FND any one else?

Good evening @Former-Member ,

I'm think about you as I read back on your posts. How are you feeling today?

Hi @tyme

thank you for checking today has been a self care day where I have been resting as I listen to my body. Felt the drop and knew it was time to sleep.

Thank you @MJG017 for sharing. It's crazy because people are so quick to recommend a support group but I have find my emotional state more implicated by them 🤷🏻‍♀️

but yes I was thinking I might share tonight. I always try to be what I need in hopes someone else may be heard and I might too. It's been one of my most effective strategies for my wellbeing especially when intentionally targeted.

@Former-Member We have to do what works for us, but social media seems to rarely be the answer. Thankfully there are still forums about and we can still use the to get really good support.

That is such a great way to look at yourself in trying to be what you need. I think the really describes peer support so well. We all try to support others and in turn feel supported back. Its that equally bi-directional connection that is hard to find elsewhere... at least it was for me.

If you tag me in when you share you writing, I'll check it out when I get home. Tag anyone else you know here as well, I'm sure they will enjoy reading it as well.

Hi @Former-Member

You are not alone. I’ve just found you.

i have FND too. I was diagnosed in a 9 month hospital and rehab admission in 2021. FND has destroyed the minimal life I had due to mental illness.

I’ve lost everything. I’m also wheelchair bound unable to balance or walk. I also can’t regulate my body temperature and feel too hot and I have various speech difficulties. I haven’t been able to talk for 6.5 months. I used to get functional mutism, or stuttered and slurred speech with foreign accents. I have 15-30 seizures a day. I’m incontinent. I stop breathing and I have dysphagia so I choke. I have dystonia and nerve pain. I hate FND.

my family is not supportive with FND or mental illness. It makes it so hard. I had to live with my mum for a few weeks between hospital stays but now I gratefully have NDIS support. It’s sad that the only people who care for me are paid to do so.

i hope you receive this message. You are not alone

Hi @Calmerkoala

thank you for reaching out and I am sorry to hear about your journey. I can't even imagine 9 months the hospital were trying to kick me out every week 🫣 however I was happy to leave.

I am glad to hear you have ndis, I have been left to be at my mums ask have not yet been successful at that bit but I am trying to push through but would gladly take any tips you have on the process.

so glad you are here

Hi @Former-Member

I am glad you received my message.

I got onto the NDIS in 2018 due to my psychosocial disabilities. I had a support worker take me to ECT appointments so when I got FND in 2021 I was already on it which helped. The rehab hospital did reports and I got more support worker hours and some allied health. I’ve unfortunately only deteriorated so we have had to put in many changes of circumstances to go from 10-24 hour care. I’m fighting at the AAT to try and get the help I need. Been 2 years so far and we have a court hearing in February. Unfortunately you really have to self advocate to get anywhere and the NDIS doesn’t think anything is reasonable and necessary or value for money so it’s a constant battle. I’ve had no luck finding a disability advocate but if you can find one it would help.

my mum is no support at her. I had to live with her for 3 weeks after being diagnosed with epilepsy and encephalopathy but then I got really unwell with FND and couldn’t walk or do stairs so couldn’t return to her house which I’m glad of.

if you have any questions feel free to reach out.

Hi @Calmerkoala thank you for sharing and I am sorry to hear of your challenges.

I have actually just been diagnosed with autism and now trying to figure out if I do tribunal or need to restart with this added diagnosis. I just can't seem to get an answer from anyone. All I know is I've been told I have better chances with autism diagnosis on board as it's definitively a neurological condition and excaberates trauma and FND.

Hi @Former-Member

I have heard that a lot of people with FND have autism too.

I never thought I had it. I picked it up in my brother after becoming a teacher. My mental health team this year though has suggested I have autism too and it kind of makes sense when I think about it. I have sensory processing disorder that has got worse having support workers around me compared to me living alone.

good luck with the NDIS