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TW: Overwhelmed and not getting the help I need

I'm a bit of a mess right now. I have no idea where to even start... 😟

 

My abusive brother seems to have an eating disorder, which has brought up a whole heap of feelings. Like on one hand he's vulnerable and sick and I just want to help him.

On the other hand he's unpredictable, cruel and bullies me as a way to deal with anything that makes him angry.

 

My pain is getting rapidly worse, but my doctor seems determined not to find a diagnosis. He apparent doesn't want me to start "collecting labels" and sees no value in a diagnosis. I'm getting just a little tired dragging myself to the toilet when I can't walk, and would kinda like to start treatment for whatever I have ASAP.

 

I had some kind of seizure type thing yesterday (after my doctor appointment, of course), so now my muscles are exhausted from that and my joints hurt because of how sudden and violent the movements were. 

I had to drag myself somewhere safe and away from furniture in between the convulsions.. Smiley Indifferent

The only good news is that my gp eventually agreed to refer me to a neurologist for my pain, so I can go ask them about it instead of dealing with him again.

I have no idea how to bring that up to my parents though. I was going to yell for help while it was happening but I think if I had I would've just ended up in the emergency department. 

 

And the NDIS is just... full of it.

I'm currently waiting for them to decide on my plan, which I've had almost no control over, even though they "want it to be my plan" so much that all of the notes about me had to be converted to first person language before they would even be accepted. 

Firstly, I'm not a four year old in a fucking writing class, and secondly, if they will edit it to say what they want it to say anyway, they shouldn't make it sound like it was me who said it. It's like they're trying to take my voice from me.

 

Plus I'm starting to run out of funds from my previous plan, so my current supports are slowly running out. I've already run out of OT funding, and I don't know how many months until they make a final decision about my new plan so that I can get funding and continue treatment. 

I'm still waiting on an initial headspace appointment, and I'm got getting enough physical or mental health supports to even keep myself stable.

 

I'm worried about my future, hate thinking about my past, and "living in the now" is just too painful. I feel completely stuck.

I'm really scared...

Re: TW: Overwhelmed and not getting the help I need

Hey @Tiny_leaf, wow, this sounds really challenging. How are you feeling today? That seizure-like experience sounds terrifying. If it happens again, I would encourage you to seek medical help immediately.

 

Not being able to access your supports due to funding problems sounds really tough. It really sucks that you have had very little control over your pending NDIS plan, do you have any indication as to what funding you will receive yet? I really hope this gets sorted quick smart.

 

It sounds like you're doing the best you can despite very difficult circumstances. Giving you a massive internet hug! Heart

 

Re: TW: Overwhelmed and not getting the help I need

Hey @Tiny_leaf 

 

You've got a lot going on Heart It sounds like you're juggling a lot between managing your pain and attending appointments. I'm really sorry to hear you had a seizure - how are you feeling now? Hope your muscles and joints are recovering. 

 

On the topic of the NDIS - your frustration is shared with many people. It's a difficult process to navigate. I'm not sure of the details of your plan but here is a link to a website called re-imagine - it's a site funded by the National Disability Insurance Agency to help people with psycho-social disabilities to navigate the NDIS

 

With everything you have going on it must be horrible to discover your brothers eating disorder. It's really hard to see family members suffer and I can imagine it's even harder for you given the nature of your relationship with him. Either way here is a link to a resource on what to do if someone you care about has an eating disorder. Have a read if you feel up to it Heart 

 

I can hear you're feeling really overwhelmed by life at the moment. Remember we are here to let you air out your concerns and get support. Hope you're feeling better this morning 

Re: TW: Overwhelmed and not getting the help I need

@mrmusic yeah, it wasn't fun....

The good news is that I don't think it was life threatening, and also probably not because of epilepsy. The bad news is that I don't know what did cause it..

 

And no... they give no information on it. Smiley Frustrated

Atm my family and I are having to fight for the chance to even be sent a draft of my plan before it gets "locked in".

The NDIS have managed to completely remove the participants access to the people making the decisions about our lives, and I'm not very confident of my "assigned advocate" type person I've been placed with.

Highlighted

Re: TW: Overwhelmed and not getting the help I need

@Bre-RO I'm not feeling great honestly.. I think that during it one of my legs made a movement that legs aren't meant to do, or a pulled a muscle or something..

I'm still pretty tired and sore from it, it feels like my leg tried to dislocate itself. Smiley Frustrated

 

I've at least got a support worker today, so hopefully they'll be able to take me to Headspace..

Re: TW: Overwhelmed and not getting the help I need

Hi @Tiny_leaf 

 

It's not good to hear that you've pulled a muscle. Take it as easy as you can while your body recuperates Heart 

 

I hope your time with the support worker goes well today. Let me know how you go at Headspace, if they take you.  

Re: TW: Overwhelmed and not getting the help I need

Hi @Tiny_leaf!

I'm really sorry that you experienced some seizure-like symptoms, as well as everything else that you've been going through with the NDIS, your parents and your brother. Smiley Sad It must have been so terrifying and painful.
My sister gets them in her arms and legs. It's apparently part of her FND.
I'm glad that you're at least going to get to see a neurologist. I think you've been so courageous in fighting for your health. You are one of the most determined people I know. Heart

I found some helpful online resources for non-epileptic seizures while caring for my sister. I'm not sure how relevant they would be to you, but they do have some self-help tips and suggestions for managing them.
Non epileptic attacks website
This FND website that has suggestions for different types of attacks/jerks/etc.
Some helpful resources about non-epileptic seizures from a UK hospital (this site has some good PDFs about how to cope with and manage the seizures).

Re: TW: Overwhelmed and not getting the help I need

@Bre-RO I was able to get there, the person I spoke to was really nice.

She's going to I think try to figure out which program I'm best suited to, and my school psychologist is going to send a referral.

 

Plus I was able to tell mum about the seizure/"seizure". I think all that did was freak her out though. Smiley Indifferent

Apparently I'm actually less concerned about it than everyone else is. I think I'm just used to my body doing weird sh*t at this point.

Also apparently unexplained seizures can be kinda a big deal and I should've woken up a parent during or just after it. Oops...

Re: TW: Overwhelmed and not getting the help I need

@Tiny_leaf  I think it's great that you were able to go to Headspace! I'm glad that they're trying to work something out for you. Smiley Happy

We haven't had many accidents or emergencies as a result of my sister's seizures. The main thing is just making sure she doesn't fall or bang against any furniture. Everyone is different though.

Re: TW: Overwhelmed and not getting the help I need

@WheresMySquishy thank you..

 

I'm starting to think that there's a good chance I have FND..

It'd explain the random temporary limb paralysis that I'll occasionally get, plus a heap of other stuff I'd just put down to general weirdness.

I've heard that this particular neurologist is pretty good, so hopefully she'll be able to help...

 

Also in a fun experiment of "why google is not reliable for medical advice", I found out that I apparently have either the flu, or mad cow disease. Smiley Tongue

Laughing at unreliable symptom checkers is probably one of my favorite parts of the whole thing.