Sleep

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Circling Back

Published May 18, 2026 by helentastic67

Circling Back

This week I thought I’d circle back to last October. I read a recent post where I wasn’t sure I finished the storyline I was trying to share. 

As you know, life is busy when you’re one-handed. And I seem to only ever skim the surface on some topics until I hear back from others or other people do their jobs allowing me to get some items ticked off my lists.

Note, Lists, plural, not singular. Don’t even bother creating a list these days. What’s the damn point?

Some of you may recall October ’25 I had my third cerebral angiogram? Yeah, hate those fucking things. That’s the one where they pass a wire up from your artery in your groin, up through your heart and into the arteries in and around your brain. When placed in said arteries, they release little amounts of contrast or iodine. It’s hot, others have told me it’s actually cold. I don’t know if they have had one but I’m saying it’s hot because it feels like it’s on fire. In all the parts of your head that shouldn’t be on fire.

This was the procedure that has me now making bold statements such as “Helen cannot be Phenerganed” 

As preparation for the Angio, as I’ve mentioned I’ve had two previously. I reacted very badly to the first, where my blood pressure dropped in the procedure and a nurse literally started running round the room in a panic. Like, her running was going to help at all, or I was not awake and witnessing her panic. 

Seriously, I’m right here and I’m awake and conscious. Don’t panic, it does not help me stay calmer. So, I had a reaction to the contrast and the third Angio I took an antihistamine twelve hours before and another an hour before.

 Once at the hospital and in the pre-surgical area a discussion was had, with a nurse with a messy haircut and tattoo’s up both her arms. She was about my age or older and a particular tattoo looked like a purple bruise on her arm.

Think I’ve met this nurse before because I think I’ve had this conversation before. But not recently. I asked if it was a bruise and she informed me it was just a bad tattoo. I don’t have any tattoos, but I know they all tell a story of significance to them. Her arms were a canvas of simple lines and smudges. Hard to forget. 

And the discussion was had with the medical registrar about “Giving me a little something” Another discussion about whether they would use an artery through my groin or my right arm. As I only have the use of my right arm it was important I ask if I would be able to use my arm after? He told me it would be a little numb at which point I insisted please use my groin. 

I know it sounds wrong so I will explain at the top of your leg, both legs just next to your groin, or snatch as I prefer, is the artery that provides blood to your legs. They give you a local anesthetic and use a scalpel to slice open that location where they then feed into it a wire. I’m getting off topic. So, Phenergan. 

It allows you to be mildly sedated could be the easiest way to describe it. I was calm and conscious and aware of all the things happening. I didn’t like it, but you just lie there and let stuff happen. One particular blast of the iodine I knew I had pee’d. I know, really highbrow stuff here. It’s not so easy while being punched in the head from the inside and lying in a coolish room in nothing but a pair of tied on paper underpants, and a cotton hospital gown and a light blanket. But modesty persists and I felt compelled to mention. 

Just an FYI, Doctors couldn’t care less as the area they were interested in was purely my brain, not my comfort or dignity. I know when I tried to communicate this situation to the registrar, I was barely understandable. He told me to repeat for the nurse and I was again, not understandable. It was forgotten until much later.

Hours later, my carer returned and I was not ready to be released. As her shift was over and I would later learn how she had tried to push to extend her shift to get me home. 

Apparently, all three of my carer agencies had been contacted to see if I could have a carer stay overnight with me. My then support coordinator who had stated her boss had told her to turn off her phone at 4pm so she was officially off duty. Apparently, I was meant to have a friend stay over with me, but nobody thought to tell me. 

My next of kin, my mother is in her mid-seventies at this point and should not be expected to race down to care for me at 6pm. Not when she lives 3.5 hours’ drive away. They should have found a bed for me over night.

The kind nurse had tried to sit me up to get my clothes on me and I kept just falling down onto my back. My carer reporting to me later she offered her opinion in the form of a welfare check. “Helen is not OK!” I know right.

And I’m still not to the point of explaining how young male ambulance personnel was standing at the end of my bed while I was lying there cold and naked. It’s a very good thing I’ve got a good memory.

