So, here at 51, I’m learning new things all the time about chronic pain. I have a terrible sleeping pattern. If you didn’t know? It’s terrible, I love a good afternoon kip. I try to keep it just to the weekends, but it’s not always a given. It’s not seven days a week, most people would blame my years of working in hospitality. I always thought working in clubs had its own category, but apparently, it’s lumped in with restaurants and cafes.
Then, there’s having a brain injury. Also, messes with your sleep. Then, disability, depression, taking anti-depressants, etc. then the racy Lady Hormones. Must I go on? I mean, I hear rumours about people getting eight hours of sleep a night. I mean, who are they? They must be killed.
But the eating. I didn’t know fitting in three meals a day every day was hard for people with chronic pain. I just thought it was just me. I am not a morning person, so I sleep later. I therefore eat breakfast later. I have a light breakfast then get out and do stuff. I don’t prioritise lunch. I’ll eat lunch late, then I’m full. I skip dinner a lot. Sometimes, I’ll have the motivation for dessert. If that’s ice cream, because that has a separate stomach, right? Like, cows have four stomachs.
So, I know my brain and my body is constantly going between I’m digesting, going into a food coma, and I’m happy, but too full and it’s all a vicious cycle that I don’t know how to change.
Did I mention, after my kip on a Saturday I have my later lunch so much later, people have been known to comment that I lived a rather bohemian lifestyle? Yeah, that happens.
Note: any suggestions of killing or murder is not an actual threat intended to harm. Do not go and kill people that sleep better than I do. Just gently nudge them and remind them they don’t know how good they have it.
I define adulting as making decisions. I’m not even talking about good decisions versus bad decisions, but just decisions. Adulting in the other form is putting on a bra and wearing shoes ie, any day I leave the apartment.
For the people who don’t have disabilities, you take life for granted. You who have cars and jobs, family that care.
Fuck Me! You don’t know how lucky you are. Then, what? You can travel and have holidays. Shut the fuck up. We do not need to hear from you.
Reasons why Helen should not blog when she has the sads. I intended to write parts of this earlier before the cause of Sally the shit that led to the actual “Sads!”
So, as per usual I’ve had a few new carers recently. One has picked up my Friday shift, so I’ve got a new Girl Friday.
We got along instantly like a house on fire. She is close to my age which is rare and good to have some variety for sure. She has a long red plait hanging over her shoulder with petite features making me want to refer to her as Elsa from Frozen and I haven’t even seen it.
All was well, in my first 8.5-hour shift with her when we got on the topic of football. We were doing so well. Our teams were playing each other that night and she’s a Magpie’s supporter, that’s the team mascot for Collingwood. It was nice knowing you.
Over for the last weeks of the season I made several early morning texts to her, the morning after, along the lines of “I’m your face!” When Carlton beat her team. It’s OK, I knew she could take it. The game was on.
I suggested if our teams faced each other on grand final day and her team won I would get a tattoo of a Magpie on my butt! (it would be my first) and tiny. I suggested if the Blues, (yes, the Carlton mascot) won she had to get a Huge Blues tattoo across her upper chest on the left, it’s fine. She laughed. Stating “not a huge one?”
I continued to mention I would get started designing our tattoo’s. Could have been a limited release. Alas, no tattoos were undertaken. That’s the right term.
So, it’s another day, another fucking disability. Sometimes, a bandaid on one important finger on my right hand just adds to the torment. In year 9 (circa 15) we learnt how to touch type. Yes, that’s with both the hands, losing strength in my left hand while in an admin job often meant I was already saving time by only typing with my right hand. With all five fingers and thumb but rather proficiently.
Now, I’m even more proficient typing one handed, but on occasion, an injury occurs. Not from typing but in general and a band aid is sported and depending on thumb or fingers it’s like having my disability day zero all over again.
I’m a thumb texter and that is as infuriating as if I’ve cut or burnt my thumb. Because I can only text if I’m seated and I have my phone on my leg or table.
Honestly, don’t even get me started with how hard it’s getting to turn off my phone one-handed. It’s starting to be not disability friendly.
Seriously. Yes, there’s a lot of “seriously” in this post. Go try all your devices, gadgets, things one-handed and not just once, do it like it’s your only option. Like it’s your reality for now and ever after.
Apple, stop making your tech child-Proof. Well, Hell-Proof! I’m already not playing well with others by brewing an Apple user. I prefer it that way to be fair and if one needs reminding.
Wow, anyone noticed lately I’ve been a little less than consistent? Yeah, I really don’t like being inconsistent. I’m actually always found ways to have routine, even when I did not have study or a full-time job, I built things and life into a routine. Maybe building this and consistency made it easy to keep my AVM be unnoticed for so long. Maybe it’s how I coped. Or the signs of it, I don’t know, it’s a working theory.
