Enough
You know those blog posts you read that give you all the answers and a bit of TMI? This is that post.
Fifty-Two years with an AVM (Arterial Venus Malformation)
Migraines.
Disc bulge surgery.
Carpel tunnel surgery.
Hernia surgery.
Lost half my eyesight.
Endo diagnosis.
Hot fucking flushes.
And a UTI.
Have I not suffered enough? Which do you think is on my one last nerve? It’s ironically not the hot flushes, although.
Migraines and Sports
I’ve had migraines since I was young. I don’t remember when they began, I just remember how my Mum solved them. I remember she made a furtive call to whom I didn’t know. Then she would take me on a drive, across town, out on the old freeway, down the road opposite my first primary school, down a dirt road that was a driveway, and after parking next to a building, we entered from the back into a waiting room. it had plywood panels on the walls with long coloured ribbons hanging around most of the wall space.
Apparently, my osteo was also a bull breeder that had awards, not your average osteo. He had a rather Dutch name. Upon entering a buzzer alerted the Doctor his patient had arrived and he would come in before we even sat down.
I remember the last time I went to see him; my dad had offered to take me as he had come home from work and as my Mum had been busy making dinner he volunteered to take me. He didn’t know where it was so with my migraine I directed him. I have to say, he did not trust the location for this “hocus pocus” form of medicine. I remember going inside and how uncomfortable he was. The Doctor arrived and I had to remove my T-Shirt, never does a 12-year-old girl feel so uncomfortable. a towel draped over my non-existent boobies, adjustments, massage and stretching and a payment made then back home again for the magic to settle the pain.
Forty years later, I still see a chiropractor and yesterday I told her I’d had a weeklong Walking/Talking migraine which is my regular these days, it’s just enough to annoy me but not enough to cripple me so I can ignore adulting and responsibilities and just go to bed.
She asked what parts of my face was I feeling it? Because I can usually narrow it down. Left eye, right eye, the thing, the thing or the other thing, this time, while lying on my back I used my hand to wave over my face. “My face! my whole fucking face! like I’ve been hit in the face with a basketball!” I’m really glad people can find humour in my pain.
I do sometimes wonder what happened to that Osteo who breeds bulls and I did about 15 years ago see someone down in Geelong that turned out to be the nephew with the same surname. What a tiny world we live in. It does weirdly help.
Moving Target
I often use the term each day as a Moving Target and I use this in the context that every day is a moving target. By the end of each day, I need to be in less pain, be less tired by the end of the day, have chiseled things on my mental to do list. Have eaten three meals a day. This rarely happens, FYI, I’m ok if it’s two meals and a coffee. My day revolves more around getting sleep, getting to appointments and home again, plus meals or sustenance slots in around these things.
More importantly, I encounter less people I want to kill or deserve to be killed. Harsh words I know. Not advocating to be set loose with free rein here. Not killed anyone yet. Don’t intend to start, but I also limit myself around people and groups that piss me off. Also, the most important thing every day is to get through the day without a migraine. Can we do just that?
Everyday life seems to throw challenges in my face to make that nearly impossible and if I do these things in the earlier part of the day. What will I not be able to do later in the day? It’s always either/or never both.
High Functioning
I learnt in the early days I was considered a high functioning ABI, I live independently, I pay my own bills, I pay my rent, Blah. Blah. Blah.
The problem with being high functioning is when I am not at my best, like when I have a terrible migraine. No, not a headache, a migraine! People don’t realise what that means or how it brings my basic function level to zero. And the people round me, if they are the wrong people, don’t seem to help.
I learned recently that I can be “mean!” because a carer told me so. I realised all people with disabilities, if in pain and with someone that is actually not helping will get a dose of “MEAN!”
I can’t apologise for someone being unable to read the situation and being helpful. It’s when I can least micromanage someone.
Power Down
If you saw my blogpost a bit ago where you actually saw me doing a radio interview. You may have noticed I didn’t look at the camera much.
Recent conversations with my Nueropsych where I explained if I’m talking to someone I know, I don’t bother making eye contact. I know who they are, I trust them in my personal body space, I know what they look like so I’m only needing to engage in the conversation. Occasionally, I’ll look up at them to find they are staring deep into my eyes.
