Lived Experience Forum

[outlander]

@Exoplanet

[Mazarita]

@Appleblossom hahaha to the sydney road rock venues. I like it. 

I didn't know you had been diagnosed. I too was seeking help for my mental health from a young age, first about form three (year 9) in high school, that was just longing to see the school
counsellor, too shy to ask. About 20yo trying to analyse myself by reading William James, Jung and various others in that vein. Age 27 first psychiatrist.

Get that you have in the past been mainly in a carer's position with MH services. Good that you are finally getting some support for yourself with NDIS, along with your other physical/mental health practitioners ongoing.

Incredible that your son was no threat but they handcuffed him. Awful. So great that he is going well at uni.

Thank you for your kindness in apologising, though no need, wouldn't have even thought anything amiss in your treatment or non-treatment of me that bad night. Being on my desktop computer
and distracted helped me that day, was doing it desperately really because of the acute disturbance I was feeling of myself. Even in that state I am not even necessarily seeking help from
friends or fellows at the forum. That night, what helped was just hanging out here and finding a place to write out what I was going through, exhange some words with others around or for them to find next time online. 

We are also sisters just because we joined the forum here within a day of each other and have been traveling together for a long time writing and reading each other in deeply personal ways.
Grateful for our connection, longevity and regular simpatico.

You are very right though about it being an imperfect medium, the internet, writing, reading, words...

[Appleblossom]

Dear @Mazarita 

My diagnoses are still a bit uncertain.  For my DSP It was my neck as primary disbaility and mental health (MDD) as 2nd.  I got into NDIS thru a MH organisation, and was told it was very difficult to get NDIS for a physical disability.  My Co-ordinator of supports was keen to get a "bigger" MH diagnosis for me more in a way of putting me down and not really on board on reaching my general life goals. For my eligibility reassessment I did proiide medical records from 2001 about my cervical disc bulge, and asked for letter from pdoc, who vaguely mentioned 2 MH labels as differential and working diagnoses ... nothing too certain there, but he advocating for me to continue recieving NDIS support.  My GP thought it was enough to secure NDIS, and then last week she deliberately printed off details of our consultation and told me it was a certificate of normal and to show whoever I liked  I love her for that. I showed my MH nurse and physio and we had a laugh. My GP has been helping me put my life story into psychological and medical perspective, rather than pathologising it, as too many things were non standard from a very early age, and too many serious MH labels applied in my family.  I am dissappointed with psychologists on the whole as they did not seem to have the tools or motivation to help me do that, and I thought that was why I spent so much time and money over the last 20 years.  Mostly i HAVE GOTTEN INSIGHT THROUGH MY OWN RESEARCH. So cranky about giving lots of time to psycholoigists who generally came up with 1 or 2 ideas per 2 years of therapy. The labels, pdoc came up with BiPolar Mixed state or schizoaffective disorder. 

I told my Co-ordinator of Supports that I had been called so many things a few extra was not going to hurt me.  The problem with her is that she is young from supportive family and has no idea the challenges I have faced, and was a little bit reverse racist.  I got excited as she had some Dutch heritage, but she hated her Dutch side, seeing it thru the colonial lense as she was also Sri Lankan. In our last conversation last week, she finally got some idea of what my dutch family suffered in WWII so I am melting away her prejudice.  Mind you I am the first to agree that colonialism could be a very shocking thing .... eg Scramble for Africa ... but my family was not doing that, they were getting the shit bombed out of them left right and centre.  Recently been online, researching at their location and the dropping of bombs. 

It is interesting as a few years ago a friend said that as I spoke I let off bombs ... so I am now getting some understanding he meant "social taboo bombs" and putting it all in perspective.  Hopefully I can then put it all aside and get a last crack at a decent life in my sunset years.  Also set the record straight for my children.

Go gently with yourself Mazzie and Exo @Exoplanet 

Apple

[Mazarita]

Hi @Appleblossom 

Yeah, mental health labels. I am too identified with mine but it's partly because I'm too broken for work and actually dependent on meeting all the criterion for my very livelihood, being the disabled person.

The DSP was just about the best thing that ever happened to me, brought me out of being in dire poverty most of my life, but that disability mentality has permeated my thinking, as you say, the pathologising by others and myself. It's one of the reasons I was ambivalent about NDIS.

But now that I have been approved I know it will improve my life a lot, especially if it is as effective as my past experience of 2 years with a support worker. Seeing @eth's recovery after getting so much more support through NDIS, inspires hope in me for a life more engaged with the outside world, healthier in body and other ways.

Here's to better quality of life in our sunset years!

That's my mum, who earlier in her life suffered trauma and poverty in her marriage and other big bad experiences. 86 this year, supported to live independently in her lovely flat, connected to community through church and extended family, a good long term GP and specialist health care, a fantastic neighbour. She says a lot that her latter years have been the best of her life.

The other thing I remember from early conversations with you, Apple, is the phrase 'gently, bentley' that you used to say a bit. It's a good one. 

