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

Failure to Launch…


Purple Owl with writing - Failure to Launch

Purple Owl with writing – Failure to Launch


So it’s taking me half an hour to get my computer to work each time I try to get on it of late… but that’s not why I haven’t been writing…

And the whole family has been sick this year, including many hospitalisations… but that’s not why I haven’t been writing…

And we have normal (or even abnormal) business of life stuff going on… but that’s not why I haven’t been writing…

I’ve just had a failure to launch…

I just had a dream – I am at school as a student again (though my current age lol), and I realise two of my classmates have received these invitations to Sydney to attend a writing event.  An event for students of high caliber.  An event with limited spots I imagine, perhaps.  Hopefully.  For at least that would make me feel a little better about being thus far not only not invited, but completely ignored altogether.

So I pack up my school books and go to leave.  As I’m leaving another student lets me know the teacher has something for me, but I ignore them, feeling too hurt to deal with anything.  I know there’s no invitation for me.

Alas I am wrong, and the teacher catches up to me to hand me an invitation.  It’s not a Sydney invitation though – it’s an invitation to a local event – a consolation prize.

I storm off, thinking, believing, with all my heart, that goddamn I’m good enough to go to Sydney, if only I was given a chance.  After all, I’ve been too sick to attend school and the teacher hasn’t even read any of my recent stuff!

As my indignation grows, my inhibition shrinks.  I start screaming, informing everyone that if only people would listen, truly listen, to others, that we would all get along a lot better.  That if only we could give each other a chance, then those of us continually pushed down could get up, and have our turn to shine.

I woke up to my cat scratching at the door.  No doubt my little tirade could have gone on for a while – I have a lot of anger and disappointment and angst in me at the moment.  This blog is the first thing I’ve written all year.  I had such high hopes and plans and as with each year before, life just keeps interrupting.  And my life interruptions aren’t cutesy, like normal life events, but tragic shit, like being in hospital, or being in too much pain to move, or whatever.

I’m not sure that the dream really represents how I feel about my writing – I’m also having problems with how the school is treating my eldest at the moment, and I’m not sure how to deal with those issues.  In any event, even if it’s not a direct cause, the dream has certainly made me think of my writing and where I’m going and where I want to go and how I feel about it all.

And I do feel like screaming from the rooftops.  I feel like screaming that I’m goddamn good, and I’m worth the time to get to know…

Not that it matters I guess.  As in my dream, I’d only be screaming to the wind, and it doesn’t care either.

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Posted in Disability, Personal

2015 in review

This is pretty cool – I mean, I write my blog for me, not for fame or money – so stats aren’t usually something I care about.  Which is good because mine suck lol.  But the whole report thing is cool 🙂

Thanks for reading!!!  Maybe 2016 will be more literary for me 😉


The stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,700 times in 2015. If it were a cable car, it would take about 45 trips to carry that many people.

Click here to see the complete report.

Posted in Personal

Personally Falling…

Trigger Warning: Detailed Self Injury ideation.

Purple owl with black text saying "Personally Falling: I'm lost in my own shame of being me".

Purple owl with black text saying “Personally Falling: I’m lost in my own shame of being me”.


No one wants to hear the ugly truth.  Least of all at this time of year, when we are all supposed to be merry and bright – or at least pretending to be if we can’t actually accomplish the feat itself.

Mind you, no one ever really wants to hear MY truth at any time, or so I’ve been led to believe.  I’ve grown up knowing my truth isn’t important, isn’t valid, isn’t even “true” in the eyes of others.  And by that, I mostly mean in the eyes of my mother.  It’s hard to believe you are worthy when your own mother hates you and everything you are.

But this is about the now, not the then.

I used to self injure on a regular basis.  Daily.  Weekly.  Different levels, different times, mostly on my arms due to factors of both pain and ease of access.  And there’s something… primal?… in hurting yourself on the arms…  It’s hard to explain a feeling that reaches deep down inside your core.

The last few months I’ve been needing to self injure again.  For a couple of months, I smoked instead, hoping the feeling would pass.  Smoking gives me a feeling of “hurting myself” that isn’t the same, but makes do in a pinch.  It also feels a bit bad ass which is good for my soul in general.  Unfortunately though, while I’d be a happy smoker if I had only myself to consider, I am a mother, and I’ve never wanted to be a “smoking mother”.  I never wanted my kids to grow up with that.  So I quit after a while because I just had to.  And the urge to self injure came back to its full force.