Alas, the owner of my third carer provider came to be my carer to get me home and settled. I ended up only being with that company for six months however that day, I was put into a wheelchair and wheeled down to the carpark under the hospital. I recall thinking it was too late to ask for a jab of tramadol as my left eye hurt and that’s the basic sign of a migraine these days and a jab of tramadol takes thirty minutes to kick in and would knock me out within that time so I could sleep it off. 

Then I was in the car, no tramadol. I ride shotgun, front seat passenger. I can’t get my left foot with the AFO into a backseat, and my brain does not like motion.  I have motion sickness at the best of times. Barely able to put words together I gave directions to my home. I directed the driver to pull under the building, so it was easier to get out. 

BTW, I was in my pyjamas and my new black merino wool jacket if you were wondering. So, not being dropped in a clear way on a busy street was some basic dignity. 

Went inside, upstairs. I remember sitting like a zombie on the couch. I remember constantly asking my carer who she was/what her name was? Took off some layers and had a shower. Learned the next day said carer did not follow any of the hand over notes, as I was not supposed to have a shower. 

I was home and alone around 8pm as my carer had asked where my spare room was for her to sleep. My second bedroom is a study and definitely does not have a bed in it. I had offered her the couch to kip on. Kip is a British term I picked up in 1994 when I travelled there. It’s to have a nap/or a sleep. She declined. 

Probably should mention, an overnight shift costs a great deal more. I’ve never needed one thankfully, but there is a financial difference between what considered an “Active” or a “Non-Active” shift. An “Active” shift means you will not get to sleep; your client is high needs. Not for the faint hearted. She did not stay over but left a few notes that she had left at 8pm after I recall discussing I would just go to bed and sleep. 

I believe part of the reason you are suggested to have someone with you so you don’t sign some million-dollar contract in a state not for making wise financial situations you can never undo. Because that’s likely to happen, in no world ever.

Remember, I could barely string sentences together, retain names or information but my example stands.

Chronic Pain

Published March 10, 2024 by helentastic67

Chronic Pain

So, here at 51, I’m learning new things all the time about chronic pain. I have a terrible sleeping pattern. If you didn’t know? It’s terrible, I love a good afternoon kip. I try to keep it just to the weekends, but it’s not always a given. It’s not seven days a week, most people would blame my years of working in hospitality. I always thought working in clubs had its own category, but apparently, it’s lumped in with restaurants and cafes.

Then, there’s having a brain injury. Also, messes with your sleep. Then, disability, depression, taking anti-depressants, etc.  then the racy Lady Hormones. Must I go on? I mean, I hear rumours about people getting eight hours of sleep a night. I mean, who are they? They must be killed.

But the eating. I didn’t know fitting in three meals a day every day was hard for people with chronic pain. I just thought it was just me. I am not a morning person, so I sleep later.  I therefore eat breakfast later. I have a light breakfast then get out and do stuff. I don’t prioritise lunch. I’ll eat lunch late, then I’m full. I skip dinner a lot. Sometimes, I’ll have the motivation for dessert. If that’s ice cream, because that has a separate stomach, right? Like, cows have four stomachs.

So, I know my brain and my body is constantly going between I’m digesting, going into a food coma, and I’m happy, but too full and it’s all a vicious cycle that I don’t know how to change.

Did I mention, after my kip on a Saturday I have my later lunch so much later, people have been known to comment that I lived a rather bohemian lifestyle? Yeah, that happens.

Note: any suggestions of killing or murder is not an actual threat intended to harm. Do not go and kill people that sleep better than I do. Just gently nudge them and remind them they don’t know how good they have it.

Merry Christmas from Hellonwheels

Published December 24, 2023 by helentastic67

Merry Christmas from Hellonwheels

It’s that tough pointy end of the year again and I’m in a battle of Tetris-Like levels with my fridge and only me to eat it.

A conversation with my cousin on my birthday at the end of October instilled in me, I would be very happy to be able to sleep for the whole week of Christmas, eat and catch up on TV.

Here’s to staying home alone, where I don’t lose my independence and I already know I’m going to be spending time alone. Its weirdly better than being around family, but still being all alone.

I might even be able to talk a carer into making me a ham and cheese toasties and putting it on my bedside table.

Here’s to an easier 2024 and for December not to fly around so quickly. So say all of us.

