Lived Experience Forum

[Appleblossom]

@Willy 

Good to hear from you.

I have gained a great deal over the years from relating to people who post on here.  From reaching out to people on the fringe, whether or not they continue to post or feel good enough to move on and also posting about my own struggles. I am used to being in helper mode, so it comes natural, and gave me a sense of purpose.  The internet is a new evolving beast in the human world, and I had been loath to engage, so when I finally did, it was good to be able to sit at home, in my own time, and type on my computer with a sense of meaning. Yes it is mutual.  There needs to be some mutuality in all dialogue.

I tried to fight for the right for all ages to be a part of the forum, by not buying into, any one way of looking at the world or sanity, but holding space for young and old and male and female and variety in ethnic backgrounds. In reality is diversity is very complicated. 

Yes there are problems with so many people believing the experts about themselves, rather than trusting their own experiences.  This is one youtube ...  Medicating Normal.

https://www.youtube.com/watch?v=YC5aBjG8JKI 

Awareness is growing.  Had not finished it. Will look at it now.

You posted: "Unless I decide to take myself out, ..."

That phrase occurred in my own thinking OFTEN.  It arises less in last few years.  I see it as a link in the long chain of changing forms of my own suicidal ideation.  It has an element of distancing from the self about it.  The "I" and the "myself".  There are also theories about a first and second self in music performance.  

I am a bit cross about the contemporary concepts of risk assessment with regards to suicide.  Given my personal history and observations, I wonder if it is more about managing the RISK of Organisations and Professionals, from litigation and being sued.  It is far too heavy handed and traumatic and triggering to much use to people who are actually suffering.

You posted: The thing that worked best for me many years ago was a support group similar to this but not online. I think what worked most for me was the support, acceptance and encouragement from the group. I also discovered fairly quickly that I had all the wrong ideas about feelings and emotions. I was following what at the time was popular thinking and it was leading me down the wrong path. That may have just been me but it was a big important discovery for me at the time.

I am interested in your ideas about feelings and emotions ... what was popular and what was wrong?  I seem not to share the language of feeling and sharing that seems mainstream, though I have certainly experienced many feelings and do not really relate ... to concepts of feeling empty, but am often at a loss of putting those feelings in words.  I regularly look at feeling wheels and things ... but still not good at it. Tbh I am not sure it is all that normal ... cos these days I see many issues in the all "normal" people I meet.  

I find music helpful.  In last year was playing through a lot of nostalgic songs for aged care and found it interesting the way the content of the songs, shifted my feelings, from playful, romantic, heart weary, cheeky, proud, nationalistic, sentimental ... all sorts.  I like blues, jazz, a litle rock, baroque, big R Romantic and classical.  I find different instrument give a different experience.  I play a few and sing a lot, but mostly choral.  I do not relate to the female soloist at all, in folk, jazz rock or opera, but like singing in harmony and having those kinds of challenges.

I do not feel I fit into either histrionic or hysterical or detached intellectual modes, but due to an early therapy which foccussed on being in the body and feeling ... but not talking about it ... I have a big range. 

Re: standing "under" to reach understanding

After father died I was a good girl and studied and did a little science and electronics with my brother, mother made sure I worked in and out of the house, and financial pressures drover me out of the home into the workforce young.

Physics and circuitry aint the best in dealing with normal people, love and sexual maturation ...lol... beyond some woo woo woo ... noises and allusions to laws of attraction  and magnetism.

Somehow that overall experience made me analytical about most things even those most mysterious and difficult to analyse.  Given that I had to deal with technical dehumanising phrases about my intimate family relationships it is probably a consequence.  So it has taken a while to put the human back into my story ... pad out ... the life behind that strange word "schizophrenia" and simply survive.   

In another way of looking at things if my daddy had survived and been able to father me, I probably would have been more girly and known all the girly feelings words.  

VMIAC

Like Sane, and all things people, it has its strengths and weaknesses. I am trying to stay abreast of current things in the field and not only look backwards.  People and organisations tend to have power needs and differentials.  

Other stuff 

Picking one's battles. 

There are many issues and you know the most important things to fight for in your life.  Good Luck with it and I am happy to listen to your experiences as they unfold.  

I am going through my own process of working out which battles I need to pursue.

