cancel
Showing results for 
Search instead for 
Did you mean: 

Re: TW Feeling shit about myself

@Tiny_leaf  Whoa, that must have been really hard. Smiley Sad
One of my sister's hospitals was a bit like that. Her pain specialist initially told us she would be there for a week to do a ketamine infusion, then the hospital refused to perform it because they didn't have enough experience doing it on the pediatric ward. The stay ended up being three and a half weeks, before she was transferred to another hospital for two weeks. No one really knew how to treat her. It was so frustrating.

A lot of doctors told us if we just left her, she would be able to get up and move by herself. Smiley Frustrated We actually tried a lot of times to get her to move and it took us a while to realise that sometime after the initial admission for 'pain management', she actually had problems with movement as well. I personally think that the stress of the initial admission and mismanagement of her condition contributed to her not being able to walk, because she was walking up until then.

Yeah, I was reading about it on the website and FND is not in the list of conditions that the NDIS commonly covers. That's promising that someone was able to get onto it with FND though. People with FND can sometimes relapse, so I'm not sure if that could be argued. I hope that the hospital can show us some other options if the NDIS doesn't approve it. We were able to get some things through the government before but we've had to pay for a lot of things ourselves.
I really hope you get funding too. Depression can be really debilitating. Smiley Sad

I just found this helpful website today: https://fndaus.org.au/
I wonder if they can have any ideas about how we can access supports? I also like their list of specialists and clinics.

Re: TW Feeling shit about myself

Thanks @Maddy-RO, that was exactly the sort of thing I was after!!

 

@WheresMySquishy that must've been awful..

"A lot of doctors told us if we just left her, she would be able to get up and move by herself"

That just makes me so angry! Smiley Mad

Who would just decide to stop walking, to the extent that they were in hospital for over a month?

Like sometimes it is easier to not walk/ move. But not for three weeks!!

 

With the FND thing, I think it depends on whether the person has relapses or remissions.

A relapse is like the issue coming back after it wasn't there for a while; remission's when the issue still exists but the symptoms stop for a while.

Honestly it's probably just a technicality but the NDIS seems to like stuff like that.

 

Oh, I just found out my new NDIS plan's been approved. Not confident that it'll be enough but at least I can start seeing my OT again.

Re: TW Feeling shit about myself

Well apparently some asshole decided to make the process of seeking a hospital admission as painful, triggering and dangerous as humanly possible.

Another asshole decided that it was okay to put 100% untrue information on their website.

 

I hate pretty much everything right now.

Re: TW Feeling shit about myself

Hey @Tiny_leaf 

 

I'm glad the links I sent you were what you were looking for! Did you manage to make contact with one of the organisations today?

 

It sounds like you've had a rough afternoon/evening. I've had to edit some of your post out because it goes against our guidelines (see here). Are you safe at the moment? 

Re: TW Feeling shit about myself

Sorry @Maddy-RO, thanks for editing it though.

 

Yeah, I'm safe, just feeling pretty crap.

 

I haven't had the energy to contact those organisations, there's too much anxiety to deal with rn..

Re: TW Feeling shit about myself

TW for a long and somewhat hopeless sounding rant

 

If I'm lucky I'll be able to get into hospital by Friday.

And if I'm lucky the place won't bring back too many bad memories.

The fact that so much of my healthcare depends on luck is.. really upsetting.

 

In between then and now I have a funeral to attend, a psychiatrist appointment that my admission into the headspace program depends on, and an MRI. If the admission comes too early, I don't get in and I go straight to the bottom of the waiting list.

 

I also have to prove to the NDIS that I need more funding (during that process I will have access to exactly $0.00 funding. The system's probably designed like that to make it harder to appeal decisions) and contact an advocacy group (hoping that they actually agree to help me).

 

My mum doesn't want me to go to hospital. She seems more concerned about what's convenient for her then what's actually healthy for me. 

Which wouldn't be an issue except that we're talking about my healthcare.

My brother's being.. well, himself. He's been throwing a tantrum and being generally as hurtful as possible.

My parents are finally noticing that what he's doing isn't just because he's a "little kid" at age 15. He's doing it because everyone just let him do it and he was never taught not to abuse people.

 

I'm trying really hard to stay safe.

Idk if it sounds like it but I really am

 

It's all just like the world's shittiest game of soccer. Every time the ball gets within reach, the goalposts have moved. About half the people who're meant to be on my team say that they normally play tennis. The other half switch between playing with and against me.

I'm not actually sure who it is I'm playing against and I've got 30 minutes to score 30 goals.

There is no referee.

 

I'm not sure where to go from here. I'm trying to stay somewhat composed but it's really hard..

 

 

Honestly I feel really bad about breaking the guidelines earlier.. It's something that I normally try to be pretty careful with.

But I've re-read this a few times now, so hopefully I've got everything right..

Re: TW Feeling shit about myself

@Tiny_leaf 

 

I am glad to hear that you are safe.

 

I am really sorry to hear how challenging the health system including NDIS has been for you and how hard it is for so many people, its not ok that you are having to rely on luck. The way that you deal with everything is amazing, you keep working hard and trying to be so resourceful! I know things with your brother have been really tough, its good that your parents are finally noticing his behaviour and that no one has been calling him out on it, hopefully that means he will start to change. 

 

You soccer metaphor makes so much sense to me (as I am a passionate soccer player), the goal posts moving, not knowing who you are playing, not knowing who is on your side, and the people who are meant to be guiding you are missing. Its challenging, overwhelming and confusing all in one, so many people can relate to that and you have explained it so well! I know it all feels super hard, but don't be to hard on yourself, you are so resilient and so self aware, these are hard things to do. I think that you are working really hard to be safe Heart 

 

 

 

 

 

 

 

 

 

Re: TW Feeling shit about myself

Thank you @Claire-RO 

Re: TW Feeling shit about myself

Well... surprise development, I'm going to hospital... this evening.

That was.. fucking unexpected.

 

Anyway depending on if they let us access the internet I may not be on for a while. 

If that's the case, I will be safe and in hospital. 

Re: TW Feeling shit about myself

Hey @Tiny_leaf 

 

I'm just catching up on this thread. I really resonated with your soccer metaphor - you have a knack for clearly expressing your emotions. It really helped me to understand some of how it feels to be going through everything you are at the moment. 

 

I hope you're okay in hospital Heart We will all be thinking about you and awaiting your return to the forums once you're able to access internet.