play in more shallow water.

I sucked it up, and went back out with the boys (Nicky joined us again for a short time). All up, I think we were in the water about an hour. We did one trip back to the camp we had set up, so I could sit for a few minutes and have a rest.

After the water fun, we went and got ice creams from the corner store across the road. It was a perfect afternoon.

One picture on top of another.  The top half is of a nine year old boy with the surf in the background. The bottom picture is of a twelve year old boy on a picnic blanket on the sand.

We came back home, and I got the boys into the shower to wash their hair. Then I had a shower and washed my own. By this time, my feet were killing me. I was standing on one foot to give one a rest for a few seconds, and then swapping over. Thought even this wasn’t working very well.

I stumbled out of the shower, and BJ helped me get dressed. I waddled to my recliner and sat down.


Holy fucking hell, but my feet swore at me!!! As soon as I put them up, they just swore at me! They felt like someone had stabbed every square millimetre of them. And then my hips got in on the action, same deal. And then my back. It was all stabbing and hot and it all just hurt so much all at once.

And I screamed and screamed and screamed.

I did grab and pillow and screamed into that, but BJ still got the message. He went and got me pills, and brought them over.

I’ve had this disability for over a decade, and BJ gets me pills four or more times a day. And until today, not once has he ever not asked me first if I wanted them. Tonight, he did not ask – he just went and got them. Suffice it to say – this was one of the worst pains I’ve ever been through.

But now the worst is over (the pain will linger for a while, but you get that), I gotta say, even if it had been a hundred times worse, it still would have been worth it – we had such a great day!!!

Still, for now, I’m not going to be moving very much lol… Nice quiet, very still night, with lots of pain killers, and lots of sleep.

And then we can do this shit again next week!!! 😈<

((So why even write this? Because people see me at the beach today, and they see me next week at the beach, but they don't see me screaming into a pillow in pain when I'm at home. They don't see me sleep for the week in between, but even if they know that I have, they don't get that's it is not a choice – I simply can NOT wake up!!! I don't need pity or anything like that, but people do need to realise what it's like behind the closed doors, because we live in society, and society makes all these decision based on assumptions that are quite often plainly wrong. Such as that if you can go out and do something one day, it means that you can always do that thing. It's not true – some of our bodies just do not work that way. I am SO blessed to still be able to go to the beach, but I pay for it. I pay for it dearly. Words can't accurately describe the pain I went through tonight. "Stabbing pain" doesn't quite cover how I wanted to tear my feet off with my bare hands just 'in case' it might make it better. Some of the people in my life just don't seem to get this part of it all, based on some of their comments lately…)))

Oh crap. Now I need to pee. Which means getting up. I'm really not going to like this…!!! 😬😖

Posted in Personal

Minority Bashing and Exhaustion

So, I was going to say goodbye to this blog this year (or last year now I guess lol) – but I’ve been asked to transform my facebook rant below into a blog post, and it is something that won’t fit into my new blog I’m starting this year… I’ve copied it from my friends page, who copied it from my page, mostly because I love what she wrote about me and I don’t want to lose it to the FB nether… I hope you are all having a great start to this new year, and I look forward to seeing you all over at my new blog just as soon as I recover from Christmas and get my arse into gear…


Astute words from my friend Linda Wemyss, who lives her truth with passion:

“How far we have come – NOT!!!

Not only are we stagnating, or even slipping backwards, in our treatment of black, and indigenous peoples, but we also treat other minorities in a similar fashion.

Imagine constantly seeing advertisements, and hearing people on talk shows, saying that people like you are an abomination – which is what happened when we had the marriage equality survey. Nearly half the country voted to ensure that we did not have equal rights.

Imagine constantly seeing articles and television news and current affair shows that say that you are a burden on the tax payer – which is what happens multiple times a week for poor people. Most of whom have been tax payers.

Imagine being told that you are too stupid to manage your own money and so the government takes it, and manages it for you, allowing you to only have 20% of it in cash – welcome to the Indue Card, which is being rolled out across the country.

Imagine having to hide your religion from people in case you are ridiculed, or even attacked. I rarely disclose my religion to people in real life.

Imagine having a fair whack of people tell you that you should be killed (because of your disability).

Don’t even get me started on what it’s like to be fat!!!

I want to be a good upstanding citizen who is well versed in current affairs, however every time I try, I come across these articles that say I am inferior (or much much worse). Every time I go to a family function and they bitch about people on welfare. Every time I go to the shopping centre and I overhear conversations about “those gays”, or people comment that “people like me” (i.e. disabled people), shouldn’t be out in public.

Every time I am in the world, even if it’s electronically from home, I am told that I am less than. Constantly.

Boom, you’re less than. Bang, you’re less than. Bam, you’re less than. Over and over and over. Never ending.

It is exhausting. And most days, my greatest achievement is not killing myself.”

Posted in Personal

Empathy vs. Sympathy??? – And My Autistic Stuff Up…

So the other day, I managed to do my usual “open my mouth before I took the time to think it through” type post on FaceBook.  One of the problems with FaceBook is that once a post goes off my phone screen, it often disappears forever, never to be found again, and the page that posted this particular post often posts quite a lot, so trying to find it again on their page may not have worked, had I left the issue be and kept my mouth shut for another time.

The post was a link to an article that I fully understood and agreed with, however there were a couple of comments on the FaceBook post where I felt that perhaps the people replying didn’t quite “get it”.  Here is an excerpt from the link that was posted…

Comparing open pores and malignant melanoma would, and should, be considered ridiculous and actually rather distasteful. So why should it be considered valid and meaningful to bundle up severe suffering and life-altering consequences with day to day “struggles”? Failure to identify the often excruciating experience of serious and entrenched mental health problems is a whitewash.

