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

It’s now very early Wednesday morning as I tap out this blog and another crazy day is ahead.

Crazy day

So, today’s lunch, Spanakopita with a side-salad and medicine. Nom! Nom!

Spanakopita

Latte

Cheers

H

Happy Wednesday

Today’s Lunch – 12th September 2018

Published September 12, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

Well, this week has been very different from normal, I even left the house (apartment) on Sunday. I went to what I like to call the crazy cat lady festival. It was the cat show on at the exhibition buildings in Carlton.

Exhibition Building

CCF 1 CCF 2 CCF 3 CCF 4 CCF 5

And my friend, her son and the son’s girlfriend that were nice enough to take me, great day! Just great!

Even when pulling out of the underground carport, after getting lost looking for the exit. “Look toward the light! Go to the light!” And my friend’s son replying to me “I’ve had just about enough of you!” Totally felt like part of the family…….

Go to the light

Tuesday I was at the committee meeting I go to for the self-advocacy brain injury group I’m a member of, coming home with the standard side serve of migraine.

Committee Meeting

Super!

Wednesday, now today! No Chiro or acupuncture to help with the migraine. I definitely had to get out to my favourite location for some normal. That said! Today’s offering? The brain grain salad, with the standard medicine and carrot cake, does it count for one of my veggie servings for the day? Just asking!

Brain Grain Salad

Latte

Cheers,
H

Midweek 1

Cheeky

Published August 3, 2018 by helentastic67

Cheeky

Now, I like to imagine by now, you are fully aware I am a bit cheeky. I can’t be my usually cheeky self around family, because they don’t get it. Weird right? But I’ve got a new carer who takes me shopping and she has worked out very quickly how ‘fresh’ she can be with me, which is good.

Family weird

We have been doing a little driving to locations, I can get to certain things without adding to the chaos and me having to carry things.

So, last Friday, after driving to a Health Food shop where I get some of my ‘good pills’ which I get in bulk, so they are cheaper. We drove to a neighbouring suburb to the Petshop. This pet shop has a cat that requires re-homing, there might be a kitten, bunnies, fish. Yeah! That kind of pet shop.

Pet shop

We pulled up in a car park on the street and when my carer was ready to disembark, she came out with a command.

“GET OUT”

Get out

To be fair, I wasn’t expecting it, but after a snort, I burst out laughing and so did she.

Burst out Laughing

To be fair, it is always good to have a laugh when out with my carers because people don’t just see me as someone with a disability. People see me out with my ‘girlfriends’ laughing. Sharing stories and wit and people then don’t notice my disability. However, some carers don’t realise if they think they can out do me with wit, they are mistaken.

Hanging out with friends

All I have to do is stand still and let out a screech.

“STOP IT”

And then

“YOU’RE HURTING ME!”

And people might come to my aid.

Hurt me

Hot off the Press – 20th November 2017

Published November 20, 2017 by helentastic67

Hot off the Press 2011

Hot off the Press

OK, by the end of this post! Watch how I smash shout outs to my Little Red Truck guys, me Mum (Yes, on purpose) and my carers and a few special time-poor friends who never fail to deserve my thanks!

Monday! The start of the big moving week. I take possession of my new home. An apartment on the second floor of a six-story building. I’ve never done such high density living and I have paid my first month’s rent but was given grace to get bond assistance. Made a call and found out I didn’t get it. The whole process of being able to keep a roof over my head is the most soul-destroying balance of proving I can afford the rent on my income. Rent must be less than 55% of my income, but I had to prove I earn less than $48,000 yearly. (What I could do with that!) and apparently, I earn too much to qualify for bond assistance! It’s fucking ridiculous……….

Rental assistance

Now I have to find money for bond and to pay my removalist. I know I haven’t mentioned, but in my family, works on guilt. My mum travels often to do whatever needs doing no matter how financially strapped she is or how unwell or exhausted she might be. It’s a true testament to a mother’s love. My father doesn’t. He previously was able to contribute a little financially to my staying out of a group home that would have me go crazy! Or a nursing home, same result! My younger sister has actually assisted with some short-term loans, which feels so wrong. And my older sister who lives the closest to me will, help on the day.

Family help

By the end of Monday, my mum had managed to have my father help me with the bond and the removalist costs and I think he has disowned me because he feels I cost him too much money. If you can’t shake the funding out of a tree for people like me? Shouldn’t I be able to call on family?