For the last couple of weeks, I have imagined myself cutting.  I’ve planned it.  At first, I would go to bed and sleep, so the feeling or opportunity would pass.  Lately though, I’ve stopped trying to wait it out and instead waited for that opportunity to arise so I can disappear and do my thing.  No such moments have come to pass however, and so the feeling keeps growing and growing.

Last night in my dreams, I cut half my arm.  One cut after another, trying to accomplish a feeling of peace that never came, and so another cut and another until I just gave up.  My dream continued the whole night with those marks on my arm, mostly covered by a long sleeve shirt so no one but I knew they were there.  Everyone in my dream hating me, or just tolerating me, just like I feel things are in real life.

I don’t want my kids to grow up with a mother who cuts any more than I want them to grow up with a mother who smokes.  Yet that urge!!!  That urge to punish myself for being me.  It’s all-consuming.  Impossible to stave off completely.

I know why I’m feeling like this.  Some reasons are personal and not up for public disclosure.  Others are trivial (I don’t have a job, and my kids didn’t totally like all their Christmas presents, not to mention there was nothing for me under the tree except some chocolates from my support worker).  Others are just pathetic (it feels like nobody likes me sob sob).  In relation to, and despite of, that last one, the one I think is the most relevant at the moment despite its pathetic nature, I don’t need anyone to tell me they like me.  I don’t need platitudes from people I’m probably never going to meet in person.  I need real, honest to god, friends.  People who I can go and visit on a whim, just turning up with no notice and treated as part of the furniture when I arrive because it doesn’t bug them AT ALL.  People who turn up at my place whenever it fancies them (and often enough that I don’t start to wonder whether we are in fact friends any more).  Someone who calls me their sister and means it.  Shows it.  Invites me to family gatherings.  Someone who goes out with me and does stuff.  Who knows what I want for Christmas even if they can’t afford to get me anything (or who takes my husband shopping!!!).  Who understands my limitations (e.g. I can’t make phone calls, even though I can talk on the phone, and I rarely do birthdays, because I often forget, so I just do Christmas instead).

I want some close friends.  It’s no secret my family hates me for the most part (and the rest don’t understand me one iota).  And my husband and boys are great, but aside from being male (they like computers, not pedicures, damn it), I need more than just my immediate family.  My husband loves me because he just does.  My kids love me because I grew them.  I need more.  I need girl friends.  After all – I can talk to my husband about anything, except my husband!!!

Right now, I just feel evil.  Not worthy of anything good.  Only worthy of bad things, like pain and scars and tears and fear – perhaps even death.  I’m lost in my own shame of being me.

And that is why I haven’t posted anything here for a while.

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Posted in Mental Health, Personal

If Only People Knew – Employment

I just woke up from a power nap…  I had a dream where someone had coerced the manager of a hotel to interview me for a job in reception/management.  I went to the interview and flirted in that job interview the way I have been known to do (ie be rather cheeky and confident), and I knew I had the job…  The place was great – there was a club so you can hear music playing and I love office work!  The manager and I got along really well and I organised to start next week…

And then I woke up.  And was devastated.  Not only knowing it didn’t happen, but knowing it might never happen again…

I wish more people could feel that, so that they know what it’s like.  So that they know I’m not just lazy.  So that they finally fucking get it.

I’m sick of that attitude.  And I’m sick of feeling like – no – KNOWING – that society in general feels like people like me – people on welfare for whatever reason – should only get enough support to survive.  Not to live, just to survive.  I’ve been told by someone that people like me should only be allowed to purchase fruit, vegetables, bread, milk and basic meat with our pension.  Forget any other food, like steak.  Let alone seafood.  And don’t even dare suggest we might be entitled to the odd holiday or day out!!!

(My family is going on a holiday in November.  Respite used to pay for a couple of days away every year or so but they’re not allowed to any more.  So we have saved up.  But I’m scared to tell anyone!!!  I’ve told people anyway – even put it on Facebook – but I braced myself in case I copped flak for it!).

I didn’t ask for this life.  Yes, there are good parts, even great parts, and yes, I know some people are jealous of those things.  Having the time to do what I want.  Spending all day with my kids.  Having the opportunity to homeschool (even though it wouldn’t necessarily be our first choice).  Plus more…

But there are bad parts too.  Pain 24/7.  Medical issues and disability issues and the constant research and worry and appointments.  The operations and procedures.  Knowing my kids will most likely never have a normal life.

