
Rules to live by
1) Don’t fall over.

2) Don’t scratch my carers car.

3) Don’t get a migraine.

4) Find a reason to laugh.


Rules to live by
1) Don’t fall over.

2) Don’t scratch my carers car.

3) Don’t get a migraine.

4) Find a reason to laugh.


Kind Words
My Radiologist used to sometimes say to me back in the day “One of us has a brain injury and sometimes it’s not you!” Kinder words have never been said.

And never more accurate.


It’s Still a Win – Right
You know those days, this is literally how my Monday went. I couldn’t make this shit up if I tried.

Went to bed early, 12.30am, that’s early for me, trust me. Still awake until 5am, but I had an early start plus a full morning planned. First mission, fucking disaster.

Carer arrives at 8am, even my cat is listed off and confused. She knows when I should write off the day and go back to bed, but I had a specialist appointment that is every three months. On a Monday, at 11.30am, because it’s the last appointment for this clinic on the day.

This is often a Team Helen mission. Mondays I have a carer called Helen; she’s a Heavy Hitter! (I’ll circle back to that later!) We taxi to save parking dramas or me going in without her. Her agency also hits me hard for kilometres in my carer’s car. (ie. they hit me for it instead of my funding.) and the carer always is worse off. I digress, taxi to appointment, I inhaled my entirety of pills before I left and pack something to eat on the way. Learnt from the driver that burnt toast smell I always catch on the way is a coffee roaster. No, I’m not having a stroke. (Apparently, that smells like burning car tyres?)

Arrive safely and early. Hear a Code Grey while we wait this triggers a Google search of the different codes that are used in a hospital. My carer is on my left and that is my worst blind spot. I regal her it’s a story of a visit to hospital over ten years ago when a code was called for me when I’d tried to get a sleeping pill at 1am when they kept putting me off. “Just close your eyes and you will go to sleep!” I was told, like I’m a four-year-old child not a forty-year-old woman who never slept at the correct time. Anyway, started to feel a little seedy while we waited. Helen asking if I was OK, did I want a drink?
You know when you just want to power down and not be present? Started to feel sick. Suggested Helen should move to my right side. We had discussed it, but we went with it anyway. So, I threw up. (Just saliva! Not my breakfast even but worth noting!) and peed my pants. Honestly! This has never happened before in public.

I used the bathroom and when I returned Helen mentioned the Doctor had asked if I was still OK for my appointment? Like, I didn’t come all this way to throw up in the waiting room and not get Botox in my leg? It’s also usually these times my carer comments on how pale I look and after throwing up how much “better” I look. I am generally sun-averse anyway, but “pale” is normally fine by me.

My recent visits for Laser hair removal start with the question “Have you had any sun?” And my witty response. “Not if I can help it?” Anyway, asked for something to put on my seat on the way home. This was granted and off we departed for home. She asked me if I was OK, and I reminded her if I wasn’t I’d come to the right place. It was a hospital after all. Mission to get home, half showered and into clean clothes and back to bed my only goal for the rest of the day.

My lovely carer departs and I manage to sleep for two hours. Wake in time for an appointment with someone that thinks my appointment is on Thursday. Don’t know why this keeps happening, but it’s about the only thing I can read in my diary. Lazy standard rest of the day. Prepare the next week of pills, while standing in the kitchen. Feed Mika, eat standing up to better utilise time. Hope the Botox doesn’t kick in while I’m moving around my home. My leg will give out mid-step. Botox in my leg doesn’t make it look younger, just work better.

Botox puts over worked muscles to sleep for a few months, so other lazy muscles have a chance to build and take an even balance when the Botox wears off. This is to manage my drop foot and hyper extending knee so, I don’t need a knee replacement one day and I move and walk better. Who knew right? So, that was my Monday. Am I done yet?


How Good Are Old People
So, this is my fifth post in a sitting and I will finish this on a positive.

A few weeks ago, I was at the supermarket with a carer I don’t often have. I’ve had her before but it takes time to build a relationship with a carer so they can know my preferred products and how they manage my busy brain when I just wanna do Social Helen. Also how to navigate my low eyesight and the trolley and all the things.