Apple

[Willy]

@Appleblossom 

Hi Apple,

There are lots of things you mention that I am interested in talking to you about but as I have said the Sane forum format doesn't work well for me. I tend to look at your post and mark it and then come back to it when I have time to respond in detail. That could be a week or two latter. It is certainly not spontaneous.
We seem to share similar "academic"  backgrounds and interests. I studied electronics back in the 1960's at RMIT. From memory it was called communications then and was all about broadcast transmission and reception. I think we did one  or two semesters on "transistors" which were the new thing then. I managed to get  job in medical research at Monash University and did some further studies there including computer programming but never finished a degree. Even at that stage I think the schizophrenia was starting to kick in making life difficult or perhaps I should say fragmented and driving me all over the place as in crazy. Another shared interest seems to be music. I played electric guitar in rock and roll bands as a teenager ++ and had lessons in jazz guitar but never got to play in a jazz band until quite recently. I picked up music again in my early 40's and played in an ethnic band (Turkish music) for about 10 years until it started to fizzle out.   Then I bought my clarinet, with intentions of joining or trying to form a jazz band but it again didn't happen until quite recently. Instead I finished up in a local concert band which has tended to be "challenging". I read music but not fast enough to just pick up a piece and play off the score which is what  is required in the concert band. Furthermore the music  is sometimes complex with multiple and sometimes challenging keys and changing tempos in the same piece of music. I often find myself playing and someone will lean over from behind and hiss  in my ear, "you just played an A instead of an Ab" or similar. I find this very triggering. I often come home from band practice feeling quite despondent and because of a combination of "voices" and concentration problems I often have difficulty understanding what the conductor is saying. The other night we were playing a gig and I suddenly realized I had the wrong piece of music open LOL. I often don't pay much attention to the written music once I have a rough idea of how the piece goes. I often seem to do better just playing by ear.

I am off this afternoon to play jazz with the jazz group that I have been hanging out with for about 6 month now. It is always a much happier and friendlier experience.  With the people I hang out with, Jazz is considered an aural tradition so written music is not seen as very important and in any case the music we use is called a "fake sheet" which is just a melody line with chords. We just improvise over that which I find much easier. Of course there is an art in doing that well but "that is jazz".

From hereon I will keep my posts shorter and more succinct and try and reply more or less straight away. I do this with some other people using emails and I think it leads to a more conversational style.

Regards

Willie
    

[Appleblossom]

@Willy 

You did more electronics than I and earlier than I.  Did you ever go to Rick Smiths near Spencer Street (!970s??)?  Compared to then, the newfangled stores dont seem authentic. (not allowed to type his real name, lol ... but you can probably figure it out.) Had boyfriend whose dad worked for Radio Australia and used to technical stuff around.  Did Earth Science myself, but studied allsorts.  Thank God for Gough.

I had a lovely jazz afternoon too, not playing, but we did get up and dance.

Your jazz group sounds good. Finding a group to hang out with and have fun and make music is special.

There should be no need to get rude about mistakes, even in the concert band. Sorry it happened, I have been told off by note police in a choir, when I began I would sing something in the chord if I did not know ...lol  Some people get very territorial, but its no good if it sets off voices and gets you down.  Maybe keep looking for a good musical fit.  

Most musical performers would have had that experience of wrong page open ... lol

I am opposite in music reading, and would love to be able to relax and improvise more. Different strengths and weaknesses.

Respond when and how you can. Thats fine. I tend to be on here often, but also looking around.

[Willy]

@Appleblossom 

Hi Apple

The parts store you mention if I understand you correctly is in West Melbourne. I purchased parts from them for many years and more recently for a new PA amp that I am building for one of my music projects.

Like you, my earlier life was very logically driven even though a lot of that logic was probably often connected to irrational ideas. As time went by my thinking evolved into more shades of grey where it mainly is today to the extent that my logical and rational mind probably plays more of a secondary role.

Music note police, thought police and real police seem to forever be a triggering thorn in my side.

I am not sure where this sensitivity came from. It seems to have been a problem from a young age, along with a number of other idiosyncratic behavioural issues I came from what I would consider to be fairly normal family background. As far as I am aware, I was never treated much differently to any other child of those times. These aberrant behaviours just slowly evolved to the point where they eventually became defined as mental illness. Things took a dramatic turn for the worse after I was involuntarily hospitalised for several months in my early 20’s.

According to my current psych, a lot of the problems I experience today are due to trauma from the psych hospital experience. Until recently I never really thought about it. My way of coping was to push anything that happened behind me and just get on with things. This strategy worked in a fashion in as much as I have always managed to be quite high functioning, even by norm standards but the consequences at times were quite horrific. I look back today and cringe at some of the things I have said and done.

In regards to trauma, I also wonder if some of us have an innate disposition to be more affected by certain events. Perhaps it is the way we experience things rather than the events themselves that are the problem. Just wondering.

