Fresh Friday

Published December 20, 2019 by helentastic67

Fresh Friday

It’s not every Friday, it’s not even every other Friday but when it happens it’s fresh! And I’m writing it the day before it goes live because it’s time sensitive and needs to be said. That is because Christmas is only a week away – not even!

While there are many pluses to being a single barren spinster, there are a few negatives and the main obvious ones is the dilemma of Christmas. Before you ask, no my family do not read my blog! But it is also to say, despite the situation at Christmas time it’s not anyone’s fault. No one is to blame it still goes under the heading, it is what it is.

It’s just kinda crappy!

At Christmas, my family is in opposite ends of the state. My mum and younger sister live in one direction close to where I grew up. My older sister and her partner, sorry fiancé live in the other. My father is still in my hometown and I only generally get there to see him when I go to my mums at Christmas for about a week.

While arriving at my mums in the countryside, opening the car door usually late at night upon arrival, brings an instant breathe of fresh air, I fled with pine trees and wood smoke. But from the moment of my arrival, I need someone to help me do everything. There is slip and trip hazards everywhere. Also, doors that must be kept closed to keep this cat outside, my cat inside, me away from cobweb-hazards.

And while my mum very generously gives me her bedroom for the duration of my stay, I’m down the other end of the house from activity. It’s hot and isolating. We all like different things but mine is not at all in line with my hosts. I pitch in by way of packing and unpacking the dishwasher and usually upon arrival I get a wave of OCD, because so much doesn’t have a home, and they have both been so busy making it to Christmas the dust kick-starts my hay fever and I can’t sit still for collecting things for recycling, etc and that just drives them insane that I can’t sit and relax.

We are all tired and we mostly all go into a kind of survival mode. I hibernate, watch my TV shows and sleep.

There is a day I go to visit my high school friends for a few hours, I browse my favourite shop and go visit my father where he has arranged his two brothers and sister in law to visit for afternoon tea. My Aunty always asks, “do you still like honey bread?” Do we all of a sudden stop liking chocolate? Or needing air to survive? And I go home with honey bread. It’s rhetorical right?

My older sister and fiancé are dog people. They have three. Why are they not labelled crazy dog ladies??? No! Of course, it’s just cat-ladies that get a bad rap. They generally do their own thing Christmas Day, this year being the first Christmas my future sister in law without her mum, sadly.

In recent years, we have managed to get together for what I refer to as a lovely lady’s lunch. Usually early December, somewhere a bit special. This year, I offered to attempt to arrange where and when and something we could all afford to contribute to. We all have vastly different fluidity of funds. (That’s a lot of F’s, and none of them my favourite version) You gotta give me a point for that? And after early efforts it became obvious it was to be put off for January, I was fucking (sorry, not sorry!) busy and everyone was proving hard to please. So, I dropped the ball.

So, it has not happened. I made the decision to spend Christmas home with Mika in air-conditioned comfort where I can at least have my carers every day and maintain my independence without need for someone to stop what they’re doing to open a door or move something for me. Not to mention our blend of intolerable foodie intolerance’s. No turkey? Last year I was informed mum forgot the stuffed turkey roll only 30 minutes north of Melbourne in a 3.5-hour drive to the country. Take me back and no Christmas pudding! Because the youngest hates peel! What?

So, this year I decided to go it alone at home and I’m ok with that. I’ve got enough ham to last me a portion a day for two weeks and some for the freezer. Not yet sorted a pudding, but I can cope with that. Besides I have rum balls.

I’ve also been managing the guilt and expectation of others, at the last minute my mum has asked if I can invite some of my neighbours over on Christmas Day? Because Christmas is supposed to be about family and being together and putting all of your shit aside for one day, so you can celebrate together and I don’t want to inflict myself upon others and ruin some other family’s day. I told my mum the people she suggested I could invite over we’re going to be in the States for two weeks and the other neighbour is Muslim, so no ham for her, or rum balls.

So, as a gentle reminder to those with plans for Christmas Day. Please check in on a neighbour or elderly person or anyone you know who may be socially isolated. It means so much to hear a friendly voice when you feel you are all alone.

FYI, I’m off social media Christmas Day and both my numbers are silent. So, if you want to reach out be prepared beforehand.

Now, on a more upbeat note: I do have a really upbeat post planned for Christmas Day, so stay tuned. And JD, you will get your cat-friendly Christmas tree!

