Was catching up on some of my data entry today when I realised how well I cope with my brain injury. So well, people often forget my AVM/ABI is not so much mental but physical.
I guess the point of my blog is to educate people that all brain injuries are different. While catching up on my data entry, which is a lovely excel spreadsheet where I record the carer hours and other services for future reference, I realised a date in November 2020 I had so much on at the same time it wasn’t funny. Yet I can cope. This particular day, I had my Personal Care (PC), carer for an hour. My community access carer, despite not going out arrived just ahead of the PC chick. All of which I can work with, as can they.
I still had to be presentable as I had a committee meeting via Zoom. While I don’t do make-up when I’m not out of my home (apartment!). I won’t do make-up to stay at home, but I do need to not do colour and then I remembered my MOTHER was here. It was not planned; it was very last minute the night before. But it is what it is.
My mum had gone out to her appointment and returned by the end of the Zoom meeting. By which time my handyman had arrived. My handyman comes once yearly for a spring clean. Does windows on the inside, the fan covers in the bathroom, any areas on walls or floor that take a serious hit and it’s not the light cleaning my weekly HC (home care) carers need to do. Suddenly with too many warm bodies in my apartment, a complaint goes out that it’s too hot and can the A/C go on? Well, it’s set still too hot but here’s the remote, work it out.
Still three people are in my home and I’m to prioritise what everybody wants as the most important thing to solve first. At this point I get a bit grumpy. OK! We are working on it, if you can’t help, don’t be part of the problem my mum gets the heater to cool air.
There is a new calm. Mum makes her lunch and coffee and departs for her long drive home. What she was here for had been achieved.
Despite what she may think of how I feel about my mum. My mum is a ROCKSTAR! She really is.
The second carer gets her stuff done for me and departs. It’s just me and the handyman and a recently departed carer visits for a bit. She distracts the handyman briefly with talk of fruit trees and such. I’m meant to roll with the punches, it’s fine. The handyman goes, as does the visitor.
My brain is fried. But I coped with all the craziness. All these things, they wouldn’t normally happen ALL AT THE SAME TIME.
I’m no more broken than normal, however the title refers to me posting some blogs out of order from the previous ones.
Living on a busy intersection in an apartment complex. I want to put a sign up on the tram stop downstairs. It will state! “PLEASE LEAVE YOUR ADDRESS SO WE CAN BE A BOGAN IN FRONT OF WHERE YOU LIVE”
It’s so convenient living in an apartment with a tram stop at your door, a supermarket close by, but add a tram depot around the corner, drunk people wait too late to get the tram to the city and get left at the last stop before the depot. There’s a pub too and a random bogan who overuses my favourite word and a petrol station.
A bogan downstairs who just ignores basic etiquette. Anyway, I’m just saying I hear an engine and I can tell it’s a Coles or Woolworths delivery truck.
So I guess it’s time to say a belated Merry Christmas and a Happy New Year, so I suggest as 2022 starts I’m going to make a New Year’s resolution. A simple one and that is to better be able to decipher my own handwriting. As I’ve been one-handed for over 10 years now, I’ve started to develop carpal tunnel so I think this year will be getting much-needed carpel tunnel surgery. Imagine this means ill have no hands for a bit. A week if all goes well. To be continued.
January, I learnt years ago, that it is really hard is achieve anything in the Disability sector. So now I just have learned to relax and take time off. Not racing around trying to fit everything in, is a holiday in itself. So much still to do, including the now overdue Ladies Lunch with the Ladies in my family for our Christmas get together. Yeah, I know! Someone recently said, “You get together once a year with family for Christmas and realise why you don’t bother to see them during the year” Yes, a comedian, of course. Covid hasn’t made it any easier, but I think the less time we spend with family the less we have in common and the less we understand how to best communicate.
So, Christmas day I had a migraine because well I don’t get a day off from having migraines. A friend came over for an hour to set up some tech and three days, later he told me he had to isolate and get tested for Covid-19 he was fine but he was very stressed about the two people he’s going to spend some time with on Christmas Day.
It is summer in Melbourne, I don’t tell many people I am spending Christmas alone, it is better to not disclose this until after the fact. It doesn’t help when people give you lots of pity, for some people spending Christmas at home alone is better than all the alternatives. In my case staying at home means I get Carers from my normal agencies, I don’t lose my independence and it is easier to deal with being alone rather than spending time in someone else’s home and spending time alone.
The best time on my balcony as my Hot Chocolate Calla Lillie’s are in bloom.
A special mention to the anonymous person/ ‘s who gifted me my new iPhone 13. I’ve been learning new things. And hopefully I’ll get better at doing things Hands-Free. Briefly.
So, going forward please stay safe. Covid, sorry the Plague, is still kicking our asses, so be mindful, we don’t get to celebrate and have big parties (Plague-spreading events) just because we fear another Lockdown. Melbourne holds first place for the most to date. (6) Not something to be proud of. But here we are.
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.
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.
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.
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”
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.