FORUMS

Connect with people who understand what you are going through, seek advice and surround yourself with support. We're free, anonymous, and professionally moderated 24/7.

  • 47,612Members
  • 1,358,869Posts
  • 1,400,000Visitors
Something’s not right

TW Si - Not wanting to keep going. Hope of improvement is gone

TW Si - Not wanting to keep going. Hope of improvement is gone

Hey everyone, thought I'd provide an update from my old initial post because I am getting ever so close to not wanting to go on
FYI: I am safe despite my SI being very present.

This is part very lonnng post, part asking for any suggestions on who to engage with my very complex mental health. I'm in Brisbane.

This is part of my mental health journey of my last post:

  • Diagnosed BPAD2, BPD, CPTSD, GAD, Depersonalisation/derealisation disorder (DDD).
  • An inpatient private mental health stay with TMS being done and a slight medication change. Med change caused permanent extrapyramidal symptoms - restlessness, tics, muscle pain and stiffness, jerking movements that I can't control throughout my body. Now I clench my teeth so my front teeth keep chipping, lip biting and constant clenching of my jaw.
  • Serotonin syndrome 3 times
  • Basically can't change meds or I'm at a very high risk of dying.


Since my last post. 1-year and 6-month journey...

  • Serotonin syndrome again making it 3 times now. The third time was triggered by a very small dose of an anti-migraine medication.
  • I had another inpatient private mental health stay in Dec 2022 and did a further 20 TMS sessions. The effectiveness of the treatment didn't last very long.
  • Engaged with a BPD/DBT specialist psychologist who was dismissive, pushy and invalidating. So I decided to not see her anymore.
  • Have been engaged with a Nurse Navigator through the public system for quite a few months. She is helpful and I feel safe seeing her but she has run out of ideas/options to help me because of the complexity of my mental health.
  • My private health had to be cancelled as I just couldn't afford it anymore.
  • Can't see my psychiatrist from the private hospital as he won't bulk bill.
  • The public mental health system won't actually accept me because I don't have the presentation or symptoms of being acutely unwell. They can't do anything with my medication and despite me being very suicidal they don't consider me as a high enough risk. No ongoing psychotherapy options or the ability to see a psychiatrist either. I have tried so many angles with them and it's a constant no.
  • I've been referred to 4 different support agencies who have either closed off my referral because I'm "too complex" or have referred me to other supports who I've tried and haven't been accepted.
  • When I have attempted to start engaging with supports there is this feeling of "judgement" because I am a very "I can't, I've tried doesn't work" type of person. This is seen as me being too difficult. But it's been identified through psychotherapy with my regular counsellor that I suffer from an intense Existential crisis & Nihilistic view of life and my future treatment options are meaningless and not worth the effort.
  • I've started to see a new psychologist who is a specialist in EMDR. She is absolutely lovely and we have a great rapport. However, at the moment my mental health is so acutely unwell she doesn't think EMDR is suitable at this time.
  • I need intensive regular psychotherapy. When I say regular it needs to be weekly or fortnightly. I have no support network for the 13 days between sessions. So it's just me and my mind which goes absolutely nonstop and driving me insane.
  • I've run out of MHCP sessions and I might need to stop seeing my regular counsellor because of costs. I also will need to stop seeing my new psychologist because it just doesn't fit into my budget anymore despite having extras insurance.
  • The next step is applying for the NDIS under psychosocial disability so that hopefully I have funding to increase my functional capacity. The thought of the application process just makes me cry and have panic attacks. I literally just stare at the paperwork and cry. Then there is the risk that it will get rejected. It's really nearly my last option to afford supports.
  • At the moment I really need someone that is going to sit down and help me to navigate me moving forward in a patient, non-judgmental way.
  • Unfortunately for me, I have a very strong ability to put on the mask and pretend I got this or everything is okay. I also have incredible insight into my mental health and mental health in general (I'm a trained broken counsellor), so everyone always asks me what I think is the solution or next steps. I need help from someone that can take that part of the job away from my brain.

=============================================================

Hey everyone, apologies for the really long post.

I'm Christofuu (35) - Diagnosed in May 2022 with BPAD2, BPD, CPTSD, GAD, and Depersonalisation-derealisation disorder.

Had a private inpatient stay on 05/22. Apart from TMS, it wasn't an overly productive stay.

My counsellor for the last couple of years has been a MHSW. She's been amazing, which has been great to deal with situational crises that have needed to be dealt with (there's been a lot). The therapeutic relationship was established that way as I have very complex mental health challenges.

Where I'm currently sitting at the moment is I'm stuck in my derealisation state. I've tried so many things but I'm isolated from society & don't leave the house. I'm very depressed, also have suicidal ideations (no risk), and don't see a future so struggling to plan goals, I'm incredibly exhausted and have no willingness or capacity to practice any mindfulness, DBT skills, etc... I'm pretty much a shell at the moment with nothing inside.

I've started to see a new psychologist fortnightly at a cost of $250 with $120 out of pocket (she won't bulk bill) and I'm only on a disability pension.