Cheers,
H

Clayton’s Holiday

Published September 23, 2019 by helentastic67

Clayton’s Holidays

There was a drink back in the 80’s and I has become part of Aussie Pop Culture references that crosses all things. The ad was for a drink (beverage) called Claytons.

It refers to it being the drink when you don’t feel like having a drink. A drink without being alcoholic. So, this is a post about a Clayton’s holiday. Get it?

About five years ago, I was with an agency that arranged holidays (group holidays) for their clients. I was able to and included on two holidays, which was really nice as I think it’s been about ten years since I actually had a holiday and even then, that was to Tasmania for two-three nights.

So, the group holidays work out to be only a half day drive from Melbourne and only away over night or two. The other client’s range in age from five (one client’s daughter) to sixty-five (maybe). There were two mini buses with wheelchair lifts on the back (two wheelchairs in the back of each) and usually a car.

I usually bags the front seat of the mini bus (I will do a polishing motion on my backside and one of the carers will effortlessly lift me and deposit me in my seat). Yeah, I do that sexual harassment for the ladies. But I won’t allow a male carer to man-handle the goods. (I’m not light these days, but one lady just effortlessly lifted me making me feel so light.)

Being on a little get away with a bunch of strangers and three or four carers means you have a polite but temporary family type experience.

I always pitch in to help prep a salad or something in the evening as we usually stay somewhere we have a shared meal where ever we stay on the first night, as most meals are eaten out.

The first holiday I went to we stopped on the way back to Melbourne at an outer Melbourne suburb for a lunch and a little adventure.

A friend lived there, so I suggested they join me, so I could catch up with them. Said friend had recently been diagnosed with something quite nasty. They are still in that honeymoon stage of diagnosis where they have had the sugar-coated version of their diagnosis. Goes something like this “OH, you only have 3 lesions…”

Note, privacy being maintained here, yeah. This medical condition is such that when people hear I have a brain injury, I tell them, “Hey! It’s okay, this is my bottom line right now. At least I don’t have XYZ.” Because XYZ is degenerative. It gets worse. It gets shitty. I just gets’ worse.

So, this friend joined my little group of holiday buddies and I briefly introduced them to the group. I’m going to say, I’m terrible with names and I’ve been around this group of people with disabilities now a few years, so in a little desensitized re: medical conditions.

My introduction went like this;

“Brain Injury, MS, Stroke, Stroke, Oxygen deprived at birth (Brain Injury) etc, etc”. And I finished with referring to one particular person in a wheelchair (of which there were five) but the last person I pointed to had the XYZ my non-holiday friend has. “That will be you one day” and they paled considerably.

To be continued

Tears

Published April 22, 2019 by helentastic67

Tears

There are sometimes these days when I have a superpower, I never knew I had. I can make my carers cry. What? I know, it’s not on purpose.

It’s often the best conversations with my carers about all things ‘Helen’ (for want of a better term) the things that have moulded me and made me the person I am today.

This particular day, I told my carer about what it was like in the early 80’s in my family after the death of my fifteen-month-old sister.

She had been born on my eighth birthday and for fifteen months I helped bath her, change nappies, do “mum stuff” and we had one birthday together where we had an Ice Cream cake and we were both sick. We have a photo to commemorate the day. Very understated and in the last month of her life, she was taken to the local hospital in the country town where I grew up. The doctors, I believe misdiagnosed her, but by this stage she had already likely had a stroke. She was flown to Melbourne and within a (hear me flown to Melbourne.) month she was gone. My parents had to make the decision to turn off her life support.

I recall a family visiting us and the father distinctly placed a dining chair in a location, so he could sit with his back to a photo of Linda (that was her name) so he couldn’t see it.

There is an assumption when a child dies, that you should rid your home of all the photos and things that remind you of them, almost as if they had never existed, which seems wrong.

To be clear Linda died from a huge tumor.

After a while, because family and friends just didn’t know how to help or were just too sad, they just decided to stay away.

From nine years old, for a good few years, life was really lonely. I then told my carer a story of a friend of mine in the ABI community who passed away about six years ago.

I had to stop going to the place I would see him, because when my taxi arrived, I would be crying silent tears and the poor driver would not know what to do (poor bastard). I had to stop going, but whenever I return for a rare one off gathering, I sat somewhere I cannot dart my eyes towards the picture of him. I used to get through our gatherings always casting a look in his direction and we seemed communicate so much with our eyes. Anyway, more of him another day as I can feel the tears.

