FND any one else?

[Judymay]

So I've been out of hospital for 10 days after 14 weeks in. I suffered an infection (mrsa) before it and landed in Ed which resulted in fainting and waking up to right side weakness and loss of speech. That week I was diagnosed with FND. Now I am at the mercy of my mother and living in her house due to losing my independence and in a wheelchair. I have no autonomy. Mum didn't even care for me as a kid so I am losing my mind. My siblings don't want anything to do with me and most of my family and friends supports are mute. I'm alone most of the time and all I think about is having peace by leaving this life. I tried a psychologist today and it was done through email which I I found little benefit anyway, just trying to make it through each day and not hate myself and this life. Anyone else lucky enough to experience this level of sucky? 😂

[tyme]

Hi there @Judymay ,

Thank you for sharing. I'm sorry to hear this has happened. 

Was the hospital aware of your circumstances before your discharge?

I wondering if supported care can be arranged? Is this something you can ask someone?

I can see how both your mental and physical health might deteriorate otherwise.

[Judymay]

yes the level of support offered is disappointing. Sadly there is nothing really unless I get approved for ndis which is a waiting game. 

I've tried lifeline and suicide way back service in the last 24 hours and it's brought no support or anything that assures me I'm not alone and there is reason to persevere. It's a faulted system. 

[tyme]

I'm so sorry to hear you have been 'left' to fend for yourself @Judymay 

Is there a way to expediate your NDIS application? 

I've been through the public health system and noticed that people need to know how to navigate the system and advocate for themselves in order to be heard. Yet in distress, I can see how it would be so hard for people to fight for what they need. 

I hope you find even ONE person who is able to support you through this valley. 

We are here to listen. We are sitting with you.

[Judymay]

Thank you, this is my last hope in reaching out for any hope to be heard and seen. It's been impossible and I am fighting for reasons to be here still

[tyme]

I hear you feel your mum probably has no idea how to support you @Judymay 

Do you think she wants/is able to be your carer at this time? @Judymay 

This is what I'm thinking (I'm only thinking), IF your mother was not able to care for you, what provision does the system need to provide?

From my own experiences, if I had family support around me when I was unwell, the 'system' wouldn't've taken me under their wing. But because I didn't have anyone, the system had to do what they could to ensure I was supported. 

The system's first choice is to have family support where possible. IF there is none, then they need to consider alternatives.

Not sure if this helps.

[Dimity]

Hello @Judymay so sorry to hear of your situation.  I've been trying to support someone who's been unwell for a while and is newly diagnosed with FND. 

And unfortunately I'm reminded of my own mother when I needed help.

Did the hospital set up physio OT and social work referrals for you? You'll be needing MH support too. 

[MJG017]

Hi @Judymay, I'm so sorry to hear what has happened to you, it's appalling.  I know only too well that family support isn't always there when you want or need it.  I wish I had some advice for you but i think the best thing you can do is keep on hassling the NDIS and who over you can get to help you.  Ask everyone you can, doctors, specialist, nurses etc where you may be able to go to for support.  I know the system is far, far from perfect but sometimes it's just a matter of pushing and finding the right person who can point you in the right direction.

I realise this must be so difficult for you right now but don't hate yourself, none of this is your fault.  You deserve so much better than what you've have had so far.  Where here to support you however we can, so please feel free to reach out here as little or as much as you want to.  I hope you can get some better support around you soon to give you the help that you need right now.

As others have suggested, did the hospital set you up with any support services at all before discharging you?  Can you contact them and find out more if not?  It is clear your family aren't giving you the support you need so someone needs to.  As @Dimity  suggested, I would think those services mentioned would be required in your situation.  I hope things start changing for you soon, and in the meantime we're all here to listen and offer what support we can.

Maybe contacting https://fndaus.org.au/ may provide some assistance.

[8ppleTree]

Hi @Judymay 

It sounds like your poor body has been through a huge battle, and you have done amazing to continue and get through. Please don't give up. I can't imagine how topsy-turvy life must be for you right now after the shock of it all. You aren't alone. We are always here to chat 💜

There may be FB groups for FND that you may find supportive, with good specialist recommendations, too. As someone with a chronic illness, I can say that some of the best information I received regarding support came from fellow people who were in the same boat.

The health care system can take time, healing your body and nervous system when it's been damaged can take time. Your safety is really important. Please keep reaching out x 

[tyme]

How are you today @Judymay ? We are thinking about you.