After 7 sessions I feel no compatibility or connection. She's a specialist in BPD and DBT so she knows what she's doing but her approach is throwing me off and leading me to question whether to continue seeing her.

My support network is very limited but incredibly helpful. However, I need further frequent support but I don't know where or how to get more help.

My support network is:

  • GP is fantastic and I see him regularly but I can't continue seeing him for MH struggles as we're not dealing with other health issues.
  • The counsellor is still available to see but she's running at 6 - 8 weeks between sessions.
  • New psychologist who I am reluctant to see.
  • Psychiatrist who's good but not brilliant.
  • Can go into private inpatient stay at any time.
  • I have no family or friends that can help with support. I haven't spoken to my family for nearly 2 years.

My challenges to engage in further supports:

  • Don't know where to go and what to do.
  • I have a very high level of 'apparent competence'. This means I involuntarily show that I am coping better than I actually am. This is a very strong and ingrained behaviour from 35 years of trauma. My ability to wear the 'mask of everything is okay' is so strong it's an autonomous behaviour. I don't become vulnerable easily or communicate my needs effectively.
  • Due to my 'apparent competence' and private health. Community mental health won't proceed with an intake. I've tried a few times.
  • I have generalised hyperhidrosis and other health issues that have a substantial impact on my psychosocial disability. Link to hyperhidrosis mental health impact - https://sydneynorthneurology.com.au/living-with-hyperhidrosis/
  • Due to the severity of my hyperhidrosis, I find it very difficult to want to engage in a group setting or even leave the house. I am constantly embarrassed and have social anxiety due to sweat-soaked clothing, wet palms, and uncontrollable sweat dripping from my face and whole body.
  • My family don't have the capacity to help. I've been the one that has supported my whole family throughout my life.
  • I don't have any friends. Not even one.
  • I don't have anyone to regularly I can talk to when things aren't going okay.
  • My medication changes are very complex as I am sensitive to any medication. I have developed serotonin syndrome twice and have permanent extrapyramidal symptoms (restlessness, tics, muscle pain and stiffness, slow & jerky movements that I can't control throughout my body) from a slight increase in my antipsychotic.
  • I am only on a disability pension so I can't afford to pay for services. NDIS application is going to be done but even attempting to start is just too much.

So after the long post. If anyone has any suggestions on where I could go next?

I would like to engage with someone maybe weekly that can support me to engage in the supports I need for my MH and help me to just navigate life while I try to get myself better.

18 replies

1 - 10 of 18

In response to: TW Si - Not wanting to keep going. Hope of improvement is gone

Re: Not coping - Need help from more professional supports

Hey @Christofuuu you certainly have a lot going on!

have you heard of the PHN? Your gp can put a referral in for you.

I’m not sure where you are located, but in NSW there is an organisation called New Horizons. They support folks with mental health issues to get out in the community more. They do all sorts of things. Maybe there is something similar where you are?

In response to: TW Si - Not wanting to keep going. Hope of improvement is gone

Re: Not coping - Need help from more professional supports

Hi there @Christofuuu !

Firstly, Welcome to the forums!

Thank you for your very thorough post @Christofuuu .

I hear how hard it is to know where to go next. Cost is such a massive issue for those who need long term therapy for BPD. Ive heard it time and time again.

Not only that, as you said, your "apparent competence" means you are not eligible for community mental health treatment; while on the other hand, it you were too acute, you would also not be able to access community MH treatment.

I hear you are in a bit of a straight. Hopefully other members will be able to offer some insights into this.

Tagging @Bow @BPDSurvivor @Judi9877

You may also be interested in Topic Tuesday// Borderline Personality Disorder Awareness Week 2022: 'See The Person'// Tues 27th September 2022 7-8:30PM AEST

Raising Awareness of BPD - Flipping the Script

I'll also be sending you a quick email.

Speak soon, tyme

In response to: Re: Not coping - Need help from more professional supports

Re: Not coping - Need help from more professional supports

That's just the tip of the iceberg but haven't fallen into the water yet... I'm in QLD.


Thanks for the PHN detail @Bow - I see my GP soon so I'll check to see if we did that referral. If not I'll get him to do it.

I've engaged with 3 providers before but they all just close my referral as I appear to have all my ducks in a line... The inability to show vulnerability is always so hard.

In response to: Re: Not coping - Need help from more professional supports

Re: Not coping - Need help from more professional supports

Thanks @tyme I'll have a look at the links.

I've made sure that I've established some sort of file with community mental health so that if I do have an acute episode they at least have some information. But, as you said it's hard to get help through CMH. They've even told me unless I'm high risk of suicide they would be of no help.

I can also admit myself to private at any time which is comforting. I'm trying hard to not let myself get to the Acute stage.

In response to: Re: Not coping - Need help from more professional supports

Re: Not coping - Need help from more professional supports

I agree @Christofuuu @tyme Community mh is so hard to get into. I got referred to them so many times after presentation to ED of SI. It wasn’t until I got to an acute stage and repeat attempts that they finally took me on. Fortunately I am really well supported there now… but still often at an acute stage.

