Lived Experience Forum

[EternalFlower]

Hi @maddison 

Thank you ❤️

Sorry you are going through a hard day and things are feeling funny . I appreciate what you're saying so much . I don't know when things got hard today, I felt lucky that the hospital didn't go badly. They answered and the woman was kind and wise.

My court stuff hasn't gone as I wanted. I don't have enough money to properly deal with it and it's just shown me what a bad system it is.

Which word is the word we can use , and I want also you to use if things are a little crazy. I'm sorry if that word is offensive...crazy in a way that we just need to breathe it out and know the universe is good...

I am proud that I have a fridge full of food which sometimes I don't during hard times. 

I saw a woman today with a piercing in her nose and thought of you. I don't notice them much sometimes and probably wouldnt have noticed had you not brought up piercings !

Are you doing okay ATM? Feeling the weekend go into the week? Is it good to move forward now🌼 and have weekend over ? I felt bit better last few hours but continue to wish my therapist was here.

He told me something about therapy sort of ending when U start not needing to ask his advice and U can imagine it, but I got angry at this and found it cultish. I don't like the idea of therapist as authority figure. But I do like the idea that there is a bond that even if therapist is away, you are supported, because they still are with you mentally and as a little guide in your pocket !

I have not heard of this song ....Billie Martin....thank you for sharing 

[EternalFlower]

Please don't mind me @maddison I blanked out on what I had said. Thank you for letting me share the pit.

[maddison]

Hello @EternalFlower I'm feeling a little more talkitive now. Wow, do I have depression rn. I didn't realise so much - I thought I was quiet, but now I can really feel it.

I'm telling you this because, your 2nd message about blanking out - actually made me laugh! Thanks. I'm not laughing at you - it sounded cute, or i could definately relate to mysterious inferences. Sorry, I hate that type of communication. The only reason I made it sound mysterious was incase you wanted your privacy respected. It's out in the open now. I AM PIT!!! (You don't need to reply, you can if you want, I'm not fully desperate) Occasionally, when I go for walks, there will be this random flower, right in my line of sight - I think 'huh, i have a friend called eternalflower'. We can't help it, can we? Even though, none of us know each other on here, phrases that we have shared, or discussions, all sorts of things, somehow permeate it's way into this 'real' everyday physical life.

It feels kind of crazy/ludicrous when it happens. Things have a way of melding & mixing. It's all new to me, as I never had many chats online. The younger generations must see the world so totally different than me.

I really don't understand this online communication at all! It has given me so much - & at the same time, it makes me sad that I can't see any of you. It's not that I don't feel close - & I deeply appreciate the communication - I need to talk to people face to face. It's very difficult for me. It gives me a sense of longing. I'm not sure if that is healthy?

I like hugs!

Perhaps my mind has not learnt how to compartmentalize online connections? Or do I want it too?

Anyway, please don't read anything into my words - I'm thinking out loud.

I can tell you, that writing to you somehow lifts me..... Is it because I'm trauma dumping on you? Oh no - sorry if I am. I probably am. Let's not worry about it. I think we should unashamedly trauma dump as much as we need. 

We can call the crisis numbers & talk etc, it's not always that type of crisis tho... And they have formulas on how to guide the conversation. Can't I just express? There is really no phone number for that. I invite & welcome you to do the same if you need. Why can't I just say yep, feel like I'm dying - don't care that tomorrow is another day, I've tried about a billion already & not a single one was without fear & pain looming in my subconscious.

Good, beautiful, funny moments happen. 

It's not enough. It's inconsistent. I'm sick of apologising, when I'm actually really sad. And then if I think of other peoples sadness - all I want to do is take it away from them. I know how it feels & no one ever deserves to feel a glimpse. If I could take all the pain of the world, I would. Give up my life & let others live free & happy. It doesn't matter any difference though. People have to feel pain...& I'm really really pissed off about it.

Love to You xx

[EternalFlower]

Hey @maddison sorry to leave you hanging ...I have had the worst trauma week of my life. Pit in a big way.

That is nice that you thought of me as you saw the flowers and that you associate me with that name, which I've grown to like a lot. I have used other sites previously and chose a random name that I later regretted.

I remember seeing a post somewhere totally reframing the trauma dump idea, that it's honesty the best thing and sometimes people are curious and like to know about others trauma. So I agree, it isn't a bad thing to share !

I just painted my nails the colour I was edited about , it's called "Barefoot in Barcelona". It's stunning !

This week I so wanted to connect to a peer support worker, I considered presenting at the ED because sometimes they connect you to a peer worker. But I'm glad I talked myself out of it because it's a risk. I could get out down or minimised and it is possible no peer workers were available or offered or it wasn't even true about access to peer workers in the ED (just a rumour I'd heard - and once net someone who did thst role, but it could only be sometimes and in some EDs). 

