Lived Experience Forum

[deshift]

I don't want to talk about recovery, but I should. I'm doing better than I was before, that's the literal definition of recovery. But, as I like to tell some very clinical minded people, it's not just about feeling better or doing better, or being better. Better is crap. When all you focus on is being better, you hate yourself every time you end up worse. Being better is a side effect of loving yourself, and looking after yourself. And that's not just about being okay, I'm always okay. I'll be okay until I'm not okay, and when I'm not okay, I will have no f'ing clue what okay or better or "me"  even is. Am I in recovery if I get unwell again? Am I recovered if I have a massive setback and make the trauma even more complicated? Is it plausible to think, hope, and aim to not let it get any worse than it has been in the past? I'm constantly in a state of recovery. My mere existence is recovering from the last moment, every moment, and my goal is to forget about how I just felt, and to feel the next moment instead. What moron in a suit sits in a fluorescent board room, and concocts these terms? How do you evaluate the effectiveness of the funding, if the "participant" consistently fails to recover? Why am I punished for having an illness that I didn't ask for? Why do I have to suffer in poverty? I didn't choose to lack any ability to concentrate on stressful tasks, or basic interpersonal relationships. I'm asked to recover, to aquiesce to mainstream ideology, and those that I've inflicted with bizarre dialogue are accepted completely for ending ties with the psychosocially sick. Where is their responsibility to recover the foundations of respect that they initially had? What a joke it is, for the muggles to expect me to recover, and sit in their f'ing towers gatekeeping anything that resembles even the remotest notion of exceptional phenomena.

😒
deshift

[deshift]

I spoke to my dad today. He is such a &^%#. He didn't even ask how I was. He never does, he never did. He just waffled about his hobbies. And then tried to fix my dishwasher issue. Like, it's been fine for 12 years, now it has an error message and pissed water all over the floor. "Oh, it's the flap at the front. Just poke it with a twiddle stick." My goodness. F'ing poke him in a minute.

I don't know why I rang him. Call it a moment of weakness. I told him the news about being accepted into a gallery exhibit in late January, and he just kept talking like he didn't even hear what I had said. What a monumental &%$#. It's un-f'ing-believable.

deep breaths

I've basically come to expect this from him, and worse from mum. If I ask you how things are with your parents in another thread, know that I am completely biased. My parents are just straight up abusive. No doubt.

Imagine what that does to your development? I can't get my head around the organic mechanics of it. And I'm supposedly highly intelligent and have great insight. My rage for them, knows no bounds.

😡
deshift

[deshift]

Well, I just spent the better part of Saturday afternoon and through into Saturday night, here on the Skylight forum. It is a safe place. The content is not catered for me by an AI. It appears to be appropriately moderated. There are wonderful people here. So thank you everyone for making me feel welcome. I am grateful.

Saturday afternoon is when the long dark starts for me, before midday Monday when my next support arrives. I call it Solo Sundays, but really it's nearly all weekend. And I just sit at my workstation and hope that I don't get up to snack or start pacing the living area. More often than not lately, I have visited the UMHCC. They are happy to have me, and I'm happy to go, but also I wish it wasn't necessary. I already get the most funding I'm probably going to get from the NDIS, and it's not really enough. My situation is extremely complex.

People often ask me, "What does your psychologist get you to work on?" and I attempt to explain that the work we carry out there now every 2nd week, is cutting edge psychotherapy. We basically make it up as we go along, since there isn't really any research for my stack, and I'm well versed in psychological theory myself. When I present at the closed acute ward, they always have to roster an outside special nurse, just to keep their eye on me. It costs the hospital a fortune, and the longer I stay there, the more likely I am to become increasingly unwell. It's a precarious predicament. 