So yes! My superpower is I can make people cry, but it’s usually when my voice breaks a little and in crying.

Next time I want a better super power. Feel free to comment below as to what your super power is or would want it to be.

No cliché, X-ray vision or invisibility please.

Alone

Published March 15, 2019 by helentastic67

Alone

Every night I sit on my couch with my cordless phone, on the off chance a family member thinks to give me a call. But do they? NO.

Sitting on couch 1

Social media is the same, I message a friend and I’m lucky if they reply, I realise I like to book a committed catch up to see people. Coffee, lunch, a film maybe. Something? But I can be content with a reply, a reply and telling me what you are doing is still nice.

Sitting on couch

It’s not lost on me that others are busy, they have all the things I don’t. Family, a significant other, kids, no kids. For crying out loud. I get it. I am without a job, a mortgage, holidays to plan.

Things I dont have

Would it kill people to send me a message? I initiate all contact with friends. I have friends that are tired and busy and they still make time for me, for lunch or something. When I see them, they commit to being sociable with me. We have enthusiastic, intellectual conversations. It is nice, it is rare.

Intelligent Conversation

I completely get that people think I’m bitching, whinging and moaning, because they only ever see me when I’m at my best. They only see me ‘smash-it-out’ they don’t see me when simply rolling over in bed makes me want to hurl.

Bitching and Moaning

Family – Part 3

Published March 1, 2019 by helentastic67

Family Part 3

Now, it’s a week later since I wrote the previous post, so having lost my train of thought, forgive me if this post seems disjointed. It seems that many people would claim their family is fucked. (had to be said) However, brain injury and disability brings out the worst in families.

Family and brain injury

You like to imagine, families can put aside their own issues to rally around the person with the shittier situation.

But, No! I have family members that don’t understand my brain injury, don’t want to, or just figure they will get on board ‘Team Helen’ when the only team player (my mum) on Team Helen is no longer here.

Not team Helen

My mum is almost seventy now, I love her so and I don’t think it’s fair my much younger sister be expected to take over one day.

My father, who I also love and respect because he’s my father. I only see once or twice a year because I make the effort when in the part of countryside near where he lives. I can never stay over at his house where he has plenty of room, because I’m not having my father help me after my shower. Seems a fair compromise.

Shower

If my father has been to Melbourne in the last fifteen years, it doesn’t occur to him to visit and I’m the only daughter of three that has regular contact with him.

I think my family are all in their own world and my mum is the only my family member to spend any significant time with me, to solve problems, do forms or paperwork and now she is older and because her memory has been affected by a rather lengthy medical procedure, if she starts something with me, but takes it home to complete it. It’s not getting done.

Problem solved

She will have every reason under the sun for why I can live with a half-baked solution even if it’s me being $30 short on my income for a debt I rightly don’t have, and she is happy to keep calling every 3 months when the government agency must be contacted to have them not take any more of this from me, but this is how it is. It’s easy for family to ignore what I need because they don’t need those things. They will offer solutions that don’t consider the big picture.

Family

I’m the only person who lives where I live full time and sees the situation in its whole. All the fall out if something is overlooked and the changes to my environment that may impact my health and home. (Referring to build up of moisture in my home from wet laundry or even just if I buy the wrong kind of clothes dryer that leaves more humidity and moisture into my environment) And just how exhausting it is every single night in the colder months to re-hang my washing inside on other racks so they can continue to air-dry inside.

Air Drying

Winter is approaching and it’s looking to be my second winter here without a clothes dryer still having not recovered from buying my front-loader washer a year ago outright.

Not recovered

Now, I’m sure this subject is far from covered, but I’m sure to circle back at another time.

Family – Part 2

Published February 25, 2019 by helentastic67

Family Part 2

So, it is to say, I think health issues, brain injury, disability, all of it takes a toll on families. I’m lucky, I still have both parents, however my relationship is different with both.

Takes a toll 1

Divorced how for over twenty-five years, my mum will drop everything and has to come and be with me, sit by my bedside, drive me all over the place, move me countless times and on one occasion even shower me. (Yeah! Yet to write about how that came to happen) Yet my father whom I love, I have to guilt him into helping me, which is usually in the form of well, most recently, bond, removalist costs. So, nothing to sneeze at, but guilt into helping me.

