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14 Feb 2025 11:03 PM
14 Feb 2025 11:03 PM
@Former-Member i got a new specialist support coordinator this week. I only spoke to her briefly today. This was all news to both me and her. If we had a few weeks my team could do new reports, but it's impossible to do anything in a few days, let alone on a weekend.
I won't even been included in the plan review, which is equally frustrating because I have things that I need addressed, I haven't had a formal planning meeting since joining ndis some 3 years ago. My life is massively different now since then.
And yeh, im drained. But I'm anxious and overthinking. I can't sleep.
14 Feb 2025 11:07 PM
14 Feb 2025 11:07 PM
@The-red-centaur it doesn't seem fair that they are giving you such short notice and not even time to gather information. I wonder if there is any way of getting the time extended to allow you to get things organised?
Totally get why you would be anxious and overthinking everything. I'm here with you ❤️
28 Feb 2025 04:01 PM
28 Feb 2025 04:01 PM
I feel so tired. I was in hospital all week with med changes. I get home today to be told I need to move house or the ndia will stop all my funding. I'm too tired to even care. My life just isn't worth fighting for.
28 Feb 2025 04:06 PM
28 Feb 2025 04:06 PM
I'm so sorry to hear @The-red-centaur, you've been needing to do so much moving recently. Needing you to move again sounds ridiculous! I'm sorry you're being put through this stress right now, is there any way you can argue against this?
28 Feb 2025 04:12 PM
28 Feb 2025 04:12 PM
hey @The-red-centaur i'm so sorry to hear this. i can't imagine the physical and emotional exhaustion you feel, the timing of all this is absolutely awful.
i wish there was more i could do to help. i'm here to listen and sit with you. you are worth fighting for, but it's okay to take a break from 'fight mode' to just vent/cry/scream/stare at the wall, etc. i know you have the strength to overcome this, you're so strong and resilient. still wish you didn't have to deal with this. sitting with you 💙
28 Feb 2025 04:34 PM
28 Feb 2025 04:34 PM
Hi @The-red-centaur I’m sorry I don’t know anything about the NDIS, but from an outsider it seems ridiculous that you have to move house to continue your funding. How is that
so?
However, I think your life is worth fighting for, regardless of obstacles that seem to be put in your way.
I feel tired reading your story, so can only imagine how you must feel.
Have they given you a time line for the move? Surely your team can apply for an extension given you’ve just been in hospital.
03 Mar 2025 09:23 PM
03 Mar 2025 09:23 PM
I feel stressed. Today was a public holiday. I'm supposed to have multiple meetings/appointments tomorrow to figure out a way forward with my ndis team.
What is stressing me the most is a gp appointment in the morning.
Im sick, again, and I'm so exhausted. I can't function. I have developed a pretty bad tremor and involuntary movements. I can't think straight i feel so exhausted and foggy. I don't know how to make my gp that something is wrong. I'm scared. The shakes are making writing harder and people are pointing out I'm not doing things anymore. I'm too tired to care about keeping commitments.
The thing is, I dont even have the strength to care how my life is turning upside down. I'm probably going to have move to the other side of perth, change mental health care, physicians. I'm going to have to move into a house with other participants that I don't know. I'll be getting less support all round.
My life just isn't worth it. I get it. Right now I'm just waiting for the clock to move enough so I can take my meds and sleep. I'm sick of being in pain. I'm sick of being sick. I just need to sleep.
03 Mar 2025 09:54 PM
03 Mar 2025 09:54 PM
@The-red-centaur i hear you. and i'm so sorry you have to experience all this.
i really hope the GP appointment and NDIS meeting goes okay tomorrow, fingers crossed they can offer you some more support and alternatives to moving so far. in case things don't go in your favour, know that its not a reflection of your worth. and if there's anyone who's resilient and capable of surviving big changes, it's you. i wish you weren't forced into such situations, but i know you're capable of overcoming those obstacles.
your life is worth it. you ARE WORTH FIGHTING FOR. i'm so sorry that you feel defeated and exhausted, and you have every right to feel that way. but there is still hope. i still have hope for you. sending you gentle hugs, love and energy 💙
03 Mar 2025 10:09 PM
03 Mar 2025 10:09 PM
@rav3n thank you.
I made new a thread to express a few things.
Tbh I'm scared. I don't how to do this rn.
I used to have a body that contined despite my mind. Now my body has been failing too.
I am thinking I don't want answers, ignorance is bliss right?
04 Mar 2025 08:16 PM
04 Mar 2025 08:16 PM
No answers just more investigations. I guess it's better than nothing.
Part of me wants support and comfort. Part of me want to talk to my family. That is the worst thing because I know they will make things worse. I wish I had family that cared, or anyone for that matter. I wish I had someone on my side next to me, telling me it's going to be OK. I want a break and let someone else deal with the big decisions, I wish I at least could get an advocate for some of this stuff. But I'm too tired to try to find an organisation or provider willing to help.
I'm scared for myself and my future. When I started having hope and dream for my life and actually wanted a future things outside of my control is jeopardising all the things I fought for. I can't keep doing it. I wish I just didn't about myself again, because like what's the point, coz when I started caring about my life it was taken away.
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