Communication

All posts tagged Communication

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.

Helpful Information

Published September 7, 2025 by helentastic67

Helpful Information 

Also, after moving into the building, I discovered weird things like my car-space is not accessible from the garage entrance on my side of the building?! Something else the real estate guy failed to mention! 

Seems the two apartment towers each on a different street and joined in the middle by a large communal garden and BBQ area has a carpark that was built in such a way I often describe it like a deck of cards being shuffled by a high roller croupier. 

Researching this tutorial has made me miss card games. Now I have other things to be annoyed about.

I attempted solitaire with actual cards in the early times of being one-handed. Soul destroying. Don’t do it!

How Good are Old People

Published July 13, 2025 by helentastic67

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.



You Get a Point

Published July 31, 2023 by helentastic67

You Get a Point

I’ve a new carer right now and it seems a genius time to mention my point system, as it’s as good as time as ever.

My Monday carer washes a nonstick frypan that I’ve used to make my Sunday omelette. She tells me the handle is a bit loose and asks do I have a screwdriver? Do I ever!

I look at her and announce, “YOU GET A POINT!” and I went for my Phillips head screwdriver. She saw where I got it from and knew where to return it when she was done. There is no whiteboard in my home where my carers can compete with each other for an elusive prize. My carers might never meet each other.

Before this carer left, I had reason to open my dishwasher to put something in. She had unpacked it and packed in a few things that had been stacked the night before when the dishwasher was in a cycle, I notice how she had put them in.

Sweet Jesus! It’s the weirdest thing about human nature. No matter how many times my carers unpack the dishwasher, they will always stack it completely different. She LOST A POINT!

It’s really an amusing way I communicate to my carers when they do something that makes me extremely happy. Not just little as well as big things they notice and take care of for me. The above statement issuing and taking points are always delivered with a sharp glance and a cheeky smile, so they know the point system does not have any relevance as to if they get to come back.

Oh, carers can also decide if they do not want to return. In case you wondered?

Self Advocacy

Published March 11, 2020 by helentastic67

Self Advocacy

So, help me God! There are some days Advocacy is needed for everything and the simplest things. Tuesday, I met with my Service Co-ordinator (in old terms my Case Manager) and I mentions to her again, I’m still yet to be sent hard copies of any of my invoices. I seem to have this conversation EVERY SINGLE TIME I SEE MY SERVICE CO-ORDINATOR.

Nothing changes, to be clear I’m not doing my part wrong. I’m not using poor communication/negotiation skills. It’s just people not wanting to do their jobs or not wanting to be monitored or held accountable.

So, I get an email with my invoices every month, which I can’t print, so I’ve asked for hard copies. I also now have to argue and debate it’s NOT EASIER on the computer screen. Because with my eyesight I can’t chop and change between two spreadsheets on my laptop to make sure my records of who turned up on what date for how long is the same as what I’ve been billed for. It’s no longer my money, but I still wanting to know the $70,000 is about making my life better, as it’s designed and not lining the pockets of companies and people who want to work smarter not harder.

It’s my opinion, the cost of printing my invoices and posting them out to me should at their expense, because they can absorb the costs.

They are not doing it for everyone, but I can impress upon people (other clients) they can insist on it. So, rehashing this every few months seems I mention it to my Service Co-ordinator, she then calls my Service Providers, who call me to argue and debate out of providing a service and be held accountable.

I’m pushing back.

And then, after a short tram ride home, after my one appointment today, I work my way to the door of the tram an while I stay on my walking stick is between my teeth and holding on the hand rail on the right hand side of the door I go to step down.

My tram line does not as yet have the accessible tram stops, so it’s a big step up or down to the road. I’m encountered by a hand reaching up, just near mine and a leg stepping up. I don’t know where she thought she was going since I couldn’t get down without the hand rail. She didn’t even look up to see me. She said “Sorry” but she obviously didn’t mean it, because you would think (crazy me and my common sense, right) that she would rethink what she was doing and stop and wait. No! She continued to attempt to step up. She was a teenager in her school uniform and twice as wide as me. (Not fat shaming, but suggesting she thought to use her size to intimidate me)

Do I sound like someone to dare try to intimidate? You bet. I put her in her place. Around the walking stick strap between my teeth I said to her.