Please don’t try to normalise severe suffering. It’s not just a part of life in general, it is a extraordinary experience that dominates many people’s lives and identities. I am like everyone else in so many ways – needs, desires, hopes, skin – but when I am ill I am more unlike the general population than I am like and I am acutely aware of that. Can we please stop pretending otherwise for the purpose of dismantling the medical model? Because you’re marginalising the voices of the people you purport to want to help.

From –

Basically, the link (a blog post) was stating that having a severe disability or illness is not the same as having a normal everyday human experience.  For example, having severe depression, complete with self injury and suicide attempts, is not the same as being sad (grieving) that your dog died, and likening the two as being the “same thing” invalidates the experience of the former, and leads to a situation where people are expected to deal with severe situations as though they are normal everyday life events.

Which I think we can all agree is a fucked up way of looking at things, even though as a society, that is exactly what we do to people!!!

So I replied:

I totally agree with what she is saying, however unfortunately, I think this is one of those areas where if you haven’t experienced it, you’re probably not going to understand it. And if you don’t get it, then no, you haven’t experienced what she is talking about.  

I’m sorry – I don’t have the words to explain properly right now (AS). I’ll think it over and come back if I find a way.

And I got my butt kicked a tad by someone who thought I was downplaying her experience – assuming that she has not in fact, experienced “severe” anything…

Which is not what I meant by “it”.

(By the way – said person and I had a little chat and she’s really nice 🙂 .  It was just my usual way of not quite explaining things properly that got me into trouble, and is the purpose of this blog post – to explain properly now I have thought things over a little.)

I did not mean that if you don’t understand where the blogger was coming from, then you have not experienced severe situations – disability, illness, trauma, whatever.  I meant that you (may – should I have said may?) not have experienced the way that society downplays your severe experience as just being a normal everyday part of life.

Another reason I took some time to write this blog post is that my kids had a paediatrician appointment today.  Turns out that a situation developed that highlights where I (and the blogger) are coming from perfectly.

One of my children has a condition, it turns out.  A clinically severe condition.  I don’t post my children’s details online unless there is damn good reason, so I am not even going to tell you which child (and they both left with new, severe, diagnoses/issues today), let alone what the diagnosis was, however my kids are each about a decade old.  And for approximately a decade, while we have known this child had issues in this area, we did not fully comprehend just how severe it was.  Thankfully, the paediatrician picked up on it while we there for other issues.

For nearly a decade, we have been saying “yeah, but he’s a bit like that”, and “yeah, he just needs blah blah blah and he’ll be fine”.  Other specialists and therapists have just ignored the situation altogether.  In other words, our son has been dealing with this his whole life and because of that, it has become our normal.  That is how the paediatrician put it.  It has become our normal.

But it isn’t normal.  It is nowhere near normal.  He’s not a “bit” like that, he’s a whole fucking lot like that, and he needs help (and is now finally getting it, thanks Dr P).  Thanks to our normalising this issue, he has gotten worse over the years, and who knows what might have happened if it had not been picked up on today???  (I’m having major Mummy guilt, I apologise).

Everyone gets a bit like that right?  Sure, he might be a bit more like that than most, but still…  No!  Just NO!!!  And this is the point the blogger was trying to make – normalising severe issues is not good for those going through them.  It can in fact, be downright fucking dangerous.

When a child gets, say cancer, no one says “oh, but they’re just a bit like that, and we all go through it sometimes”.  No one normalises cancer.

However only select populations cop the attitude that their severe issue isn’t really such a big thing.

Mental health issues, and invisible disabilities seem to cop the most invalidation in my experience (of disability advocacy, and no, I am not implying that other disabilities or illnesses don’t).  Again, I have the paediatrician today to thank for these words – people don’t often understand, or pick up on, what they can’t physically see.  When you can’t physically see an illness/disability, it can be impossible (or flat out IS impossible) to be able to fully sympathise (and empathy is out of the question), unless you have been there yourself (or close enough to it).  And I think this is what leads people to trying to normalise these conditions.

That, and this newfound idea that everyone has to be a victim these days (but that’s a whole other blog post), coupled with increasing apathy among society for those in need (and yet another blog post).

So in conclusion, I wasn’t trying to say that if you haven’t experienced severe illness/disability/etc, then you will not “get it”.  I meant to say that if you have not experienced people normalising your severe illness/disability, fobbing you off as being a hypochondriac, or a drug seeker (if your issue is pain), or an attention seeker, etc, then you will not “get it”.  Not fully.  You may be able to sympathise, however you will not be able to empathise.

All of what I have said thus far may come across as though I am saying that “normal everyday suffering” is not worthy of our time, attention, respect, empathy or sympathy.  I’m not saying that, and neither was the blogger.  Neither of us are trying to say that if you have either a normal everyday struggle, or a severe struggle that others appreciate as such, that this means “less” in ANY way.  It does not.  I have severe “chronic acute” pain (pain that is acute, but happens daily and will forever, so chronic in that sense).  Quite often, people will complain about their splinter pain (or whatever), and then stop themselves, and apologise to me for complaining about their small pain, when mine is so big.  I always tell them not to be so bloody silly – all our experiences are valid and pain is pain.  Your worst pain might be my small pain, but it’s still YOUR worst pain.  It is worst for YOU, and so deserves all the respect that my worst pain would.  Probably more, considering I’m more used to being in pain in general lol…  I’ve tried killing myself three times, have severe PTSD, and clinical dysthymia/depression, however if one of my friends is sad, for any reason, then their emotional pain is just as valid as my own.

All the blogger and I wish for, is that people stop normalising severe conditions.  People doing so has been bad for my son, and has nearly (or has) killed myself (and others with my condition) more times than anyone could count.

Even if you have experienced this kind on normalisation of your illness/disability/etc, you may not agree with the other blog, or even with my own here.  And that is ok.  We don’t have to all agree.  I do believe however, that in order to fully understand something, you have to have gone through it to some degree.  As a white person, I am not going to fully understand racial issues (though I do my best to educate myself, and have lived through a small amount of racism myself, I’m never going to fully “get it”, as no white person can).

