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A long rave

A long rave

Edit Feb 2018: This thread has evolved into a chat thread, which is fine by me. In addition, I encourage other members to feel free to post their own 'long raves' in here too if wished. I will continue to post my own longer raves from time to time, as well as chat with friends along the way.

Original post from May 2016:

First of all, a (very) long post alert. Please don't feel obliged to read or respond. Mainly I am writing today to clear my own head of some things. So, here goes...

Last week, I managed to get to all planned appointments and activities every day of the week except Sunday. That only amounts to one, maximum two, per day, but was an improvement on previous weeks and months. I've made all planned appointments in a week before, but there have not been so many appointments in so many days consecutively. Many of you will know that, prior to about mid last year, I spent years very rarely leaving the flat. This was since the last of my breakdowns from paid employment in 2008 (one of so many similar breakdowns from paid working, though none as devastating in consequence as this last one). With each of these breakdowns, the recovery time got longer and longer. It's taken eight years to recover much at all this time around.

This week, so far, I've made none of my appointments or activities. In fact, I've not showered for days. Embarrassing to admit but maybe helpful to own up to it. As I write I'm still in what I wore to bed, as I was all day yesterday and the day before. The weird thing is that I don't feel that bad in my emotions, just crashed out physically and lacking almost all motivation except to use the computer. In other words, my mind and fingertips are alert and active, in fact nervy and overactive as usual, but the rest of me is crashed out. Perhaps I have entered what some people call a bipolar 'mixed state'. Whatever the terminology, this is where I am and I've been here so many times before.

The way I see it, there are a number of possible reasons for the way I am after last week:

  • inner conflict about how helpful my psychologist treatment is for me (saw her on Friday);
  • trying to further reduce my tobacco intake (the struggle seems disproportionately huge and exhausting);
  • needing recovery time from a big week (by my standards);
  • simply another manifestation of bipolar disorder in me.

Regarding the psychologist. She is young compared to me and I have the feeling that she may not grasp the full extent of my situation, partly through lack of life experience. Perhaps she may particularly lack an understanding of the various physical ailments that complicate things with me, some age-related (menopause, musculo-skeletal problems), one of them a chronic illness (crohns disease). She is treating me with some techniques from Dialectical Behavioural Therapy, something I honestly have never liked the sound of when I've read about it. The main 'homework' I have for this four week period is a sheet I am meant to fill out every night covering various things including tobacco use, coffee intake, isolating, unbalance eating, sleep patterns, lack of exercise. The sheet also includes sections monitoring mood every day. The problem I find is that monitoring and (by implication) tackling all these things at once is just overwhelming. I am significantly depressed after filling out the form because it seems to highlight all the ways I am failing rather than the ways I am succeeding. The psychologist has given me this sheet as homework once before and it had the same effect on me then. A full month long slump into depression is what followed. This sheet makes me feel very pressured to recover quickly from all of these things at once, a message that contradicts the advice of my psychiatrist (who I trust much more). His advice is to take it slowly and steadily and not feel rushed. As of yesterday, I stopped using the DBT form altogether. I am even considering giving up on the therapy with this psychologist after my next (sixth) session instead of seeing it through to the ten sessions my GP is willing to refer me for.

With the difficulty of further tobacco reduction, I am succeeding in reducing this a little more but the effort is gargantuan and seems to be sapping all the strength I have for making it out the door to my activities and appointments (or even to get dressed and showered). Writing here is just about the only thing that is distracting me from smoking again or thinking about it obsessively.

I've run out of steam on writing about it all now (a huge sigh of relief from any readers at this point).

I wonder if anyone else can make any sense of this.

27230 replies

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In response to: A long rave

Re: A long rave

p.s. @eth I just found out the meeting I have on the phone with NDIS on 17 March is called a pre-planning meeting, after which they decide how much they will fund my support. If you have any specific suggestions about that meeting, I would be more than pleased to hear them. ox

In response to: Re: A long rave

Re: A long rave

Hi @Mazarita just finishing a report I had to send before 3pm today. But here. Haven't read your posts yet but will in a few minutes. Just wanted to catch you xx

In response to: Re: A long rave

Re: A long rave

There's a group on fb for DSP seem to be very knowledgeable @Mazarita

In response to: A long rave

Re: A long rave

Hi again @Mazarita !

Firstly about your pre-planning meeting - if I were doing it again I would still make sure the NDIS know you want it face to face in person (if in fact you do). And whether you do that or do it on the phone I would make sure your wonderful advocate who has done so much so well is there with you. Sounds like she's done a fantastic job and really taken a lot of the pressure off you. What a find! EDIT : everything you ask for has to relate directly to one or more of your stated goals. I found that I had about 7 separate goals (with multiple specific things for each) that were summed up by NDIS into 3 quite broad goals, which actually worked in my favour in that it increased the range of things I've been able to use funds for. I was really stumped at first with the whole idea of having to come up with goals as I hadn't had any for so many years ... but I had help from my bro and sil to come up with some. You could do it with your advocate. At this stage the stated goals in my plan are 1. to continue to improve my health and wellbeing including giving up smoking (which I havent managed yet but I am a lot healthier); 2. to increase my social and community participation and build relationships; and 3. to have a more engaged and independent lifestyle. That's what NDIS summed them up into. The first 2 considered short-term, the 3rd a longer term goal. But my list that I took to my meeting was quite long as I worked thru' the price guide to help me form the goals (I didn't tell them that!). End Edit.

