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New episode of illness (tw)

I have persistent depression. But I also get episodes of major depression.

In other words; I'm always depressed, but sometimes the depression just.... spikes.

 

I think I'm at the start of one of those episodes.

And I'm scared.

It's like staring at the sky watching clouds get closer, not knowing how long the storm will be there or how hard it will hit, but still knowing that it will.  Having no idea if it'll make my shoes muddy or just sweep me away.

 

I don't have as much support as I'd really like going into this (whatever "this" turns out to be).

I've already decided to look into getting treatment at Headspace, but that takes a lot of time and effort.

Getting help is never easy for me. It just always takes so much work, convincing my parents that I need help, finding the place, suggesting a time, convincing the doctors that I need help, correcting their assumptions (there's always one), ect.

That will take months.

I'm already exhausted, losing motivation and energy and hope, hating myself a bit, and already trying to sort out all of the appointments for my physical health.

I need help but don't have the energy to jump through all the hoops.

 

I think I just need someone to talk to.

Idk.. it's hard to think right now... even typing's hard. 

Not even sure if this even makes sense to anyone. Sorry if I wasted your time...

Tiny_leaf
Tiny_leafPosted 28-07-2019 08:32 PM

Comments

 
Bre-RO
Bre-ROPosted 29-07-2019 02:53 PM

Hi @Tiny_leaf - My name is Bre and I'm a new staff member (it's actually my first day!). I was just going through posts and wanted to introduce myself and respond to you.

 

First off I wanted to say that from reading just one of your posts I can sense that you are somebody who is quite self aware - which is such a huge strength to have. The way you explained one of your episodes really helped me to understand the fear you're feeling at the moment. 

 

I think it's really brave of you to identify what's going on for you and seek support, especially due to how exhausting it can be to put those feelings into words. I'm sorry to hear that getting support hasn't always been the easiest task for you in the past. What kind of help has been useful for you in the past? And how can we best support you to get the help you deserve? Heart

 
not-an-otter
not-an-otterPosted 29-07-2019 09:36 AM

Hi @Tiny_leaf 

Depression spikes are the worst, it can be like knowing that the storm is about to happen, but not having the energy or motivation to go undercover because it's too hard to get to. 

Just by posting here, it really shows that you can motivate yourself to find help even when it's hard Heart 

You haven't wasted anyone's time by finding help because we are here to listen and support you Heart

 
 
Tiny_leaf
Tiny_leafPosted 29-07-2019 10:06 PM

Phew... just had a blood test today. It took a lot out of me (literally...), so I'm still recovering from that. I had like 12 vials of blood taken at once...

And then I just received an unrelated letter saying that I'm due for a routine full blood count.

I need to ask my doctor if I'm allowed to keep some of my blood.. Smiley Frustrated anyway.

 

 

@not-an-otter exactly... like I know I need some extra help, but just don't have the energy to get it...

And thank you Heart

 

@Bre-RO hello, I thought I noticed a new "-RO" appear!

Um.. my school psychologist helps, I won't get to see her till Friday though.

For any additional support I think I'll just have to hang on till the episode's over and I have the energy to get help. It's just way too difficult atm I think.

 
 
 
WheresMySquishy
WheresMySquishyPosted 30-07-2019 07:14 PM

@Tiny_leaf  I'm sorry about your pain, the blood test, the lack of support and your feelings of exhaustion and sadness. Smiley Sad I can tell that you've been going through so much. It all sounds so tiring and stressful. Heart

I just wanted to say that I'm constantly in awe of your resilience and ability to self-reflect. Those are really amazing qualities to have. Smiley Happy

I hope the test results come back fine. I know it would be good to identify what is causing your symptoms, but it would also give you peace of mind to rule out anything serious.

I hope you get to see your school psychologist. She sounds really helpful. Smiley Happy

Is there anything that has helped you in the past when you feel like you're about to start having an episode of depression?

 
 
 
 
Tiny_leaf
Tiny_leafPosted 30-07-2019 11:46 PM

@WheresMySquishy thank you. Heart

 

The bloods were to check for rarer and less likely possibilities (all of the rarer and less likely possibilities going by the amount of blood they took), I don't think that they'll come up with anything but I'll find out next week.

My OT actually brought up FND today, she's worked with a neurologist who specializes in it and was able to give me her name! So hopefully I'll be able to get that checked out soon.

 

In the past I was really bad at recognizing episodes, so I'd sorta just crash and burn for a few months and somehow get out alive.. 

Good news is that I'm on antidepressants now and doing a lot better, so there shouldn't be any issues with safety, but bad news is that I don't know any good ways to cope with episodes starting because I've never really had any good ways....

