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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 I am online now if you happen to be around for a real time chat. x

In response to: A long rave

Re: A long rave

Hey @Mazarita It is great you managed that European trip.

Even when things are not so good and energy is low, remembering the good times can be a boon. About 10 years ago I put up photos (one from England and one from Sri Lanka) of my overseas trip in 1981. It is just nice for my eyes to occasionally rest on one of the photos and bring back good memories. I have mixed them in with lots of photos of people many of whom have passed. It helps with socialising and can lft the mood when I mention or think of something sadder.

My support worker is the nurse and he has an MA and definitely earns his money, probably should be paid at a higher rate. My Support co-ordinator has been lack lustre, and is too young and privileged to be good at her job. She likes working with excel ... in her way she tries ... yesterday I was talking with someone who gave me confidence that I will be able to move to self managing soon. I just want to let things stabilise after my recent "breakdown" through November December. By time of plan review, I should be alright to do it. ... I hope.

@Zoe7

@Faith-and-Hope @Shaz51 @eth

In response to: Re: A long rave

Re: A long rave

@Appleblossom

In response to: Re: A long rave

Re: A long rave

🌸 @Appleblossom

In response to: Re: A long rave

Re: A long rave

Hi @Appleblossom

True that remembering good times can be helpful. I know that over my life I have done amazing things, things that have amazed even me. This is despite the huge toll the depression side of things has taken on the shape of my life. It's good to know that at least sometimes I have the strength, bravery and confidence to do big things.

Good to hear your support worker is so good, even if the support co-ordinator is not the best. With the organisation I am with, almost all of the workers there seem very young and relatively inexperienced in the real world and with not much experience it seems with understanding people with mental illness. They all of course have good qualifications but I wonder if some of them are straight out of uni. I find myself trying to understand this about them and not hold it against them too much, though I have found the organisation not that helpful in various ways.

Part of the issue here is that I have the Phams organisation pre-NDIS with which to compare the new one. That organisation was staffed by much older, more experienced mental health professionals with a much deeper understanding of people in our situation. They seemed more personally invested in our wellbeing and overall more profoundly helpful.

If I do get the NDIS I plan to leave this new organisation and find other support co-ordination. I am hoping my old support worker for two years through Phams may be able to fill this role independently of an organisation. She is now set up as an independent support person for NDIS clients and gives personalised yoga sessions designed specifically for people with mental and physical disabilities. This is the part I am most hoping for as I feel that a focus on my physical wellbeing will be most helpful with my mental and physical illnesses. Because of her past experience in the earlier organisation, I think she may have skills to be a support co-ordinator as well. She and I have become friends since that earlier time, though we see each other only rarely.

Sorry to hear you had some kind of breakdown in November/December. I am trying to find better acceptance of the ups and downs I go through, that these are perhaps likely to continue over my life, but that I may continue to deal with them better over time, as I have already from where I was when much younger and simply freaking out desperate for a 'cure'.

Good to be talking at some length again.

Maz x

In response to: Re: A long rave

Re: A long rave

Hi @Mazarita and @Appleblossom lovely to see you two connecting again. I'm missing from the forums most of the time these days so usually it's a case of leaving messages for people to see at another time. I just find that I'm busier in off-line life and need my times of doing little but potter around my flat and watch telly.

Maz thanks so much for all your positive comments about where I'm at at the moment. Like you, I don't expect my stable periods to be forever so want to make the most of them when I am. These days I'm on quite a cocktail of meds but they seem to be doing the job so I am compliant. But of course there's a lot of self management involved too. I still keep monitoring charts all the time.

Also like you, my issues with driving are about the vehicles around me being unpredictable more than anything else. But also with getting familiar with gradually expanded routes. And the fear that anxiety spikes reduce my peripheral awareness, which my instructor said is actually a real thing, not just something I imagine.

Nice to hear you enjoy the public transport in your area. I did start some public transport travel training some time ago, but didn't make a lot of progress before covid became a factor. I've not used it or Shebah rides since March last year. Don't know when I'll feel safe to do so. Also nice that C is able to drive you at times. He strikes me as a very generous person.

I didn't know you'd been overseas again in 2019 - I think that is since you last were here regularly but maybe I'm wrong. Was it connected to your video making? Way to go Maz!!

Maz and AB lots I could say here about NDIS stuff, as usual! Want you both to know you have the right to choose a different coordinator of supports - I did. I've been very happy with my 2nd one, who is a sole trader, social worker in the past, and is a very can-do kind of person who's worked in my town for a very long time and knows what and who are here. He was also an immense help doing my public housing application. It was a bit of a juggle ending my service agreement with the large organisation the previous one was with, but in the end I just gave them the notice they required to end the service agreement then cancelled remaining visits booked and started with the new one. He sorted out the NDIS end of things. But I am sure that whoever you choose actually has to be registered as a coordinator of supports with NDIS and I think there is training and a cost involved (not 100% sure how that is done).

Yes Maz it did take me 18 months and eventual involvement of the Administrative Appeals Tribunal to get accepted - thank goodness for my sister-in-law in particular who was my nominee and carer, and also my brother who supported both of us through it and came to meetings to take notes for us. I still feel very lucky to have them in my life. NDIS had actually rolled out here first in the country, back in 2013. I was eventually accepted in July 2018 having first applied early 2017.

Not feeling at all confident about recent changes NDIS has introduced and how they'll affect me. Independent Assessments, periodic release of funds, recovery coaches replacing coordinators of support ... that's just what I can think of at the moment. My plan expires the 1st week of July and I'm just hoping that the independent assessment doesn't apply to me yet. Apparently, even tho' when accepted initially the NDIS was saying acceptance was for life, ... now they can reassess your eligibility. So lots of unknowns. I do get anxious about it already and just have to keep telling myself that it's out of my control and I have a good team to deal with however it unfolds. (I try anyway!) But I am def not ready to go back to life without NDIS funding.

One of these days we will synchronise, but meanwhile I'm enjoying our dialogue and really love that you both are still here in one way or another, that we've known each other for so long.

Sending love to you both xoxo

In response to: Re: A long rave

Re: A long rave

PS @Mazarita I hope you've recovered from being sick by now. Take care xx

In response to: Re: A long rave

Re: A long rave

Calling out a big hello to all who've tagged me recently ... @Zoe7 @Faith-and-Hope @Shaz51 @Bunniekins @frog @outlander @Adge @Emelia8 @TAB @Anastasia @Angels333 @Libra @Exoplanet @MDT Sending warm wishes to all of you and think of you often. Sometimes feel a little guilty for not being here more but it's just how I need it to be for the moment. I was deeply immersed in the forums while I was a community guide and just need to step back for a bit. Hope life is falling into place and not too challenging at least some of the time for you all.

Best wishes too to @CheerBear and @Maggie

Stay safe and stay kind all xoxo

In response to: Re: A long rave

Re: A long rave

no guilt, take it easy @eth

In response to: Re: A long rave

Re: A long rave

It is lovely to see you here whenever you can be @eth You need to do what is right for you Hon so do not ever feel guilty for not being here more - we all have our own lives and our own abilities to be here when and if we can ...and that is okay - you are the most important person to take care of. It is heartwarming to see how well life is going in your new place and the sense of comfort you are feeling on your own there. I hope that continues and you keep growing and healing in such positive ways

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