Lived Experience Forum

[eth]

Yep @Mazarita   How's your day been?

[Mazarita]

@eth sitting at the computer a lot. Realised it is the thing that has been giving me very puffy ankles at times. At the moment I've got my legs on a footstool under the desk, hehe. Been editing some of poetry this morning. How is your day going?

[eth]

Sounds like the footstool is a good idea @Mazarita   I had a big weekend of down the NDIS rabbit hole - at least 7 or 8 hours over the 2 days.  And the fallout has hit today in a fairly major way.  There's a new policy document I found on their website and I wanted to read and understand it before my ap't with my coordinator of supports (CoS) tomorrow morning.  It's the "Planning Policy for Personalised Budgets and Plan Flexibility"  and there's heaps of useful stuff in it but lots of changes (they won't be changes for you coz this is probably where they'll start with you - dunno).  But it's a 28 page document peppered with links to other documents....

https://www.ndis.gov.au/community/have-your-say/planning-policy-personalised-budgets-and-plan-flexib...

I have become "compulsively accretive" as my sil once described me - again!  OCD part of cPTSD manifesting.

Spent 2 hrs talking about it with my support worker today (sw) and even had a cry.  Then bombed out for a while when I got home.  But remembered I'd said I'd be here now as I took myself back to bed.  this is better!

Best post this or I'll miss you again.

[Mazarita]

Sorry for a bit of a delay, @eth. I was doing something with poetry on another tab while waiting before. Will answer more now, in next post.

[Mazarita]

Obsessiveness was what took me overseas in 2019, @eth. I almost literally spent every moment of every day working on it for the whole year. In the second half of the year my physical health was declining badly, as it has done before under stress like that. Sleeping more and more, only came to life for that 28 days overseas, then collapse from burnout. At those times there's really no stopping me. It's like one person trying to stop a runaway train.

[eth]

I knew you'd get it @Mazarita  Thanks.

I've now been told that the writing gig will start in April and am hoping to do it 2 days a week for 4 weeks.  I have a friend who will do it with me.  I'd really like to get into some sort of writing flow before then and can only wish that this NDIS stuff doesn't stop that from happening.  I don't want to waste such an opportunity.

[Mazarita]

@eth I have been very nervous and worried about the pre-planning meeting with them. I had some sort of breakthrough with it yesterday. I could feel my body relaxed as soon as I had the thought/feeling. What it is is that I want to speak honestly from my heart at the NDIS meeting, taking into consideration the practical things I've been advised by others. I think the more connection the NDIS interviewer and I find during the meeting, the better the chances of being helped. As my friend here said yesterday too (did I tell you she has been accepted for NDIS as well?) - this is the part where they actually start to help us, now that the the approval is done. Close friend said the person who interviewed her seemed kind and understanding. Still having some worries, but less. Will still be looking to do a bit more preparation in the leadup but, yeah, honesty.

I also think I've been so worried because one part of me is in denial about being 'that' disabled as to warrant it.

[eth]

I agree wholeheartedly with your approach to the pre-planning meeting @Mazarita .  Yes you had mentioned about your friend getting accepted.  How great that you will both have more capacity for your goals at the same time.  My friends at the disability alliance who've had NDIS for longer than me have been a great support at times and helped me exercise my 'choice and control' in significant ways a couple of times.  I might reach out to one of them when next I am able to delve into it.  Just the meeting with CoS will be enough of it for tomorrow.  I have my tai chi class with a sw tomorrow evening to take my mind off it all.

Also going to sil's mum's place for dinner tonight - will be here for another 1/2 hour tho'.

[eth]

@Mazarita  Another thing I did on the w/e was go thru' that list of questions I sent to you and answer them myself.  Brought back lots of memories about different ways of wording answers.  I think the crux of the matter is that they understand that bipolar is for life (tho' I'm not sure this is what you've been accepted for) and that it is episodic.

I do remember that I prepared as much as I could but then shortly before the meeting (I've had 2 and am now in my 3rd year - 2nd plan was for 2 years) I went into this zone of "well I've done my best, all I can do is be myself on the day". 

[Mazarita]

Nice that you will be having dinner with SIL's mum, @eth. I remember when she was teaching you Bridge. 

Tai Chi is good for anxiety and from the little I've done of it, quite beautiful and balletic. Surprising how such slow flowing movements can really exercise the body.

I only just worked out some goals. I usually avoid them like the plague. Even the word has this hackneyed psych-speak ring to my ear. This is what I've come up with so far:

1. Improve my capacity for engagement with the world outside my home.
2. Maintain and continue to build on these improvements in an ongoing way.
3. Improve my fitness for its benefits on mental and physical health.
4. Maintain and continue to build on these improvements in an ongoing way.
5. Improve capacity to independently look after myself with grocery shopping, cooking and cleaning.
6. Maintain and continue to build on these improvements in an ongoing way.
7. Improve capacity for monitoring and minimising the negative effects of bipolar mood swings.
8. Maintain and continue to build on these improvements in an ongoing way.
9. Improve my capacity to manage anger.
10. Maintain and continue to build on these improvements in an ongoing way.

I probably shouldn't have so many but I trust that the NDIS interviewer will be able to synthesise in a way that may be similar to what happened with you. My support/advocate may have some input at our Wednesday meeting as well.