Guilt trip

I also have two sisters (surviving), one older and another sister much younger. Despite the closeness in age between my older sister and myself (two years) we don’t see each other often and the two times in my twenties we lived together has put a wedge between us.

Sisters living together 1

My younger sister is almost sixteen years younger and keeping in mind she was young, I changed her nappies and as a youngster our experiences as siblings as children and “whatever” we have all had very different experiences.

Changing nappies

My younger sister, you could say has been raised by a single parent with older Aunties (I’m the cool one, of course). Also, I’m the second child, a confused second child, as when I was eight (exactly) my younger sister was born and died fifteen months later. After being the second child again, I was the middle child again, at almost sixteen, hence the confusion.

Second born

Family – Part 1

Published February 18, 2019 by helentastic67

Family Part 1a

Family – Part 1

As you may well imagine, I have a network of people I know with brain injuries and the simple thing about brain injuries that there are no two alike. No diagnosis is the same, the same treatment, recovery etc. Finding? Don’t get me started on the finding. However, suffice to say I recently heard one in my network say her settlement date was looming. I’m sorry WTF?

Settlement looming

They still live at home, while my age they haven’t lived out of home and when they visited my home some years ago, she wandered around asking if each bit of furniture was mine. Everything in my home is mine. I don’t rent furnished homes.

Still living at home

So, I wasn’t sure how she could afford her own place in such a great location, however when discussing this conversation with another her reasoning was simple.

Great location

“She said, her family are assholes.”

For all sense and reason, I think she wouldn’t argue with me when I say for what she has told me, her family is the same.

Family Part 1

I know she recently told me her family and cousins all went away for a weekend of a week and didn’t invite her. Huh? What?

Family weekend

When she asked why, she had been overlooked? She was told, because of her chronic pain, they thought she wouldn’t want to come.

Chronic Pain

Now, let me just suggest, when you suffer chronic pain, it’s never ending, no matter what you do or how often you can be guaranteed it will return and be with you forever. No matter where you are.

Chronic Pain 2

So, if you swim, do yoga, take pills, sleep a lot, you will find a way to do whatever you need to, to cope and sometimes a change of location makes all the difference.

Change of Scenery

Question Time

Published January 4, 2019 by helentastic67

question time

Question Time

If you are not at all familiar with ABI/TBI or even disability, let me give you a very simple piece of advice. Never, ever, ever bombard someone with questions without time to answer. Actually, that’s relevant to decent human behaviour, however it’s even more important to people with an ABI or simply a disability.

one question at a time

Now, I’m very lucky I think and process quickly, however it’s not normal for anybody with a brain injury.

My mum has been known to ask a question when helping me move house and by the second question, I answer with a further “Yes, No, No, Yes, No” and she will ask “what are they for?” to which I inform her “Your next three questions. We laugh and all is well.

answer mums question

However, it’s common someone else I’m related to who doesn’t spend much time with me will throw a question at me. (Note; How I’ve kept writing this topic? Because what the hell, my family don’t read my blog anyway.) I suspect that’s common for a lot of bloggers.

stupid question

Moving into an apartment has meant over the winter I will need to rely on a clothes dryer to get things dry and I don’t have one. I’ve already upgraded my washing machine to a brand-new front loader, so I use less water and it spins better. I now need a dryer which will sit directly on top.

washer dryer

‘Someone’ stated to me. “You probably don’t need one.” Then proceeded to attempt to convince me I could visit a laundromat and rather than wait for me to explain how that just couldn’t work, I am assaulted with reasoning and assaulted with reason’s why going to the laundromat with a pile of clothes, towels, sheets, heavy blankets (they wouldn’t go in the dryer).

laurndromat

Eventually, when this person paused to take a breath, I pointed out I would injure my back carrying a plastic tub of heavy damp items. In reality, I would have trouble getting it out of my apartment as the door is heavy and awkward.

apartment door 1

I would need to put it down to dig out my swipe card to use in the lift. Again, putting down my laundry basket (these days a square plastic cube) and picking it up again. Once on the ground floor, I have to press a button to close the entrance door, then get the door open, pick up the cube and get outside.

laundry basket

Did I mention, I use a walking stick when out? Do I need to finish describing the ludicrous mess (is that a word) of that suggestion?

walking stick 1

Sometimes, family will do their very best to convince you of another way so you don’t need to spend that money. They don’t need to help you do ‘that’ thing and then they don’t feel inadequate or pressed to fit you in their lives.

family assistance

It’s great to be loved.

to be loved

Hostage

Published December 24, 2018 by helentastic67

Hostage

There is a reference I often make to what it’s like having a disability and I’m certain people who have more severe disabilities than I, feel this way.