We were at the checkout and she had unpacked the trolley and then moved around behind me to the outside of the checkout. In front of her was an elderly man and I mean Elderly. I caught sight of him in my good peripheral vision on my right. He had a trolley and was without speaking out loud communicating to someone on my left in my blind spot that they were there and they had a trolley. I turned to my left and saw the equally elderly lady who obviously matched the man on the outside on the checkout. I said to her “You are in my blind spot and I don’t have a husband, but I understood everything he was trying to communicate to you.”

I swear to God! This is what I love about the elderly. She responded with “Be careful what you wish for!” I asked how long they had been married, I think she said, “Sixty years” “You get less for murder!” I told her.

It’s a standard Baby Boomer reply to such circumstances which always sounds wrong but is very amusing.


Asking for a Friend
I wonder what people would recommend for someone with ADHD (hope it’s OK to refer to it as such? We all know it’s one of the many in the spectrum now just referred to as ASD?)

What would people recommend for the big projects that consume all your time, the playing with your Meds, drinking more or less coffee to get through the day and the tasks, then the smoking pot to come down at the end of the day?

Asking for a friend.

Think we have all been around people on the spectrum and seen how some cope or don’t cope. We have been on the cold face of receiving or cleaning up after them.

ASD in disability circles I’m finding has been the latest disability to be in the spotlight and the newbies or the young people now more women as its better understood the symptoms in women are different.

I don’t have a lived experience of ASD, just so you know, but I see people who do it well, I’ve seen the new young ones being all “You don’t know what! Bitch please!” I was diagnosed at 34 with my AVM and received all kinds of bullshit ever since.

It’s the low expectation of (Quote by Graeme Innes) “So people with disabilities keep having to deal with the soft bigotry of low expectations.” Now as well as swimming against the tide of negative attitudes.

Someone related to me suggested I might have ADHD too, I know I’ve seen comedians who joke about being recently diagnosed, by a friend and that its some kind of pyramid scheme.

So, too said family member. “Bitch please!”……No, I said “I’m a High Functioning ABI. Have I not suffered enough?”


Expectations From Others
Sometimes, there are little things about having a disability that you would never imagine or believe.

People will always imagine everyone treats me as a human being that deserves respect, love and support and that might feel fair and truthful for some of the time. However, on occasion someone you least expect will throw their emotional baggage at you they refuse to deal with themselves, I gather.

When I’m depressed, I hibernate to minimise fallout on others. I’ve found biting and hissing at others just makes them less likely to sign up for more.

It’s not for everyone. It’s not even good for a long-term solution for anyone with mental health issues. But I like to consider I’m taking responsibility for my issues and not projecting my shit on others. But other times, when someone wants to pick a fight with me, they will throw it in my face that I’m uneducated.

I’m sorry! Did you hear me?

About ten-years-ago I had an OT ask me “How far I made it in school?” I was offended. I finished secondary school. Then completed three years of Tertiary, Arts, sure, however, I’ve since completed a leadership course of which this blog was my project. I also did part of a Certificate IV in assessment and training but don’t even start me on that.

I never had to do a four-thousand-word essay until my first year of tertiary. My art history lecturer thought my presentation on Pop Art and the artists Andy Warhol and Roy Lichtenstein was brilliant. I know it may sound like I’m justifying but!

One thing I would never do is kick anybody when I’m struggling so I feel better about myself. So, you may be able to tell I’m having a hard time.

Sometimes, being one-handed, having half one’s eyesight, not being able to see. Work catches up on me. And as per I’ve some blogging to catch up on. I really don’t like blogging as a reactionary measure because I like to let the dust settle but maybe I need to rant.

Then I foresee many posts to context the ranting. Alas, it is 12.30am, and while this is early, I feel I should call it a day. Unpacking this shit always feels like unpacking dirty laundry.


Busy Life
Don’t know how this happened or when it stops, but if anyone wants to pitch in, I’m taking offers.

