Lived Experience Forum

[Queenie]

I am really struggling today due to my mental so-called 'ill health'. I hear derogatory voices still willing me to take the path of self destruction. It is really winding me down and I feel so exhausted because of it. I went to the GP today to see why on my latest discharge summary from the hospital, they didn't mention schizoaffective at all, just depression as my reason for admission. My GP said it must have been an error as I am definitely schizoaffective. I'm also thinking I am seeing things again as I see things that don't seem to interact with the evironment around it. Usually this means it is a hallucination. I feel embarrassed reality checking with others all the time (even though right now I have to I guess, even though I seem like an idiot). I am aware of an electric shock feeling through my body and don't know what it is from. I am confused!

[Former-Member]

Hi @Queenie.

I have no understanding or lived experience with the issues that youre describing but I wanted to say that I can understand how confusing that might feel and that I'm sorry you're struggling. I hope things get a little less confusing for you soon.

[Lunar]

Hello @Queenie,

That sounds incredibly confusing and concerning, I am glad you went and saw your GP about it. How frustrating they made a mistake not putting Schizoeffective on discharge summary, are you linked in with a Psychiatrist/Psychologist so you can talk through these concerns? What other things do you like to do to help you feel more calm ?

Lunar

[Queenie]

My GP was at a loss @Lunar as she had the same discharge summary as me. The electric shock feelings put down to withdrawal from one of my antipsychotics as I was on a large dose whilst in hospital. To feel more calm I like to read. Unfortunately my medication side effects don't always allow me to be able to read due to blurry vision. I've seen my psychologist already but she had no answers. I see my psychiatrist in a week.

[Former-Member]

@Queenie, that sounds horrible, and I'd agree that your change in medication might be responsible. I think its important to let your Mental Health Team / Case manager know about it or rock up to emergency for 'review' because maybe they discharged you too soon, and you can question the discharge summary while your there.

I'm sorry you have had to endure this level of highly paid medical incompetence when your so vulnerable - do you have a a 'nominated support person' who can stand with you to help you address these concerning issues with MH?

Also, i just want to commend you for your endurance and for your humility in clarifying with others around you if their perceptions line up with yours. I know how exhausting it is just bring self aware and separate my own mere 'blackdog' thoughts, let alone these invasive auditory poundings you suffer. I really wish i could take it away for you abd pray you continue to have the courage and strength needed each day to ride the storms without too much impact and find better times ahead. Big hugz xox

[Queenie]

I'm in the private system @Former-Member, so I don't get access unfortunately to a case manager. My MH team consists of my GP, psychologist and psychiatrist. I'm reluctant to go public again through emergency as last time I was stripped of all my medication as an 'experiment'. This caused major psychosis and the psych ward staff stating I was on illegal drugs (when I have been clean for a decade). Hearing voices again tonight and I've told my gf (she is my carer and advocate). The bad thing about that is she is not permitted by my psychiatrist to sit in in sessions or be kept in the loop (except through me) by my psychiatrist. It is so confusing! I'm reading a book (when I can read without blurry vision) about recovery from psychosis and the story I can really resonate with. 

[Former-Member]

Pitty the private system don't have the foresight to appoint MH Case Managers, drr. And I can understand how rediculously polarised private & public health can be. Perhaps your Dr will allow you to record sessions with your mobile phone? Would you be less open if you recorded it to take home to your gf/carer? I don't hesitate to secretly record sessions when I'm alone (smartphone). Who do they think they are??? This is about what's best for you and if your closest person in the world can't come in on it, honestly! You know, being 'private' you could find someone else, someone who works both public and private patients, knows the systems better and isn't just in it for the money. Sorry, but that's how it seems to me. Hope I'm wrong.  Better go before I really get riled up, grr. One day at a time Queenie xox

[Former-Member]

Oh Queenie, glad you're into self help books. And when you can't read properly, remember there's audible books at the library, or large print. Feel for you xox

[Queenie]

Thank you @Former-Member for the tip. I hadn't thought of those to be honest! I was going to invest in a kindle because most of the books I want to read are available on Amazon and I am pretty sure you can change the text size on e-book readers. Will be sure to check out those sections next time I'm at the local library.

[Appleblossom]

Sometimes I read large print books ... such a relief for the eyes ... and audio books might have an effect in disempowering nasty inner voices.

That one way the music helps .. me as at odd times of day .. words bubble up in me from songs ... it feels more natural than doing affirmations ... cos .. there are aspects of it that are not just about MH ... but a performance or a story ..