I nearly died last year driving my vintage 1999 sedan on the highway at 4:50am after spending the previous 2 nights lost driving around the Hay Plains, with about 5 minutes of sleep in the preceding week. In 2018 I unofficially broke the Guiness World Record for the longest continual drama performance, and live-streaming for 134 hours straight. But by far, the longest I went without sleeping was 5 1/2 weeks, the latter 30 of 40 days in a locked ward, the only highlights were beatboxing Darth Vader's Theme - Trip Hop Remix, and being thrown in isolation for playing with a bouncy ball at 2 am in my room, and subsequently winning an impromptu game of handball with the night staff who seemed more interested in getting the ball off me, than keeping score. Resist at your peril. I still didn't sleep, but I did do a lot of core strengthening exercises in there. They were all terrified of me, I've never been violent ever, I'm just highly trained. And I previously had an elite level of fitness. My heart rate after intense activity was up around the 215bpm, which for most people would be catastrophic. My eyesight is so good I can see as far as the visibility allows. I can tune a guitar better than those electronic devices if the bridge is set up correctly. Before I became unwell, I could lower my heart rate on command to about 48bpm while resting. Before all the chemical restraints and isolation cells, my IQ was so high the OT said scores like mine didn't make any sense. 

And I will never work another day in my life again, nor complete a unit of study. I don't even like going outside unless I'm with a support worker.

I have these two great ideas, one of them is called Program C.I.E.E. and the other is a 24/7 dedicated NDIS activity drop in centre. And I do not have the capacity to see them through. *shakes head*

🙃
deshift

[deshift]

Since I've been on the NDIS, my life has been immeasurably different.  I don't even know how I survived all those years before without it.  It's just mostly about my support workers. And if you think they are not all that good, then you haven't discarded the bad ones enough. It gave me a space to breathe again. It motivated me to do all the little things everyday that I never could accomplish before on my own.

I'm grateful everyday for support, and I always say why that particular day, and in 18 months I haven't repeated myself when it comes to exactly what I'm grateful for. Lately it's been about feeling safe and at ease. Sometimes it's about feeling understood. Sometimes it's about a shared common experience, or cultural identity. Somedays it's being an outsider, and being allowed to entertain notions of philosophy and metaphysics that are fringe at best. Sometimes, it's just the body double to go outside the house, and sometimes it's the sounding wall for a new poem.

It's catered to me, and I have curated my experience based on my values of empathy, intellectual honesty, creativity, spirituality and cooperation. I'm lucky to have them, and sometimes they let slip that they feel lucky to get the opportunity to support me too. What a refreshing happenstance it must be to enjoy your paid profession, and feel valued and loved (in a purely plutonic and communal way). I definitely feel the love that they bring to their workplace. But the majority of the love experienced, is the one that I have grown for myself.

There are some mornings, I would walk to the wetlands, and there would be no-one else around before first light, and I would be talking to myself, and I'd exclaim out loud that the only reason I believed the things I did, was because I f'ing hated myself. And then I'd cry. You have to have lots of things before you have self love. You have to have self-respect, and any respect comes with honest insight and true reflection, so these sorts of conversations you hold with yourself are paramount to get to know yourself. You have to lack any doubt to love yourself, and being confident isn't something you just switch on. It's built over time, reinforced, resurfaced, filtered, vented, decorated and clad with inner beauty. You have to be free from fear and anger, and that requires adopting a strategy to relinquish painful trauma. I don't particularly like the language used in most of the examples out there, and I have coined the method of drinking it.

I look at the menu, to see which feelings I don't like. I sniff out the suffering sensation in my body and give it a fancy name. Then I just drink it. I swim in it if it's more than a bucketful. Then I ruminate it, bring it up, and contemplate from where it's fundamental cause stemmed, letting my internal filtration organs deal with the toxic nature of the spiritual poison, and lastly I urinate that drink out like the wasteful energy it is, relaxing and breathing the new cleansed wholesome warmth and groundedness that comes from healthy lifestyle habits.

When you love yourself, you admire, are inspired by, care for, enjoy the company of, miss time spent with, congratulate, motivate, cooperate and communicate yourself.


