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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

Hi @eth,

Yes, C and I are still traveling life together in the new place. It's been almost 18 years now. The much bigger space here is great for us. We kind of have one floor each, spending time with each other when we want to now, instead of being on top of each other whether we liked it or not. Especially since C quit work at the start of the pandemic, it became a bit harder to be in the same living room all the time. We were getting a bit sick of each other like that, but no longer. So happy days in that way.

Thanks for the heads up about AB being @Former-Member now. Hi to my old friend. Wonder how things have been for you in the past long time.

How did you come to move into public housing, @eth? I knew that it was being sorted as a backup measure to living with bro and sil. Surprised to learn you have moved there relatively quickly. I imagine there are good and bad things about that, like your panic-inducing experience recently. On the other hand, less parent-ish figures in your life?

The stage I am at with the NDIS is that they have asked for more information since it was applied for earlier in the year. The process is being almost completely managed by an organisation my doctor referred me to. I have done some group sessions there as well: art and now a gentle yoga-ish group. I actually told them I didn't want to apply for the scheme and gave them the reasons why: mainly the admin of it all bringing up too many negative feelings about my incapacities. As we have discussed before, I feel the process of describing ourselves on our worst days over and over is a form of negative conditioning. They talked me into applying by taking on almost all of the admin themselves. In the process I have been become more keen to get it if possible. Hopefully I'm not setting myself up for disappointment.

Will finish here for now in case you are online now and we can chat live.

Hi and have a good day to @Bunniekins, @frog, @Faith-and-Hope, @outlander, @Adge, @Emelia8, @Shaz51 (hello my scotirish sister!), and to all.

In response to: Re: A long rave

Re: A long rave

@Mazarita It is so good to have you back online now Mazzy!!:D Just like the old days xxxx Good luck with the NDIS. I have found it to be both beneficial and frustrating dealing with them they are after all a beurocracy lol. So wonderful that you and C have a new bigger unit and that you both still share such a wonderful friendship. Love you Maz peaxxxx

In response to: Re: A long rave

Re: A long rave

@Emelia8 Hey beautiful! How are you faring?xx

In response to: Re: A long rave

Re: A long rave

Hi dear Pea 🌷

I'm okay thanks. Only one more radiation treatment to go. 👍

But I am feeling soooo weary from it all. And becoming more sore by the day. Will be very glad when its all over. Its been a long four weeks.

Hi @Mazarita @eth 😄

Emelia 💕

In response to: Re: A long rave

Re: A long rave

@Emelia8 you must be. I think you are so strong and show such class. Love you Em

In response to: Re: A long rave

Re: A long rave

I have not read any posts since I was last here this morning. I look forward to it when I am well enough. Tonight I have a splitting headache and am about to go to bed. So I just want to leave a message for @eth, about us trying to meet up here in real time. Eth, I may not be online again until the weekend. Just didn't want you waiting tomorrow or other days as there are some more appointments I have to go to this week now. If the weekend is not okay for you, we can just leave messages for each other instead, and hope that a synchronous moment arises for us both.

Well wishes all.

In response to: Re: A long rave

Re: A long rave

Hello @Mazarita you've been on my mind a lot since you popped up again and just want to say how good it feels to see you again. Hope your appointments go smoothly over the next couple of days. My weekend is busy with morning and afternoon activities on both days, so it's unlikely I'll get online. These days I often have a few days at least where I don't come onto the forums. Balancing a busier life with need for do nothing time.

Fabulous to hear you and C are still travelling together and are now in a place that works better for you both. I think companionship is such a wonderful facet to have in your life. So ... re: my public housing outcome ... my application was held up twice by their error so it took about 3 months for it to even be looked at and assessed. My coordinator of supports was a great support and help and the 2nd time he rang them to check where it was up to he actually got a 'can do' person on the line, who assessed my application that day and I was offered my flat the very next day!!! They assessed me as priority medical (I had put in several support letters) and because I wanted low density, over 55 complex but said I can handle steps there was one available immediately. Apparently most over 55s say they can't do steps. I couldn't have hoped to be allocated such a wonderful flat. It's on the 1st floor of a 2 story building, light and airy, 1km from the beach and the back of the block is on the groovy strip in this town - lots of cafes, a large Harris Farm store, chemist etc all within a couple of blocks. Location, location, location!! Everyone says how lucky I am and a couple of people have said I've gone posh or yuppie! And then all 3 larger supermarkets have outlets within a km or so from home. Most of the tenants are very quiet and keep to themselves which is what I like. There have been a couple of unpleasant incidents (as in what caused my recent panics) but I am coming to terms with that being unavoidable almost anywhere these days. It's certainly not the norm here. But it did burst my bubble and take a bit to recover from. Very disappointing to be thrown back into that sort of full on reaction. I'm still cranky at the fact I could go there again, but have worked on it with my long term psychologist and now accept that anyone would have reacted to that situation. I have quiet single men on either side of me, one a bit too friendly at times but harmless mostly (not doing a line for me, just a bit inappropriate disclosure as if we are close friends but he was the one chased the intruder off with a jemmy bar) and the other very polite so far. We have to shuffle our cars at times but negotiate easily. I have made a do not disturb sign that I put on my door sometimes and Mr HaveaChat seems to respect it. And you are spot on about less parentish proximity.