This is not to sound romantic at all and I’m generally taken aback being pinned by someone’s eye contact. In reality, I need to cater to my loss of eyesight in ways you cannot imagine all the time. I move people from my peripheral vision on my left to somewhere on my right. When people loiter in my blind spots my brain is trying to see/make-out what it can’t see and in this process, I get a migraine and generally, people I’m trying to see do not stand still. This adds to my brain strain.
So, it is to say, my nueropsych explained by not making eye contact with people it’s how I preserve my energy.
I thought it was how I Powered Down.
Migraine Helen
If this post could have a longer title, it would be “How to get a migraine in one easy step!” What’s that? I imagined I could sneak a little fun social catch up into my boring life without consequences.
Anyone with disabilities will tell you, they will try every now and again to put something fun into their life to break the monotony. But while its great at the time it always comes with a cost. I’ve been trying to get to something in the inner West for about six months. A friend goes to something every Wednesday and I’d booked my Friday carer to go with me, her plans changed and another carer was able to assist me. I’d arranged my local artist friend Larissa MacFarlane to join us. She’s the friend from the radio interview I did from a few weeks ago. You can catch that interview again here if you missed it.
Lara was also the driving force behind the advisability Murals “Disability Pride!” Already, I digress, the event I hear you ask? Drag Bingo. The venue required me to get up and down a flight of stairs. I haven’t been to a Drag show for twenty years, back at the (the greyhound) But Drag and Bingo? You will never hear the word “Bitch!” Repeated so appropriately in the same night. Zena Ghost was her name; you can see her on Instagram. She had three costume changes throughout the night. The last one she had worn to the recent Melbourne Grand Prix, she had mentioned three Drag Queens had been employed for the event, they were told to dress “Conservatively” I don’t think she hadn’t? She finished the set with Rihanna’s “Shut Up & Drive!”
If you want to read more on the Melbourne Grand Prix other than my experience while working in a big shed in Richmond twenty years ago, hearing the cars practice the weeks leading up to the race, hearing the news helicopters overhead and living in Prahran, close by in the ‘90’s. I’m just saying. Noisy and Loud! So, happy living Northside during footy and Grand Prix season, check out William’s blog. He knows what he’s talking about. http://www.williamsperfectride.com
But, I digress again. Here’s how Hell gets a migraine? Sitting this close to the stage. It’s too close. With the lights and the loud, the 360’s sensory overload. It’s too much.
Oh, yeah, and all the audience participation. The Pronouns being thrown about just needing to be included. Calm down? I get it’s a safe space for the LGBTQI+ community but when the Drag queen found a badge of a footy player, she looked towards the table of Hetro Admin chicks to see if there were any takers. Sorry if you are into AFL or Rugby, however in Australia the players of these sports have not had the best behaviour in public or otherwise and have rightly been publicly shamed for posting poor social behaviour on social media. Female comedians have made jokes that if straight women stop having sex with them, we could breed them out. Because apparently bogan sport’s men breed bogan sports people. Sorry, you all know it’s just the men, elite sports women don’t do stupid things in bathroom urinating and catching it on smart phones to later posting on social media. Smartphone, it’s an oxymoron, isn’t it?
So, Thursday, the day after Drag Bingo, Migraine Helen, it hurts! Feel awful, I normally describe myself as having a migraine every day that ends in “Y” but they are the Walking/Talking kind of migraine where I can still manage a semblance of adulting. But occasionally I need to reassess my day and greet my carer with a succinct “You need to listen to me. You need to hear and understand!” Because the first mission is for us to get out and get a Jab of Tramadol in my arse, then it’s back home to bed before it knocks me out. So, any goals that needed achieving had to be communicated effectively before I’m out. Thursday being the day before Good Friday means my shopping and any Hunter/Gathering must get done as Good Friday is a public holiday. My regular Girl Friday who is often out doing my shopping on autopilot was not my Girl Thursday so I’d had to tell my carer which milk to get and which kitty litter, etc.
I knew I’d be spending my Easter weekend alone on my couch watching TV, eating good food and chocolate. I just hadn’t expected I’d be doing it hung over from a Migraine and I don’t even drink! I do not know how people that drink do it.
A regular prize in bingo was a shot of “Wet Pussy” (A short glass of some sort of potent Peach drink), the woman at our table that won it several times but donated it to someone else because she didn’t drink. Drag Bingo is definitely a drinking game.