Anyway, hope that makes sense to those people involved on FaceBook, and those reading all about this here for the first time.  If not, please let me know, so I can adjust my wording 🙂

Love to you all.

Posted in Personal

Oh, Fuck Knows…

I don’t know what to call this post.  I don’t know much of anything at the moment other than it’s ten to six am and I haven’t slept yet.  I can’t sleep.  It eludes me, and when it does come, usually in the afternoon hours, it is filled with dreams of things I’d rather not think about.  Or be reminded about.

Things have been shitty lately.  The year started off shitty, and only got worse.  And worse.  And then fucked us over completely.

We lost – our car, two computers, two back up drives, my eldest son’s sense of hope, and my fucking sanity.  We moved with one weeks notice, losing about $6.5k we weren’t expecting to have to lose this year in the process.

I had to ask the man who molested me as a child for a loan to pay for my kids school shit.  So much for empowerment.  That one stung big fucking time.

Three of us wish the kids school would burn down, but our youngest likes it there, and our eldest has now graduated.  So there’ll be no arson from us.  I’m not ruling out voodoo dolls for certain abusive teachers though.  And possibly the P and C.

I’ve begged and pleaded for scholarships and food hampers and any sort of help I can find to try and get us to the point where the kids can have some sort of normal life, but nada.  Nobody will help.  Fuck it.

Seriously, you have to laugh at this Shakespearean shit.  Some of the things I’ve seen would blow your mind.  Simply put – we can’t receive a lot of help because we are either too disabled, or too poor.  Like I said, Shakespearean shit.

My kid needs a new computer so he can participate not only in school (they need laptops for high school and while he has one, it’s way too old for the job these days), but also in a specialised coding class we managed to get him into.  Finding out about that class is the one good thing to have happened this year.

Perfect looking marriages are never perfect.

We can’t afford Christmas, and we missed out on the free Children’s Christmas Party (teacher didn’t ask for tickets until it was too late).  So that’s a whole fizzer all round this year.

The car my grandmother bought us a few months after our other one died is having serious issues, and our mechanic said he never would have given it a roadworthy…  Ugh.  If we want more than three gears (1st, 3rd and 5th), we have to find some money soon.

I’m going through a midlife crisis.  For my age, I’ve lived.  Actually, by the time I was 30, I had lived.  And then some by the time I was 37.  I’ve been molested, raped, nearly murdered (with only a minute or two at most saving my life).  I’ve had a knife put to my throat three times, and none of those times was when I was nearly murdered.  I’ve acted and sung and danced for audiences.  I’ve had a belly ring.  I’ve had half a dozen articles about me in the newspaper because I’m apparently that interesting – the earliest one I know of was when I was three or four (though that one was about my dad and just had me in it as well).  I’ve written articles that have been published, some by major publications.  I’ve been a guest on SBS Insight.  I’ve had federal front seat ministers become aware of who I am because I was just that much of a pain in the arse.  I’ve had ministers over for coffee (though less famous ones).  I’ve spoken to one of our most famous politicians on a plane, though I didn’t let on that I knew who she was.  That was cool.  I’ve met and talked with famous musicians.  

I’ve lived overseas.  And let me tell you – visiting cultures different from your own isn’t the same as living them for over a year.  I visited Korea – it was nice and I learned a lot, but living in Japan was a whole other thing.  Though I did visit Okinawa on a holiday.  There I went into castle ruins, and went swimming at a private beach.  Two of the guys and I swam over the shark nets to some nearby rock type formations in the ocean, and climbed them.  I joined an English writers group  and met a journalist who did an article on me in the Hiragana Times.  I became good friends with a girl who was in the Twin Towers when the planes hit.  I went to parties and shopped in all the Tokyo shopping districts and went on a cruise.  I bathed in public baths on Mount Fuji.  I went snowboarding.  And I moved there two days after 9/11 when people all thought I was nuts for travelling.  I didn’t care.  They often asked “how can you do this (travel)?” and I’d just reply “geography and physics”.  It probably helped that I didn’t care if I died or not – I just wanted to live.

I’ve visited London too, and again, I managed to do it the right way – as a backpacker.  I conned my way into acquiring a journalist pass at the British Library so I could research old books on witchcraft.  I had sex in a toilet with a butch lesbian.  I saw platform 9 3/4 at Kings Cross Station.  I went to Camden Markets and saw We Will Rock You at West End the night a girl yelled out “I love you” to the main male star, and the show went on, but then a guy yelled out “me too!” and the main character couldn’t hold character anymore and he burst out laughing for a good minute or two.  I stayed up drinking with other backpackers.  I met an online friend and went to Piccadilly Circus, and Trafalgar Square.

I’ve been a child care worker, a painter (both houses and art), and a door to door pest where I collapsed in a Sydney park and the police were called to see if I was ok.  After that, my boss dumped me in the middle of Blacktown without checking to see if I had enough money to get home.  I did.  With about $2 to spare.  And I had to get help from the cops to get to the bus, because I had no clue where the fuck I was.  I’ve worked in a bakery as a barista, and I’ve worked in a clothing store.  I’ve been a nanny, a kindergarten teacher, and an English teacher.  I’ve been a property manager and a book keeper, twice for both.  I’ve been a support worker.  I’ve volunteered in the SES, for a youth centre, a women’s centre, a multicultural university group, LandCare, blood bank, a gymnastics club, the Gympie Muster (oh, there are some stories there!!!), and for various schools (PandC secretary, book club organiser, that sort of shit, as well as teacher aide back in the days when you were allowed even if you had no children).