“Are you seriously going to still try to get on this tram while I’m trying to get down?” and she waited for the split second it took me to get down. I just don’t understand how I need to tell someone they should wait for people to get off a tram, train, bus (This argument works for any form of public transport or transport even). Wait until people get off before you attempt to get on. Why is it so hard?

If only, then is their more room for you to get on. No?

FFS

Professionalism

Published July 13, 2018 by helentastic67

Professionalism

Professionalism

I confess to say, I don’t always come across like a complete num-nut, which is the assumption that all people with brain injuries can’t think for themselves, can’t process or understand and definitely can’t communicate or participate in social or business or “whatever” family?

Num nut

A few weeks ago, I rang an organisation that deals only with people with brain injuries. I’ve had some dealings with them in the past, however as their primary business/funding, is people with drug or alcohol ABI’s, my dealings have been limited.

ABI

As they also do some ‘housing,’ I’ve recently put in an application. I then attempted to follow it up. I rang, left a message, more than a week ago and when I rang, I came across so professionally on the phone, they thought I was a Case Manager. Ironic, much!

Case Manager

I was a little surprised and startled, I took my time answering her first question, “was I the client?” To which I did answer ‘Yes’, but because she didn’t hear me. She hit me with a barrage of questions. So, I went silent and she thought I’d hung up on her. Now I know I have a brain injury, but she works at an ABI company and all the people she would deal with on the phone could be in some way affected by an ABI.

Too many questions

So, at times, please one question at a friggin time.

Questions

To be continued.

Communication

Published March 12, 2018 by helentastic67

Communication

Communication

I often find how I communicate things somehow misses the mark. My mum, who I love to bits because she is my biggest supporter on Team Helen, often hears half of what I tell her and runs for the finish line, with it and then of course rants at me because she didn’t hear the rest of what I told her.

Half listening

Sometimes I will be writing about her and you will need to read between the lines because the lines because I won’t be able to say so. But not today…

Half listening 1

Today I asked my carer to take the meat off a BBQ chicken, that way I could freeze it and preserve its freshness until I needed it.

That is exactly how I communicated this task. Can you please take the meat off and keep it? No skin, no bones, no fat, Right! God help me. The barrage of questions, sometimes I go stand next to them to watch what they are doing or how they are doing it.

Questions

It may come across as intimidation, but today she was putting the skin on the bench…WFT…

Put the meat in the bowl and everything else in the bag.

Eventually standing over them, elicits the query “What? What have I done wrong?” And then at least it’s easier to tell them a ‘better’ way to do things.

Finding a better way

So, again I think I communicate things very well, people just don’t listen.

“We have two ears and one mouth. We should use them proportionately.”

Wise words from a colleague, once upon a time…

Rules-of-Effective-Communication

Communication – Part 1

Published August 11, 2017 by helentastic67

Communication

Communications – Part 1

I’ve been told/accused really of being terrible at communicating. I think verbally and written I communicate my thoughts rather succinctly.

Some years ago, I was expressing this issue with a friend (let’s call him Fred). Now Fred to be clear has several TBI’s (Traumatic Brain Injury) from a car accident, but let’s not hold that against him.

TBI

He suggested I do a course he did in communications. Fred told me he had thought he was really good at communicating, but having participated in the course, he realised even he could improve.

I told him, I had no time to do a course, no cash and no ability to get to a College or University. He told me not to worry about it. It was FREE and she would come to me! What? Sounds too good to be true. Fred gave me her number and I rang her and it wasn’t an actual “Course” but I think it was more of a study. I had to explain, who I was how I had “gotten” my ABI (Acquired Brain Injury). Keeping in mind I was born with my AVM (Arterial Venus Malformation).

Listening skills

I thought I was having a decent conversation who actually seemed excited to be working with me. That sounded weird, but seriously.

Then she asked me when I’d had my CAR ACCIDENT?

Car accident

What?

I was not eligible for this communication course.

What’s worse than that is, this list of things.

  1. I don’t have a communication problem
  2. People have a hearing/listening problem.
  3. All of these “research” trials are based on people with TBI’s because they can dip into the TAC bucket of money.
  4. No one is doing any kinds of study on the different kinds of ABI/TBi’s and how they are different.

 

I think my communication is different to other types of ABI, particularly TBI (no offense to people with TBI’s). So many more things wrong with this…

failure_to_communicate_meme