I have just started writing a detailed complaint to the Victorian Ombudsmen about the Mental Health, Complaints Commissioner (MHCC) etc. It is now 8 months since the mental health authorities forced entry into my home in a way which I believe was illegal. Through multiple emails etc I have built up what I think is quite a strong case against them for failing to deal with the issues as required under their government charter. I am quite amazed at some of the things that they put in writing. It is almost as if they are asking to be investigated. Maybe they are.

I participated in my first online Victorian Mental Illness Awareness Council (VMIAC) today. They all seem to be “nice” people. While I think I can see what they are trying to do it is not really my idea of the way you get things done. I guess time will tell. I mostly just listened today and followed up on someone else‘s question with my own about resistance to change within the system. They tentatively acknowledged that there were significant “pockets of resistance” which were still responsible for much of the ongoing abusive practices. I got the impression however that they were not overly comfortable talking about these things.

Anyway it looks like I might get a chance to confront the enemy first hand very soon. There is a face to face meeting with Victorian Mental Illness Awareness Council (VMIAC), Tandem, and Mental Health Victoria in 3 weeks time. I put my hand up to attend.

I am a bit nervous about meetings. Apart from triggering issues, I have a hearing problem or more correctly an understanding problem which seems to be related to audible hallucinations. The more stress, the more background noise I have to deal with and the harder it is for me to understand what people are saying. This is generally not a good thing for meetings. I suppose one can only do their best.

Regards

Willy

[Appleblossom]

@Willy 

How are you going?

I am not even sure I was that logical when I was young.  I just did the next best thing to deal with my life that I could think of. I did not have an accurate idea of the world, (seriously not normal childhood) so looking back on it my choices seems foolish, at times idealistic, high risk taking and illogical!  I did "trust" sciencey types, possibly as an antidote to too much religion, control and lack of knowledge in my childhood, could speak the language, and felt optimism at the supposed clarity. Though do not see science and religion as mutually exclusive.  My analytical capacity is more evolved now. 

But I survived when many around me did not, so I must have done something right.

I find it interesting that you say you had a normal childhood but developed serious mental health problems.  There must have been significant disconnect for you to end up hospitalised. 

My ex husband also had that scenario, and for him it was daily dope smoking for 20 years. I See those issues as lifestyle and generational disconnect.  I reassured my father in law ... that his son was doing really well dealing with his psych problems... no smoking (any kind) in the house cos of kids ... he got "better" cos of healthy living ... but my physical and psych issues deteriorated.  But nay I did not "catch it" off him ... wry laugh!

Not much about my childhood was normal, so I wondered thru life with my Bell Curve ... "lens" up at the world trying to figure out how to fit in! Was not put off label of schizophrenia, cos parents supposedly had it. I just tried to help.

The woo woo world of feelings ... and intuition seemed weird and unfathomable to me.  Lacking in hard ground, and I needed to feel the ground under my feet as the rug had been pulled up from under me too often.  Yet, of course I ALWAYS had feelings, I just did not know how to make them reasonable topics of conversation...ohh shit ... they are not supposed to be rational ... or are they ... 

I tend to be careful about binaries... of course heaps of feelings are rational given the circumstances...

Did you have only one hospitalisation?  Things have changed in some ways from back then... but not necessarily for the good ... glad you are finally giving it attention. 

The 'system' needs 'All the help it can get'.  So if your energy is good to take it on in different ways ... Go for it.

I should have a good read of the relevant MH acts when my head is in the right space.

[Willy]

@Appleblossom 

Hi Apple

It appears that we had very different types of childhoods but still managed to finish up in much the sort of same place. This doesn’t surprise me. In my opinion, there is a plausible explanation why this can happen. The idea that the abused child grows up with mental illness is too simplistic. There does appear to be a significant causal relationship between abused induced trauma and adult mental health problems but it is not a simple relationship. There are other significant factors which need to be taken into account.

Your caution about binaries is, I believe, also warranted. Computers work on a binary system but nature seldom does.

You asked about the number of times I had been hospitalised. The answer is many. I have lost count but I would guess a dozen or more times. The first time was by far the longest and the only time I received any significant “treatment”. The other times varied from 1 day to a maximum of about 2 weeks. The stays have got progressively shorter over time. All but one of these internment's happened before I joined the self help group about 35 years ago.