I have scars all over my arms – a road map of my internal pain.  Due to my EDS, some of them are “growing” apart, becoming wider and wider over time.  Once a doctor gave me stitches without pain relief to teach me a lesson.  She gave me quite the lecture too.  Though many many many doctors have given me lectures over the years – and not one of them knew what the fuck they were talking about.  I tried to give myself stitches once after I overheard two nurses laughing about how they had forgotten about me – both of them left for the night without reminding anyone.  So I checked the chart on the wall, found the correct type/size and went to a friends place to try and do it myself.  For the record, it’s really hard to do one handed.

I’ve cut my wrists, seriously, four times.  I keep going back to the same method because my mother used to talk about doing it that way when I was a kid and I used to worry about coming home and finding her.  I’ve been in two different psych wards in two different hospitals.  One of those has four different levels of security, and I’ve been a guest in each of them.

Apparently I’ll never stop thinking about suicide or cutting as options when shit gets too much.

I once went to the Gold Coast and swam out about a kilometre before I decided drowning is a terrible way to die, and so I swam back.

I started smoking at age 22.  I dabbled before that, but went full time at 22.  I was always the goody two shoes as a child and teen because I was too scared of my mother not to be.  One kid in high school yelled at me on the bus one day that people hated me because I was too nice.  I never understood that.  So once I was suicidal, and just didn’t give a flying fuck what my mother thought anymore, I started smoking.  It gave me power.  It said – I’m making my own decisions.  I’m being my own person.  I’m not meek anymore.  Watch this fucking space.  Plus, it’s fucking boring in hospital – even the psych nurses smoked!!!

I finally figured out I was a lesbian in my early twenties.  I thought I was at 13, but my mother convinced me it was a stage.  Plus, living in country towns doesn’t exactly give one the space to be who one is.  Not long after, I moved in and had children with my best friend – a hetero guy.  Damn his penis.  And lack of boobs.

I’m also a witch.  Though I don’t buy into the supernatural side of things.  Except for one thing – I’m on the fence when it comes to the moons gravity.  The rest though, I just consider tools to help our subconscious figure shit out, and the “looking after nature” side is obvious and something we should all be doing, witch or not.

I’ve been in a movie and a music video, though neither were produced in the end.

I’ve had a one night stand, and I’m a domestic violence survivor.  My father died when I was six, two years after my parents divorced.  I’ve had stalkers, plural.  A guy kept asking me out once and I kept saying no because something about him made me nervous.  He ended up being a serial rapist and when finally caught, burned himself to death in a car.  I’ve had my unit burgled.  I’ve been in the back of a police car in an official capacity (as in “you WILL come with us”), twice.

I’ve studied at TAFE and university, though have only finished a Diploma I can no longer use.

While living in Toowoomba, I once went for a drive around the block and ended up in Sydney.  I was asked for my hand in marriage while there, by an Egyptian guy who wanted to talk me to Cairo to meet Mum and Dad.  I’m not sure if he was crazy or thought I was that desperate.  I had been sitting in the park most of the day, so probably the latter.

I’ve had sex in the backseat of my car (and been busted by a family of five, including grandma), in a backpackers hostel toilet (we took a doona in!), at the beach and in a park.  I’ve broken out of psych wards, and then broken back in again.  I’ve done 175km on country roads, and only stopped there because my car was old and started shaking so much I thought it was going to fall apart (it was a straight flat road where you could see if anyone was around – the only life I put in danger was my own).  I’ve danced all night, and on a bar in Tokyo in front of a crowd, Coyote Ugly style.

Of all the things, I think I miss dancing the most.

Did I mention yet that I have a husband and two children?  By far, my biggest dreams come true.

The problems I mentioned at the start of this are just the tip of the iceberg.  I haven’t been on FaceBook lately and a friend noticed and asked if I was ok, and said I could message her if I wanted to talk…  but I can’t because I can’t put my shit in writing.  It either involves the kids and I’ve got no business putting it “out there”, or it’s just too fucking complicated or depressing for words.

Suffice it to say, there’s just too much going on at the moment, and I’m really not coping.  And in the middle of it all, I’m having a midlife crisis where I feel like I’m not living.

Given how much I’ve lived thus far, honestly, having a break isn’t so bad right?  Though I think the base problem is not that I’m not living right now, but that I feel like I’ll never live again.

I can’t talk to anyone other than my support worker.  People just piss me off at the moment.  No one knows what I’m going through, but everyone wants to think they do.  And while I know it mostly comes from a place of “lean on me, I know what you’re going through”, it just comes off as offensive and/or minimising.  Of course, it doesn’t help that I can’t tell anyone the full story of what is going on for us at the moment.  Honestly – not even my husband fucking knows everything going on in my head.

It’s easier to just not talk to anyone.  Then I can be sure not to offend them by yelling “you have no fucking clue!!!” when I reach my breaking point.  Plus no one understands and that gets frustrating.  I wish I had someone to talk to.  I really fucking miss my old psychologist.  She understood me.  Or at least, she was really good at pretending to.

Odds are I’m not going to see retirement age.  Odds are I’m not going to see 50 even.  I’m about to turn 39.  I’m pretty sure I can hang on another ten years, but after that, it’s a crap shoot.  And I’ve dealt with that.  I’ve made my peace.  Mostly.  Still – if that is indeed how it is, and there are all these things I still want to do, and I just can’t do any of them and it’s really pissing me off to the point where I’m not even sure why I’m bothering to hang around another ten years.  Don’t worry – I’m not suicidal, just pensive.

I feel like I’ve done nothing with my life, but I’ve done more than most my age right???  So why do I feel like I’m going to die without achieving anything???  Dying I can handle.  Living a pointless and empty life, I can’t handle at all.  And I feel like I have, even though I’ve accomplished a lot of my dreams and desires.

And no, I’m not one of those people for whom raising children is enough.

So as well as everything substantial fucking up our lives at the moment, I have this midlife headfuck going on too.

