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Serenity1
Senior Contributor

NDIS stress is it worth it

I have a really great support worker now from PIR helping me to apply for the NDIS-

i still don't understand what it even is no matter how much she tries to explain it to me. 

She had obtained my medical records from the hospital psychiatrist & I wanted to take a copy home myself to keep & read - she printed me off a copy & I started flipping through pages- there was a lot there it went years back-

then she suddenly snatched it off me & said I should not Take it home to read- I must have had a worried look on my face-

i understand why she did this, she was trying to look out for me & not re traumatise me. But-

i feel sooooooooooo uncomfortable with her including papers from my medical records- when I don't even know what they say!!!! 

I feel sooooooooooooo uncomfortable with applying for this thing when I don't even understand what it is!

i am sooooooooooo paranoid & I don't trust anyone from past abuse & trauma- like not a single Person-when your entire family has abused you & ganged up on you your entire life , in every way , shape & form-even trying to have me falsely arrested- when I was physically assaulted by my mothers narcissitic husband- he called the police & said I assaulted him- I didn't- & my teenage son told the police officer it was my fault, when he didn't even see the assault on myself happen-which would have led to my two year old daughter going into care as she had no-one to care for her if that happened- it didn't happen I didn't get arrested-because I did nothing wrong-

I really don't think I can go through with this- but I don't feel I have another option-

my quality of life is so shiz I'd rather just not even bother with it anymore-&

I am trying the best I can for my child but the agoraphobia is taking over my life along with the C- PTSD - I am scared my daughters going to be taken away from me if I admit to how bad I have gotten- I am not abusive or neglectful- I just can't leave the freaking house, do anything & am constantly in tears-

since my Narcissitic mother died 3years ago-who was pretending to "help " me with my agoraphobia & anxiety- but was really -( I didn't realise)-abusing me, enabling me& controlling every single solitary aspect of my life - it has really hit me last year & been going downhill till now -I have no life skills & cannot cope. 

-I am meant to be looking for a new rental property because can't afford this one but I cannot because of the agoraphobia-so I am literally physically stuck in this house that is negatively impacting my mental wellness- but I can't get out of this house literally-

- am meant to go to dentist desperatly needed but can't because of the agoraphobia- am meant to go to physiotherapist for severe neck pain that has had me immobile for 3 weeks crying in pain because painkillers are not working but I can't because of agoraphobia-

- meant to vote- but can't due to agoraphobia-

the list goes on & on- thank God I can get daughter to school & play dates but that's about it!!- she is my security blanket-

literally couldn't leave the house from Friday when I picked my daughter up from school- all weekend last weekend till Monday when I dropped her at school again cause was triggered from Mother's Day-

- I can't live like this anymore- but don't think I have the strength to go through with this NDIS thing- I think it's going to give me a breakdown- IV been reading some of the posts on here & it seems like a huge hard fight that most likely will come out with nothing- I don't think I have it in me 

12 REPLIES 12

Re: NDIS stress is it worth it

hi @Serenity1 i havent gone through NDIS but i wonder if @greenpea or @eth could help you. weve also got an NDIS thread on here too

Re: NDIS stress is it worth it

Hi @Serenity1  welcome to the forums.  Sending you strength and clarity including around NDIS stuff.  I've had it for nearly a year.  One of the really good aspects of having it has been funds for support workers to go out with (I have agoraphobia and social anxiety as part of complex PTSD with bipolar 1) and funds for weekly psychology. There is a thread I started called 'Anyone started with the NDIS?   https://saneforums.org/t5/Our-stories/Anyone-started-with-the-NDIS/m-p/157210?advanced=false&collaps...

which might be helpful to you.  It journals my journey from first applying until a few months after I got it and has some really useful information in it, especially pages 56 and 57 for getting ready for your planning meeting.  Quite a few other people have shared about their NDIS journeys there too.

Feel free to ask me specific questions about it if you want to.  When I first started out it felt like learning a foreign language, plus the NDIS website is huge and hard to navigate, quite overwhelming at first.  There is so much I could tell you but I think answering specific questions you might have would work better.

It was a long battle for me, a roller coaster of emotions, but overall I'm very glad I persevered - I got $55000 worth of support in total.

 

Re: NDIS stress is it worth it

I am sorry I will be honest and say I didn’t read your whole post as I am struggling a bit atm but the ndis is worth it once all the supports are in place and setup and ready to go but it is a huge hassle trying to set it up and honestly I think that is half the problem I have some funding that I cant use because I am having to much trouble doing the admin side of things and no one is around to help so I am just not getting support. But if someone is helping you set it up then I would say go for it. Also they don’t share any medical records with anyone else unless you give them permission. 