Lots happening since moving late last year and just when I feel I’m catching up, shit hits the fan and more happens and I’m behind the eight ball again.

Also, going through some crazy emotions and attempting to have people who are paid to do things for me and while I’m project managing these issues, they want to be tapped in for what reason exactly. I presume only so they can touch my funding and then get paid for assisting me.

So, angry. So ANGRY! ONCE I’M ON TOP OF ALL THE THINGS I WILL BE SURE TO SINGLE TASK and sit and give 100% of my ATTENTION TO BLOGGING.

MEANWHILE, ITS MONDAY AT 1.15AM and I am watching 60 Minutes online as I tap out these words. To be continued…


Angry
I have recently self-diagnosed well, myself with a new medical condition. It’s called being ANGRY. I suggested this via text to my GP who replied, “Not so recent!” and a recommendation to “Chill” never have words had the desired effect rather than a red flag to a bull. However, I gave him a “Hahaha!”

Every now and again I reach a level of intolerance to people just wasting my time. Not my GP, he’s always part of the solution. Not part of the problem. But then there’s everyone else.

For example, my tram route in Melbourne still does not have accessible platforms throughout. I think my route is only one of two. Ours is the longest tram route in Melbourne. There is no excuse! I mentioned it should be an agenda item at a local council meeting and was informed by someone new that it had been discussed at a previous meeting back in 1924. I just made up that date to be fair and its pre-dates the meeting it was discussed at.

And you know unlike that new council member I both attended that meeting and can look out my balcony to tell you there are still No accessible tram stops throughout, nor even the area they had promised to be achieved by late 2024. (That date is accurate! FYI!) The proof is in the pudding that it’s still not done.

I think this is part of the problem of why I hate email so very much. They just go back and forth not making me feel like much is achieved. Just people pushing responsibilities onto someone else, because people don’t want to do their job, or don’t know how to do something that’s been asked of them, so deflecting and avoiding a learning experience.

Also, to my great annoyance is when I must educate people on what should be included on an invoice. What the actual fuck people.

I’ve been project managing a little something lately that has been doing my head in. To be continued…


Enough
You know those blog posts you read that give you all the answers and a bit of TMI? This is that post.

Fifty-Two years with an AVM (Arterial Venus Malformation)
Migraines.
Disc bulge surgery.
Carpel tunnel surgery.
Hernia surgery.
Lost half my eyesight.
Endo diagnosis.
Hot fucking flushes.
And a UTI.

Have I not suffered enough? Which do you think is on my one last nerve? It’s ironically not the hot flushes, although.


Crisis
And here we are again, sitting with the intention to smash out my next batch of blog posts, to catch up on all the things. With the best of intentions I’ll see how this goes?

The best meme I’ve seen at the end of January 2025 stated, “This month was a long year!” and I whole heartedly agree.

That is to say by the end of 2024, it was a bit of a shitstorm. About a month and a half, ending in late November I was in absolute crisis. I’m relieved to say I rarely have had to resort to that particular word but it’s accurate.

You see, late last year, I moved my home. Well, just me and the contents. Not far at all as the crow flies, but packing up after seven comfortable years of more affordable rent the earth shifted and I relocated to my forever home.

The lead up to which, as much as I’d tried to have everything sorted and come together resulted in me not having the much needed funding, the extra carers and the so called promised help on the day. I’ve only just found the accurate word for how the big day moving was.

The following week after the trucks came, I had two Little Red Trucks (I only use them) and four people. They spent seven hours relocating me this one last time.

I have moved lots in my life. Plenty of times in my twenties, four times now since my disability and I’ve taken to making the statement, “I’M NEVER MOVING AGAIN! I’M GOING FROM HERE TO THE GRAVE! OK, I’M GOING FROM HERE TO THE FURNACE! WHAT! TOO MORBID? YES, I’M GOING TO BE CREMATED!”

When telling people about my new Forever Home, I’ve hinted at several things until I’m asked, “How much is the rent?” I smile just a little and shake my head in the negative. I’m never paying rent again. Quickly followed by “Don’t hate me because my father loved me!” Next.