Head. Meet. Wall.

Fuck it all.

So that’s it.  Well, it’s about a tenth of it, but it’s all you’re getting.

Posted in Personal

Dear My Husband…

Dear My Husband,

I know we tell each other every day that we love each other.  I’m not sure I have told you lately just how much or why…

I love you to the moon and back.  Not our moon.  Some other moon, in a galaxy unknown to us because it is so far away.  One of the moons there.  I love you to that moon and back.  The infinite moon.

I first loved you when we went to the beach that first time, and you listened to me like no one has ever listened to me before.  I loved you that night when you kissed me and understood when I couldn’t kiss you back.  I loved you that night when we were driving home, and instead of being upset, we talked about our future plans as if nothing had happened.  I love that you didn’t let that destroy our friendship.

I love you for letting me go when I wanted to live overseas.  I love you for allowing me to use your computer to find a job overseas when all you wanted was for my to stay here, with you.  I love you for all those phone calls while I was over there.  For picking me up at the airport.  For forgiving me that little misunderstanding regarding the town gossip about us getting married.  For forgiving that the gossip was ultimately my fault.

I love you for being there, every step of the way, when I got home.  Through the mental illness and hospital visits.  Through the moving houses and towns and cities.  Through the pain that must have occurred as I explored and developed and understood and accepted my sexuality, finally, after all these years.

I love you for trying to date other people.  I love you for deciding that none of those dates were me.  I love you for waiting for me, even though every indication said it was never going to happen.

I love you for not accepting half a relationship when I wanted to have your children, but without you as a partner for me.  I love that you wanted the whole deal, and stood for that.

I love you for loving me despite all my flaws.  Despite all my mistakes.  Despite the fact I’m a gender fluid lesbian.  

I love you for never pushing me.  You let me know how you felt, but not once was there ever a sliver of a hint of a guilt trip.  I always felt free with you – free to be who I was, and free to keep our friendship on my terms, and just – free.

I love you for taking a chance when I thought that maybe we could work as a couple even though I’m a gender fluid lesbian, because when it comes down to it, you are the one I want to grow old with.  I love you for not ever pressuring me to have sex.  I love you for advocating right next to me for gay rights.  I love you for supporting me to express myself in any way I wish.  I love you because I can’t imagine how hard it must be to love someone so completely, who isn’t that into you sexually, and not only allow them to call all the shots, but also be ok with them being public about who they really are.  I love you because loving me is more important to you than what other people think of our relationship.

I love you for not being a macho guy.  I love you for not caring about things just because society says you should.  I love you for being true to who you are.

I love you for giving me two awesome children.  I love you for being the best father they could ever ask for, even though you’re exhausted all the time.  I love you for putting your own needs last all the time.  A friend of mine told me just yesterday that I put my needs last, but it’s not really true.  In this house, that honour belongs to you.  I love you for never complaining that I go out to coffee with my support worker every week, even though it means you and I miss out on presents for ourselves most birthdays and christmas’s.  I love you for never asking for anything for yourself (even though I wish you would!).

I love you for working full time and caring for our child/ren full time and looking after me full time when I became disabled while and after being pregnant.  Parents speak of being exhausted, but they’ve seen nothing compared to you, yet you never complain (and always listen if someone else is!).  I love you for always getting up when our children were babies, and bringing them to me to breastfeed, and for changing their bums all the time.  I love you for staying awake while they were breastfeeding, and I fell asleep, so that you could take them safely back to bed when they were finished.  I love you for never making me feel like I should have been doing more.

I love you for giving up your career when you had to, even though that meant a lifetime of poverty for you.  You could have easily left us, and a lot of men would have, but I seriously doubt the thought ever crossed your mind.  I love you for not leaving even when I ordered you to, when you became so injured and sick at times, and I was scared looking after us was killing you.  I love you for staying even when it got to the point that you had a heart attack!!!  I love you for listening to me whinge about how hard it is, even though it has to be ten, a hundred, or a gazillion times harder for you.  I love you for never once, saying anything that lets on that you have ever felt trapped, or that you don’t want to be here, or that you have given up so much to be my/our carer.  I love you for just accepting things as they are, and getting on with it.  

I love you because you are smart and talented enough to have taken over the world, but you gave it all up for me, and our children.

I love you because you do all the household chores without complaint.  I love you because you insist that I tell you if I want extra things done, even though you are exhausted as it is.  I love you for getting my pills, for helping me wash my hair, for helping me get dry after a shower, for helping me get dressed, for preparing my meals, and for constantly getting me things so that I don’t have to get up and risk dislocating my hip (or something else), or falling down.  I love you for going mad at me when I wait to ask for things because you are busy.  I love you for remembering to freshen up my water bottle.  I love you for taking the kids to school so they can stay where they are most comfortable, even though there are closer schools.  I love you for supporting my wish to return to university, even though that will mean even more travelling time for you as you will need to drop me off as well (and possibly take me to classes – we’ll talk lol).  I love you for supporting all my work and study choices, even when they haven’t worked out, and even when it has meant more work for you (like taking the kids to daycare etc).

I love you for filling my prescriptions, and grocery shopping and picking up the mail, and anything else that is needed, even though walking is sometimes as painful for you as it is for me.  I love you for taking the boys to appointments on your own sometimes, even though you hate doing so due to your own Autism.

I love you for taking chances with me, like buying our house.  I love you for not blaming me when those chances went bad, like buying our house.  I love you for moving to new areas without complaint, which we have done both times because of me (once so that I could take up my dream work position, and once because the climate was better for my health).