Highly recommended if you wanna see an impersonation of a Britney Spears-era 15 year old teenage girl dancing in her bedroom like no one is watching. Not a negative. Then Drag Bingo is for you.
Meanwhile, it’s Easter Sunday morning 4am and I can’t sleep. Hence, I’m writing this.
Meanwhile, Melbourne is also in the 40th year of the Melbourne International comedy festival and I went all out and have five tickets this year. (I’m doing hard Mass and it’s not been running 40 years, but it started in 1987. Can you do the sums? Please.
My first comedy show is tomorrow night as in Tuesday. So far so good. The next is Saturday night and the people that I got tickets to go with me have already pulled out so I’m trying to find two others to go with me and make sure I get home in one piece.
Hope everyone survived Easter.
And hit Like!
Hot off the Press
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.
The Feels
I’ve had a terrible case of the feels today and the sad it has not helped at all that my carer arrived today in a cloud of perfume. I asked if she had read my profile that clearly stated “NO PERFUME!” She answered, “Perfume was her thing!” As if this exempted her somehow, like what the fuck people what is your thing, can you get a new thing that doesn’t give me a migraine.
My “thing” is to offer empty threats. I’m not violent but I do like a good empty threat because people will never know if I’m serious or not. My empty threat of choice is if you don’t stop XYZ whatever the “thing” is that they’re doing that is not to my liking I will throat punch you. I guess it’s a kind of saying I want you to stop breathing I want you to hurt so badly that you might die because you cannot breathe. And I definitely mean to hurt you as much as your actions are hurting me.
So, I started the day with a migraine and I went to the final AGM the final meeting for the group I’ve been part of the ten years where every single month I would attend I would come home with a migraine don’t know why I would do this to myself, but it was a group of people that apparently were my tribe because we all have brain injuries. Despite all having very different brain injuries.
The people I’d met and loved there, have come and gone, moved onto new adventures and the things I’d achieved in the time I’d been there had more recently been demolished by the new members that purely by accident fell into powerful positions. For the whole ten years I’d been attending every month I’d been wondering when I would be happy to walk away.
Certainly, my presence, being able to remind them of the hard work of previous members and advocates was not being listened to.
At the AGM I was asked to stand so people I did not recognise could see someone that had been there for twenty plus years. I was close to tears as despite planning my exit for as long as I’d been there and mostly the recent passing of my father. Sob! Something else was coming to an end.
I was asked if I wanted to say something. I did, but it would not have been what they wanted to hear, or the new potential members would have wanted to hear. I kept my mouth shut.
Over lunch, the let’s call them the “Leader” (For want of a better term), came up to me and told me I could come back at any time.
Let me be clear, WHAT THE FUCK MORON! I’M FREE! I’M NOT COMING BACK!
Went home that day, took some pain meds. The hard ones! And was in bed by around 3.30pm. Was still hung over from that migraine days later. It was a bad one.
But weirdly they are not my tribe because they do not respect me, they do not support me and they may actually miss me when I’m not there, which is not my fault or my problem once a month. Now I’m going to have a working lunch with my carer and she can do some of my admin and I can either write my blog or something. Just anything else that doesn’t give me a migraine.
Update on a Few Things
So, I have been intending to follow up on a few things lately, but I’ve been slack in my efforts to use speech to text. Some things are hard to say out loud.
I’ve been meaning to follow up on the bullying I received from the not-for-profit self-advocacy group I’ve been volunteering at for over ten years. I’m letting the dust settle on that for a little bit longer, but the baseline is that my time with them is going to come to an end soon as they took my blog link off their website, making such statements as ‘it’s not even about brain injury’. Clearly, they didn’t look very hard because I’m sure I stated in my profile its brain injury done differently. It’s a lost cause and it’s time to find a new tribe.
Add to this the Gaslighting I’ve been receiving from my mental health care provider. They have done very well at the opposite of their job. Ever wonder why I don’t name and shame providers? Yeah, now you understand.
I’ll unpack both things another time in more detail.
I often hope how I teach organisations to respect and treat me, is how they will continue to treat all their clients or patients. Some are slow learners and if they don’t learn, I take my funding elsewhere.
I have been doing too much as last Thursday I had a migraine that whipped me out for a day and another four of feeling seedy. But I now have injectable Tramadol in my home and no, I do not intend to inject myself.
Welcoming in 2022
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.
Hell onWheels/Life One Handed 