It has been so long since I've posted, I've had people contact me to check they are still subscribed! I'm sorry about that.

This year has had my roulette ball spinning around in so many directions. I kept thinking I'll write this week, then thinking I'll wait until such and such appointment is done on Tuesday, and then I'll write. Then, when Tuesday would come, the ball landed in a different unexpected slot, so I thought I'd write after the next milestone.... and rinse, repeat, it always felt like 'after the next [insert here] I'll write'.

So, if I were to give the various adventures in the past 8 months all a Post Title and description, they would read like this:

1. The ‘Not Cyclone’ Alfred Mould & Rash Outbreak, Homeless Deluxe again for a Week.
2. The Farewell Speech I spontaneously did for a long time Suncorp friend, and transportation back to how I once felt 20 years ago. Couldn’t have been achieved without my incredible NDIS support team.
3. Learning to walk properly again - Cancelling Easter and time with my family, thanks to the inability to walk properly and being too unwell. Using the time to find my best possible version of myself at Eden Health Retreat.
4. The gains and the losses / the highs and the lows ....juxtapositions in short proximity from experiencing Eden. The realisation improved quality of life may be an option...but how.
5. Too many friends in the game of roulette life taken in a week. A reminder how precious life is and to make mine count.
6. The return of the Annual Pies Vs Hawks weekend in Melbourne with the Folks and the Nagles after my 7-year health hiatus.
7. The reality and another round acceptance of living with a permanent degenerative disability.
8. When a magpie shits on your Property Development Partners, celebrating our first Property Sale. Our Development company is called Six Wings (Johnny - Hawks, Cien - Swans, Me - Magpies) it seems I was there in Magpie spirit spreading my two wings haha See photo evidence.
9. The Claim Forms. 6 chapters at least on Income Protection and Permanent Disability Insurance and then my Super Funds. The irony is I can’t do Forms anymore on most days…. So wait for the day I can… then smashing them. The plot thickens with a bunch of calls where I have no recollection on what adventures I decided to go on with my future… (find out months later as part of point 33!)
10. They don’t teach you about dentures in high school; that needs to change.
11. Filling my cup - A holiday on holidays in Caba with Cien & my nieces when they visit Cien's dad (times two trips!!!).
12. The one where my fascia was ripped from my right calf thanks to SPS. Back to not walking.
13. The anticlimax (or not) of the backyard built Celine Dion midazolam intranasal drug finally being trialled, supervised by Jo from Melbourne.
14. The epic build up of forgetfulness and cognitive decline - within 48 hours, forgot to pack phone charger, hair brush & toothbrush, forgot to drink daily salt water (regime for about 8 years), left BBQ on for a weekend whilst away, lost phone but non-comprehension I've lost my phone (which is also my wallet) when my friend Simon rings it and I hang up on his phone because he must have rang the wrong number when someone else answers... You get the drift.....
15. The Abs of SPS Steel - a relentless night of SPS in thoracic and neck - why can't I have abs of steel without SPS haha
16. A bad case of HSV in the lungs, ChatGPT and neurophysio to the rescue.
17. The roundabout of choices (literally on a roundabout) leading to choosing an adventure and then backing into a Ute at Fingal Heads. It's time to stop driving.
18. When my brain from pre-2018 returned for one day (thanks to high dose HSV in lungs treatment!) and it was euphoric for me and a client.
19. The one where I was first responder to a major car accident out the front of my French bakery, where I thought the driver's game of life roulette was over.
20. What are the odds of an NDIS support worker Jed (driver of car in accident), NDIS participant (me) and a Surgeon from Darwin on the GC for disaster management training (second responder) being the 3 key players at the scene of the significant car crash.
21. Breaking in another immunologist registrar and more games of hot potato and specialists taking no responsibility for the problems I’m facing, many at this appointment, but primarily HSV in my lungs.
22. Feelings of abandonment are rife. Blindsided by not seeing Lucy, my CF specialist, and breaking in another registrar, and yet another hot potato and handball to Infectious Diseases for my HSV in the Lungs, but no recommendation or referral given.