I love you for being true to yourself, no matter what.  I love you for the long chats, both with me and with our children.  Educational chats, philosophical chats, any type of chats.  I love you for taking the time to be with us, even though I’m sure you’d rather just go to bed most of the time.  I love you for always challenging the status quo, for never just accepting what you are told.  I love you for using your brain.  I love you for using your heart.  I love you for opening our door to people in need, even when that meant taking someone in to live in our dining room for a few months, something that must have been hard as an Autistic man who likes his privacy, and who didn’t know the person beforehand.  I love you for supporting me when I publically state that I love you, even though I’m a gender fluid lesbian, because you can’t help having a penis, even though I’m not really sure how that makes you feel as a heterosexual man.  I love you for supporting me, no matter what.  I love you for supporting our children, no matter what.  I love you for all the time you put into helping our children, even though I know sometimes it bores you to tears.

I love love love your sense of humour!!!

You are my rock.  You are the one I want to grow old with.  You are the one I want to laugh with, and cry with, and celebrate with, and mourn with.  You were the only man I ever wanted to father my children.  You are the one I want by my side when I die.

I love you so much.  I love you to the moon and back.  I love you for a million more reasons than these.  I love you for a million more reasons every day.

I love you just for being you.

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Posted in Personal

Low vs. High Functioning Bullshit

This week, a family of four (and their dog) was killed by the father in a murder suicide.  Despite the fact that the family had marital problems (according to at least one news source), everyone is jumping on the bandwagon that the father did this because his two children were Autistic.

Let me be clear – no one knows why this father did this.  Could be because his children were Autistic.  Could be because apparently his wife was thinking of leaving him.  Could be because he was just an arsehole.  Who the hell knows?

In one article I read today, I saw this quote…

Autism Awareness Australia CEO Nicole Rogerson said thousands of parents around the country shared similar experiences as the family.   “This horrible event, at least, highlights the significant difficulty many families who parent kids at the severe end of the spectrum go through,” she said.

This quote is similar to quotes always put at the end of such articles – such quotes that always state that Autistic children, especially the low functioning ones, are such a burden that well, gosh darn it, it’s a wonder more parents aren’t murdering their own children.

Plenty of people are writing about how wrong it is to murder your children, regardless of their diagnosis.  What I want to visit here is this trend towards such quotes singling out “low functioning Autistics”, or as Nicole here put it “kids at the severe end of the spectrum”.

I assume we all know what type of child Nicole is pointing towards.  Can’t speak, not toilet trained, low intelligence, other medical or developmental issues.

Let’s forget for a moment that most children grow out of most of these issues given the right supports and accommodations.  I am quite often told I am high functioning, but I smeared my shit as a toddler and was late to the toilet training party.  I had issues with speech as a child.  Autistic children are still children.  They will learn and develop and grow up, just like children who are not Autistic do.  Developmental delays are delays, not brick walls in your child’s path (unless you make them so).

As a mother I get it.  I really do.  And I’m going to admit something here, in public, once and only once.  I actually have what the general Autism Mom* would classify as a “low functioning” Autistic child.  I also have what the general Autism Mom* would classify as a “high functioning” Autistic child.

And when it comes to the day to day looking after of said children, my high functioning child is MUCH more “difficult” to deal with than my low functioning child.

Sure, my low functioning child has had all the issues associated with being “low functioning” (no, it’s not your business how this manifests for him).  However my low functioning child is happy.  My high functioning child however is a massive mess of nerves and quite often suicidal because of it.  He might be coding programmes on Visual Basic to help his little brother learn his times tables, but he doesn’t cope so well with day to day life.  When we are called to the school, they are calling about our high functioning child.  It is our high functioning child who is spending all his time in the support centre while our low functioning child is in the mainstream classroom.

These arbitrary functioning labels do not help anyone, so STOP FUCKING USING THEM!!!  All you do is create an “us vs. them” culture that helps no one.  You can’t judge how a person is doing based on their ability to shit on the toilet.  If a person needs help and accommodations, then they need help and accommodations, and screw these little boxes that society wants to put us in.

I’ve said it before, and I’ll say it again – the “spectrum” is NOT linear!!!  It’s a colour wheel.  There are no ends.  There is no this end or that end.  There is just Autism.
* The term “Autism Mom” is used to describe a non Autistic mother of a child with Autism.  “Autistic Mom” is used to describe a mother who herself has Autism.  Autism Mom’s who describe themselves as such, are being highly offensive, so if you do that, then stop please.

** Yes, I’m Australian, but I used Mom instead of Mum because my readership is not all Australian, and this trend to describe oneself as an Autism Mom started off as an American thing.  In my mind, I use this pronounciation, so I also use this spelling sometimes.  It depends on my mood.

*** For the record, my husband and I discussed whether or not to publish this blog post.  We value our children’s privacy highly however at the same time, my parenting journey is also my journey, and sometimes advocacy needs some examples. So no, my kids Autistic qualities are not up for public discussion.  I won’t be answering questions about toileting, or how far behind my child is at school etc etc.  I don’t like telling people that one kid is high functioning and one kid is low functioning.  I don’t like telling people that one kid is easier to deal with.  I’ve done so, because I know my kids will understand once they are old enough.  I’ve done so, because if I can change a few minds, who might go on to change a few more minds, then maybe, one day, we can finally get past this whole “functioning” bullshit, which hurts both my kids!!!  These labels hurt my kids when it’s assumed that because of their functioning label, they can do A, B or C, or that they can’t do A, B or C.  These labels hurt all our kids.  And they hurt Autistic adults too!!!

Besides, I’m teaching my kids not to be ashamed of who they are.  So the issue of whether or not I should have written this post – that isn’t up for discussion either.

Posted in Uncategorized

Bludgers and Leaners and “Taxed Nots”

Here is a photo of my fridge today…

Photo of Near Empty Fridge

Near Empty Fridge

Some margarine, some butter, some left overs, some eggs, some tortillas, some cheese, some fruit and vegetables, some crushed nuts and some chocolate.