Tuesday, moving day woke at 5.30am, at 7am, just gave up on sleep and got up. Didn’t stop all day. Everything I picked up was too heavy but I managed to stop myself from lifting my slow cookers or my LeCruset pot! (So heavy!) My moving guys came in the form of the Little Red Trucks! Two trucks by the names of RZA and GZA, (members of the rap group Wu Tang Clan), and Lenny and Carl (apparently the lovable duo who hangs out at Moe’s Tavern on the Simpson’s. My guys in red on the day were Dylan, Rory, Henry and Rohan.

Little Red truck

I first used Little Red Trucks was two moves ago when the guy I booked (the only person who is primarily booked by low-income people and funded by the NGO’s) stood me up by six hours. By the time I heard from this guy he told me he had been to the hospital he was so sick, by that stage I had not wanted to hear from him, I wanted to hear from his next of kin to tell me he had died! I felt it was the only reasonable excuse for not turning up!

When I first used the Little Red Trucks, they only had three trucks. Two of the trucks were called Hall and Oats, Salt n Pepper and I can’t recall the other. The drivers are all in bands, so it provides them with a regular income from a day Job. The first guy I dealt with years ago was also a carpenter. The trucks are traditionally named after musicians who have influenced them. I don’t get the Simpsons reference, but anyway. Having 4 guys made it very quick and efficient!

I hope you are aware, I’m a real ‘housey’ kinda girl so I have a lot of things. On the day, as I was going from a three-bedroom unit that felt like a house, to a two-bedroom two bathroom less than 5-year-old apartment. So, down-sizing!

I issued a warning early: Any mention of ‘she has too much stuff’, it’s too small, it’s not going to fit! you owe me a dollar. I needed to set the standards early. My older sister arrived on time an hour after the guys and She pulled the last of everything all together. While my sister was demanding where some last-minute things could or would go, I introduced her to one of the guys, it went something like this, I was going to mention someone looking a bit like me but grumpier would arrive soon. She let out a “Hey!”, I turned to Dylan with the prosecution rests. All in good fun!

https://littleredtrucks.com.au/

Wednesday, everything hurts. Just everything, worst case of OCD ever. (no disrespect for people who actually have OCD) You know, you’re looking at an area in your home and think I’ll just move these few things and you have to find ‘something’ and you get distracted by the other ‘something‘ and I managed to find my immediate bathroom items, very handy.

OCD

The day went like this – moved some things, unpacked some things, did some washing. Left the house in shorts! (So, I don’t expose my legs to the general public, nobody needs to see that!) I offered my chiropractor, that she could make one comment! Then, we would never speak of it again!

Wearing shorts

The new apartment is starting to come together. But I still haven’t found the TV remote and that’s proving to be a needle in a haystack! It’s now late and I might struggle to get to midnight. I’m so tired and everything still hurts.

Thursday, had a carer for 5 hours and Sana and my mum really pulled it all together starting to look like a home. Had my first PJ day, since I’ve had a crappy cold for weeks now and haven’t had time to even stop.

PJ Day

Friday, had my young carer Jennifer again. Oh, how I’ve missed her! (She was on holiday) Managed to vote! (So I don’t need to go out on Saturday!) Shopping, just the basics. Late Friday night my mum left but not until she managed to give my old landlord an appropriate serve! My mum is not even a bit Italian, but she managed to tell him to make ‘this go away! And told him how dare he ……….xyz! (Just trust me you don’t want to know!) She got the biggest hug for that.

Friday

The weekend! Didn’t get to go off grid, hardly stopped unpacking, barely did any TV Catch-up! And haven’t completely nailed this 1am curfew to get to bed. Last night, it was practically 2am! But I’ve decided the foodstuff that won’t fit into the pantry I’ll just have to eat and I’m working on my bookcases.

Weekend

So, shout outs to my Little Red struck guys again. Dylan, my mum, my older sister Jo-Bunch! Younger sister A-Super chook, Tamsin and I help for tech support and Silvia for giving me the term, Sentimental. As in I can keep this T-shirt I’ll never fit into again for sentimental reasons and her partner Sam for assisting with my scooter shed. Countless carers who have had a piece of the puzzle.

Thank you

While, I’ve still got the cold, Mum and Jo got it eventually. Caring is sharing! I haven’t had a migraine! Winning!
Stay tuned for photos…….
Cheers,
H

New week