2018 That Ended A Cycle

For those who have known me for the past nineteen years, I was living in a constant, vicious circle of pain and then fatigue, then the fatigue would cause pain and so on.  All this was a result of trauma to my lower back.  I won’t say how, but it was at no fault of my own.  This experience left me with emotional fear which is still with me, after all these years.

However, after nineteen years since my back surgery in October, my thirst for life has returned.  Although I have been unwell for the past few weeks, I still can think ahead (well a bit ahead).  I can attend family events at night during the warmer months, I can go to concerts after a long day without suffering badly the day afterwards.

I have dreams that I won’t be able to fulfil still (mainly due to my age…haha… and fatigue), but I’m ok with that.  I think Russell Brand or Bruce Springsteen (good old Russell… if he wasn’t married…  I’d write something like “email me Russell!”) said, if you are contributing to society you’re doing your job…  I think that’s what he or Bruce said in their Netflix’s specials.  My memory is still crap from the drugs I’ve taken for years.  By the way, the weening off these meds is fun…  SAID NOBODY EVER! So sorry Russell and Bruce (Bruce is my idol; spiritually and for his work ethic) for not remembering who said what, but I inspire to be like those types of people.

I think I will carry my fears forever and will have panic attacks whenever I get into situations that trigger them.  I have acknowledged their causes and understanding what I can do in that moment.  It’s amazing, I still have the fight or flight instinct and luckily, I can calm down myself to turn on my chair and drive to where I feel safe in spite my disability.  But I don’t have the constant reminder of my past life anymore.  (By the way, if anyone tells you to just “let it go, move on”, they never will understand how you feel.  OR, in other words, they need a punch in the face as one of my younger sisters says!)

My gorgeous nephews and nieces make living all worth it.  My aim is to make it to each 21st, and as you can see we have two little bubby girls in the family now, so I will be hanging around for another twenty-one years!

Thanks for reading my ramblings this year! I wish you and your loved ones a very Merry Christmas and a happy, healthy and safe 2019!

 

A Life-Changer Procedure

I’ve been quiet for a couple of months because I was gearing up for two operations and they ended up being just under a month apart. Then after the second op I got bronchitis which I’m still getting over but I’m much better than I was thanks to some superdooper antibiotics.

Thanks to my Neurologist (and pain specialist) we can manage my nerve pain after he nd him team inserted electrodes in my coccyx and under the skin in my lower back. It’s called a stimulator, I’ve had an occipital nerve stimulator to control headaches for about twelve years now and it works. My Neurologist attempted to insert electrodes into my spine about six years ago. It was extremely traumatic for him and I as I had to be awake for most of the procedure because if he was able to get in, I was to be able to tell him if the stimulation was going down my legs. Unfortunately that time wasn’t meant to be. But I’m wrapped to say this time he was successful and now we can get rid of Mr Zappy (the zapping pain that ran up my left leg), Mr Shitty (sciatica in my right leg) and lower back pain with a remote.

As my Neuro once explained it to me, if you bang your knee and then rub it, your brain will sense the rubbing sensation and forget about the pain. So my occipital nerve stimulator and now spinal stimulator sends electric pulses to the areas and my brain forgets about the pain. For five days I had zappy in one toe due to coughing (we didn’t know I had bloody bronchitis then), so I had a foot massage and until yesterday I didn’t had constant Zappy (one or two here and there but it immediately stopped). Yesterday morning was the first real test as I had two huge zaps. Mum adjusted the stimulator with the remote and I could enjoy an overdue birthday lunch with Nan.

So now we can look forward to the future with myself on less or no medications (I’ve been on a crapload for years and it has made me forgetful and dopey). I might even start interviewing artists again (I’ve had many people say I have to interview “Rob Rob” aka Rob Thomas), but I haven’t decided what’s next for me yet. I’m really interested in website design and social media marketing also. Overseas travelling is one of Mum and my goals, but you need money for that. Haha!

Being A Fur Mum

Ten days ago we adopted little Frankie from Melbourne’s Lost Dogs Home. One of my sisters Monique (aka Neaky) were going down to adopt ONE cat (but ended up getting two after seeing how this particular kitty had bonded with another kitten), and I had kinda chose another kitten for Mum, looking online.

When I spotted our little Frankie (his name was Franklin, but he’s definitely a Frankie) down the bottom row, in a box all alone, I pointed him out to Mum and the lady placed him on my chest. He soon snuggled in around my shoulders, under my chin and started purring non-stop! He’s got the loudest purr. Then gave me chin kisses with his nose. He did the same thing to one of my nephews Quinn, but to Quinnie’s ear. That was it, we adopted little Frankie! Later Mum said, “You knew!” I answered with a smile.

