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!

 

Looking From The Outside

If you look at me from the outside
You might assume she just sits at her computer achieving nothing,
Looking at my spamsing body
You might be fooled into assuming this,
And I don’t make a contribution to the society…
This couldn’t be further from the truth. ‘

Even though I have had more bad days than good in the past few years,
Until this February I prided myself on being a journalist,
Chasing and organising interviews was my life for over eight years,
People still say, “You have to interview Rob Rob”,
and they’re right.  I will!

I live for holidays with Mum or a friend,
Queensland is our favourite destination,
Because of my little brother and my little niece up there,
But going away with my Bestie is the best fun
He makes me forget about all of my health issues for a while.,
We get up to mischief!

Looking at me you wouldn’t know how I met a musician at one of his gigs,
I struck up Dutch courage and asked my carer to ask him over to our table,
We bonded immediately and for six years we were best mates,
We used to text everyday, sometimes he just wanted to say hi
or chat about things that made us laugh,
And even though he broke my heart in the end,
I don’t regret meeting him,
because he taught me that some people “Just see Jac”.

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!

Medical Cannabis

When you depend on strong nerve and muscle relaxant medications to continue to live as comfortable as you can be, you constantly ask yourself “how did I become like this?”

Up until I was about 26, after four years of excruciating pain from an incident which caused nerve damage, soft tissue damage and a lower back injury I was referred to a lovely neurosurgeon who specialises in people with chronic pain, many with physical disabilities.

I’m still under his care and whenever we see him he says “Jacqueline, what am I going to do with you?” Haha. Like within most aspects of my life concerning my disability and now health, I’m constantly told I’m “one-of a-kind!” Yay for me! But there’s gotta be someone out there with Cerebral Palsy, with severe scoliosis and luque rods…plus nerve damage which causes chronic nerve pain 24/7. Right? I’ve googled and searched. Unlike myself who’s extremely lucky to have communication, there’s not many with this luxury.

Back to the medications, most days I can’t wait to be showered, dressed and get my hair dried, just so I can have breakfast so I can take my meds, so I can bare the pain. On my really bad days I can’t even stomach eating breaky because my stomach’s churning from the pain.

There’s been lots of debating about legalising medical cannabis. Unfortunately like Gay Marriage, Australia’s very slow at accepting cannabis (a herb!) as a medicine; a much needed medicine to ease a whole list of illnesses and diseases.

To me, something that reduces seizures in CHILDREN is a no-brainer! Something that may help cancer patients with pain management and helps them to feel like eating again SHOULD be available freely. Something that reduces pain, spasming and minimises the need for prescribed medications for people with chronic pain and/or disabilities should be available now. Instead the Federal Government are dragging their heels and it seems like their interest in this manner could be about financial gain.

Thank God for Daniel Andrews, the Victorian state minister who started the ball rolling earlier this year when he stopped loving parents who are giving their suffering children cannabis oil from being charged. This oil is completely safe and greatly improves their kiddies’ lives. I know parents who would do anything to see their child pain-free and/or to reduce their elliptic fits. I’m far from being a child (I’m 40 in October), but I know somedays Mum wishes she could help me control my pain better.

Last night we watched the awesome documentary on SBS called “The Truth About Medical Marijuana” where it showed how in Israel people with illnesses and chronic pain are prescribed individual doses for their specific needs. Their system works! Peoples’ illnesses and chronic pain are eased. Cancer patients’ nausea dissipate so they can eat! And the “Professor” of medical cannabis treatment has been doing this for twenty years! TWENTY YEARS!

So I really hope by writing this post Australia legalises medical cannabis ASAP! My medications have cost me having a colostomy and a constant foggy brain. More to the point, I don’t wanna think “this is it? I can’t pursue my dreams due to my pain?”

 

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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.