So, if you have been following, you know there has been chaos, emotional trauma and grief and my normal routine has been thrown out of whack.
Two brief visits to the country have meant returning home I’ve needed a week just to catch back up on the normal. People assume having carers is set and forget but it requires ongoing maintenance. Having events out of the norm means shuffling, more intensive organising stuff, Admin, housekeeping. It all starts to back up on me. Mail, letters that require action grows, phone calls, emails, new groups plus Zooming.
In times of stress, I’ve always needed more sleep and every now and again I get a migraine where I just can’t function and I’m in bed by 3.30pm and I’m hungover for days despite deadlines and events.
On Thursday last week I went to the AGM of the NGO I’ve volunteered with for over ten years. I’ve been a voting member for 4-6 of those. You member the group that was under valuing me and bullying me. Yeah, that one! I stepped down. Even by choice, with all the other grief and stuff in life to deal with, it was a tear in the corner of my eye moment. I was asked to stand so a room full of mostly strangers could see who I was and asked if I wanted to say something. I did but wasn’t in any state to speak. Nor, would they have wanted to hear what I would have said.
Add to this my carer wore perfume that day. She made the statement “it was her thing!” I’m like, “Get another thing!” And then the migraine to boot.
On the Sunday, I did a BBQ gathering in a local park to celebrate my recent 5-Oh! And upon arrival found the BBQs did not work.
Having some WTF Moments of late, and not coping. Things continue to slip. It’s now practically Wednesday and Tuesday came with two carers arriving because I forgot to cancel one and it allowed me to do some outsourcing and some catching up. My small stack of hospital referrals and letters for appointments has gone. And while this is not the post I’d intended; I will start on the next. A BIG AWARD TO BE REVEALED! Some updates on all the important things and finding new ways to write since I’ve got bigger issues with my one good hand.
On Saturday night I posted to my Social’s this, “Its Saturday night and I’m Out – Like Out-OUT! It blew up well, it was well-liked immediately.
These days, Saturday night is my Single Girl Date Nite when I go off-grid and watch films or try to.
This Saturday I was OUT; I went to see a band I’d like since my days of working in clubs back in the 90’s. I’d not ever seen this band live. The gig had been rescheduled three times due to the Plague. Damn Plague and finally it was here. I should point out back in my club days, I was lucky to be home two nights a week, now I’m lucky to go out two nights a year. God, I feel old.
Preparation to get out in the dark (I can’t see in the dark, if you recall) starts earlier than normal and the ritual of getting ready to go out is harder due to that only doing the ritual twice a year. The Ritual being the excitement of getting ready, choosing an outfit. The make-up, etc, etc. and the pre-event tunes.
Anyway, once near the venue my friend dropped me at a corner to wait while she parked down a side-street, so I didn’t need to navigate dark streets and uneven terrain. While waiting some twenty-somethings walked past stating “what’s with all the old people out tonight?” Grrr, can’t be talking about me.
Sorry, I digress, once at the venue, my tickets not appearing to be on the door, I left my name and they were happy to let us in. The venue manger introduced himself and I will give him a Pseudonym as I do everyone, I hope he appreciates it. Both for privacy and a play on words. Let’s call him Sriracha. You know the hot sauce? I’m not into chilli and I can say, I need to get out more, even though I hit sensory overload really early.
Anyway, Sriracha lead my friend and I through the band room to a corner of the back where there was a raised area, he bought us two stools to perch on and told us if we needed anything, any of the staff could call him for me. My friend did the drinks run and had a little boogie beside me. She also got me my T-Shirt before my size sold out.
Annoyingly, being height-challenged I could get up onto the stool but it was still the right way to go. At concerts and Gigs I’m a wriggler as well as a light Head-Banger (Not the Heavy Metal kind) I’m not a dancer, even before my disability. Not after I found I could not do the Melbourne shuffle. Makes sense as I do have a Drop Foot.
Here is a link for the first song from my early club days in about ’92. Get ready for some Samples. This is in no way an advert for fast food, but still very catchy.
This song, I believe is German but translates as “I am a foreigner” You can look up what it’s about if you are interested. I travelled around the UK on my only overseas trip back in ’94 to this, good times.
This was their last song before they finished with a cover of the Prodigy paying homage to Keith Flint who passed away in 2019. Prodigy was also a huge influence in all the clubs I went to or worked for in the 90’s.