It’s looking pretty fucking empty right?  We moved nearly a month ago, and still haven’t been able to afford a grocery shop to fill it again.  The kids aren’t hungry – they don’t eat a variety of things anyway, and while the pantry has a similar feel of emptiness to it, we have enough to feed us all.

I wanted to post this picture to highlight how a family such as mine – on perhaps one of the highest rates of welfare, still struggles.  We go without medical equipment, medical appointments, therapy, and yes, sometimes even food.

My second thought on the subject however was much more troubling…  “If I post this photo,” I thought, “people will condemn me for having chocolate and brand name Guacomole…” Never mind that the Guacomole was bought before we moved, and probably far past its used by date.  Never mind that the only thing that settles my stomach some days is chocolate, or that some days, I am so exhausted that the only way I can summon the energy to go to the toilet is a sugar rush, or that some of it too, was bought before we moved nearly a month ago.

No, people will just judge, because some people just love to judge and put others down and make them feel like shit for no other reason than because they can.  And I think this issue is actually more important than the state of my fridge.

I’ve been following politics for nearly twenty years now, and although I have probably forgotten more than I have remembered, one thing has stood out in all that time.  Everyone loves to demonise politicians but very few actually hold them accountable.  Very few Australian citizens seemed to like the abuse happening in our off-shore detention centres (regardless of their stance on refugees), yet very few stood up and said “enough”.  The same rhetoric can be said across the board for all issues affecting Australians.  Including Australians on welfare of any kind, who are currently being demonised in the media, and by trolls, because our politicians see us as a very convenient enemy for Australians to get their knickers in a twist over.

And very few people are calling them on it.  Indeed, many are agreeing with them, without having being bothered to research the situation at all.

(Let alone have any type of understanding about economics, but let’s leave that for another day).

Very few are standing up and saying “enough”.

We get the politicians we deserve.

Now I’m not saying that we should all be rioting in the streets over every cause we find unjust.  No one has that sort of time or energy.  However surely we can all do a little rioting over one or two issues??!!??  Surely we can all (mostly – obviously illness and disability sometimes gets in the way of good intentions), find one or two things we are passionate about; one or two things about which we can summon the will to stand up to all around us and say “enough”.

The same people who will judge my fridge without bothering to find out more about my circumstances are the same people who sit on their trolling arses all day, bitching about the state of our country, and yet doing nothing to help either situation.

In this day and age, where we have the anonymity of the Internet; where we have media outlets pushing each other out of the way to cover the latest story of “who cares” in order to be the first to publish something, anything, even that loner down the street waving around a placard sign in front of his/her local MP’s office; where we have technology that is getting cheaper by the day, and available for free at your local library; in this day and age, where have all the people gone???

Of course the government is corrupt and the trolls of the Internet are flourishing.  No one is standing up and saying “enough”.

Hell, when it comes to the government, we can’t even be bothered voting the bastards out.

We get the government (and the trolls) we deserve.

Posted in Uncategorized

Validation for Nicholas!!!

Ordinarily I only have bad news to share.  Life can suck that way.  Today I have great news to share.

I received a phone call at 6:30 tonight from the head of the Support Centre at the kids school.  She apologised for calling so late, but said this is the first chance she has had all day to phone, and she couldn’t wait until tomorrow.  I told her that she was free to call us any time.  My kids always come first.

At first I was apprehensive and scared – I thought that maybe Nicky was in trouble, or had done something wrong, or something bad had happened…

As some of you are aware, Nicky has been bullied at school of late.  He had all of last week off while I attempted to try and think of a solution (plus I was rather frozen in an Autistic way myself, unable to pick up the phone and call).  I eventually text the head of the Support Centre, K, and let her know what was going on, and she got in touch with the principal who called me first thing Friday morning.  We had a long chat, then she organised for one of the school counsellors to call as well, and set up some starting solutions to get the boys back at school (Quinn was home as well, though for different reasons).  One of those solutions was to start Nicky off at the Support Centre until he felt safe enough to go back to his classroom.

So yesterday, Monday, Nicky was at the Support Centre all day, and one of the projects he had to do was make a poster.  He worked on that today too.  He also talked to K about his programming, and she suggested he bring his computer in so that she could have a look.  Today he took his computer in and showed her the work he has been doing on a program he designed to help Quinn learn his times tables.  He also wrote a program in front of her to make a box appear saying “hello”.

In this house, this is pretty basic programming, but K thought it was a big deal, so she went and asked the IT guy at school to have a look with the intention that he might be able to work with Nicky on some programming stuff.  He informed her that what Nicky was doing was high school, if not university level and that he was himself currently learning this stuff at university!  So sorry, but no, Nicky was beyond what he could help with.

K also went straight to the principal and informed her of Nicky’s ability.  An impromptu meeting was called with the principal, the vice principal (as the principal is going away on long service leave next term), and a few other people, including K.  Phone calls were made to various places, trying to find out what can be done to help Nicky with his studies, as apparently none of them have dealt with a kid like this before.  K said she has dealt with 2E* kids, but none at this level.

(2E, or Twice Exceptional, means a person who is gifted as well as having a learning disability, such as Autism).

So we have a meeting tomorrow to add in our thoughts and get some more information.  The school is trying to get Education Queensland on board as they will then continue with Nicky through to high school and keep that continuity going.  The school is also going to liaise with the high school Nicky will be going to next year to make sure that he has an appropriate programme – as Nicky doesn’t test well, there’s no guarantee that this will be an automatic thing.

There was talk of Nicky doing some high school subjects as well as possibly even university subjects in the very near future.  They are also going to fight to try and get him a one-on-one tutor…

K was looking at Nicky’s poster today and had another realisation – not only is he disengaging because he is so bored, but she saw him take a passing comment as a personal insult.  She mentioned that he paraphrases his work, rather than just copying and pasting like all the other kids do.  “I don’t DO that,” he replied lol…  She realised that the staff have been treating him like the other kids at the Support Centre – that he is probably constantly thinking “why are treating me like an idiot?”  He is getting in trouble and people aren’t telling him why.  He is bored, and they aren’t understanding why.  And because he is still Autistic, but in a gifted way, he tends to take simple comments personally and we all need to work with him on that.

