The last week was a blur. From the moment I wrote my last post until now.
Thank you for all the messages on the comments section and texts of support. I'm still raw I shared that much and I know for some of you it was a lot to take. But I'm also glad I'm out of the closet with my reality.

[Side note - the stupid system doesn't notify me nor you that a comment has been made, so you just need to check to see I've replied etc].

The 'week off' became a big adventure with a lot of moving parts.

Started with overwhelm on Thursday 11th when I was just finished physio (25mins south in Kingscliff) and got a text the NDIS would call within 1 hour. So I sat in my car waiting for over an hour for the call. Turns out Emma wanted to lock in a time for my NDIS final planning meeting that needed to take place on Wednesday 17th before 230pm or Thursday 18th before 3pm and would be done over the phone.

I said I needed a support person with me given my cognitive decline and the overwhelm of it all. I asked if I could call back with a day/time. She said no. I asked if she could call back so I could make some calls. She said yes. I was then given a 30min window. It was like 'phone a friend' on a Game Show but your friends had no idea I was on a game show and they needed to be on the ready to help me win the car.

Keep in mind I was trying to finalise some work to take my break with Brie Sunday 14th check out Wednesday 17th. So work is now on hold (again) and this now makes Brie a candidate if Elise couldn't do it (had always been planned Elise and I'd do it together given our geographic location and she's an OT who helped with the process). I couldn't get Elise on the phone (because you know, most people have a job and meetings and she didn't know both her and I were now on the game show!). Thankfully Brie was right to do any time Thursday but had to check as 1 hour she couldn't do and would text it through asap.

The NDIS lady called back. I said I hadn't been able to lock anyone in yet. She said, would it help if I just chose as this seems hard for you. I said, I suppose that's where it's at. She chose Thursday 18th 11am and said that gave me more time to sort my support person out between now and then. Just as I hung up Brie's message came through the only hour she couldn't do was 11. Then Elise's message came through the only hour she couldn't do was 11.

I drove home from physio, so overwhelmed I took 2 wrong turns and on an empty tank. Why the hell was it unfolding like this? So not fair. I took a looooong hot shower to gather my thoughts. Through the tears of not getting things how I wanted, I reminded myself that the universe has given me this path. There must be a reason and I can't see it just yet. A better plan will come and I have a week to see and find it.

Coincidentally (or maybe not), as I got out of the shower and Skye called (Elise's other bridesmaid with me, and also OT who's played a role in my NDIS process). She helped calm me and then offered to be my dial in person because the support person could be dialed in. But we both agreed, I'd perform better with someone in person with me and then need that person for comfort and debriefing etc after the meeting. So I had a Plan C locked in and had time to still find Plan D - the 'in person' support member. That felt better.

I then decided to check where Brie and I were even taking our holiday. I'd forgotten haha. Maybe after it I could go to Bris and rope in a Brissie mate to sit with me and quickly upskill them on hundreds of pages in the NDIS application. Turns out we were headed off to Beechmont (when I googled that I discovered we were north west of Palm Beach) and it was only 2 hours away from Warwick (where my OT is) or 1.5 hours back to Bris.

So I texted Janelle my OT to check her availability knowing Thursdays is actually when we usually catch up on my stuff or her business stuff. Bingo, she's free and could put the day aside. As Elise said, who better to be there than the person who wrote the report! So I quickly did a consent form for Janelle to run my session.

So, my 'week off' has taken a bit of a turn. I got myself booked to go from Beechmont to Allora (20mins out of Warwick) - slim pickings for accom as it is their annual Jumpers and Jazz festival fortnight!! And expensive but the most gorgeous cottage I've been in.... that SOS had to pay for as I was going to run a workshop on Friday morning for Janelle's business to make my visit worthwhile for them as much as me.

Isn't it funny how each time in life you think things are against you, but really you need to embrace its happening for your benefit, you just need to open your eyes, mind and heart to what the alternatives are.

So after that horrid day of overwhelm but late night resolution, I woke to Friday 12th with the same text from NDIS that they would call within the hour. Now my mind says "if these fuckers are changing my appointment I think I'm going to lose my mind". I could feel my blood pressure through my jumper pounding.

Thankfully it was the Complaints Lady Danielle. She was calling to go over my complaint. She was used to most complaints and agreed with them all but rather than just wrapping it up, she liked to interview the person to help escalate the impacts on the person rather than simply 'the complaint'. She feels like that is the only way to get change.

Turns out she'd heard it all (e.g. letter with no congratulations call, not meeting promised dates in letters, meetings attended without a support person offered nor knoweldge it would be 2-3 hours going over the awful elements of your entire life). But she'd never heard of the 30min game show. She was speechless with that!!! She said no human, no matter how healthy or cognitively capable, could handle the pressure nor expect to have people sitting around on a whim waiting for such an important call.

I took her through a few parts of the 2.5 year process, and basically ended my feedback on the understanding I had that the NDIS was set up and designed to help enable people who are functionally disabled and suffering and not usually too cognitively capable. To help ease that functional burden.
Yet, the entire process to get onto that support system is in no way enabling, supportive, or helpful. It goes 100% against the grain of what the system is set up to provide. I said I think there would be a stack of people far less capable than me and I felt so damn sorry for them given it has shattered the core of my soul going through the process. So it makes me sad to think how they are handling it given it's broken me, someone I thought was unbreakable.

She said she couldn't have summarised it better.

That's the end of Post 1 of the 2 part series. A couple photos below of the 'R&R' and the NDIS texts so you can feel the personal charm they exude to give you comfort of a better life coming soon haha

Post 2 - Just like a sneak peak on Netflix, Post 2 will be on actual NDIS meeting(s). But it's also a long story and I'm not quite sure I've got the words to explain how it went down and how I'm feeling yet. But lets just say it does have a happy ending :-) I'm hoping by tomorrow I'll have found the words now I'm home in Palm Beach and catching up my rest and sleep and thinking time.