I called through the psychiatric support number and that was relatively helpful 

Im sorry to read this moment has been hard and U feel depressed atm and are identifying that feeling. You have a lot of light and nature and art alongside the hard times and i know sometimes that doesn't help or make it better. How do you feel today re depression? 

I am having these thoughts of regret over my journey in the health care system and wanting different supports or to be different. I think I always feel less than and clingy, a trauma response is that I fight and persist through dark moments but I feel deep down it's because I know the Catt teams and community teams won't really do anything.

I see a peer worker in the MH system about once a month and today she called me offered to change our session to 2 hours earlier and with this she would offer me extra time if I accepted her offer of an early session.

I just felt in my gut that it wasn't really to help me. She kept calling and leaving messages and explained that she's been called to do a meeting at my usual time so that's why she wants to meet earlier. And it was never really about me or offering me more time and honestly I actually really don't like my times being messed with a day before.

I feel so used at times and like it's always on their terms.

[tyme]

Hey @EternalFlower ,

Thank you for sharing what has been happening for you. 

Have you heard of our guided service? You can choose to connect with a peer worker for all your sessions if you want. 

Here is the link if you are interested. You can check if you are eligible (if you haven't already). https://www.sane.org/referral

All the best. Happy to answer any questions if you have any.

Kindest, tyme

[maddison]

I heard the code word @EternalFlower I'm here.

Oh, I can understand how you would feel out of sorts with treatment of peer worker. 

What can I say to you? You don't deserve to be treated unfairly. You know this. Your reaction is totally valid.

I love the peer support workers here - so I am not writing this with any disrespect.

I think maybe what happens, from the small experience I've observed in the real world - is that the peer workers are everyday people who are in a stable place of recovery. (From lived experience) 

I don't know what that feels like, because, like you (maybe), I am in the depths of disease. There is a disconnect, perhaps?

My real life experience, I have observed PSW who appear very out of touch with client needs. This could come from a place of insecurity...& maybe an overly positive attitude, because now they are in a place where they feel, that their life finally has structure & meaning.

Being in the workforce, with all the nonsense politics that go on. I wouldn't be surprised if PSW are not entirely valued as they should be.

I really don't know what I'm talking about. This is what I'm guessing.

I think what I'm trying to say - is that - I don't think this was personal. I think it was a system flaw. 

Does it make any difference to your feelings. Of course not. You are the one who should be prioritised. Otherwise, what is the point?

This is unfair to have happened to you. I'm sorry you feel used. Very legitimate response from here.

I think, the ONLY real solution - & I'm not good at this - is to take action. You know you are worth more than being fluffed around by workers that don't prioritise your real needs.

As @tyme suggested.... When you feel ready, try alternative peer worker. If you want to see more than once a month, you have the right to request...& Keep asking.

It's not my best work!💓 I don't know if people say 'fluffed' anymore?

I'm here because of pit. That's the main thing. I will send a better reply soon. 

[EternalFlower]

Hi @maddison if it's ok I'll just ramble but I think ur response is so true. You are speaking about limits of system without putting anyone down.

I love psw and have met really good ones. But this one is not really what I need. They do not have lived experience or mh challenge. They have not accessed case management or been in the MH system. They are more a carer psw.

This has annoyed me no end. Theu have experience as a carer and have done carer stuff with me. Lately it's shopping and washing .

And my fawn response has been "well it's better than nothing."

I am shocked and disappointed that despite my growth I am such an easily manipulated person. I dont ask a lot of questions and try and understand. I keep the status quo.

It is hard to access PSW and sometimes it they are in a system that is disgusting they have to be political to maintain their job. You're right it is all politics. The system misses a lot.

I have been pit and it is hard to talk about. I am confused and bit scared. I want to cancel all appointements because I am sick of being fluffed around. I think it just showed me with psw rhat it's never about what suits me. I don't want to go shopping or do laundry with psw. 

But I don't want to offend her.

And yet what is happening hasn't benefited me and I don't feel supported.

Deep down they see I am too weak to argue.

I have met really good peer support workers and also through VMIAC.

I am going to try call them.

I feel better writing to such a supportive person who you are. Xo thank u

[EternalFlower]

Hello @maddison @

How are you? Did you get stuff sorted this week with cm?

I hope U are feeling supported

Today peer worker came and without even asking where I wanted to go, drove me to the supermarket. This a new thing that they've decided I need help with shopping. She seemed to be very complaint with her boss who has instructed her to take me shopping.