I've coped with the transition to living independently with no buffer zone much better than I was fearing before it all happened, she said proudly!!

Which brings me to driving - I did lessons with a MH OT late 2019 early 2020 and am gradually increasing my time on the road. Still driving with someone with me, mostly a support worker since I moved, but on Oz Day I drove alone to my bro and sil's place. They are only 2km away. I am fine with the mechanics of driving and my licence was always valid, but the anxiety levels can reduce my peripheral awareness and I still fear having another black out or dissociating on the road. Just practicing familiar short routes and bit by bit extending my radius from home.

Last week I was offered a mini-residency by the writers centre for our region. It's for emerging writers who've been affected by covid. It will mean 1-2 days a week for 4-6 weeks (yet to be confirmed) and it's in an amazing location in a historical cottage at the top of a beachside headland. I decided to invite a friend to share it with me and it was okayed by the centre - and she is as excited as I am about it. Lovely to share that kind of joy. It won't start til early March so we've time to get ideas before it happens. There's no pressure to have a project completed by the end of it, just a dedicated space in which to write at an incredible location. I have a little sense of pressure about it but am working thru' that as it's too good an opportunity to refuse. I need to rise to the challenge.

I'm happy to hear you are being supported to apply for NDIS. That will smooth out the journey hopefully. If there's any way I can help just say so. I also went through the request for further information, as you probably know. I highly recommend gathering as many reports and support letters as you can (which you also probably already know). Including clinical psychologist, psychiatrist and OT if possible - they need to focus on the functional effects of your disability more than the diagnosis itself. In the same categories that were on you initial access request. You could also list C as an informal support and he could write a letter too. Just suggestions, these were the most helpful things I had. They tried to say bipolar isn't 'lifelong and significant' in my case and that was overruled by the AAT ultimately. My reports and letters all mentioned the ways that the cPTSD and bipolar impact on each other and what the symptoms of that look like. I totally get that having to focus on our worst days really interferes with our commitment and progress on our recovery journeys, and am here to support you at those times if I can. I think it's important to have a clear definition of what a recovery path looks like to you and have shared this : Recovery Model which works for me. It's hard to come up with clear goals for your plan; mine are quite simple and broad reaching - improved health and wellbeing, and increased social and community participation. I had that broken down into 7 separate goals but NDIS summarised them into those 2. So theres actually a lot of scope possible in what can be funded under those goals.

Sorry if I'm raving too much on the topic - I'll shut up and you can ask me questions any time. I've now had funding for 21/2 years and am 3/4 through my 2nd plan which goes for 2 years. It has definitely enhanced my quality of life and capacity building in many areas.

So this weekend what I'm up to is giving a massage to sil's elderly mum Sat morn, meeting with my writing friend (who I originally met at bridge) Sat arvo, my regular tai chi in the park Sun morn and then a Shibori workshop with another fairly recent friend Sun arvo. I'm not usually quite that busy on the weekends but am looking forward to it all. The recent friend has evolved into a strong connection and we understand each other pretty deeply already. We often talk for 2-3 hours on the phone and she visits here sometimes. I still don't go walking by myself either, but will start taking steps to that shortly. I've just focussed on settling in here the last 3 months. Hard to believe it's been that long already.

This is the first time I've done a long rave for some time - I'm sure I've said enough for one post!!! Take good care until we can meet in real time. Perhaps Monday if that works for you. I'm off now to an online zoom meeting of the womens' group of the disability alliance (which I'm also more involved in these days).

Hi also @Bunniekins @Emelia8 @Faith-and-Hope @Shaz51 @Appleblossom @Exoplanet @Maggie @CheerBear @Zoe7 @Adge and anyone else who might be reading this post. So many I could tag but I haven't got time right now. Take care and stay kind everyone xoxo

In response to: Re: A long rave

Re: A long rave

Thanks @eth ..... that is helpful for the NDIS planning I have to do with D2. It's all been held up by our legal :pile_of_poo:, but now s2bx is acting as though he has always been for her NDIS, when he actually started out our guardianship issue opposed to it ..... :face_with_rolling_eyes:🤬 .... just one of the many gaslighting manipulations .... but focusing on the positive, we are getting closer to up and going with it.

In response to: Re: A long rave

Re: A long rave

Hello my Scotirish Sister @Mazarita

In response to: Re: A long rave

Re: A long rave

Lovely to read your update and all the positive things happening for you @eth

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