I just joined this forum and searched FND and your post appeared. I don’t know if you are still on this forum but I hope you are. When you posted in 2021 I was in rehab where I was diagnosed with FND. I was in hospital/rehab for 9 months.
i am also dependent on a wheelchair and have 15-30 non epileptic seizures a day. I can’t balance for more than a minute and it’s no longer safe to try walking with my frame due to my seizures and falls. I have tremors and have to eat with my fingers or spoon wearing a bib. I get bowel and bladder incontinence and I have speech difficulties. I haven’t been able to talk for 6.5 months. I have dysphagia where I choke and have painful dystonia.
I know how hard it is for you. I have lost everything too, my job, my volunteer roles, my car, my independence and dignity and I almost lost my home. I’m grateful to have 24 hour NDIS care. I’m trying to get allied health.
I also have schizoaffective disorder (bipolar type), severe anxiety, C-PTSD from child abuse, sexual assault and domestic violence, BPD and sensory processing disorder (maybe autism too). I used to work with all that as a teacher and director and volunteer but it all got too much and I was in and out of hospital for years having TMS and ECT, on many medications which became toxic and landed me in hospital in 2021 where I was later diagnosed with FND.
l feel like a burden on society. I’m in 10/10 distress in a suicidal psychosis at the moment and my supports are walking away as I’m too complex. I’m distraught.
I hope you see this post as I can connect with you
thank you for sharing your journey. i'm so sorry you've had to deal with so much, and i'm really glad to see here in the forums - i know it takes a great deal of strength to reach out for support, your courage doesn't go unnoticed.
you mentioned that you're experiencing a great deal of distress and suicidal psychosis - is there someone you can reach out to? i know you mentioned feeling like a burden, and i'm really sorry you've been made to feel this way but you do matter. your needs always matter, and you deserve to be seen, heard and supported.
if you're feeling unsafe or want to talk about those heavier thoughts/feelings, there are crisis services such as Lifeline and SCBS that offer webchat 1-1 support:
I’m working with the local mental health care team but I don’t have a psychologist anymore. I lost him several months ago. I told him how suicidal I was so he told me to look into voluntary assisted dying which I’m now obsessed with. He’s not allowed to see me anymore. I’m struggling to find a new psychologist in the community.
Also my nurse has walked away this week because I’m too challenging for her which has destroyed me as she was my biggest supporter any day I needed. My behaviour specialist has also said I’m too complex.
im a burden on everyone. I’m too complex for everyone. I need help and no one can help me. My case manager and psychiatrist registrar have no idea. Everyone else says I should be in hospital, even my GP but reality from them is I can’t because I’m not well enough as I need 2:1 care and because I can’t self care I can’t go on a psychiatric ward and as I’ve experienced a medical ward can’t treat my mental health. It sucks. It’s horrible being so unwell that you can’t even get help. I don’t know what to do
I absolutely agree that psych services are not equipped to manage those with more complex physical needs, and therefore, the individual needs to choose between having their physical or mental health needs met. I have experienced this, and it was only for something very minor... let alone the needs you have described.
I guess on the forums, we can't 'fix' what's happening for you, but by sharing, I hope you feel less alone in what you are going through.
Sometimes, just knowing you are being heard can make a huge difference.
Please know we want to be here for you. To walk alongside you and to listen.
hey @Calmerkoala i can imagine how incredibly painful it is to have people in your team say that about you. i'm really sorry you were treated in that way. the forums isn't a place where we give up on each other. we believe you are worthy of support. if you're still looking for a psychologist, here are some sites to check out if you haven't already:
many of the members here have complex mental health issues too so you're not alone. you're not 'too complex' to us. do you think sharing what's been going on for you with your case manager and psychiatrist registrar would be helpful? maybe they can provide you support support and advice on how to go about things?
I have told my case manager everything and she had a meeting with my support coordinator and nurse who quit. I haven’t seen her since, but will next week and see the psychiatrist on 9 December. My case manager told me about the APS website but it hasn’t helped.
my OT works for FND Australia. My case manager says their student counselling isn’t experienced enough for my complex needs
@Calmerkoala great to hear you've had the discussion with your case manager, hopefully those meetings are able to provide you with some answers in helping you move forward and finding you better supports.
oh i see, it seems like your support team may need further training so they're more aware and confident in looking after your needs?
in the meantime, are there any strategies or activities that have been able to help you cope when you're feeling distressed?
i have some anxiety regulation strategies and I can take PRN antipsychotics. Unfortunately I’m not allowed to take an anti-anxiety medication [edited by moderator] anymore.
my care team aren’t mental health trained so it’s really hard and half the team have moved on leaving me despairing.
im at the tribunal trying to get support through the NDIS. I’m trying so hard but it seems hopeless