People don’t consider that part into the equation.  They just want me to feel guilty for not working.  And because of the way I was brought up, it’s working, to the point of this…

So I wish they knew.  I wish they knew how badly I want to be able to work because I used to love working!!! 

And I don’t know if I’ll ever be able to again…

Posted in Personal

Personal Update #13 – Bikers For Autism Australia and Hospital Episode

I haven’t been online much.  Between my husband’s heart attack and hospital visits and my own hospital visits, and various other things going on, I’ve simply lost my mind.  Possibly it fell under the couch, or maybe I left it in the fridge.  I don’t know.   I do know that while I have sometimes been looking through Facebook posts, and sharing or commenting occasionally, I haven’t been able to keep my loved ones updated because that requires pounding keys on a proper keyboard and until now, I haven’t been able to have my computer on my lap in order to do that.

So, my husband had a minor heart attack two weeks ago.  His tests came back fine – no operations needed, though now he is on more prescriptions drugs than I am (per drug anyway).  Like his high blood pressure, diabetes and cholesterol levels weren’t enough to deal with…  How I feel about my husband having a heart attack is a bottle we don’t want to open, so I’m placing it on the shelf with so many other bottles…

I’ve also had my medical issues in the last few weeks.  And once again – I’m not even going there.  If you want details, give me a call.

The kids are fine, although when we needed support while BJ was in hospital, “the system” suggested the kids go to another home instead of sending a support worker here.  It was the first time I have honestly been afraid of losing my kids to “the system”.  I reminded them that the person with the most disability in this house is me, and even if they take the kids away, they’d need to send someone over anyway, because I also need to eat.  So we got 1/3 of the support we actually needed, and I’m still recovering from it all, two weeks later.

Which actually probably isn’t too surprising, especially considering I’ve had medical procedures of my own in that time…  (I’ve been beating myself up a bit for not doing more of late…)

There has been one bit of good news, one shining glimmer of hope…  a friend told me the other day that my family would be the recipients of the first Bikers for Autism Australia Charity Ride!!!  Blew. Me. Away!!!

She also informed me that I can have an ongoing (volunteer) writing gig for an online magazine if I want it 🙂  So I can go back to writing for something, instead   of just writing in my head for nothing.  I’m a writer again!!!  Yay for me 🙂

So anyway – that’s the backbone of what has been going on.   Obviously there has been a lot of details left out.  Like when I had to have my Sigmoidoscopy on Thursday, and I got a migraine and the specialist thought that I was just nervous about the procedure, and I was all like “I’ve got a jackhammer going on in my head – my arse is the least of my problems”, and so I ended up having the procedure without either the normal sedation or the normal anesthetic because the specialist realised what a hard arse bitch I truly am lmao.  I was in and out in twenty minutes and downed my migraine medication asap!

*Sigh*  I am so tired.  The public thinks that people on DSP (Disability Support Pension) simply laze about all day, and do nothing, either for themselves, or others, or they think we just go bowling all the time or some shit – and they’re so so so wrong.  If I’m “lazing” it’s because I’m too sick/sore to move, and I don’t go bowling.  My time is spent filling my life with all these little stories, stories I’ll forget because my memory is shit, but stories nonetheless.  I have way too many stories.  We all need stories to tell.  Whether we’re trying to date or make new friends or just pass time, we all have to have stories to tell.  Most people acquire them here and there, and as they use them, they acquire some more to replace them.  I acquired all I needed for life by the time I was an adult.  I didn’t need any more past the age of leaving home at the ripe old age of 16.  I don’t need any more stories, yet they keep piling up.  I was 21 when my grandmother first told me I had enough stories to write a book (and trust me, she doesn’t know half of my stories!) – imagine how many more I have now.  *cry*  I have enough damn it.  It is someone else’s turn!  People complain their life is too boring – those people can have some of my stories!!!

Ugh, anyway…

Back to some good news…  Here is the poster for the bike ride being done for our family ❤  I still can’t believe they chose us!!!  I didn’t even know they were doing one!!!

Charity Bike Ride Poster


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Posted in Autism, Disability, Education, Ehlers Danlos Syndrome, Mental Health, Personal

Fucking Dreams!!!

If you don’t love me, don’t read this.  Honestly.  Don’t even go there.  Here.  Leave it alone.  I’ve written these types of posts before but put a password on them because of the content.  I’m making this one public, maybe, I’m not sure yet, because I need to show what it’s like.  I need it to finally be known. Perhaps that will bring some sort of closure.