No voice. No opinion. No preference. Shopping doesn't help me. I want peer support.

I am thinking when I next see my psychiatrist bring someone with me.

A support worker. I think it could help me not let him walk over me 

I feel so walked all over and am aware of this glaring vulnerability that I have, where I'd rather go with the flow than say someone is hurting me. So support workers manipulate me too. It is very hard for me to get my needs met.

[maddison]

I'm really happy you just decided to lay out @EternalFlower I prefer chatting honestly. We don't need to be bouquets and butterflies all the time. Sometimes all we need is to say it how it is. Feelings that are written out are so much better than feelings pushed further down inside to make us sicker.

You didn't leave me hanging..a few posts ago..I was a tiny bit concerned about you. I knew I had vented, & was feeling mindful that you have your own worries. I was worrying that I had added to your troubles. I was planning on checking in on you the day you replied! 

I like that you rambled, in this post.

There are members & replies when thought and consideration are needed - I really like that we can freeflow even needed. I don't know about you, but I feel such a release.

I have woken up now, from a nap for the last hour. I am 'pit' in the sense that I am completely exhausted. I have looming depression, it is not the worst. 

The last few weeks for me have been asking more of me than usual. Emotional, physically, spiritually drained.

I wrote in another thread, couple of nights ago, contemplations of suicide. It was a hard night for me - depth of my thoughts hit my core.

I was going to tell you my good news, yesterday I saw my psychologist for the first time. (Another post, I will give more info) anyway, I was relieved to express my suicidal thoughts. His response was calming. He told me, that is not surprising. With everything I'm going through, it is natural, not surprising this is my reaction. He also gave me permission - that I am allowed to think like that. It took me back. He had lots of kindness, honesty, compassion in his eyes when he said that.

I'm happy you liked my response, last night - you summed it up perfectly. I used too many words! It happens, when I'm not thinking clearly. It comes out as I type..I guess gathering thoughts as I go..I.E rambling, & with direction.

Going to post this & start part 2🙂

[maddison]

I think that's a fantastic idea to try VMIAC @EternalFlower I had to Google. Yes, I think there might be more services than, at least, I was aware of... For sure.

My case manager suggested an organisation - I can t list it because upon google - I see it's only in my suburb. Anyway they offer PSW. - I'm not linked in with mental health. My case worker is from a charity organisation.

I think there must be other access to PSW in your area, that are perhaps independent of Mental Health Clinic.

Call VMIAC. If they cannot help. Perhaps ask for suggestions from them. Or you could try you local charity, Salvos etc. They might have info on hidden access to other supports & PSW's.

Yes, I can relate to your 'better than nothing' acceptance. Ooh, is very depressing & disturbing. When I really think about the hell I've endured - it makes sense, I would be ok with accepting less than I need.

And I know deep down, it is untrue...better than nothing is saying, "I accept that life can walk all over me, & I'm happy for the half eaten hot dog, down here in the gutter!"

Better than nothing, says - yes, your are allowed to victimise me. You have permission to met make me feel uncomfortable. etc..etc.. It's saying, I've given up, because asking for more, hurts too badly.

I am shocked and disappointed that despite my growth I am such an easily manipulated person. I dont ask a lot of questions and try and understand. I keep the status quo.

Yes, there is a time for this. Low profile can be an asset. We are ninjas 🥷🤫

I don't think you are easily manipulated. Clearly you have awareness. You have lost courage ( transient) & listening to the negative voices. They are total ass hats. When did they get so freaking dominant & loud?

Sudden hypothesis: are they at their loudest when we are on the brink of making positive change? Like, a demon, pissed off that we are winning, so they get louder & angrier to try & prove they are right? Keep us shackled?

A new trick I have learned, that helps me detach from the expectations of maintaining status quo, is to take a pen & book with me... Everywhere. (I don't stand up for myself anywhere near, that I need to)

I can disengage & draw pictures, or write random words. Keep a log of what ppl are telling me. It works like a fence.

If I don't have the courage, or am confused about being assertive in the moment. I have a tangible reference point that I can look at through different eyes, later on. I find, it gives me a sense of personal empowerment. I'm not only a spectator in my life - I'm a record keeper. It helps to stop my feelings of impotence. I have access to what no one else does. My own unique experience. Only I can write, draw from this unique human, laying in bed, writing you this message!

I'm sharing as a suggestion. 

There is only one eternalflower in the history of the existence of the universe.

You matter. Your thoughts MATTER. Your emotions, uniqueness, ups & downs, fears & strengths, your own unique words - here on SANE. You are the most important creature to ever walk the earth.... Because you are the only one of you, there will ever be!!!

💓xx💜xx💓