It’s frustrating for me to need to explain to people who have only known me since my diagnosis and my disability that there was a different version of Helen, who experienced a different culture, lifestyle or had different social networks. That Helen is still inside me and is sassy, outspoken and won’t be pushed around. they just don’t want to be exposed to the great things that I experienced to appreciate this version of Helen they see today; they just want to stay with the normal and what they already know. Not learn anything new.
Friendly reminder, while working in clubs I barely drank, never did party drugs, possibly the only reason I made it to 34 before learning of my AVM. My disability as I like to remind people is NOT SELF INFLICTED.
Was home by 1am, still had chores to do after my friend helped take off my shoes and my AFO (Ankle Foot Orthotic), needed a stiff cuppa T, a Bex and a good lie down. Oh, I’m a 50’s housewife.
I feel a bit like if I didn’t get the Plague Saturday night I’m bulletproof. Still not had it, still not complaining.
Now, late Monday night I’m still catching up so apologies for my delay. Lastly, Queen Elizabeth II, may she R.I.P.
When you read this post, please keep in mind I’ve had my brain injury over fifty years and I’m not even fifty yet. I know I only learned of my AVM (Arterio Venous Malformation) when I was thirty-four, but my diagnosis meant many symptoms I’d experienced all my life, finally I had some meaning.
So, I guess it was going to happen sooner or later. I just always imagined it might be a family member that thought to insist I edit my blog. But then, my family would need to read my blog. We all realise blogging is about sharing thoughts, ideas, theories, witty stories (I hope in my case), but thought-provoking stuff. If you don’t like one post or a word, think about why? Have a Conversation. It’s how we learn new things. Get educated.
I didn’t ever think it would be from an ungrateful group I’ve donated ten plus years of my life volunteering for. Talking members off a ledge, explaining and giving context to past endeavours and advocating for all the efforts of past volunteers so everything they have contributed isn’t burnt to the ground.
Seriously, so many emails.
People insisting on using “Reply-All!!!!!” Can people please stop doing that? Just stop it! So, having been offered an ultimatum. I think nobody will end up thrilled with how this plays out.
I regret in my last post I used the word slut! Note, if you read the post, I was not suggesting sharing a brain injury made people have loose morals or ethics. I regret using this term. I also dislike the fact that a ‘Player’, usually a reference towards loose men as being something to celebrate and receive a pat on the back for perceived conquests and all the terms for a woman that may choose to live a similar lifestyle is ugly and offensive.
From Wikepedia – SlutWalk – Wikipedia Please read the whole article, before commenting.
SlutWalk is a transnational movement[1] calling for an end to rape culture, including victim blaming and slut shaming of sexual assault victims.[2] Specifically, participants protest against explaining or excusing rape by referring to any aspect of a woman’s appearance.[3] The rallies began on April 3, 2011,[4] in Toronto, Ontario, Canada, after a Toronto Police officer suggested that “women should avoid dressing like sluts”[5][6] as a precaution against sexual assault. Subsequent rallies have occurred globally.[7]
The protest takes the form of a march, mainly by young women, where some dress in clothes considered to be “slutty” such as short skirts, stockings and scanty tops. In the various Slutwalks around the world, there are usually speaker meetings and workshops, live music, sign-making sessions, leafleting, open microphones, chanting, dances, martial arts, and receptions or after-parties with refreshments.[1][8] In many of the rallies and online, women speak publicly for the first time about their identity as rape survivors.[9][10] The movement’s ideology has been questioned and its methodology criticized by some.
While I choose to be single and celibate, as I have done most of my adult life since I was a young adult, when I wasn’t in a relationship. I have had a friend who chose a very different lifestyle. I never judged her and loved to have our catch-up brunches to hear all about them. So, I apologise if anyone was offended and I ask you read the rest of that particular post so you get the context of personalities living with brain injury and how I think I’ve developed my personality in spite of and around my brain injury.
Now, the fall-out to me not doing what I was asked to do (edit offensive words from my previous post) apparently could result in my blog link being removed from the website of the Not for Profit I’ve given my time to as explained above. You have no idea how much I had to negotiate to make that happen in the first place.
But if you know me? You know I don’t give in to such demands. It is MY BLOG after all and later this year I again need the support to remain a voting member on the board to help create change and support worthy projects, etc. and if I don’t get that maybe it’s my time to move on? Maybe I get a little selfish for a while, get it in my community more? Go do coffees and write. I have neglected my writing lately.
I do not know if people realise how busy I really am. But I DONT GOT TIME TO GO OVER SCORCHED EARTH! I’m not doing everything twice!
So lastly, I hope this explains some of the things and settles and calms any ruffled feathers from my previous post. Who knew right? And if you understand, empathise or appreciate what I’m trying to do? Please comment or hit Like!
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.