All of this – the realisation that he is so smart (smarter even than I have been giving him credit for I think), the realisation that he is disengaging, the realisation that he doesn’t test well, the realisation that it’s going to bother him to treat him at a lower level than what he is – I am SO glad that someone has finally noticed.  I mean, I can tell them all I like, but in a system that is set up to only look at test scores with a kid that doesn’t test well – and with all mums thinking their kid is the greatest – I can yell as loud as possible and no one is going to hear me.

Well, someone has heard HIM now, and they are so excited, they are calling me from their home at dinner time lol…

As I said, the school hasn’t dealt with a kid like him before, so they are calling everyone they can think of to try and come up with the best way to help him.  If you have any ideas, please let me know!!!  This is obviously very new to us too.  We have put him up a grade before, but he had to go back down when he didn’t learn anything while being homeschooled.  There was an issue then – because he essentially missed out on a years worth of work, he was expected to know things he didn’t know, for example, all the kids had learn their times tables, and he still didn’t know what multiplication was.  I explained it to him, and he was fine after that, but this issue will be larger now that he is older and I’m not sure how to deal with it.

Everything is up in the air at the moment – it is going to take a few weeks (especially with school holidays starting next week) to get anything sorted.  Finally though, they get it.


Posted in Uncategorized


I’m totally frozen in place today.  Barely able to move.  Snuggled in blankets and manoeuvring to as close to the fatal position as possible as often as possible.  My Myoclonic Jerks have come back, despite the medication I am still taking to keep them at bay.

I am stressed.

My youngest son is scared of dying.  He has “bad thoughts” that he “wants gone” before he will even consider going back to school.  He only feels safe with Mum.  Given exactly how upset and scared he is, and taking into consideration the circumstances of his older brother, I’ve been inclined to allow him to stay home until such time as we can see a professional and try to help him.

My oldest son is being bullied at school.  He is being hit and kicked by the boys, and taunted continually by one particular girl.  He has had a roll of connector felt pens bashed over his head.  Other things have been thrown at his head (and connected).  

His teacher keeps making comments that attack his self esteem and blame him for things that are out of his control.  It is obvious she does not understand Autism and has no desire to learn.

One boy has been threatened with suspension, and the principal has addressed the class in regards to bullying being unacceptable.  It didn’t work.  We have to bring him home three times due to major physical assaults; one of those times was after the lecture.

I don’t think the school knows what to do.  In a day and age where parents no longer take responsibity for their kids actions, if you pull parents in to discuss their kids behaviour, you are more than likely simply going to end up the victim of verbal (or even physical) abuse yourself.

So where does that leave us?  Should we segregate our child for his safety?  These attacks could end up killing him.  He has Ehlers Danlos Syndrome.  His body isn’t like the body of other kids.  Besides –  Why should he have to do his work on his own in the Support Centre because other kids misbehave and break the law (yes, what they are doing is actually against the law and as they are over ten years of age, they could be charged if the school ever had the balls to make it happen)?  Changing schools isn’t an option as the schools here have catchment area caps – if you are not living in that area, you can not join that school.  We have tried and failed at homeschooling…  We can’t afford to move.

What else is there???  If we keep him home much longer, my income support will be cut by the government due to “truancy” of my kids, and I run the risk of them being taken by the state…

What the fuck do I do?  I am so stressed I can’t move any more.  I physically can’t move.

It’s not like our life wasn’t a cluster fuck of drama before.  I had enough going on as it was, I didn’t need this shit.  My kids didn’t need this shit.

What the fuck do I do?  When you have no options left, what do you do???

Posted in Uncategorized

Thank you – to all three of you…

I was going to post this on Facebook, and tag each of you, but that seemed a little attention seeking and I don’t know who your friends are or what they might think…  Then I thought of addressing you but not tagging you, but that too seemed a little attention seeking and I’m still not sure I want this to be to you in a specific way.  For some reason, that just doesn’t seem right.

I did want to say something to all three of you though…  I want to say thank you.

See, today I went to volunteer for an organisation, and they require two referee’s…  At first I thought “it’s been a while since I’ve done the “Better Access Campaign” and my reference from the leader of that campaign is a little old – plus it’s a reference and not a referee – he may not even remember me these days!”

Then I thought (admittedly, after a while), “hang on, I do know of a few people who I have helped over the past few years, and who I am still friends with, and one of whom I still help from time to time when my family obligations allow…”  And that is the three of you.  So if it is ok with you, I will put your names down as referees…  Don’t worry, I will ask in person first…  If I decide to go ahead with this volunteer thing – I’m still wondering if I can actually take it on with all the crap going on at the moment at home, which along with my studies, is taking up most of my time and energy.

I also thought though that I wanted to thank you.  I wanted to thank you for doing what I one day hoped to do yet never could, which is found a movement which actually makes a difference.  I’m going to be completely presumptuous and thank you on behalf of all the people you help with your efforts, whether that be advocacy, or on the ground physical help, or whatever it is you are doing to help your community.

You are three of the best people I’ve ever had the privilege of knowing.  I’m so incredibly proud to call you all my friends.

I want to thank you too for allowing me to help in whatever capacity I can, without any guilt trips when I can’t live up to doing what I feel I should.  I want you to know that I hate the fact that I can’t make any firm commitments.  It kills me, and so the fact that none of you have ever even mentioned my backing off my “duties” means the world to me.

So in short – thank you for just being awesome.  You all rock this world, and you all make it a much better place to live in.  I hope you see in yourselves what the rest of us see in you.


Posted in Uncategorized
Pissed off since 1995. Mad as a hatter since way before that.

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