Worst Sleeping Pattern Ever

Published July 17, 2023 by helentastic67

Worst Sleeping Pattern Ever

Anyone else have a terrible sleeping pattern? No! Just me then? Regular conversations with friends:

Me: I got to bed early last night! (My point already is it didn’t help…….)

Friend:  What time?

Me: Before 1am! (I was still awake at 3)

Friend: That is early for you!

I’ve said for years “You can take Helen out of the Clubs! You can’t take the Clubs out of Helen!”



Migraine Helen

Published April 10, 2023 by helentastic67

Migraine Helen

If this post could have a longer title, it would be “How to get a migraine in one easy step!” What’s that? I imagined I could sneak a little fun social catch up into my boring life without consequences.

Anyone with disabilities will tell you, they will try every now and again to put something fun into their life to break the monotony. But while its great at the time it always comes with a cost. I’ve been trying to get to something in the inner West for about six months. A friend goes to something every Wednesday and I’d booked my Friday carer to go with me, her plans changed and another carer was able to assist me. I’d arranged my local artist friend Larissa MacFarlane to join us. She’s the friend from the radio interview I did from a few weeks ago. You can catch that interview again here if you missed it.

Lara was also the driving force behind the advisability Murals “Disability Pride!” Already, I digress, the event I hear you ask? Drag Bingo. The venue required me to get up and down a flight of stairs. I haven’t been to a Drag show for twenty years, back at the (the greyhound) But Drag and Bingo? You will never hear the word “Bitch!” Repeated so appropriately in the same night. Zena Ghost was her name; you can see her on Instagram. She had three costume changes throughout the night. The last one she had worn to the recent Melbourne Grand Prix, she had mentioned three Drag Queens had been employed for the event, they were told to dress “Conservatively” I don’t think she hadn’t? She finished the set with Rihanna’s “Shut Up & Drive!”

If you want to read more on the Melbourne Grand Prix other than my experience while working in a big shed in Richmond twenty years ago, hearing the cars practice the weeks leading up to the race, hearing the news helicopters overhead and living in Prahran, close by in the ‘90’s. I’m just saying. Noisy and Loud! So, happy living Northside during footy and Grand Prix season, check out William’s blog. He knows what he’s talking about. http://www.williamsperfectride.com

But, I digress again. Here’s how Hell gets a migraine? Sitting this close to the stage. It’s too close. With the lights and the loud, the 360’s sensory overload. It’s too much.

Oh, yeah, and all the audience participation. The Pronouns being thrown about just needing to be included. Calm down? I get it’s a safe space for the LGBTQI+ community but when the Drag queen found a badge of a footy player, she looked towards the table of Hetro Admin chicks to see if there were any takers. Sorry if you are into AFL or Rugby, however in Australia the players of these sports have not had the best behaviour in public or otherwise and have rightly been publicly shamed for posting poor social behaviour on social media. Female comedians have made jokes that if straight women stop having sex with them, we could breed them out. Because apparently bogan sport’s men breed bogan sports people. Sorry, you all know it’s just the men, elite sports women don’t do stupid things in bathroom urinating and catching it on smart phones to later posting on social media. Smartphone, it’s an oxymoron, isn’t it?

So, Thursday, the day after Drag Bingo, Migraine Helen, it hurts! Feel awful, I normally describe myself as having a migraine every day that ends in “Y” but they are the Walking/Talking kind of migraine where I can still manage a semblance of adulting. But occasionally I need to reassess my day and greet my carer with a succinct “You need to listen to me. You need to hear and understand!” Because the first mission is for us to get out and get a Jab of Tramadol in my arse, then it’s back home to bed before it knocks me out. So, any goals that needed achieving had to be communicated effectively before I’m out. Thursday being the day before Good Friday means my shopping and any Hunter/Gathering must get done as Good Friday is a public holiday. My regular Girl Friday who is often out doing my shopping on autopilot was not my Girl Thursday so I’d had to tell my carer which milk to get and which kitty litter, etc.

I knew I’d be spending my Easter weekend alone on my couch watching TV, eating good food and chocolate. I just hadn’t expected I’d be doing it hung over from a Migraine and I don’t even drink! I do not know how people that drink do it.