23. “So, after 15 years, The Girl From Corowa Can Cry” - Dr Reece and his subsequent Welfare Check the next night (off the back of sitting side by side doing my claim forms and him asking how I went with Lucy earlier that day - which I was going to leave for another appointment as it was all a bit raw having no specialist helping me).
24. The New Plan - Dr Reece says finding an Infectious Diseases Dr who knows anything about HSV in the lungs would take 88 spins on the roulette table, years off my life, and too much money. It is time to bring back the big guns - Dr Heiner. If anyone knows the right specialist, it is him since he found it in a bronchoscopy. He's right. They are the reliable two who are relentlessly looking for ways to help me.
25. The Free Loaf of Bread Act of Kindness - from the car accident's sister Ruby. Warmed my soul and closure that Jed was ok (links back to 19 & 20)
26. The "abominable feeling of loss and helplessness".... Dr Heiner's words when he calls and tells me his 43-year-old son just passed away from an unknown cause (still unknown), and he's had to leave the office and we can’t have my appointment. I sit in a garden bed out the front of his office, overwhelmed and offering the best support one can in that moment. We've become friends over 15 years, so we talked for some time. I also had to google abominable, and what a powerful word. I then had to call Nana Joy and let her know and Dr Reece. Tough calls after a helpful chat with Jenbo whilst sitting stunned in a carpark for 2 hours before being able to drive again.
27. Why can't highs and lows be spread over days? The Bread and Dr Heiner's raw loss in one day felt like a month. I was wiped for a couple days given feelings of strong happiness and stress cause SPS.... my body was like WTF... both in a day.
28. If life could be a game of trading roulette squares and tickets to heaven - Nana Joy and I discuss how we still have our roulette squares, but two of my friends, plus Dr Heiner's son (who has left an amazing legacy in the cancer world) don't. And Dr Heiner spends his whole life saving lives. It doesn't seem fair that the two of us are cockroaches or there are criminals running around living their best lives!
29. Making your purpose count whilst you have the privilege of playing life at the roulette table? What are you doing with your seat at the table? I start to ponder this a lot as I realise none of my days are really bringing any joy.
30. The shock of hemorrhaging bowels, the support worker dash to see Dr Reece.
31. Repair The Tear - seems an SPS episode ripped me a new one and Dr Reece wants me admitted.... but I have a couple of important things that need doing that day and over the next couple! I agree to stay opposite the Mater and if the hemorrhaging moves into the 3rd day or gets worse, I'm to present to ED.
32. Don't ask me to say or spell the word 'colorectal'. I've now learnt it's one of my dyslexic words I can not pronounce and have to google everytime to spell right!! Dr Reece has organised a Colorectal Surgeon on the Gold Coast for 6/11 for a colonoscopy and potential surgery as concerns remain from my colonoscopy in Feb (unfavourable histology results), changed bowel habits, potential for infection from the tear that may or may not have repaired and a host of other checks.
33. Reality came crashing in, denial is no longer an option after this shock, Simon’s ESP, and The Pipi Pasta.
I find out with just over 2 weeks to spare I'd agreed more than a month ago to stop SOS work on 6/11! This came thanks to a client call checking on my welfare and where my insurances where up to... so I send an email with some new info and ideas to learn what I'd already done. Mic drop. haha
34. Kind Interventions - a few wonderful people help me realise it is time to make drastic changes after a number of scary memory lapses and incidents!
35. My Favourite Number. Rip It Off Like A Bandaid (quote Johnny) - Medical Retirement. Seems fitting #35 to be the final entry. This year of continued twists and turns has forced me to accept my disability and degenerative condition. No more denial. So, I will be medically retiring from 6/11. We are still in the process of finalising all my insurances, but it seems to be a matter of time/timing as I'm medically approved.

I want to reiterate that the NDIS supports have been incredible; I've just not been able to get to them all and reap the benefits to their full extent. I'm treading water, or arguably (non-denial) going backwards with my cognitive capability, short-term memory recall and now ‘repair the tear’ and whatever is going on in that unplanned project space (points 30-32).

It's become apparent that I'm not capable anymore of up to 10 hours work a week... and the added stress of the unplanned hourly game of roulette with what my body and health deals up. My body and brain are unreliable to me and those I'm supposed to help at Sync or Swim.

