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Looking after ourselves

Re: Just checking in.

Going okay here .... will check in again a bit later cos running now .... 💕

@Teej @CheerBear 

Re: Just checking in.

Snap with the frustrated trying to go forwards but feeling like I’m just head butting a wall @CheerBear . So sorry ndis is so stuck in red tape and nothingness. I hate that so many thousands of dollars have been spent planning but not the funding coming through straight after for the doing. 😫😖😖😖😖

 

I am wound up a bit although a lot better than when I came home from group. Today everything just wound me up. Have a feeling that hormones have been having a laugh. I missed a hrt a few days ago and spotted yesterday and have been 😖🤬since 😱

 

Re: Just checking in.

So much head vs walling @Teej 😑 I seriously feel stuck and really lost with it. I've tried everything I can think of and don't know what to do now and it sucks. My support letters say how much I struggle with this very kind of thing and how I need support to be able to do it but it I can't find that 😏 Sorry you're feeling that kind of head butting wall frustration with your situation too.

Blegh for hormones also and how much they can drive wound up. I am clueless with HRT stuff but have a dodgy track record with anything hormone related messing with me and I imagine it might be a similar thing. My new one is a bucket of not-fun too. With ya! Hope it settles for you soon ❤

Re: Just checking in.

💜🌈💐 @Teej @CheerBear 

Re: Just checking in.

I feel like giving up trying to find support through the NDIS. I get nowhere. I need a support worker and I'm funded (ish) for a kind of one but I'm waiting and waiting and nothing is happening. I try and communicate with the support coordinator to find out how long it will be and whether it is worth looking somewhere else and I get nowhere. Even if I was to look somewhere else I wouldn't know how to engage with them as I don't know how to make a service agreement or use my plan and no-one seems to want to help. I hear words but see no action. I'm funded for support to learn how to do this myself but I can't find it. I could try and find another support coordinator but there is an existing agreement with the one I have and I don't know how to get out of it. I feel like my hands are tied. I'm also chewing through my mental health care plan with my psych despite having plenty of NDIS funding because my psych and the support coordinator aren't communicating.

I knew the old system like the back of my hand but this feels like being thrown into the ocean and hoping I can stay afloat. I'm so tempted to throw it all away and give up trying. I'm tired of trying.

I have no idea where to go for help with this and I'm not used to feeling like that. I used to know where to go and used to be able to find support but now all I seem to find are closed doors.

I just needed to vent. Finding support shouldn't be this hard.

Re: Just checking in.

The like is for I hear you @CheerBear . I think the system may have mistaken the people who it was meant to serve as robots. 'It does not compute' so shut down is. Yesterday I looked into the respite program that I attended last year to see if I could still go. There was a ndis cost in dollars next to the programs which made me feel icky. To me it turned into a financial agreement more than support. I know the group running it aren’t out to make a profit but for the first time that sense of being a customer and looking for value for my dollar came in. This is all very cynical from someone who is not even going to access ndis. It has made me think though @CheerBear, if the ndis dollars are yours then how you use them should be up to you (as long as you use the funds for what you were given them for).

 

Here is fixit brain in full action suggesting things you’ve probably tried. Is there a way of finding a support coordinator that you can see has been helpful to people, like in a review of a service. It feels like so much of the funds are going into red tape. Next thing, can you get your psych to contact your support coordinator and bat for you how important this is. Perhaps a letter to the health minister (or opposition health minister) or someone in charge might help that vent be heard in places too. 

 

Sorry. Fixit brain will stop now. Thinking of you and sitting with you knowing how frustrated you must be feeling. I’m still wearing frustrated, angry eyes like mr potato head too 👀 , partly for similar things, knowing what would be helpful but feeling like it’s an impossible dream 😖. Also pretty mad at myself cause I’ve been so unmotivated. 

 

Some pretties for some cheer from me to you.Some pretties for some cheer from me to you.

 

 

Re: Just checking in.

@CheerBear  I really love @Teej 's idea of a letter to the Health Minister - the system is not working and they need to know how this is impacting people. It is enough that you have to deal with MI but then having to negotiate an inept system makes it nearly impossible. The effect that all this waiting and running around is having on you is immense. You had enough to navigate to be accepted as part of the NDIS now it seems like everything has come to a standstill and you are left wondering 'what next'. Really feeling big feels for you Hon - you don't need this at all Smiley Mad

 

@Teej  So often here we see or hear that support comes down to money (or the lack of it) - it shouldn't be like that. Health and education are so under funded and in some instances are completely broken - it is hard to put Humpty Dumpty back together when the egg is already scrambled Smiley Frustrated

Re: Just checking in.

So good to read about your day and the psych @Zoe7. I am still in awe of the butterfly emerging. It’s not been easy but you are getting there step by step. 💜🤗 (it made my grumbles a little bit less grumbly 😘)

IMG_4283.JPG

Re: Just checking in.

I totally agree @CheerBear

Re: Just checking in.

You know what @Teej  those early days with you 'by my side' were some of the toughest for both of us - how we got through them I have no idea but we both have and you have come so very far also Hon. I know you will be likely to reject this but you have continued to inspire me as you have battled and battled and continue to come out the other side - do not underestimate just how much your continued support has meant - you are always there in the background and that support means the world to me.  Heart💐

Maybe there are a couple of butterflies emerging here Hon Smiley Wink

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