Well. Bugger. Today was the last gardening shift before thumb surgery, and she didn't show.

That particular care agency has really lost my trust. I'll be listing their assorted fuck ups for my case manager. #Disability #MECFS #MyAgedCare

I'll say one thing about being in the #MyAgedCare system instead of the #NDIS: when your case manager learns you've had a downturn, they actually ask if you need additional help.

#MECFS

I'm already at the upper limit of what the #MyAgedCare system provides. I'm hardly likely to be *less* disabled in 10 years.

But the #NDIS process had me feeling like there was so little for me, and so little *of* me, that things got...not good.

When they rejected my claim and I appealed, the NDIA set a lawyer on me. I had no chance.

But I really need to try again.

Oh FFS, apparently I can expect a phone call from my new case manager at some point which would be great except they know I have a strong preference for email.

But *they* think the telephone is somehow more, I dunno, personable? Professional? I don't know and I don't understand.

#Care #Disability #MyAgedCare

#Today I had a surprise home carer! I'd been told she wouldn't be working Easter Tuesday. Extremely lucky timing, because I'd actually been pootling about on my mobility scooter and literally got home as she arrived.

This makes up for the carer that didn't arrive yesterday on the public holiday, because she was unwell but her care agency doesn't have an after hours number, so she couldn't get a message to me. (Very good thing it was not a critical shift, hey? Social support and messing about with plants, not actual personal or domestic or transport help.)

#Care #MECFS #Disability #MyAgedCare

Some time back a matter arose with my care provider that warranted a formal complaint. My case manager and I discussed it just the other week and it is resolved.

Someone who I assume is further up in the food chain felt the need to ring me and ask me to call back about it today. Even though it's been ticked off the list. Everything was a bit chaotic at the time and I tried to answer out of the usual sense of obligation, which is often at its most powerful when my brain is foggy. But I was fumbling and missed it.

Having said that: there's a clear message on my file not to fucking ring me!

Email. Email. Email. You can't miss it.

I mean okay, sometimes there's a big emergency. But not often. And certainly not when someone up the food chain wants to do the glad-hand schmoooze.

I *know* (ask me how!) that if I point this out to her she'll tell me it's only a quick phone call.

Needless to say I don't plan to ring back. Or answer any unknown numbers. Back to my blanket rule of DON'T ANSWER THE PHONE lest I make a poor choice while brainfogged.

#MECFS. #Care #MyAgedCare. #AusPol.

And yeah, I am increasingly of the opinion that shit care standards are something you should read if you care about politics in Australia.

#Today my Crohn's flare feels like it's subsiding, without much more intervention from me that slightly upping my prednisolone dose.

But only sort of. I am exhausted and still have the runs. The real meds will be here soon. Not subsidised so they're $160 for a month's supply.

What I need to do today is attend to my goldfish, and push as many things around the house as I physically can, because a bloke is coming next week to fix up a chunk of kitchen for me, so I need to find somewhere to put all the things that I need to get out of the kitchen, which means making space elsewhere. Aiiie!

I also have a video appointment with my case manager, but I think that will be over quickly. Nothing she said she would arrange over the last 6 weeks has actually happened. So there's nothing new to talk about.

#MyAgedCare #CareIndustry

#Today the care agency sent me a random for meal prep. It does sound like she knows what she's doing, but I'm sick of this shit. You can't send randoms in to do this stuff. I reckon it can take a good three weeks to get a new person doing meal prep the way you need/want it done.

My care package money is going to this agency. If they can't deliver, they need to tell me.

#CareIndustry #Care #MyAgedCare

#Today I have physio, and then a video call with my case manager. I'm really hoping my physio can tell me what the hell I did to my left thumb the other day, and also tell me it's okay I don't need to go and get anything *done* to it.

My case manager and I will be going through the list of reasonable requests, that she okayed last time we spoke (last year), about which I have heard nothing. And then I'm going to ask about administering my own care package. Fun!

#MyAgedCare #Disability

Today is a day of poor care provision. I'm annoyed but see no point going into details. I'm going to have to take it up (and I will, don't worry) with my care provider. But not until the carer has gone. She's nice, doing her best, but HELLO if she can't do the tasks required in this shift, what is the fricking point?

To add to my concerns, my case manager is nowhere to be found. #CareIndustry #MyAgedCare