And death, let’s not forget death. Death ends all pain.
Although I hope we are all on the same page, that I’m wanting to die after a long and happy life surrounded by more cats than I currently have.
So, I’m not planning to get to the finish line for a long time yet. Openly discussing mental health is important. We need to make it a far less taboo topic so people that struggle more feel they can talk to somebody who will listen. I was having a conversation with another woman today about the crazy lady hormones. As I do.
Because they are driving me fucking crazy of late. During the last years of navigating the Plague, OK, Covid-20 I had another diagnosis. To which I’m not at all impressed with. I have endo (endometriosis).
And I think I was also told I have a high pain threshold. Because, I’ve apparently had a lifetime of that too and didn’t notice.
Probably a good thing I wasn’t trying to have babies……right? But the good news is when I hit the actual Pause, it stops.
Pun not intended there, the symptoms from endo, they stop. And I said to this woman, I should fucking hope so!
Reminiscent of days gone past, in my earlier Blogging days when one post each week unpacked the chaos, highlights and lowlights of my average week. 2023 seems to have stepped up a notch on my version of hectic.
Monday, had a day trip to Mornington for a meeting. Dropped some cash down there. Came home with a brand-new winter Doona cover and pillowcases. Still do not know why I keep buying the matching pillowcases as I only have one pillow on my bed these days. More than that, get in the way of me being able to see the bedside clock on the other side of the bed. Also, got to Coffee Traders & Tutti – Fruity.
Don’t know when my migraine set in but it was definitely well rooted Tuesday. These days I have two kinds of migraines, Tuesday I had the kind I can still function doing walking/talking. Weirdly, it’s a pity because I had many calls and emails to do. The kind of calls I had to growl at people. By the time I’d made all my calls I was on a roll and prepared to volunteer to do others calls that required some growling also. My one appointment at home ended up getting cancelled as my young Neurophysio cancelled due to being ill. Me thinks being his turn to bring treats, again he begged off. I’m trying to teach him to take in turns. He’s a sweetheart and I like to tease the young ones.
Wednesday, a late start and off to chiropractor. Even more needed with the migraine. The kind that happens every day ending in “Y”.
Did a few chores arranging my standard gift for bereavement.
My uncle passed a few weeks ago. He had a very short time after diagnosis and then he was gone. Brutal! I didn’t get to go to his funeral as it was Interstate and family didn’t consider including me in their plans to fly. I had briefly toyed with going and taking a carer from Melbourne using NDIS funding. I still would have had to cover their flights and accommodation and funding would have taken at least $1000 hit and then I would have needed to hire a car, honestly. What a drama, so stressful. Even if I could have gone, I would have been so exhausted it would not have mattered, just might have been nice if it had occurred to others to offer to help.
Thursday, another day at home planning to execute my plan of World Domination, a little joke I have. Really, just a plan to survive day to day and make it through the week. Otherwise, a day of rest as my migraine continues.
Friday, my second chiropractic appointment and then and then the usual hunter/gathering including a trip to South Melbourne to see my hand specialist. Had a local anaesthetic then a cortisone shot for my trigger thumb. Not as fun as it sounds, even managed to fit in a fall on Friday, narrowly avoiding landing on a star picket. So glad I missed that.
Finished Friday heading to Collingwood to deliver the other Lilly to my cousin. Thanks to my evening taxi driver Young Deepak. Even Young John would appreciate him. He’s, our people. Dinner at 10pm, emails until late. Nothing new there.
This last week I’ve also been trying to get my head around a new piece of tech. A PVR, I suspect this added to my migraine but how can I tell?
The weekend I try to be as off-grid as possible. So, even Sunday night as I smash out this blog post, I’m already making my outreach calls while I watch a show in the background. At least I’ve a day at home tomorrow.
And my favourite thing about my Friday Wheel-Woman this week. And yes, it had AC and a CD Player. And it’s red.
Fingers crossed this coming week is calmer and less chaotic. Hope you are all doing well? Please hit Like.
It’s a strong word and by November every year, it’s an emotion I find I’m overwhelmed by. It’s when I also purposely don’t write. I just shut down and deal because I’m so very grumpy, but if I never write about it, maybe everyone out there in the world will never know they are not alone.
So, months later, ok two months later, I sit to write, hopeful that the strong case of grumpy (or hate) has mellowed sufficiently so people I know don’t all quickly reach for the pills or razors or tequila (just don’t do it!).
Later October it’s my birthday, I mean, I normally try to upsize all of October to make it “my month” But while Covid kicked everyone in the face in 2020, the few things I look forward to in October, I missed out on. Going out for lunches, cake, coffee and adventures.