I went to my first of two appointments today in Heidelberg. I have made it a habit to walk to a local take-away shop to pick up a vegetable pide and I book a taxi from there to scoop me up and get me home.
Today none of my regular taxi drivers could fit me in so, I rang for one. What’s the damn address? I get to tell my regular guys simply ‘the take away place’ and they manage to get a park across the street or call me to tell me they are around the corner. I waited.
I noted there were no free parking spaces for a taxi to pull in. It’s a very busy shopping strip where traffic is non-stop. Car spaces open up and are taken again very quickly. Some spaces become available. I message to see where my taxi was and had the option to speak to my driver that had accepted my booking. I spoke to him and told him I would step into an empty carpark and he could pull in.
I stepped into the back of three empty car spots, in a row of cars, a car went to back into where I was. I shook my head and moved towards the passenger window. I briefly explained my dilemma.
“Taxi coming to pick me up. He would need to pull in.”
This was fine. He pulled into the middle carpark and as he was getting out of the driver’s side (on the roadside not curb-side), another car also considered parking where I was standing. I stood firm. I looked through the car’s rear window. I could not make eye contact. I should point out; I should be wearing a face mask as Covid is a thing.
I stood firm, other cars were lined up wondering what was happening. I looked to the driver trying to steal my car spot. He was driving a vintage gold Merc.
Say it with me now, three things wrong with that sentence. Ok, two. Vintage is ok.
I realized the driver was an older (he was old!) Greek man, I shook my head, “no!” at him. I pointed to the Audi in the road, waiting for this situation to be resolved. I did my default stone face. “I’m not giving in!” and shook my head again. I asked the man who had parked by now if he could tell the old Greek man why I was not moving. He explained to me that he could not see me.
How could he not? I am dressed in the standard uniform that is Melbourne. BLACK & BLACK & BLACK, TODAY. It’s cold, the end of summer but finally we have some blue sky.
Quite frankly, just happy it’s not 40 degrees in the shade as it was a week ago, because I could not wear black.
So, where was I?
The Greek man in his vintage gold Merc drove away. I had indicated again to the Audi waiting for traffic to be resolved and traffic continued to move. The man and his wife got out of their car that they had picked and the husband told me the old Greek man had been none too pleased. I smiled and said I had noticed he was rather grumpy.
My taxi driver pulled in and I unloaded all my handful of yeah, bag, walking stick and things. And the day went on.
There are many times I stand my ground as a not young, hot and sexy something-something woman but I will always stand up to people like my disability didn’t happen because there are certain things I don’t stand for.
In my earlier years of having case management, I mentioned as one of my goals that I wanted some normal friends and contact with the outside world that didn’t constantly throw me in with people with brain injuries or depression/mental health, etc.
I mentioned it specifically like this as my previous C.M. had a tendency to favour the ‘Clubhouse’ their organization ran. I would joke that they literally did a drive-by, push the door open and shove you out! Exclaiming “Have fun!”
My monthly meetings with my C.M. went on and while trying to maintain my independence, find funding for the different things, refer me to O. T’s and all the ‘other’, more attainable goals finding ‘normal’ friends was always pushed to the side for more important and pressing things.
This new potential friend was occasionally mentioned to me and because I insisted on more details, I was assured she was witty and smart. I confess, I don’t have much time for slow, dim-witted people.
What? My brain doesn’t have much time for. C’mon! Hurry the fuck up! I can’t help it. My brain is busy and Stephen Hawking I am not. But, over time, I was volunteered more and more info about this new potential friend. I had not been terribly keen as she was living across town. I don’t have the energy to get to the people I already know and love to go across town.
Are your spidey senses going off yet?
Mine have been from day one. I should point out, C.M. works like this. I self-referred. They come see you or vice versa, you sign contract, they get paid.
Everything I said I wanted and needed, which they said they could do, they fuck all did.
They did the easy things. They only met with me as often as I insisted because I pestered them and because I’m fun and cool and amusing. Imagine, if someone isn’t cool or fun or can’t implement Pester Power?
That part of me is still in that childlike era, I do exceptionally well at Pester Power. So C.M. tried to shake me loose. “Hey? We haven’t done all the things yet!”
You realise, you sign that contract, they get paid and if you don’t keep on them, they can get away with never seeing you again.
So, the C.M. let slip one day, could I help the client with her rostering of carers? She couldn’t manage her roster, didn’t return calls, couldn’t schedule, etc. Could I help her with that?
So, she wanted me to do her job now?
People often don’t even realise I have a disability. Well, several really. So, they see me upright and walking and talking and smiling until one day I make a BOLD statement and people are shocked into a different idea of Helen’s normal.
Hell onWheels/Life One Handed 