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Re: New episode of illness (tw)

@mrmusic thank you!!!

Re: New episode of illness (tw)

Hey @Tiny_leaf.

How are you doing this morning?
I've had close to no sleep this week, as you already know, but those tips helped a little bit.

Re: New episode of illness (tw)

@Tiny_leaf   Ow! How does that even happen?
I usually get bruising after blood test, but it hurt more after the trainee did it. They usually have to use thins needles on me because the larger ones don't work. Good question!

I wouldn't be surprised if that was true. There has been a some research on FND recently suggesting that it can involve certain parts of the brain being activated. People seem to be affected differently though. Some people have trouble speaking, seeing or have drop attacks, but my sister doesn't have those symptoms. I think with my sister, there is some kind of hyperarousal component because when we talk about people or things she gets anxious about, the seizure-like jerking starts. It stops when we talk about people she likes.
I think FND is more common than people realise, but a lot of people and doctors haven't heard of it and don't know how to treat it. I'm glad your mum is finally taking you seriously!

The daily home visit option sounds exhausting. Smiley Indifferent Part of the reason we preferred my sister to be in a hospital was because we didn't want people constantly coming to our house to treat her. Surely, there must be a better option than daily home visits. I have heard of some services where people 'check in' on mental health patients over the phone where I live.

You could ask Headspace, 'Could you recommend me a program based on my symptoms? Which programs would I be eligible for?' I volunteer for a psychology practice and the receptionists ask the clients what the main issues are so that they can recommend a psychologist with a particular interest and experience in treating them.

I have heard of Headspace doing an initial psychosocial assessment when you first meet with them. These are the kinds of questions they can ask but you can let them know if you don't want to answer any of them.

Re: New episode of illness (tw)

I've been on RO on and off lately. @Tiny_leaf how are you doing now? Hope you're doing alright.

Re: New episode of illness (tw)

@WheresMySquishy bruising would be minor internal bleeding, poking through a vein... idk, possibly just her being careless, the nerve thing is as a result of bad luck, and all three at once... the place's probably cursed or something Smiley Tongue

 

I occasionally get limb jerking/ weird looking shudders, but occasionally there'll be this full body.. paralysis I guess. Sometimes I'll even stop breathing and blinking during that, even though all of my involuntary stuff like my heartbeat will just continue as though nothing's happening.

I'd assumed it was depression or disassociation or something, but it'd probably be worth bringing up when I see the neurologist now that I think about it..

 

And I know! Weekly home visits from my OT already feels like a lot, I don't really want to multiply that by seven if I don't need to....

 

That link looks really useful, thank you!

Time to set up a spreadsheet of my symptoms and conditions while pretending that I'm organised!!

Though it does make me realize that 90% of my answers are either "hmm.... define _____"  or  "Well yes. But also no. A bit of both?". I have a ridiculous way of being given two options, and somehow choosing a fifth. 

Re: New episode of illness (tw)

@xXLexi_Lou122Xx @Beautifullybroken eh, tired and sore mostly.

How about you two?

Re: New episode of illness (tw)

@Tiny_leaf  I think finding it hard to breathe can be a really common issue. Sometimes, I get annoying coughing fits where my face turns red and I can't breathe. I started getting them when I had infections in high school, but they get worse when I get stressed or anxious because it makes my throat dry. It's kind of embarrassing because people who haven't seen it before think I'm dying. When my sister has the shaking, her breathing changes too and sometimes it makes her cough and gasp for breath.
My sister's psychiatrist has seen a lot of people with non-epileptic seizures having breathing issues (mostly hyperventilation). She theorises that it can affect the brain and trigger the shaking. A lot of animals also respond to threat by going limp and unresponsive and she thinks that it applies to people in times of stress too. According to her, some people are more prone to this because their bodies are in a constant state of high arousal. There was a really interesting article where she explained how she treated some of these patients.

My sister's OT decided to drop in with extremely short notice this week while I was trying to sleep. I'm like a grizzly bear when I get awoken prematurely. She better not do it again next week. There's no way I would be able to handle seven home visits a week. It seems a bit over the top.

I think the spreadsheet is a really good idea!
I'm a bit like that too, especially when my eye doctors ask me whether I'm more bothered by my vision problems or discomfort. I'm like, 'Uh... both?' It's kind of hard to answer as well because they seem to be correlated with each other.

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Re: New episode of illness (tw)

My parents decided that trying to get food that both my brother and I would eat was too hard, so they went with the option that my brother was okay with and I literally cannot force myself to eat rn.

My other option was baked beans, but the idea of eating them is making me want to throw up.

So now everyone's decided that I'm being difficult and exaggerating and they don't understand..

And because I didn't choose the option that I would genuinely find as hard to make myself eat as cat sick, everyone's decided that I'm happy with that option and think that I'm not eating because I'm sulking.

I'm so hungry and the food is right there but I can't.....

 

They expected to get this perfect child who'd be basically independent by now and they just... resent that I need more help that they expected and they get angry and if I complain about anything I'm being ungrateful and if I'm in agony I'm being hard to deal with.

They act like I have a choice somehow.

I have to rely on a pair of people with a huge amount of disregard for any needs different to their own, who make me feel like shit when they miss work to take me to the appointments I need and ignore my issues because it's more fucking convenient.

Why the fuck would I choose that for myself?

Every day I'm fighting just to get my own needs met, needs that they've probably never had to think about. And to them, I'm just argumentative and ungrateful. 

 

Tjhis probably made no sense at all, I just don't have the energy to re-read and check.....

 

Re: New episode of illness (tw)

@WheresMySquishy i must've missed your reply sorry..

Just need a minute to be able to respond.

Re: New episode of illness (tw)

@Tiny_leaf  That sounds so tough... Smiley Sad
It gets on my nerves when people complain about having to take their children to appointments. That's what a parent is supposed to do. Being there for your children is more important than work.
You're right that you can't help being in pain or having symptoms. Why would you lie about your health? It's not like you want to deal with doctors or go on medications. It's not as if you're deliberately trying to get your parents to miss out on work.
I get that it's hard parenting a child with health issues or special needs but some parents try to put the blame on the child as if it's their fault. It could be that they're trying to take out their frustration or issues out on you. It's probably got nothing to do with you.