This is trauma.  Dreams like this.

I just woke up from a dream.  In it, I was asleep, and my husband was sleeping with me, and so were our kids, all in the lounge room.  I woke up, sort of that sleepy awake, and my husband was trying to tell me something and I couldn’t make it out so I kept repeating the bits I could hear, to get him to repeat the bits I couldn’t.  Eventually I worked out that he was mad at me.  Like furious mad.  Mad like no one has ever been mad at me, and if knew my mother…  well, let’s just say, that furious mad doesn’t give it justice either.

For some reason my aunt and uncle were there too, and on his side of whatever this was about.  I never did find out, though it had something to do with money.  In real life I look after our finances and my husband has zero interest in it at all, so long as the bills get paid.  At some stage.  He doesn’t even mind if they’re late, if I have a plan to get them caught up.  He’s that awesome in real life.

In my dream, he was coming at me from all sides.  Yelling.  Getting in my face until I was backed in a corner.  I ended up sitting on small table, waiting for him to ask for a divorce!  I just knew it was coming.  I was scared of him, physically and emotionally, for the first time ever.

I ended up escaping outside.  Just after I sat down on the front steps, it started raining.  I was wearing this white shirt that was long enough to be a very short dress.  My hair was getting wet, and despite all that had happened inside, I was enjoying the view and the way the rain was making my hair wet.  It seemed appropriate to be getting drenched like that.

Then all of a sudden, I was surrounded by people in police academy uniforms, holding guns.  For some reason, they needed to train on my front porch.  Apparently, the trainer explained, it was all sorted out with my landlord.  I asked if it was alright if I stayed and learned something.  He was fine with that, though he suggested I might want to change into something a little less see-through.  I told him I was fine where I was for now – no one could actually see anything the way I was sitting up in the foetal position.

The cadets were learning how to disarm someone with a firearm.  One of them said something I wanted to rebut due to the impossibility due to physics lol, but I kept my mouth shut, and just kept watching.  The cadets liked having me there.  A couple of them used me in their exercises.

I decided I should go and get changed after all.  Our door had changed to a window however (it is a dream after all, so these things happen), and I tried twice to get in, each time, hurting my back and hips more and more.  I was so tired from having no sleep and a huge argument and being scared and now in pain.  My body just collapsed.  I fell to the ground, conscious, but unable to move.  My eyes were half shut, so I couldn’t see a lot, but I could feel everything and I could hear everything.

The cadets training came into action and one of them was holding my head before I even hit the ground.  The trainer tried to get me to wake up but I simply couldn’t move.  I tried to even just move my fingers, and damned myself for not learning Morse code other than SOS (which, duh! lol), but I couldn’t even move that.  I heard them go and knock on the door/window to tell my husband I had collapsed, and I expected him to come out, but he didn’t.

They kept trying to get me to wake up and the more insistent times brought on myoclonic jerks – full body ones.  They knew then that something was really up, and called for an ambulance.  I like the trainer – he did his best and seemed to really care.

Once at the hospital I could hear one of the medical personnel talking about me.  They were comparing a photo of me as a teen to a photo of me now.  They said that I looked “normal” back then, but that obviously I have lived through a lot because I don’t look like the same girl now.  That was the words she used – “she doesn’t look like the same girl now”.

Some other stuff happened, and then two women from another law enforcement agency were there, talking about me.  They were imagining the things I might have gone through, trying to work out why I was in the state I was, why I looked so different.  The myoclonic jerks were still happening.  One of them started tickling the top of the back of my legs, and it brought back a full flood of memories of past trauma’s – so much so I actually moved my arms to get her to stop.  Then the other one started doing the same, and I used both my arms.  I still couldn’t speak, or move my whole body, but I used my arms to try and stop them, but I couldn’t.  It just got worse and worse, and I was freaking out so much, until I finally woke up for real.

I get these dreams where I can’t move quite often.  Where I’m unconscious physically if that makes sense.  It’s always because I’m so tired.  Just so exhausted I just can not move.  They usually happen when I am actually exhausted from something, which is fucked up because that is when I need my sleep the most, and instead I wake up, exhausted and not wanting to go back to sleep in case I go back to the same dream.  As it was, I did wake up from this dream at least twice that I remember, but went back to it…  UGH!!!

It was all so real.  It felt so real.  It still feels real.

I can’t stand this.

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

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