I haven't been through having a recovery coach so can't really tell you if NDIS will appoint one for you or not. They did appoint my initial Coordinator of Supports tho' but it's really important for you to know you have the right to find a different one if not happy with the one appointed. It took me a long time to find that out, the info came to me when I started getting involved with the disability alliance locally. It's an aspect of your right to CHOICE and CONTROL, which is NDIS speak but one of the most important things for you to bear in mind whenever choosing anyone to be part of your team. I do believe recovery coaches, as with Coordinators of supports, are either employed by an organisation separate from NDIS (e.g. Flourish or One Door - but I don't recommend either of them from bad experience) or sole practitioners - which is what I now have. They aren't directly employed by NDIS even if appointed by them at the start of your first plan. As far as I know recovery coaches do a fair bit of the same stuff a CoS does (but not all, they are different in some ways) but they get paid less. I personally much prefer to continue with my current CoS, but I've heard it is possible to have both.

Not sure how your plan will be managed - if you go with a plan manager (as opposed to either agency or self managed) then I could have more useful info for you.

Ah, the value of having a great mainstream medical team that works together in your best interests. Yours sounds fabulous and reliable, as is mine. You might find it valuable to ask for copies of any reports written about you by them for possible future reference. As I say, nothing about me without me.

I do believe that my case became a precedent with NDIS and has possibly paved the way for an easier journey for people with psychosocial disabilities, particularly when bipolar and cPTSD are both involved. They eventually realised they would lose at an AAT hearing and conceded to accept me only 2 days before the hearing was scheduled!

Re the writing - I love that we're both into it currently too. I've also been challenging myself to write short stories the last 2 years. Still no dates for the residency thing yet. Wouldn't mind getting inspired to work on something larger but uncertain about what that might be. I'm interested in the theory of the stages of isolation and maybe weaving them into exerpts from the journal I've kept daily since early March last year when we first went into covid restructions ... hmmmm. Just don't know how to get that to have any appeal to a reader. Or then there's the multiple stories I've written that are largely memoir but with poetic license thrown in and maybe linking them into a body of work. My mum calls my style fact-ion!

Look forward to hearing from you as always. Lovely to see all the well wishes you have received about your NDIS approval. And good to hear your gut problems have eased somewhat. Take care xx

In response to: Re: A long rave

Re: A long rave

❤️ @Appleblossom .....

@Mazarita, the advice I received was to ask for as much as you can - aim very high - with as many medical reports, quotes for services etc that you (reasonably) can, because the planners are obliged to knock some of it back. Therefore asking for the maximum of what you need / can use, and having it (maybe) reduced, will still see you right. Better to have "too much" funding while you work out how your needs will be met on your NDIS plan, than not enough.

I hope this is helpful 💕

In response to: Re: A long rave

Re: A long rave

In response to: Re: A long rave

Re: A long rave

Good morning, @Adge @Faith-and-Hope @eth @Appleblossom and all.

Thank you to those of you have given me some thoughts and advice about NDIS, really appreciated. Will process and post later in more detail. Need to go to sleep as soon as I can after a bit of a tough all nighter. Have a good one today.

In response to: Re: A long rave

Re: A long rave

@Mazarita A lot can vary with individuals who fill the role, but to start off with the labyrinth of NDIS, be focussed on your goals and the roles. Some people will gell more than others.

Hugs

Apple

In response to: Re: A long rave

Re: A long rave

Hi @Appleblossom just read your latest post in our conversation on Exo's thread. Thought I might pick it up again here.

Oh yes, @eth has had a huge role in her own recovery including big sacrifices in the 18 months leading up to receiving funding. Any of us need to put work in to get the benefits. We are the main drivers of changes. As my old psychiatrist used to say at the times when I was inclined to express gratitude for his huge help, he used to say 'you did it yourself'. It was his way of teaching me the power of my own efforts and my capabilities in relation to my own healing.

Me too with the trying to be contributory to society as much as I can, despite inability to work for money. My creativity plays a massive role in my sense of contributing something to the world. Similar to you, I was also told a long time ago by someone at Centrelink that I should be on disability pension, my mental and physical health struggles warranted it. It surprised me at the time (I was on newstart sometimes not able to even afford bus fare). I wasn't ready then to think of myself as disabled, though I look back now and see that I should have been receiving it from in my 20s.

Also relate to your words about being grateful to live in Australia with the welfare support here, compared to the lack of it in so many parts of the world. I really like that idea of seeing it as a kind of universal basic income, a concept I agree with for the world, as long as it is actually livable.

May there be times of enjoyment in your day, Apple.

In response to: Re: A long rave

Re: A long rave

@eth hey lovely, online now if the our times are in sync for a live chat. ox

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