The one that happened after that occurred about 5 years ago. I was having a particularly bad psychotic experience and phoned a help line for support. That resulted in the police turning up at my house within minutes and an ambulance shortly after. I was not suicidal and never suggested to anyone I was. At the time I was panicking about becoming psychotic which is understandable given the past trauma from just being found in that condition but that is another story for another day. On that occasion I was taken to the local hospital where I stayed overnight and was discharged the following morning. There was no “problems” as such but as far as I was concerned it was a massive and inappropriate over reaction that wasted everyone’s time and public money. All I needed was an understanding person to talk to for half an hour or so but that would be too easy for the cretinous MH system that we now have. As we also know such people are in very short supply within the public MH system.

I have since worked out a much more satisfactory support arrangement which I have since used a few times to help me get through psychotic episodes without having to resort to the inefficient and quite dangerous practice of knocking myself out with prescribed meds.

You mentioned that hospital systems have changed over the last 50 years but not necessarily for the better. They certainly have changed. My last experience was a wake up call as to just how toxic the system has now become.

You have mentioned on a couple of occasions your interest in feelings and the role they play in our cognitive repertoire. I believe this is an area of great importance but one where it is often difficult to find useful information or have a meaningful discussion. Again my first useful insights into this important area came from the previously mentioned support group. I recently summarised this information and posted it in the resource area of my “other little forum”. Here is a copy of the posting.

Feelings Are Not Facts
Here are some bits and pieces about managing feelings from an old group program that I found helpful at the time
1. Feelings can be stirred up as much by imagination as by real causes.
2. The more disturbed we are the less feelings are likely to be related to reality.
3. Actively ignore disturbing feelings. Gradually overcome them by learning how to just let them go. Practice this skill until it becomes automatic.
4. We can compel our muscles and limbs to act rightly in spite of our feelings.
5. Between a feeling and a fact there is always a thought.
6. We aim to keep our thinking true and then go by what we know, not by how we feel.

I have also been doing some interesting research related to this subject in recent weeks. I am waiting for a book that I have ordered to arrive entitled “Psychosis and Spirituality”. The author is a UK clinical psychologist by the name of Isabel Clarke.

Her website is

Isabel Clarke website 

I also watched what for me was an interesting webinar with her. It was run by a guy named Ron Ungar that I did an online course with in CBT-p a while back.

The title of the webinar is rather vague. It was called “Comprehend, Cope, and Connect” . It deals with psychosis, creativity, and mystical experiences. There is also some stuff about the way in which feelings tie into all this

The link to the webinar if you are interested is

Comprehend Cope and Connect Webinar

I have a VMIAC conference to attend on the 6th Sep with the Vic government MH people to review the proposed amendments to the MH act. I will need to go over these proposed amendments before then so that I will be in a position to respond with some semblance of intelligence. Reading this sort of stuff is tedious and about as exciting as watching grass grow.

Oh well!

Regards

Willie

[Appleblossom]

@Willy 

I am glad you managed to deal with your demons and life eventually, with finding a tribe and needing shorter times in hospital. And for the most recent one ... "All I needed was an understanding person to talk to for half an hour or so."  Yep.  Know what that is like.  Finding a person who is understanding ... in this society ... can take a while.

I dont want to complain, as I have had a lovely weekend, found a few friends who are making a difference, then meeting a lady to do duets with this afternoon.  She said we seem a good fit ... so hopeful for some new partnerships ...

YET I am motivated to understand and advocate for change in the current MH system as my son is caught up in it.  So it is real and present for me.

There is a lot of gold in your reply.

So much wanted to repost:

"Feelings Are Not Facts
Here are some bits and pieces about managing feelings from an old group program that I found helpful at the time
1. Feelings can be stirred up as much by imagination as by real causes.
2. The more disturbed we are the less feelings are likely to be related to reality.
3. Actively ignore disturbing feelings. Gradually overcome them by learning how to just let them go. Practice this skill until it becomes automatic.
4. We can compel our muscles and limbs to act rightly in spite of our feelings.
5. Between a feeling and a fact there is always a thought.
6. We aim to keep our thinking true and then go by what we know, not by how we feel."

That is a very useful list.  It accepts and differentiates the roles of imagination, self control, and gaining mastery over disturbing thoughts and disturbing feelings.

"Between a feeling and a fact there is always a thought." is a great insight about how our species ... h. sapiens' does its process. I had a sense that the facts might come before the feeling and thought, but I guess that is chicken and egg stuff. 

I have tended towards the no 6 approach to life myself.  Tried to be more thoughtful than reactive.... long before I knew what the meaning of "reactive" was.

Thank you for the Isobel Clarke link.  She looks great.  I am already aware of Ron Unger, and have tried to bring similar insights to to the forum when I felt it was tending a bit mainstream.

Make the cases you need in the VMIAC sessions.  Interested in how you go.