A regular prize in bingo was a shot of “Wet Pussy” (A short glass of some sort of potent Peach drink), the woman at our table that won it several times but donated it to someone else because she didn’t drink. Drag Bingo is definitely a drinking game.

Highly recommended if you wanna see an impersonation of a Britney Spears-era 15 year old teenage girl dancing in her bedroom like no one is watching. Not a negative. Then Drag Bingo is for you.

Meanwhile, it’s Easter Sunday morning 4am and I can’t sleep. Hence, I’m writing this.

Meanwhile, Melbourne is also in the 40th year of the Melbourne International comedy festival and I went all out and have five tickets this year. (I’m doing hard Mass and it’s not been running 40 years, but it started in 1987. Can you do the sums? Please.

My first comedy show is tomorrow night as in Tuesday. So far so good. The next is Saturday night and the people that I got tickets to go with me have already pulled out so I’m trying to find two others to go with me and make sure I get home in one piece.

Hope everyone survived Easter.
And hit Like!

Inconsistency

Published November 9, 2022 by helentastic67

Inconsistency

Wow, anyone noticed lately I’ve been a little less than consistent? Yeah, I really don’t like being inconsistent. I’m actually always found ways to have routine, even when I did not have study or a full-time job, I built things and life into a routine. Maybe building this and consistency made it easy to keep my AVM be unnoticed for so long. Maybe it’s how I coped. Or the signs of it, I don’t know, it’s a working theory.

So, if you have been following, you know there has been chaos, emotional trauma and grief and my normal routine has been thrown out of whack.

Two brief visits to the country have meant returning home I’ve needed a week just to catch back up on the normal. People assume having carers is set and forget but it requires ongoing maintenance. Having events out of the norm means shuffling, more intensive organising stuff, Admin, housekeeping. It all starts to back up on me. Mail, letters that require action grows, phone calls, emails, new groups plus Zooming.

In times of stress, I’ve always needed more sleep and every now and again I get a migraine where I just can’t function and I’m in bed by 3.30pm and I’m hungover for days despite deadlines and events.

On Thursday last week I went to the AGM of the NGO I’ve volunteered with for over ten years. I’ve been a voting member for 4-6 of those. You member the group that was under valuing me and bullying me. Yeah, that one! I stepped down. Even by choice, with all the other grief and stuff in life to deal with, it was a tear in the corner of my eye moment. I was asked to stand so a room full of mostly strangers could see who I was and asked if I wanted to say something. I did but wasn’t in any state to speak. Nor, would they have wanted to hear what I would have said.

Add to this my carer wore perfume that day. She made the statement “it was her thing!” I’m like, “Get another thing!” And then the migraine to boot.

On the Sunday, I did a BBQ gathering in a local park to celebrate my recent 5-Oh! And upon arrival found the BBQs did not work.

Having some WTF Moments of late, and not coping. Things continue to slip. It’s now practically Wednesday and Tuesday came with two carers arriving because I forgot to cancel one and it allowed me to do some outsourcing and some catching up. My small stack of hospital referrals and letters for appointments has gone. And while this is not the post I’d intended; I will start on the next. A BIG AWARD TO BE REVEALED! Some updates on all the important things and finding new ways to write since I’ve got bigger issues with my one good hand.

TO BE CONTINUED………



Sleep

Published December 5, 2021 by helentastic67

Sleep

“You cannot bank sleep Helen!” I cannot tell you the number of times Ms Jillian kept saying this to me.

I listened, but I’ve never learned, I’m being honest and I have realised, all my life I have always had a TERRIBLE sleeping pattern and God help me, I can’t change it.

So, on the weekend in the afternoon, I get the best sleep I will have all week. That’s when I’m trying to catch up on the sleep I didn’t get during the week.

My new Ms Jillian mentioned in my first appointment, my sleeping pattern and I straight out told her she needed to choose her battles. She thinks I was kidding, I’m not.

Hot Off the Press – 19th May 2020

Published May 19, 2020 by helentastic67

Hot off the Press!

Sometimes, blogging about the here and now and the most important reason to blog gets lost in all the detail. So, being careful to consider someone else’s privacy.