Disability Hostage

Now, I also premise this by saying I’m pretty sure my family don’t read my blog. So I’m good to go. I can write what I like.

Let me just say, the breakdown of my family is this. My parents are both still amongst the living (not complaining), they divorced when I was about twenty-five and I knew it was coming for the ten years before that. I have an older sister by two years, who I see once or twice a year (she lives closest), I have one surviving younger sister (16 years younger) who lives with my mum. My parents both live three and half hours drive away, my father, I see at Christmas when I’m up that way. He won’t travel to Melbourne to see me and if in town, he won’t bother to visit either. He has not seen most of the places I’ve lived, in the last twenty years. I think he’s seen one, he doesn’t call me, I call him.

Family

I speak to my mum twice a week and while that’s five times less than it used to be, we got along much better than we used to. Mum comes down every so often for serious appointments and such.

Ah, background done. Now to my point!

During smiley holidays and such (Christmas, Easter, what-not) I will go to spend time with family. It’s that or stay at home alone. So, I go and then I lose my independence immediately. I have my mum’s bedroom and I hibernate. I want a shower I have to negotiate when someone is prepared to assist me if I go outside, I generally don’t step off the verandah as the last time I went outside my mum called to me: “If you go for a walk be careful by the water tank there’s a snake over there!” I promptly went back inside to relative safety. Motivation to go anywhere is hard to draw on.

Snakes

To go anywhere requires someone to drive me either twenty minutes to a decent meeting place with medicine(coffee) or an hour where I can arrange to meet friends who might visit family once a year at Christmas time. Any of these adventures requires money I don’t have and logistical nightmares of being able to get home again when I need it.

Drive for coffee

I put my things in the fridge and when I go to get them out again, two other people have moved them to get to other things and I might be standing in just the wrong spot/angle and my things are in my blind spot and I can’t see the forest for the trees.

Fridge

The environment is a very comfortable space for the two that live there and throwing me into the mix I feel terrible to put someone out to be able to join in. Everything I can do to contribute, someone has to move things to prepare for me and I feel more of a hindrance than an adult. So, I hibernate.

Hibernate

Oh yeah, where I spend Christmas, I’m also socially isolated by other means, no mobile reception, I divert my phone and if they can’t remember their wi-fi password I’m screwed. So, hostage. Like I said.

Christmas Hostage

Today’s Lunch – 26th September 2018

Published September 26, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day!

Life has been way too chaotic lately. What is going on? Is it just me?

Chaotic

Last Thursday, my young carer and I went over to the west. My artist friend Larissa had organised a huge Fringe event called Disability Pride. Here is a little taste. You can see photos of the event on my Facebook page. https://www.facebook.com/helen.caligiuri

Disability Pride 1

Disability Pride 2

And if you can share the posts already on fb for this event. I’m still struggling to share to that page. I’m doing it wrong, obviously. https://www.facebook.com/larissa.macfarlane

Disability Pride

And like my sleep isn’t challenged enough? Enter this scenario. Late Monday night far, far away in the country. My mum chases in Two cats (One likes to stay out later than the other prompting me to tie them together.) I can’t believe she bothered to tell me why she couldn’t do that. Then she drove to Melbourne (3.5 hours) to arrive at 2.10am, I was in bed around 3am and my younger sister was returning from her first overseas trip. I woke at 7.30am, to wonder where they both were? I had expected to wake to an extra body snuggled down asleep in my bed. Did I need to give her intensive border control training? Doubtful. Getting luggage took for ever apparently. So overall, four hours sleep. Not good at all.

Sleep

My one appointment Tuesday was cancelled without anyone bothering to tell me so after my family departed I had a kip and I finished the day with a friend coming for dinner and a film. I had managed to convince my friend Susanne (her real name) to watch Deadpool with me.

Forgive the irony, I told her she could hit me if it was too violent. I forget, I find the violence so highly stylised and the humour for me wiped my memory of the violence. I gotta hand d it to her, the moments she closed her eyes and blocked her ears, I stroked her leg (more of a pat) and told her “butterfly kisses!” And reminding her of Ryan Reynolds rack, eighteen minutes from the end she waved the white flag, she had, had enough and I didn’t get my slap.

Deadpool