The previous night I chatted about adopting another cat because we have Shadie (our big black beautiful boy) who’s a Mummy’s boy! Mum spoils him with food as he doesn’t shut up when he’s hungry and Shadie was the man of the house. Poor Roxy (our beautifully-natured dog) came to us almost three years ago ago she hadn’t learned to play. She’s around 13 years-old and she loves company but also gets easily scared. Sometimes when she comes in Shadie chases her to Mum’s room whilst Roxy’s whimpering. Mum’s not a dog person but it turned out Roxy and I bonded. I call her “my girl” and Roxy has turned out to love Frankie, even tolerating Frankie to play with her tail and they give each other kisses. Meanwhile, Shadie is still hisses most times when he walks pass my door as Frankie’s in there. You see, Mum was clever and has put up some mesh in my doorway in the hope Shadie gets over his angst. Not yet! (We have the cap spray that’s supposed to chill your cat…maybe a little! So if you have any tricks to make a seven year-old panther to accept a kitten, e-mail me! (Side note: Shadie’s usually a smoochy, playful and maybe gay gorgeous boy, so he’s not usually a vicious type).

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So ever since getting Frankie, he’s been sleeping with me. On the second night he actually climbed between my doona and sheets and slept there. I was so concerned that he would suffocate, I kept waking up to feel him move! I messaged Neaky the next day laughing at myself . Frankie does the sweetest thing sometimes, he curls up right beside my head and sleeps there for halfer,or goes on the other side of me under my arm just to feel my love.30073139_10211965657080390_5703708758926119257_o

I’m a proud part-time Mum of Roxy and Frankie, but still love and deeply care about Shadie. Hell, I was worried he would totally be stressed out by another cat still and am keeping n close eye on him. He’s just being a turd! Haha. I love being responsible of something so tiny though.

Looking For Positives

Since my gorgeous niece Olivia was born on November 31th, my outlook on life has been altered. She has given me something to look forward to. Each cuddle, each smile and each chat (Aunty Jac is always a favourite for having baby chats with) have enlightened my heart with pure joy. I was able to hold her by myself when she was first born and that was pure bliss.24946074_10156208875292240_1618981512_o

 

About two weeks ago the men of the family demolished Nan’s shower. My sister Monique (Olivia’s Mum) was in the top room transferring “stuff” (for legal reasons I’m calling it “stuff”) onto Nan’s hard drive. Olivia was asleep in her pram beside me and I took great pleasure of keeping a watch over her. At one point, Olivia stirred so I gently put my hand on the edge of her pram and she grabbed my finger with her little fist. I thought “this is heaven”.

 

Many people look at people with severe physical disabilities and may automatically assume “you won’t enjoy watching us doing….because obviously you can’t physically do it.” What they don’t realise, just being included is enough! This year my goal is to take my older nieces and nephews to the park just a few doors down. That’s a huge thing because since my chair accident I don’t drive outside the house because of anxiety and pain.  BUT, I will do it! Watching them play and just being with them will be a huge honour and privilege.
 

 

Will

Some days I feel like I can conquer the world! Some days I’m all go and do everything I want to achieve.  I remember when I was younger (before everything changed in 2000) thinking I want to walk the length of our then court. I thought “I can totally do it!”. I didn’t, of course but my will was so strong!

Today my Mum was getting her tattoos to celebrate being ten years cancer free! I was with my friend/worker at a shopping centre five minutes away walking distance. I knew it was cold outside, and walking to the tattooist would have bumps, would more than likely cause me pain tomorrow or the next day, but I thought “hell with it!”. So we walked to the tattooist to join one of my sisters to watch Mum getting her tattoos! Ten years ago Mum was brave when she told cancer to f*ck off twice, so some days I remind myself how tough she was and tell myself to “suck it up princess!”

There are some days when I can’t be brave at all. This is when I wake up in pain and my five to six cocktail of meds don’t touch the zapping pain much, until lunch I have an Endone or Panadine Forte because I like to do what I have to in the morning without being clouded (although since January I’ve been on a stronger dose of Lyrica so that’s affecting my mental capabilities which I absolutely hate but as Mum said it’s keeping me sane,) then after lunch I have an Endone and chill for the afternoon.

Chronic pain makes you feel not brave, and sometimes cowardly. Mum and I are planning a trip to the UK next year to travel around Scotland and Ireland (and maybe Italy). While this is very exciting and mind-blowing (as we will be standing on the same road as “Gerry” aka Gerald Butler in Ps. I Love You), on my bad days daunting as I know there will be much pain involved from the flight and beyond.

Some days (most days) I have the attitude “f#ck it” and plan things with caution. I often plan things with limitations, knowing there might be consequences to do the simplest acts. I often have ideas to write a piece or interview questions for artists or catch up with friends, but then remind myself I can’t due to the winter nights or the bumps in the taxi. This is when bravery escapes me and I hate the fact I need to think with caution. This has become my life now and I often wonder what it would be like to have my old life back. However, this is my life now so I’m going to live it!