My birthday generally sucks anyway and not because It’s when we get older. Whatever, who gives a Tutti Frutti. (Trying to swear less this year? See how long that lasts!) but my birthday is not a big celebration.
Not since my 8th birthday when my baby sister was born and a year later, we were both sick on my 9th birthday and her 1st birthday. So, 15 months and a week after her birth, she passed away from cancer. It was very ordinary.
To say in the early 80’s people, family, complete strangers did not know how to deal with the grief of losing someone so young. Still don’t, but really didn’t back in the ’80s. So, anyway birthdays suck. Check!
November rolls around and I have to start thinking and planning what is happening for Christmas. The ladies, my mum, two sisters, one partner at sister and me, that’s five. Check!
We go out for a lovely lady’s lunch, somewhere nice. Often expensive. There is wine (not for me, thanks) yummy dessert and banter. The exchanging of gifts to be unwrapped later (maybe).
My older sister is often issued the warning “No shakey, shakey!” She is terrible, can’t help herself. It’s hilarious.
Money is always an issue, some of us worry about money, some don’t. So, there is a balance of power thing going on. Then there’s actual Christmas, who will be where? My mum and younger sister live in the country, I lived there with them for two years around 2000. The home is perfect for them and putting a third in the mix unhinges us all. Upon arrival there I’m issued a warning as soon as I get out of the car. Be careful. There is the constant OH & S (Occupational Health and Safety) warning. Yeah, I get it. It’s a fucking hazard! (That didn’t take long, did it?) I could slip or trip or just plain face-plant. There was the year I stepped onto my mum’s front verandah to smell the fresh country air. This was the warning I received, “Be careful! If you go for a walk over by the water tank! There’s a snake living in the weeds!” To which I promptly turned around and went back inside. FUCK NO! I did not come home to be messing with any snakes. No! No! No! No! No!
My older sister and her now fiancé, live in the opposite direction. We all used to gather down there so we had Christmas together, they have a holiday house that meant we could stay there without being all over each other. Obviously, there is always a matter of who does the most on the day in the kitchen, but even one-handed I can pack a dishwasher like a Pro and I do my share as best as I can. But I miss the fun times in the kitchen, planning some yummy pasta dish for Christmas Eve, the hands on making of it, the hunter, gathering to prepare all the ingredients, etc too. Unfortunately, I am excluded and that hurts.
For about 4-5 years now I’ve gone home to my mum’s. Yawn, the place I lose my independence as soon as I arrive. We are all tired, grumpy and have our own interests. By which I mean I am not sitting and watching Survivor or MasterChef episodes from earlier in the year. Just NO!
So, I spend a lot of time alone. Mum gives me her bedroom so I can spread out. I take my cat (normally) who stays down that end of the house. We hibernate, I binge watch my TV shows too, because when I come out to see what’s happening, I’m literally shooed away. And if I don’t go home to mum’s, my older sister doesn’t think to include me. There’s the whole cat/dog ratio thing too.
Dog people/ Cat people!
When I have taken my cat home, they also have a cat, and they need to be kept apart. There’s are outdoor neighbourhood cats, they roam, looking for food. What a nightmare.
My father? Oh, my parents divorced twenty-five years ago, after twenty-five years of marriage. Don’t get me started, from my mum I never hear the end of it. I love both my parents.
I try every at Christmas, to see my father when I’m up north and It’s hard because my dad is not completely understanding all of my disability quirks. He is just very opinionated that I must move out of the city so one day maybe I can save some $$$$’s for a deposit and own something one day. He does not live in Helen’s real world. He does not know; he would not understand and there’s no point trying to teach him.
So, people think I’m included in Christmas and that’s the end of the stay. Last year (2020) I stayed home alone in the city, because it was better than being somewhere I need help all the time and lose my independence immediately.
Christmas and family time. I’m just saying. It’s death by 1000 cuts.
In January, I’m just glad IT’S OVER! I get next year off.
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.
We interrupt the normal flow of my writing and posts to give you this breaking news……that means I’m tapping on my iPad, paper and pen put aside for speedy delivery.
If you are up to date on my blog and current affairs in Melbourne, Australia being my beloved home.
Last Friday, the 20th of January 2017 saw an incident Melbourne is not known for having. I’m going to use some generalised terms however bear with me. A young man in a Holden Commodore performed burn-outs and donuts in the main intersection of Flinders Street and Swanson Walk in front of Flinders Street Station. He was apparently screaming out obscenities while hanging out the window of his car. While he used terms like ‘Reign down terror!’ His actions were not perceived to be terrorist relayed. The driver was persuaded down Swanson Walk and the Bourke Street Mall. Both precincts known for being busy pedestrian traffic areas.
