Spasticity
I was sitting in the shower today on my shower stool and I sneezed, my left leg shook, like, a lot.
Continue washing
Sneezed again
My left leg shakes again, uncontrollably
Sometimes my left arm shakes
No reason.
It’s called spasticity.
Wrong
Sometimes having carers can go wrong. I know I’ve only had good things to say but occasionally in the past, but at times it has gone rather badly.
In my early days, fifteen years ago, getting carers, I had a few older ladies who were due a hip replacement. One woman would do her shift later in the day with me and I noticed she was always a bit grumpier on those days. I nailed it and we discussed, it turned out by the time she made it to me her morning pain meds had worn off. So, I suggested she take another one? She was fine. We stayed in contact for a while, even after she was no longer my carer. She’d bring me her ground coffee she didn’t love and created a blend with what I had and coped better with a coffee. Coffee always makes a shift pass easier.
Another lady I had around that also needed a hip replacement, she was really sweet. I still see this lovely lady out and about. One particular day, she had put a big bag of kitty litter on the front of the trolley underneath, it had a little hole in it. There we were trailing a litre of Clay kitty litter around the supermarket. My carer got down on her knees to fix the bag of litter and she couldn’t get up, I got down to help her. She was really embarrassed, but I don’t embarrass easily these days. I laughed. And then a staff member, who mistook our relationship, came to help us. He thought I was her carer. Right? Seriously, she was this lovely Indian woman who had been in Australia fifty years or so. She has a son my age. In her car she had all kinds of Catholic ‘stuff!’ Jesus! Rosary beads! Etc!
So, while out driving I taught her how to swear.
The word of choice, Fuck Knuckle!
I know. So wrong. I greet these women with hugs. So lovely.
Advocacy
Recently, someone who doesn’t have a disability thought to share her rather shitty opinion with me that I was not an advocate. She’s not someone who has even met me, nor now will she ever. After she listed the reasons why she didn’t like me (when I say she told me she didn’t like me, I mean that she said ‘she didn’t hate me because I had a disability and she didn‘t hate me for other reasons but she hated me for some other reason she listed”) Interesting that during 2020 I was the only person she claimed she ever chatted to, now she has no-one.
Anyway, she felt the need to inform me I wasn’t a great advocate. So, while I’m not suggesting I’m creating world peace (gotta save something for later right?), I’m doing some of the little things to make life easier.
So, here’s an example:
I’ve been part of a self-advocacy group for 8+ years now. They do the big projects and some local day to day stuff. These things don’t pay. It’s monthly meetings and lots of emails and reading and things you do in your own time. It’s a good way to stay connected to a community so you can share problems and discuss with each other how we solve some of these problems. Some problems have systemic change required, some informing the public (who don’t want to know) and some is just how we are better prepared so when we get harassed by a ticket inspector on a train that we don’t move to scramble for our ID or ticket.
Anyway, during 2020, they started rewarding us with a pocket money incentive every month. I can’t get ‘paid’ as it;
1. Impacts the pension.
2. Would have my super fund completely taken from me as it would be imagined I can one day return to work.
So I had to emphasise to the powers that be that not everyone can be paid. Not everyone will start a business, have a career (from their ABI) and life will not resume as normal and I was more than happy to take my pocket money in the form of a vouchers and I mentioned about four retailers where I could happily do some damage.
They are
Coles/Myer
Officeworks
JB Hi Fi
There are options, all the things are there and the person with the job to find out if I could do this, got back to me with some calls and it was a yes. Now, ladies, if you get $150 once or twice a year, what do we spend it on?
That’s right! BRAS! These days I get new bra’s every two years, and it’s a painful and expensive endeavour.
My carer that I go do ‘stuff’ with is not one of my ladies who have seen me naked (well, in any way unclothed) mainly because, and it’s a reasonable reason and I’m sticking with it. I don’t want any of my carers getting between me and my need to buy ice cream.
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
So, Melbourne recently was freed from its sixth lockdown to slow the spread of the plague (cannot keep mentioning the C-Bomb!)
Just in time for my birthday, but a lot of cafes have not been able to put patrons back inside while socially distancing and it requires more staff to police and restraints in the evenings is pretty similar.
Starting with the first lockdown in 2020, I started doing more take away lunches, even collecting and taking home in-between appointments, anything to support my favourite cafes. Gotta have a place to go write my blog again, right.
On Wednesdays, being the day, I haven’t been to my regular Wednesday locale I started shaking things up a bit. A fish and chip lunch, a Lebanese wrap lunch, even a beef curry pie and all of these on a steady rotation.
Fridays became the days to support my regular haunt. My Girl Friday and I would order in, wait out the front for our order and then sit in the car for what we dubbed Car Café. Here is what the dashboard looked like.
I would call on Thursday to ask if they could put my new favourite thing aside for me. My new favourite I for years ignored due to its simplicity. But now, I’m convinced that thing has crack cocaine in it. Because the humble ham and cheese toastie has something in it that just makes it next level. I think I know what it is, it’s not drugs, but either way, I’m hooked.