When you love yourself, you aren't embarrassed to show love to someone you feel safe with. You have surety that it won't be rejected, or shamed, and they usually just say "thanks". That's one thing my sister has taught me, when you are stuck for ideas in a conversation, find the thank you. She has also surrounded herself with good people, with their good suggestions, and good energy, and really good boundaries.

So if you've read this far, thanks. You're a lovely person. You have my gratitude and your choice of blessing.

🤗
deshift

[RiverSeal]

Hey @deshift 

Thank you for posting on the Forums!

Sounds like you are having a tough time with your parents and I'm sorry you are experiencing that. We often don't get what we expect and need from our loved ones and that can be really hard to sit with at times. Do you have other ways of getting support from people or have you reached out to Counselling services? SANE has the Support Line where you can chat to a Counsellor about what is going on for you. It can be really beneficial to speak with someone so I encourage you to reach out or you might already do that too.

Thanks for being part of our community here on the Forums!

Take care

RiverSeal

[Hotaru]

My core values are Authenticity, Integrity & Transparency.

Thankyou for being warm & welcoming,

keeping it real

& being courageous in sharing your journey🙏

[deshift]

Aww @Hotaru  Thanks!

I hope it inspires you to share when you are ready. You are most welcome, you have been warm in your greetings also. I'm about as authentic as they come, and though I'm selective, I am transparent when the right conditions for safety are met.

I hope you enjoy yourself on the journey to find your tribe!

😉
deshift

[deshift]

(edited and tagged @Jynx since they are around) I thought that if I could just make it through the weekend and solo Sunday in one piece that my week would ease up, and I could start to enjoy activities again. But I can't concentrate for shit right now, except to post here.

I'm just so angry. I feel this tightness in my throat like I'm not being heard, like I'm not listening to myself. It's not entirely untrue, but it is fairly true. My support team is hearing me, and I listen to my own words as a practice, I have done since forever, but I'm not hearing something? Or I need to talk about something? I talk all the f'ng time! OMG I'm so angry.

Quick warning mods/peers, please pretty please, don't hit me with the active listening today in response to this post if you are going to respond. I hate that clinical crap, it triggers me, and it's complete BS in my opinion. It's cold, and chat GPT could even respond better.

I'm so angry I can't think straight, and I hate being angry. I'm never usually angry at all, I'm usually very calm, and if I'm angry its usually at myself, but this time I think I'm angry at how other people behaved, and it's piling up. So much that things that would normally slide off my armour, are sticking and dinking it a bit, and that is p'ing me off even more.

I thought this post might help but it's making it worse.

😫
deshift

[deshift]

This forum is broken. That or nobody gives a shit. I have some feedback. But it's not going to support me in the current space.

If nobody can support me here, I need to forget about this and just go to the UMHCC where I know I will actually be supported.

[Jynx]

Hey @deshift sorry to hear that you're feeling this so intensely, sounds like it's really weighing on you. Anger is a pretty big emotion, and it is often also a secondary emotion - usually a response to a deeper hurt, sadness, or at times a sense of shame. I'm hearing that you're angry at others for their behaviour, so perhaps it's because their behaviours are hurting you? I sometimes also experience anger as a response to injustice - i.e. being treated unfairly or seeing others treated unfairly. 

Do you have ways you normally would express your anger? It's such a fiery emotion, one that tends to bubble to boiling if we don't find ways to release it. I like to get harmlessly destructive - i.e. shredding paper, punching or screaming into a pillow, stuff like that. Exercise also helps. If expressing it here hasn't been helpful, could be worth finding another strategy. I'm glad you've shared with us though so we know where you're at. 

Also, re: active listening/clinical sounding stuff, it might help us to know a bit about what you mean, or if you had some examples? We wanna be able to support you as best we can and so knowing the sort of stuff that isn't helpful, or that makes you feel worse is super helpful for us.