Spontaneity And Pain

‌I gotta admit, this year hasn’t played out how I invisioned it. Sure, I’m still recovering from major surgery in August last year, and I’m still healing (probably for another six months, but in my head I knew that would be a twelve months recovery period.) However, this isn’t slowing me down… It’s my chronic nerve pain that’s interfering with our lives!

Last week after a very bad few weeks of Mr Zappy (I get zappy pain in my leg and foot, just imagine having fierce electric shocks every couple of minutes…. You get some respite from various painkillers but it only last 2-3hrs.) This has become my life this year. Some weeks, especially if Mr Zappy has hung around for weeks and weeks, I get very teary because I’m tired and just want the pain to fuck off!

Back to last week, my friend Francis and I were looking forward to seeing Logan on Friday night. Until the Thursday I had Mr Zappy but was determined to make it Friday night. Francis travelled to Fountain Gate (the closest cinema to me because travelling long or short distances, going over pot holes, speed-humps, braile bumps…you get the idea) can set off Mr Zappy. So Francis kindly did that for me – he “gets it”. So after we had dinner we went up to the cinema, Francis bought his normal – popcorn and a drink and we headed around to the ONE and ONLY lift to find out it was out of order and had been for two days. I was pissed, I’m still very pissed.

This week Mum and I sent an e-mail to Village Cinemas. They swear there was a pop-up last week warning people who clicked on the wheelchair seats about the lift. There was NO pop-up otherwise Mum wouldn’t have purchased the tickets!

In our letter we explained how people with many disabilities do not have any ‌spontaneity‌ as we have to organise workers or friends, transport and for some of us our health is extremely limiting. Earlier this year I had to stay home from my Aunty’s daughter’s 18th little get together because the next night we had Bruce Springsteen And E Street Band. Halfway through On Sunday Mum and I are seeing the gorgeous Adele at Etihad Stadium and I know I’ll probably have Mr Zappy for days after it, but I’m still looking forward to seeing Mum’s face when Adele sings her first note.

They Joys Of Shopping

I LOVE to shop! Many women and men do! There’s nothing better than browsing with a friend and/or window shopping. In January I met a friend at Chaddy (aka Chadstone which “claims to be the biggest in the Southern Hemisphere”)  when we saw a movie. Afterwards strolling through Chaddy I drooled looking at the dresses in the different stores!

Yesterday my “worker” who’s also one of my closest friends went shopping at Fountain Gate, like we usually do most Thursdays. Most Thursdays I have massages as I have severe scoliosis and chronic nerve pain, so massages are extremely important to relieve some pain and tension from my spasming muscles. The massage parlor that I was going to at Fountain Gate has changed management and after last week’s massage I decided to look elsewhere. So my friend and I went to a different parlor. The massuses looked at me oddly and said they couldn’t massage my back in my chair. My friend kindly explained how you can massage my back when I’m sitting in my chair and actually showed them how they can massage do it. They answer was still “no”. After I thought would they turn away a pregnant woman who couldn’t lie on her belly?

Their loss turned into my gain as I found an awesome masseuse in another parlor. She didn’t have a problem with me being in my chair and listened to my friend and I, and most importantly she has eased my pain.

Sadly, this wasn’t my first time where I’ve experienced shop discrimination. Years ago (when I still myself drove in public) a shopkeeper at Waverley Gardens ordered me out of her store. It was like a $2 shop, with stuff EVERYWHERE. I remember there was a big oval  mirror  sitting on the floor and I drove gently past it. The shopkeeper eyed me, then ordered my family and I out of the shop. That was one of the first times I was outraged! I was a careful driver and knew the size of aisles I could get through. But this lady simply didn’t want me in her shop.

Some shopkeepers kindly move racks of clothing or whole shelves so whoever is driving my chair and I can move around the store easier, but unfortunately others simply don’t make their stores wheelchair (and pram friendly), because less space equals less produce.And it’s only getting worse!

Just Because….

Just because I have a severe disability

Doesn’t mean you have to speak loudly and slowly,

I comprehend everything you say.

Just because I have a severe disability

Doesn’t mean I’m unable to communicate with you,

Simply look at my computer screen; you’ll see what I’m saying.

Just because I have a severe disability

Doesn’t mean what I do in my life should be seen as spectacular and extraordinary,

I’m just doing what other people do.

Just because I have a severe disability

Doesn’t mean I should be treated like I’m isolated,

I lead a full life with cherished relationships and wonderful adventures.
Just because I have a severe disability

Doesn’t mean I don’t have the same thoughts, feelings and aspirations as you do,

I think, feel and aspire like you do.

Just because I have a severe disability

Doesn’t mean you can treat me like a child,

I’m an adult who makes her own decisions.

Just because I have a severe disability

Doesn’t mean you should assume anything about me,

My exterior fools most people.