Re: NDIS stress is it worth it

@eth Thankyou so much for your reply!!
I really appreciate it!! It sounds like we have similar difficulties- I also have Agoraphobia, severe anxiety, & depression & C-PTSD-as a result of childhood & lifelong abuse.
I have not been formally diagnosed with C-PTSD-but I just know from research that is definitely what I have-
How did you get formally diagnosed with C-PTSD?- do you go to a physiologist & tell them your experiences & they diagnose you?- I can't remember how I was diagnosed with the other stuff it was so long ago- & my memory has gone-
I was reading your post that you mentioned & it Really started to freak me out- I just don't feel I am strong enough to be able to cope with it all - everything I have read- is leading me to panic attacks, can't breathe, can't stop crying, insomnia, can't function- I know I won't be able to manage-
I have just sent an email to my support worker explaining exactly this & she has told me in reply she is handing the forms in this week!!! I feel I'm being pressured into it- I understand she is only trying to do what is best for me & that her funding for her company will end at the end of this year so she is trying to help me get through the process ASAP- but I don't think I will cope! I'm really scared & paranoid about the whole thing- it feels so unsafe .
That is incredible the amount that you got!!??! Just unreal- so what have you been using that towards?
I can't think of anything specific to ask at the moment- but thanks for the very kind offer- if I Think of anything I will ask you-
I am scared to be given that amount of money- I don't think I will get accepted anyway initially because I don't have a psychologist that I am seeing & from what IV read they turn you down if they don't have that & other ppl written support-- thanks again for taking the time to reply & your kindness- all the best!

Re: NDIS stress is it worth it

@Eden1919- thanks- that's completely ok- I totally understand!!
So you were accepted by NDIS & you have funds- but can't use them because having difficulty with the paperwork side of things-? Is that correct?-- I would be 💯 exactly the same- I'm scared of all of that-

Re: NDIS stress is it worth it

@outlander Thankyou so much! 😊

Re: NDIS stress is it worth it

@Serenity1 @Eden1919   I have a coordinator of supports and also a plan manager.  I highly recommend asking for both.  They have been crucial for me in finding supports, communicating with support organisations and taking care of the invoicing/payment part of it all, especially getting me support for things I didn't know I could use NDIS for.

 

@Serenity1 even a GP can diagnose complex PTSD - that's what happened for me.  But you have to tell them your history in detail and how it effects you for that to happen.  Same goes for psychologist and psychiatrist, both of which a good GP will refer you to.  I had one GP for many years who didn't, but as soon as she left and I saw someone younger I was referred for both.  However, my diagnosis of bipolar 1 was not until I was 46 years old (10 years ago) and it took a psychotic episode and involuntary hospitalization for that to happen.  Long story short.

Re coping with the NDIS roller coaster - all I can say is that some days you just have to remember to breathe, deep and slow, and rely on your support person as much as possible.  And tell them what you are going through.  It might support your application for NDIS supports.  It is hard, was for me at several turns in the journey, and still causes me much anxiety as I'm preparing for my 1st year plan review atm.  There are fb groups that can support and advise you - just put NDIS on your fb search bar.  I'm not allowed to say their names here for reasons of anonymity.  I found them really helpful and a good source of resources and advice.  I also reckon a psychologist is virtually essential as reports from clinically qualified people really help.  They need to write a report that states your MH is 'lifelong and significant' and go through 5 areas of functional impact (the same 5 are on your initial access request - application form).  I also recommend keeping copies of every single document and communication with NDIS (even the ones other people like your support worker do) so you can have a 'paper trail' of all interactions with them, deadlines etc.  My policy on paper work is 'nothing about me without me'.  If you are unsuccessful you can appeal their decision with further evidence and after that if you still don't get accepted you can get a Disability Advocate (google them) and do an external appeal through the Administrative Appeals Tribunal (google it too).  I did all of these things.

 

I use it for support workers a few days a week to get me into the community, to essential appointments and errands, to exercise more, have a transport allowance, weekly psychology on top of that possible with the mental health care plan;   too many goals I'm working on to list here - but having clear goals is also essential for your application process. I also get reimbursed for a physio based water tai chi group twice a week.  And it also pays for the coordinator of supports and the plan manager.

That's enough for now.  I still recommend reading the other thread as there's answers to a lot of the questions you will have in there.

Take care.

Re: NDIS stress is it worth it

@eth Thankyou so much! For all of your help! I have read it and taken it all on board-it was very helpful advise!
I REALLY appreciate you taking the time to help me out😘
@eth did you have a support worker help you? Or did you do it by yourself?
Thanks again xx

Re: NDIS stress is it worth it

@Serenity1  yes some of the funding i can acess but some i can't very frustrating. 

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