In response to: Re: Not coping - Need help from more professional supports

Re: Not coping - Need help from more professional supports

Hi @Christofuuu . I want to say, you write very well 🙂

I'm not sure I have any ideas for your situation, but I am very sorry to hear all the things you're battling 😞

I hope you can get the help that you need... 🤞

In response to: TW Si - Not wanting to keep going. Hope of improvement is gone

Re: Not coping - Need help from more professional supports

So unfair that the people who need ongoing psychology don’t get it. People with eating disorders get 40 sessions, however BPD does not @Christofuuu

It is widely known that people with BPD need psychotherapy, not more meds!

When I read your post, I thought you were describing me. I was sent round and round in circles because of my apparent competence - I had a few degrees, I was still studying, I had a job. So much so that during an ED presentation, the psychiatrist said ‘we need you out so you can go back to work’. They couldn’t see the internal battle to stay alive, they couldn’t see my hurt; they couldn’t see that I wanted to die. And all this hurt me all the more.

Long story short, I did somehow end up with community MH team support. I should have been discharged early on, but was kept for a few years. I was also accepted for treatment at Spectrum (Victoria’s Personality Disorder Soecislist). Boy oh boy, I can now see I was a lucky one. I received ongoing weekly therapy for a few years. I’ve never paid a cent for treatment. They took me under their wing for which I am eternally grateful for.

To this day, i say I’m one of the lucky ones. It actually brings tears to my ears to know someone DOES see me more than a number or a case.

At spectrum, I underwent 18 months-2years of psychotherapy, namely mentalisation based therapy (MBT). This consisted of twice weekly therapy in group and individual therapy. Group therapy was the hardest, but it was also the most beneficial. It taught me life skills. I learnt to act as a social being in society and regulate my emotions.

Adding to that, I spent weeks (on and off) in prevention and recovery centres (PARCs). Another incredible step. I got so much out of living with other residents, being able to share my experiences, being able to have my MH normalised.

All of this has made me who I am today. I can’t thank these services enough.

@Christofuuu - just kept looking. There ARE people out there who can help you. It took me years to find these people. I moved interstate to find it. And I did.

BPD is 100% treatable. It’s not a lifelong condition.

All the best.

In response to: Re: Not coping - Need help from more professional supports

Re: Not coping - Need help from more professional supports

@NatureLover

Awe thanks... I'm a big waffler and always go into a story haha

I'll get there it's just a bumpy road that I have to navigate slowly😊

In response to: Re: Not coping - Need help from more professional supports

Re: Not coping - Need help from more professional supports

@BPDSurvivor

You've had a lot of of accomplishments and I'm so happy you got the support you needed. It's not easy, but you showed resilience & strength to get to where you are today. Sharing your experiences with the good and the bad is always important because it helps people relate and not feel so alone in the struggles.

It's such a tough one to cope with because like you said, you achieve all these things in life but there's still that emptiness inside.

I see my psychiatrist tomorrow and we'll have a chat about my medication. My muscle movement disorder has started to get really bad. Hopefully I can change my meds and there's not permanent side effects. But I don't think they'll get better.

I'm struggling with my indecisiveness with my psychologist... She's made a couple of comments which just really stuck with me, but in a bad way. I'll explain in detail because it's the only way to describe my minds thinking.

After a session or two I told her about one of the private hospitals messing up my admission. The mess caused me to have a really bad breakdown in the hospital. I nearly decided it was time to finish life. They left me alone with an insulin pump full of insulin without checking on me. The only thing that stopped me was self harm.

The nurse care coordinator moved me to a single room & admitted to the error. She said she'd come back to see me & check on me. I was already packed to discharge myself. I woke up from a nap at 4.00pm & the night shift nurse asked me why my bags were packed... The nurse care coordinator went home for the day and did not do a handover, no notes, absolutely nothing. I lost it again because I felt so vulnerable & unsafe.

My psychologist said to me point blank "your expectation of the hospitals duty of care is unrealistic. These things happen & you've just got to accept it".

I was so taken back by her reaction. I haven't even built a rapport with her and she was just so matter of fact without taking my feelings into consideration.

The next thing that threw my off was. She gave me a DBT skills diary card to complete... I haven't started doing it yet because I'm falling apart and when I told her I haven't started it yet because I'm not coping. She replied "well if you're not willing to do it we won't be able to work together". Again couldn't believe how matter of fact she was.

So now I don't know if I want to see her. As usual I beat myself up & second guess all my thought process. To me though trust and the feeling of a safe, understanding, therapeutic relationship is really important because I don't show vulnerability. When I'm challenged too much I just cut the relationship. Which I know isn't always healthy. But it's a very strong default reaction.

Sooo that's just some of the big thoughts running through my mind... I'll see what my psychiatrist & GP say over the next couple of days and get their thoughts.

In response to: Re: Not coping - Need help from more professional supports

Re: Not coping - Need help from more professional supports

Hey @Christofuuu Just dropping by...I'm sorry to hear about this experience. Sounds pretty invalidating and it's no wonder you have reacted the way you have.

I hope it all goes well with your pdoc and GP. Wishing you well 💝

1 - 10 of 18