Lived Experience Forum

[lavenderhaze]

Hi @Minerva 🙂

Welcome to the forums! It takes a lot of courage to reach out, and I'm glad you've taken this step. You've been through so much, and it's clear that you're facing many challenges with incredible strength and resilience.

Navigating mental health issues, physical illnesses, and the accompanying social and financial strains can feel so overwhelming. It's also disheartening when medical professionals don't fully understand or validate your experiences, especially when dealing with a complex medical history.

I'm glad to hear that you and your husband are supporting each other through these difficulties. It sounds like you're both committed to each other's well-being, which is a beautiful thing.

Taking steps to seek support for yourselves individually, as well as for your relationship, is a positive move. What kind of professional supports do you have in place as of now?

Also in terms of self-care, have you found any strategies or activities that help you cope during difficult times? Whether it's mindfulness practices, creative outlets, gentle movement, or simply reaching out to others for support?

You mentioned feeling stuck in a certain mindset. Can you tell me more about what that mindset entails and what you think might help you shift it? 

I hope you find the understanding and connection you're seeking here. This community is filled with compassionate members who are here to listen, support, and uplift one another. You're not alone on this journey, and I'm glad you've reached out for support.

[lavenderhaze]

Hi @Juliet2 🙂 Welcome to forums.

I am sorry to hear that you've been struggling. 

I hope you can find a community here that you can reach out to when you need support.

[Minerva]

Thank you for the warm welcome @lavenderhaze 

At the moment I am gratefully able to access a G.P. I trust and have a longstanding relationship with as well as a Sleep Specialist who actively advocates for the appropriate treatment of Type 1 narcolepsy.

I have access to a Psychiatrist and Specialist Cardiologist, however there are barriers to accessing these.

A very significant incident which occurred with the treating team as an inpatient , followed by my psychiatrist apparrant lack of support for my experience has left me with significant challenges in reconnecting with my psychiatrist. Although there is a plan in place, due to the advocacy of my GP and Sleep Specialist, I am needing to overcome the challenge of following the plan. I am grateful for the help of my GP and Sleep Specialist however they are not able to provide the support I need to get from “I can’t leave my house” to action the plan. However, this has helped highlight that a support service I had in place , a weekly

support /social worker , is key in bridging that gap.

I also have some barriers to seeing a trusted

psychologist. Financial, waitlist, need another appointment with my GP for the MH plan. Again highlighting the impact and benefit that I receive in having that weekly support worker/social worker.

I do have a list of “what has worked in the past” and this links to the mindset I need to shift.

Previously Daily structure, journaling, exercise, nutrition, connecting with nature, creative activities , meeting up with various groups or friends with lived experience or at least a compassionate understanding has helped in the past… I have identified that as my support network disappeared and like many, COVID saw many services move to the online space which is a place I have felt safe in for most of my life…. However I do better when I balance “being connected with nature” with connection through the internet. 

I have realised that the various attempts I have made to “self care through the internet” is not actually helping me to take actions, and I am shifting from “I need someone to help me to set up structure , to engage in activities that help me” towards “what small step can I do today thay I can do on my own”

So I have joined this community and am leaving the spaces online that were ultimately only providing a distraction, and that distraction is no longer helping me.

I am accepting that being stuck in bed means I need to slowly reintroduce movement , and focussing on gently yoga and stretching and getting out of bed and moving around my house. 
I am walking around my garden are foot in the sun to connect with nature , because the mindset of “I need to travel to the beach / the hills/ the park” was keeping me inside🤷‍♀️

I am working on noticing what these “barriers” are telling me…. Myself and my husband both agree that we both want to live in nature and we both isolate when we feel we are stuck in an I unnatural environment. So we are working on shifting our perspective towards downsizing and relocating to somewhere that is in nature… 

I suppose I am looking at , what seem to be self care take that need to be “set up “ for me, and finding different approaches to access the same sort of concept. Eg , I love water and being in water, swimming pools and the beach are not an option but I am blessed with having access to a bath . 

And so on

Thank you for listening and being so welcoming

[tyme]

Hey @Juliet2 ,

Welcome to the forums. I'm hearing you. Thank you for sharing a little about yourself. What you have posted really resonates with me. I recognise it hasn't been an easy road, yet I can testify of the power of recovery.

@Minerva , it sounds like you have a lot of insight into what's been going on for you and how you can support yourself and your family. I'm glad you are working towards getting more in touch with nature. I'm sorry to hear about your struggles with narcolepsy. It's so so challenging just to function from day to day. I'm glad you have supports in place for yourself.

@Minerva @Juliet2 , Are you okay if I make a support thread for you so that other members can connect with you?

[Juliet2]

Yes for me

[Minerva]

@tyme Thank you, that would be very helpful and appreciated.

[_42_]

Hi

i don’t really know what to write here? Not sure how to introduce myself anonymously haha… I have depression anxiety disorder and ptsd, my last two therapists have told me to look for diagnosis and medication, suggesting things like bpd.. I’m not sure what’s wrong with me tho. I do feel awful alone in the world though. Anyways sorry if this was the wrong place to post this or the wrong information…

[tyme]

Hey @_42_ ,

Welcome to the forums! Great to have you with us.

I have BPD, so I know first hand what it's like.

However, what do you hope to get out of a diagnosis? Is it so that you can access the 'right' supports?

By connecting on the forums, I hope you gain the perspectives you are looking for. Navigating MH can take time and it's not always straightforward.

I look forward to getting to know you a little more.

tyme

[_42_]

I guess I think understanding why I’m the way I am and knowing what support I need would be the purpose of a diagnosis, I’ve had lots of therapy over the years and nothing has helped so I guess I’m just hoping there is still something that will. Thanks for your reply. I hope you are well.

[Persephonyx]

Hello, I’m a newbie. 
As far back as I think when I was maybe 7 or 8 years old I’ve had feelings of worthlessness and anxiousness. I’ve always been a massive people pleaser as well. When I was younger, up until my mid teens I also self harmed. 
I am now in my early 30s, and married to my beautiful wife with an even more beautiful 2 year old son. 
I am in the process of connecting with a general psychologist and have my first appointment coming up soon, which I’m looking forward to. 
My wife and I are currently living with her parents because our house fell through and we can’t afford to rent or buy our own place until she finishes uni. I think it’s this current living situation that has exacerbated my mental health issues, combined with the Bondi attack bringing up some trauma from my previous job as an emergency medical dispatcher. 
Im on antidepressants as well. I really, really want to stop drinking forever but don’t feel supported in that goal at all. 
im grateful this service exists and im hoping to make some connections and find some support here.