For those unaware, Melbourne has had the popular Australian Open Tennis, which is huge with tourists and Melbourne in general. We Melbournians love our coffee and our culture. We are happy and friendly people, so what happened next was (for lack of words,) just awful. The driver just drove into and over people. The youngest victim was a 3-month-old baby who was in a pusher(pram) and two people in their 30’s were killed also. Many others were injured, later reports indicated injuries to limbs and some brain injuries. The latest report is that five people were killed including the baby.
Passers-by pulled together to help the injured people until medical assistance could attend.
The driver was eventually stopped by police who shot him in his car, then dragged him from his car that still sported part of the pusher from earlier.
Now, I premise by saying this is likely not normal anywhere and most definitely not Melbourne.
I generally go to the city once a week. And was only made aware this was happening when out getting groceries and ran into an old carer who mentioned her son was in the city and she was concerned about him.
I don’t spend much time on social media, however I checked in on Saturday night. Lots of posts about sending people back where they came from when they cause such incidents and posts about acts of terror.
Clearly very glad I had not been anywhere near the city on Friday however with all the love and respect and support in the world to those who died, suffered injury or emotional trauma for witnessing such atrocities, I’m a little surprised my own family and friends have neglected to reach out and just ‘check‘ I wasn’t anywhere near the city……
And my point is that the silence is deafening and telling, isn’t it?
It’s now late Sunday night. Ok, it’s early Monday morning and I’ve avoided social media today. Sometimes, I like to let the dust settle on these events and rather than get caught up in the early assumptions I like to get the real facts….. There is no point getting caught up in the drama until the media gets all the information and updates correct.
So far, the reports I seem to have seen somewhere indicated he had mental health issues and not a terrorist related event.
Many posts I did see early Sunday morning, indicated the driver had slipped through the cracks in the legal system and had he been remanded for a prior infringement, he may not have been on the streets to cause such chaos. I prefer to imagine the mental health system failed him and everyone else affected on Friday.
Meanwhile, in a suburb in the North I had a conversation with my mum on the phone about the status of the lovely NDIS. In 2016, I was given the funding that is supposed to be the silver bullet to fix all problems and level the playing fields. My funding was rushed through giving me the lowest level of assistance. The first plan is supposedly designed this way…. So I’m not saying I’m the only one to get screwed. Just stating facts.
Last year Stupidlink (sorry, my favourite term for the government agency that handles pensions, etc) did to review my DSP (Disability Support pension) because apparently, I might be job ready?
So, the NDIS has also triggered an overhaul and review of my mum’s carer allowance although it’s not at all what they told us it’s what they were intending.
Now, I have had great carers who cared from the second they walked through the door and I can tell you I think they love me like family not just because they get paid to care and while I’m transitioning to new carers I’m micromanaging and already can tell I would have the same level of stress free care any time soon.
My NDIS funding needs an appeal/review and my mum, my only family member to actively help me has stated she is not going to assist with any paperwork unless she is paid to do so.
It’s the loneliest moment to feel the government is working to isolate me from the only family assistance I receive because, do they think they have my best (can’t think of appropriate word here) in mind. Because everything else points to the government wanting to institutionalize me and take away all my rights and independence.
I don’t mean to minimalist the events of Friday in the city because in that situation people died. I’m not planning to reach for the razors (my home has no razors) or the pills and let’s hope it continues that way…….
Now, please do not adjust your dials while normal transmissions resume.
Peace Out!
And I’ll premise it by saying, sometimes its good time has passed because I cannot get caught up in the details. Maybe.
And I can streamline the “thing!”
After a period of seeing a few different Neurosurgeons and a period of time thinking I would have to find money to go to Europe to seek treatment because my AVM was deemed surgically inoperable. I was referred to a hospital across town and it seemed the only treatment I could have to ‘fix’ the problem had come to Melbourne and was covered by the Public Medical System! Yeah!
My AVM, still inoperable could be treated with radiation. Asked what to expect?
In simple terms, I was told I might lose some muscle tone, which I was amused by because it told me they assumed I had muscle tone. I thought I had better get to the gym and get some…
They told me my hair would “thin”.
To be clear my definition of thinning and theirs are completely different.
And they asked if I liked reading? Because I might lose some eyesight.
On the upside, I would potentially obliterate the risk of 2% a year I might suffer a stroke, bleed or worse. I’m not a gambler however if it would ‘fix’ the AVM and I would be able to illuminate the risk of a bleed, stroke, possible death, then my mum and sister were on-board to have the radiation.
Hell onWheels/Life One Handed 