Ian
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ipilko.bsky.social
Ian
@ipilko.bsky.social
Disability rights activist, talking hard to hear truth to power & holding them accountable. Warm polite nag, better w/caffeine. Vale octogenarian 4ever stubborn
Struggling to manage my pain, utter complete exhaustion layered with extreme fatigue. Well beyond tears on the pain scale.

This is a multi day flare up.
November 7, 2025 at 2:12 AM
My body is being a jerk, it’s freaking out my medical team and I.
November 5, 2025 at 8:52 AM
Looking like I need to move here from
The bad place, gosh it REALLY has become a cesspool especially in the last few hours/days. “Freedom of speech” if views aline with platform owner….
October 6, 2025 at 8:15 AM
on my soapbox again, "Before sending this feedback, I have read your Community Engagement Plan 2025/26 and remind you of your action plan item of inclusion."
October 3, 2025 at 9:52 PM
Well well well!

I’ve been asked if I’m media trained….. well now I actually am!

(Apparently i presented in a recent interview as media trained, until today i wasn’t formerly!!!)

Watch this space…
October 3, 2025 at 10:40 AM
So I've finally been able to download my first ever #NDIS forplan from myndisportal.

The plan has been written and funded as per the meeting.

I am lost of words, that and I can't see from the tears of relief streaming downn my face.

Absolutely life changingg.
September 11, 2025 at 12:18 PM
I have a complicated few days ahead. I’m already having unhelpful trauma/ptsd flash backs. Critical (crunch point) is Saturday afternoon/night. I may or may not post/share, focused on pure survival…
August 14, 2025 at 8:05 AM
Heading home in tears from the absolute disaster of an evening. Worst accessibility cumulative personal experience anywhere in the world.
August 1, 2025 at 10:44 AM
You know you've online shopped hard, when Startrack send you a truck with a powered tailgate and the truck reverses in!
July 22, 2025 at 4:31 AM
I'm trying to find a new #GP in the North Eastern Suburbs of #Adelaide I'm a disability support pensioner with a unique history/case mix. Multiple doctors/specialists say I'm a career standout patient (probably not a good thing) The cost to "interview" to check compatibility...
July 17, 2025 at 12:56 PM
Only ever had HFC/FTTN @NBN_Australia until a few days ago when I upgraded to "full fibre" #FTTP the low latency of fibre is amazing, the additional speed to handy, but the responsiveness of #EVERYTHING# is impressive. Finally giving my full @Ubiquiti #UNIFI #UDMPRO a solid workout!
July 12, 2025 at 11:01 AM
Massive day ahead tomorrow going to “suit up” with a neck tie,‘I’ve narrowed it down to these….
July 5, 2025 at 11:53 PM
How on earth am I so time poor?
June 16, 2025 at 2:37 AM
"Desserts, Sewing, Business, Management" Did you set this up @liangrhea.bsky.social spotted in @rundlemall #Adelaide #Library #CityOfAdelaide
June 7, 2025 at 10:25 AM
Got myself stuck in a shopping centre/area I’m not familiar with. Managed to get some over the counter support from a pharmacy but yikes…
June 7, 2025 at 5:47 AM
Had someone recently mention in relation to personal energy/capacity “I’m running on fumes” my only thought of what comes next? I’m not running on fumes I’m looonnnggggg past that!
June 4, 2025 at 7:48 AM
Took a decent tumble in the early hours of yesterday morning, I've got to find a better way of falling if that's what I'm going to keep doing. I can't sit right now due to pain, it's a pain in the arse! (literally!)
May 26, 2025 at 4:33 AM
#movinghouse
Starting to understand why I'm so mentally and physically beyond exhausted. Month to date, I've driven 1324.7km, not including taxis, plus the two hire-by-the-hour larger vehicles I've used. Ultimate juggling act with chronic health issues, which are made worse by "overdoing it" 1/
May 22, 2025 at 11:55 AM
Anyone else a Desky fan?

I’ve ordered a few samples to physically help me work out what to order.

The far left is “Finish: Pheasant” the rest should be fairly clear.

The decision fatigue is real, big few weeks ahead!
May 1, 2025 at 2:17 AM
Very close to literally signing a miracle opportunity. Look forward to sharing the update when it’s actually real.
April 29, 2025 at 12:28 PM
This seems quite ironically poetic,
Would have been even more so had the wheels fallen off!
April 29, 2025 at 3:20 AM
Don’t begin to think I’m immune to having IT issues.

Bought a new label printer for the move and went a bit fancy and started off backfiring.

Machine “auto detects” what labels you put in it, until it doesn’t.
April 16, 2025 at 5:42 AM
I need to move house urgently. I have an inspection of where I hope to move to on Thursday. How I physically move? NFI I can barely self physically move/think right now…. #help
April 13, 2025 at 6:45 AM
Had 5 paramedics visit me late Monday night (very early AM Tuesday)to extricate me under c-spine precautions after a fall. 2hrs on the floor, Ramped for 3hrs, 10hrs forced laying on my back. Thankfully nothing broken, incredibly sore still.
March 26, 2025 at 5:29 AM
I'm going to subtweet myself "If I told you, you wouldn't believe me" ain't life fcked.
March 24, 2025 at 5:56 AM