They also started making this naughty little thing Robert (the owner) came down from his office one day and grabbed one. I asked what it was and he told me if I didn’t have the last one, he might come back and get it too. And I did. Treats are always cut in half so I can share them with Girl Friday. Shared calories equal no calories as far as I’m concerned. I went to order one a few weeks ago and I was told they were not doing them anymore. They were only over winter. But I had only bought 2 and I had shared them both with my Girl Friday. FML. This is the “Fly Me To The Moon” and the very addictive Ham and Cheese Toastie.
Ways to survive lockdown in Melbourne.
Cheers,
H
Thursdays
Thursdays is a rather quiet day ideally for me at home. I usually run around like a bare assed rabbit Monday – Wednesday. Friday is another long day of hunter-gathering and it’s the day my apartment gets its once over with a vacuum and mop. I try to do my admin but even if it’s 40 degrees in the shade, I might venture out on hellonwheels to do some of the things to get ahead of the demands on my one shopping/food prep shift each week.
It’s a great feeling of independence, power and achievement to get out and get things done.
Yesterday I got to the post office. Tick! Tick! Tick! Got to the Pet Shop. Tick! Tick! Tick! Chemist Tick! And the eco-green shop. Tick! Then home.
One of my regulars questioned why I was not there on the Friday?
The woman at the Greek deli gave me good advice. I had explained I was trying to get ahead of the following day and she said “Never worry about tomorrow. It’s going to happen anyway”
Vulnerabilities
Yesterday I had a brief experience of feeling vulnerable. It’s not my happy place, and I can generally roll with the punches. I’m stuck in my routine in many ways but I can be flexible and move things around while I’m on the fly.
But my vulnerability is I need someone in my home (a man who doesn’t know me at all outside the brain injury group we are both in) and I was wearing my ‘around the apartment’ clothes. A colored t-shirt and shorts you could see my hairy legs in. And I was in slippers (they were O.H. & S.) standard so I don’t slip over in my socks on the kitchen floor and most annoyingly, I didn’t put on a bra.
So, it is to say, I have one persona of black steel.
I know I can’t believe I even wrote that, when I’m out I want to be seen as slim, sleek, stylish, class, etc. Blah! Blah! Blah!
But when I’m at home I wear clothes, I do not wear them out. Colors, shorts. No one sees me, my carers don’t judge me, my cat doesn’t care. She looks at me weirdly when I have my hair out.
Yeah! That’s a hard pill to swallow.
That’s why I go out of my way to NOT make myself vulnerable.
Hate
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.
Hot off the Press
Today I thought I’d do a little old school style Hot off The Press.
Sometimes I share some profoundly wise words with someone and they want to share or quote me, now I’m like, “Christ! Now I’ve got a post to write that has a stick of TNT attached. Because they want to quote me in their XYZ, you know I can’t recall and it doesn’t matter.
So, here are some wise words.
“Carers need to be aware that they may not value the same things as their client, but when they are with their clients, they put their own values aside!”
Cheers,
H
Busy
I have never known how to not be busy. I’ve always been busy. When I was 16 years old (yes! back when there were dinosaurs!). In the 1980’s, I was a full-time high school student, I worked part time as a checkout chick. I was doing hours of art folio preparation to get into college, I was a live-in babysitter to baby sister and I definitely didn’t have time for a social life or boyfriend. I did the household ironing and more than my share of the housework.
All while planning to be a poor art student, didn’t do a 4,000-word assignment until my first year of tertiary. I was still living at home then and it was all hand written. No computers, so many drafts, then only the battle of whiteout back then. You kids don’t know how good you have it.
So, it shouldn’t be a surprise that when I moved to Melbourne to be a poor art student when I was nineteen, that while being a full-time student, I transferred my supermarket job so I was working part time and being 100% responsible for my shopping and cooking. I introduced a little social outing in the form of going to clubs. I met one woman at college that went to a big commercial club very close to me. In simple terms, it was a very big wog club that was like a meat market. Huge dance floor in the middle of the room, upstairs, you spent much time going for a walk around the perimeter with a friend. As you travelled around a line forward and you just kept to the left. To your right was a line of people going the other way. As people passed on your right A guy’s face would loom into you to go for a kiss. Brushing them aside, all of a sudden, they would be pulled away by their girlfriend who had them by the hand and asking why they seemed to be holding them up. This is not why I stopped going to this kind if club.
The first few years I studied in Melbourne (two years actually) and I would go home long weekends and maybe a week of term break.
At Christmas, I’d transfer my supermarket job back to the country and also pick up seasonal work in the farm of blueberry packing. The last season I did some picking too, but while very stressful, packing paid better.
But to take a break from study and be at home in the country over Christmas meant I was literally working from 6am until 9pm with only a few hours off in the middle. Not even after college, I picked up some work in retail and clubs, which I literally set the hours according to what I considered it required to ‘get the job done’. So, my weeks, day and night were full.
I guess I’m saying life before my disability was always hectic, maybe why little symptoms I could later contribute to my AVM diagnosis went unchecked. So busy, my life has always been busy and I’m sure it’s not the last time I will cover this topic, or topics.
Hell onWheels/Life One Handed 