Imagine being 29 and all you want to do is survive, to thrive, with a pre-diagnosed medical condition, you have a stroke!

Again, not my story, but a friend.

After over a month in hospital, being tested for everything including CoVid19 and with no answers. Sometimes, this is the way. No answers.

Being kept company by parents, day and night so nurses give the best care. The same care they would give to anybody without disabilities or pre-diagnosed medical conditions. No matter what they are. A short stint in in-patient rehab, where physio appointments went cancelled because of the low expectation of recovery. Parents needing to still be there to advocate for their child to make sure they get what they need.

What to do now?
Well, the hospital and the patient, to be fair want the patient discharged ASAP. The patient obviously very keen to be home where his parents can arrange the best for their child. Well, adult child and the parents could get a reasonable night’s sleep, to continue to love and care for their child as only parents can.

So, in a perfect world, a caring parent/advocate/carer applies to the NDIA for a change in circumstances, so the patient can go home. Extra carer hours can be utilised to provide adequate care in the home. Plus, some much needed respite for the parents. And sufficient physio and Occupational Therapy to return to at least the bare minimum or return to the same level of independence my friend had in the comfort of their wheelchair, not so very long ago. Is it too much to ask? Is it even possible? I guess we don’t know until my friend is in the best environment for this to happen. Which is clearly at home.

They can’t go home until these things can happen.

I don’t know about anybody else, but I don’t have the funds to pay for these kinds of things, so the NDIA, a government organisation should prioritise these things, no? Let’s see how long it takes for my friend to be able to go home.

And lastly, I’ll leave you with this great quote that I only know about because a great Aussie disability advocate used it.

Disability is seen this way………
“The soft prejudice of low expectation!”

Please share through your networks to show your support. While these stories go untold people get away with providing sub-standard care. Let no single person with a disability be left behind!

Cheers,
H

Sleep

Published January 6, 2020 by helentastic67

Sleep

There is never enough when you have a brain injury. Never enough. Add, crazy bitch hormones as I call them, the Peri-menopausal hot flushes, sliding into the pause.

More sleep, much, much more sleep.

But, finally following up on my visit to the clinic. Yeah, I’ve been busy and am now circling back to the thing. I had to go to an older building that is on the same block as the St Vincent’s Hospital in Fitzroy. Seen this entrance for years wondering what was in there. Well, now I know.

I went in a little early, off Nicholson Street and was shown to my “room”. Mum had been to a sleep clinic in the country and told me it would be like a self-contained hotel room.

Mine, no it wasn’t. The room had a single bed – expected. An armchair, nice place to put suitcase and sit to take off shoes and AFO’s – check. A small hand basin, oh nice. Where was the bathroom? Apparently, there were only three of us in the inn that night, me and two men and I got the room closest to the ‘Men’s’ bathroom.

Super! Where’s the lady’s bathroom? Oh great, no shoes or AFO’s. I’ve gotta go for a nice long walk to the lady’s bathroom. Past the waiting room, finished with a big vinyl chair in Orange.

Now, I’m a kid of the 70’s, we had an orange car.

And an orange kitchen bench. (Yes, mum! I hear your voice, it was Mandarin) Sue me! I’ll let you be the judge.

The Doctor who was showing me around was the same age as me and we bonded over the orange of our childhoods.

You know those moments you meet people and if you meet them in completely different circumstances, you might become friends.

We bonded over the fact that neither of us live with other people. I bluntly stated “I fucking hate people!” She laughed and said I was her spirit animal.

 

 

Connections

Published November 3, 2019 by helentastic67

Connections

That moment when you realise you didn’t sleep with the right people when you worked in clubs, back in the day. To be fair, I didn’t sleep with anyone back in the day. Well, not no body, but boyfriends. Clearly, not the right people.

Today, I attempted to share my administrator’s son’s Crowdfunding page to people I used to work for, back in my club days. Said son has CP (if your recall?) mentioned on the 22nd May 2019.

https://hellonwheelslifeonehanded.wordpress.com/2019/05/22/todays-lunch-22nd-may-2019/

And you guessed it. Deleted!

FUCK I HATE PEOPLE!

I made people rich, drunk and got them laid. What did I get for all my clean living? Screwed!

I hate people.