I've lost count now of how many times one of my physios or my rehab specialist has been with me at the right time/place as I've gone into an SPS episode and they've done the best to help me out of it. I'm doing 6 hours face to face physio and/or rehab per week. As they've all noted, I'm swimming up current, constantly, without the ability to take a breath... and often drifting backwards, to just start swimming against the current again. It's become relentless and has been for a good 2-3 years, as a friend pointed out this week. So it’s time to be honest with myself, and all of you.

So, it is time to retire, take a breath and see if I can achieve the good feelings I got to experience in points 2, 3 & 6 above. I need to chase quality of life before I can't chase anything.

Afte 15+ years of SOS, it's taken a bit of adjusting to the idea, but I'm ready (apparently I was ready back in May but I forgot that too haha). It's time to focus on helping myself.... get to extra therapies to beat the strong current....catch up with a friend and not need to go to bed directly after.... be able to drive again without assessing if today is an ok day to drive…. to not feel like a 90 year old restricted to their catchment (hopefully I can get back to my fav thing of long drives!).... visit family and not suffer for weeks after..... be able to stay up past 8pm and talk to your friends on a sleep over and not go to bed when the kids do....have your local baker say, wow you look better more than 2 times per year haha! Just simple things really!!

The overall dream at the moment is the cognitive and memory recall to recover somewhat, or at least stop deteriorating. Any other curbing and/or improvements with my PID, SPS, HSV in lungs etc is a bonus!!

The funny thing is that at SOS we've always said every problem has a solution. I've definitely applied that attitude to my health for a good 25 years, fighting and sifting through the various rabbit warrens for solutions to help me get better. Ironically, it's only just occurred to me that the solution could actually be stopping (rather than doing something!).

I'm opening up nominations for:
1. Which chapters above need writing up first when I've got my writing mojo back!
2. What should my hobbies be when I'm finally well enough to think about doing a hobby!

This week my Psychologist explained how the brain works and cognitive versus short term memory recall and how they are different things in different locations of the brain. She also explained I’m a risk to myself and clients if I continued working after she experienced first hand my issues when I didn’t know we spoke on Monday when we were having a Teams Meeting on Wednesday and I thought a heap of our texts had gone missing and I was very confused. She is aware of my impatience and to manage my expectations, she let me know my cognitive and short term memory recall may not improve for a good 4 months of rest, but she is hopeful some of it is chronic fatigue and stress, rather than all disease related. My neurophysio feels the same way given the transformation I got in a 1 week at Eden. She was also going to have a meeting with Gamze my old mind architect (how I like to look at any version of therapy!) of 10+ years to bounce ideas of other therapies that might help me with speeding up my recovery. So I probably won't get to the nominations above for a while, but once I have an ounce of energy, a functional brain, look out, hobby list!!!

PS Given the state of my short term memory recall (interestly my long term is the best its ever been!), you will have to remind me that I need 4 months rest, as I will forget and be impatient after 2-3 weeks. And then you will have to remind me you gave nominations to the two items above!! You will also need to recognise that I seem 100% functional in conversations… and I probably am in that moment, but very regularly now I will walk away with no recollection. Handy if you need a confession booth which a few have you have already worked out haha

PPS Thank you to everyone for your continued support. Whilst there will be continued waves of grief and loss, I’m actually in a good place with this decision after making the key calls to clients, contractors, family etc (yes I kept a check list - who, date, time & what covered!). They helped me to believe the future looks bright, just a totally different light to turn on. I’m excited at the prospect of spinning the roulette wheel and seeing life again without the constant fog, chronic fatigue and pain of being in survival mode running SOS on top of my health regime. It’s time for SOS to be about the traditional meaning of saving my soul and may I sync or swim doing that!! No more sinking with my health is the first goal and then valued time with each of you.

My pre-sleep meditation app gave me a great quote this week, spooky really:
The secret of change is to focus all of your energy, not on fighting the old, but on building the new ~ Socrates

PPPS If my my pre-sleep meditation app had feelings they would regularly be hurt or ecstatic… not sure… as I’m usually fast asleep before the 2nd sentence haha