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

@WheresMySquishy Smiley Happy


And that's good..

I was able to move myself into a clear area, so I didn't bump against anything. 

I'm too flexible though, and my joints bend too far too easily, so there seems to be a bit of risk there.. Smiley Frustrated

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

@Tiny_leaf  I think a neurologist could help with getting the right diagnosis. Functional symptoms make up a lot of what they see. They also know about specific tests which can suggest whether a symptom is functional.
My sister's neurologist was a bit weird, but she was helpful in ruling out other possible diagnoses. She organised lots of tests, which took a while to come back because they had to be sent to other hospitals. Just beware of the tendon hammer!

That's so funny! Smiley LOL I just put my eye symptoms into one of those symptom checkers, but none of the results were what I was actually diagnosed with... At least the doctor was concerned I was developing the urgent one at the top of the list.
I guess eye problems can have a lot of symptoms that can overlap with different conditions. It's hard to tell what the problem is until a doctor examines you.
There are also a lot of apps which can show correlations between what you eat and your symptoms, but I think they're more reliable for allergies or stomach symptoms. You wouldn't think that what you eat could be causing non-digestive or non-allergy issues.

I'm glad you were still able to move during the seizure! Well done for making sure you were safe! Smiley Happy


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

@WheresMySquishy I think so too...

In hindsight I probably should've gone to a neurologist first. Still though, it's hard to figure that out as not a doctor..


I also enjoy putting in symptoms that have already resolved by themselves to see how urgently I apparently needed to get to hospital. My results tend to tell me to get to the emergency room immediately. I think I should just set up a tent in the triage area Smiley Tongue


I'm glad as well, since it reduces the chances of me having epilepsy.

Getting somewhere safe was really hard though... my body wasn't cooperating and to get to a clear area I had to drag myself through a 1 meter gap between a heavy piece of furniture and a glass door, and have it perfectly timed so that I wasn't jerking too much as I did it..... Smiley Sad

I got there though..


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

Hey @Tiny_leaf I'm glad to hear that you were eventually able to tell your mum about the seizure, and I'm so sorry that it happened at all Smiley Sad


The flu or mad cow disease, you say? Well, I knew Google had to fail us one day Smiley Tongue

// Spiral outward, keep going. //

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

@Tiny_leaf, I'm so sorry you're going through this and that you feel so unsupported. It must be really hard to feel like you're not being listened to by the NDIS people, and that you don't have a voice. I think you're a great advocate for yourself, and I know this must be really exhausting. But I know you have the courage to keep going from all the amazing support I've seen you give other people on the forums.  

“Your now is not your forever."
― John Green, Turtles All the Way Down

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

Thank you @letitgo and @MisoBear.


And yep! Going by the fact I'm like.. a vegetarian Australian who was born after the really bad outbreaks that happened in Europe... I would've thought that the chances of that were pretty low..

But Dr Google has made the diagnosis; the mystery is solved!!! Smiley Tongue


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

@Tiny_leaf  I don't think it's your fault that you didn't go to a neurologist first. I think your GP could have been hoping that your symptoms would resolve on their own, or he didn't want to admit he didn't know what to do. Sometimes, it can take lots of medical professionals before you find the right one. You have to 'shop around' these days in my experience, unfortunately. Smiley Frustrated We only saw my sister's neurologist after she was admitted to the 3rd hospital (not including the hospital she had a medical procedure in).
My sister's pain specialist kind of reminds me of your GP. He didn't want us to get a second opinion, had no idea what was going on or what to do, and just stuffed us around for several weeks hoping that she would magically get better. He had no clue how to treat pediatric patients and thought that the same things he did for adult patients would apply to them. It still makes me angry thinking about it but I also think that my parents should have got a second opinion at some stage instead of sticking with him for so long. They put too much trust in him when he was pretty dodgy from the start.

A doctor actually told us to take my sister to the emergency room when she first started having her seizures/jerking, but then we called the people she was under at the hospital and they said not to worry and that it was just another part of her condition. They've always resolved on their own after a while.

Oh dear! That sounds really tough. I'm glad you got through it though. Smiley Happy
Do you think that having a personal alarm or bell when you have the seizures would help? Maybe you could also have one on your phone or device. It's a bit hard for my sister to be able to alert people because sometimes she gets them in her arms.


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

@WheresMySquishy I don't think it was my fault either, though I still wish I had the information at the time.. Smiley Frustrated

Or that my gp had put a little more effort into investigating it and suggested a more relevant option...


And yeah, I've heard that too..

I think that the main thing is get to the ER if there are seizures with no known cause, or if they last longer than normal. 


So far there has only been one (yay!!) but if they start happening more I'll definitely look into it.


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

I just got my NDIS plan draft.


It felt a bit like this:

Image result for zootopia gifs carrots for one


There was very little substance hidden between the almost constant misgendering.

A third of the funds I'm allowed to use for a service dog would be spent just buying the puppy.

Probably the rest would be used up on all the appointments I need.

So they've basically funded a pet dog, excluding all the food and vet care.

And the funding I have for support workers would be used up just driving me to appointments.


Fucking hell.

Either they've made a conscious decision to not do their job properly, or they live in some alternate universe where everything is at least five times cheaper.

Image result for zootopia gifs carrots for one


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

Hey @Tiny_leaf 


It sounds like you are feeling pretty disheartened by your NDIS draft plan Smiley Sad. To be quite honest, I don't know too much about NDIS. Is it a once-off payment? or yearly payments? 


Side note: your choice of GIFS are great IMO... I feel as though they're really getting your point across.