[Appleblossom]

Glad your mum is doing well @Mazarita DV and poverty are tough, for mums and kids. Being on DSP helped relieve financial anxiety for me too, though I still tried and did a lot of productive things.  I never really wanted to be welfare dependent, but the reality of my life has repeatedly put me in that position regardless of my personal efforts in work and study. Working in the govt I benefited from a lot of camrarderie, promotion and good pay, which gave me personal confidence.  The girl who took me to Bombay Rock worked for Social Security.  It was just the way things were. I was in so much physical pain when I separated from my marriage, I needed the Supporting Parent Pension, but probably could have gotten the DSP then anyway, however as my kids were still young, they were my main concern.  I called Centrelink, and could not keep the agony out of my voice, and the worker called me back in a week to check on me, he was concerned.  SO I have to acknowledge the positive role of our welfare state in my life. It never limited me in that my inclination to strive was heavily driven and programmed into me. I also had church and state experiences in orphanages.  My father was supposed to get the Invalid Pension, but he died before he got it, being treated as a malingerer by a doctor in front of my eyes when I was 11.  Now I see I do have some entitlement. I tried to manage on my own in many circumstances, until I now realise were ridiculously extreme circumstances. I have not been paid compensation for anything. I have looked at actuary tables to get an idea.  I generalise things a lot more, and see it as a basic universal income, and me being fortunate I do not live in countries less resourced.  I helped my husband greatly by having such a work ethic and being happy with low level of provision.  First clothes bought in marriage were 2 nursing bras, most stuff from opshop.  The first time he gave me money to buy new clothes at a boxing day sale, he was so horrible when I returned to show him. that I was deeply hurt. I felt so ashamed of how I looked, and how he priveleged his first born, that I felt I and my biological children were 2nd class.  Both my children have spoken about my clothing and understood I put them first.

Yes @eth has flourished with NDIS, but it was also a huge battle for her to get it.  Her thread about NDIS helped me while my son was on it, but throwing it away.  He has a tiny plan at the moment, and definitely does not want to see himself through a disabled lens.  It is so tricky.  His way of thinking allows him to strive and achieve, and I totally agree its for a best outcome, but when things go haywire, they really do.  We all have to face our limitations.

Lol ... the "gently bently" I learned from a sitter when girls were tiny.  It was a silly phrase, good with kids that helped me too.

[Mazarita]

Sending love and hugs to you, @Exoplanet. 

[Exoplanet]

It's beautiful Mazy @Mazarita  

[Mazarita]

Good morning, @Exoplanet. The tree is from a walk in one of the wetlands around here. Beautiful country this part of the world. I love looking at old trees, trees in general of all kinds. The big tall ones I know must have some age to them. I sometimes think about the eons trees can live. I find it reassuring and inspiring of patience and stillness.

Up at 6am this morning to get unit ready for maintenance this morning. I have a feeling the maintenance guy is either the landlord himself or a family member, so feel the place needs to look okay. My bathroom was filthy. Showered myself too to top it off. For some reason in this new place I find myself showering more than I have for more than a decade, an odd and enduring struggle in my life to do this basic thing. It's probably twice a week at this point, which I find reasonable. Previously it was once a week at the most, often much longer. I do like the feeling of freshness, and seems to at least get me ready for more time out in the public city world when I can get myself out the door. 

Please feel no pressure to answer this post, just when you feel like it. I know we are connected in our hearts and don't need words to feel that. I also have a feeling you may be struggling with the aftermath of the physical challenges of camping, and/or health issues in general.

Lots of love 

Mazzy 

[Exoplanet]

Gidday Mazy @Mazarita  , Walkin' in wetlands sounds absolutely wonderful! Though the reds & golds around here can be full of wonder too 😉 I'd love to see the giant forests of Tasmania.
My sleep was a bit broken, the humidity is high {nearly 70% according to the weather
site} & my body ached a bit. My mounth's fine now, though I'm still using salt water &
being a good girl with the dental hygiene 🙂 Just good ol' fashioned arthritus I think. I
have been mowing the past couple of afternoons, only got 1 corner to go 🙂 One of the
benefits of mowing is the first thing I do when I finish is come in, strip off & douse myself
with cold water . . . then rub a bit of soap around whilst I'm at it! But I have been neglecting
the puppies a bit in that area, so that's my mission today; 'cause once I've finished mowing
the yard I want to mow me & the little fella - we're getting way too hairy! 😄 The Staffy,
like me, doesn't have very good skin & I have noticed his fur is getting pretty thin on his
rump - but I think part of my slackness with him is that he's still going to the dam every
afternoon, but the dam has become more of a mud-pit than a puddle & part of me doesn't
see the sense in washing him.
If I felt any pressure to respond I wouldn't be able to, this little blurb is because I wanted
to communicate with you. I do feel a connection with you & I am very grateful for it ❤️
I think your right, I am still struggling a little but it's more the physical process of thought
& emotion . . . I still feel tired but it's a contented feeling 🙂
I hope the public city world is good to you & gives you something to smile about 🙂
Lots of love to you Mazy 

[outlander]

 @Exoplanet @Mazarita @eth @Appleblossom @Shaz51