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 01-08-2019 04:56 PM

@Tiny_leaf  My sister had to have lots of blood tests to rule out other possibilities too. It was really traumatic for her because they couldn't get into her veins. They ended up having to use ultrasound. As far as we know, nothing serious has come up.

That's so cool how there's a neurologist who specialises in FND! It's a common reason for referrals to neurologists. My sister's neurologist is a bit strange. She used a reflex hammer on my sister's sore legs without warning, which made her scream in pain. Smiley Indifferent

I'm glad the antidepressants are helping! Smiley Happy

I wish I could help you more with finding a service, but I don't live in WA so I'm not too sure about the ones available there. I really hope you find one though! Do you think your psychologist would have any ideas? It must be so frustrating being excluded from services. Smiley Sad

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 01-08-2019 05:53 PM

@WheresMySquishy oof.... I'm lucky that I'm fairly easy to get blood from (one doctor actually got excited when she saw my veins Smiley Tongue)

Blood tests aren't really a big deal for me (even when one of my doctors managed to get me through a nerve, which hurts).

But when I have already low blood pressure and get at least 4 times the normal amount drawn it's not a good mix. Smiley Indifferent

I got iced chocolate out of it though!

 

And I know!!

I was actually really lucky with that; my OT used to work on a stroke ward, and because FND can cause stroke-like weakness down one side of the body she saw a lot of people with it.

So she's actually worked with that neurologist, who's apparently really knowledgeable. 

(thank you for that FND awareness thread by the way, it saved a lot of time when she found out I already knew a bit about it and didn't have to explain)

 

Your sister's neurologist should meet my rhuematologist! He decided to test my pain threshold by poking me with a pointy thing without warning. Turns out I have a normal to high pain tolerance, and a somewhat low being-suddenly-poked-with-a-sharp-object tolerance. Smiley Indifferent 

I feel like "ask before touching" should be a much more widespread thing...

(quick warning, the pointy thing lives at the end of the reflex hammer. If you see them holding it upside-down and like to have some warning, maybe ask what they're doing...)

 

I think that we have a lot of the same ones as the other states, but the most accessible ones here at least are Headspace and CAMHS. After that it's being an inpatient in hospital.

Idk what most hospitals are like, but in mine I got no counselling, no information on my treatment plan, and had my suspected diagnosis hidden from me so I'm not 100% sure about that option....

In theory CAMHS is the catch-all. It really is not a catch-all. Smiley Frustrated

Headspace will know whose criteria I fit, I'm just a little worried by the posibilities of who that might be.

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 01-08-2019 06:55 PM

@WheresMySquishy could you or anyone please help me figure out how to write an email to headspace at all?

I'm completely stuck and have no idea what to include....

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 01-08-2019 08:43 PM

@Tiny_leaf  That blood test experience doesn't sound fun. Smiley Frustrated I have 'difficult veins' which are hard for less experienced people to get blood out of. Last time, a trainee stuffed it up. A supervisor had to finish it and I almost fainted. About five people came into the room and put a pillow underneath my legs.

I think FND and stroke can be very similar. I met someone with a stroke and someone who suddenly stopped being able to walk, which doctors couldn't explain although I wondered if it was FND because she was like my sister. Their symptoms were similar.
I'm glad that thread has helped some people. I didn't know much about FND before my sister got it and it's hard to tell people because they don't understand it. It's great that some good has come out of sharing our experience.

Ouch! That's gotta hurt! I get scared when people poke me. It's not a nice experience. Smiley Indifferent I agree with you that doctors should ask before touching. Thanks for the tip!

Those are the ones I've heard of in WA. Are you able to access any outpatient hospital programs? That might be a better option than being an inpatient considering how awful your inpatient experience was.

It's funny you should say that because I was just emailing a few enquiries about something myself. So frustrating! Smiley Frustrated I guess you could ask what you want to know from Headspace and know what you want to get out of emailing them. Do you want to make a general enquiry, or a more specific one about your situation?

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 01-08-2019 09:23 PM

@WheresMySquishy it wasn't.. not only did she get it through my nerve but I think also through (not just into) the vein she was using. First time I've ever had bruising after a blood test.

Ow ow ow..! My veins are very cooperative and I've never had a trainee take blood.. Do they try to give them the harder draws or something?


And yes, though obviously with very different treatments needed... 

Hmm.. maybe stroke and FND can affect similar parts of the brain? They're both brain-things, one just has an easy to find cause. Idk, it'd be interesting to find out though.

I'd just need a few uni degrees and an MRI machine..... Smiley Tongue

It actually turns out that a family friend has FND.

Mum (who was being dismissive and rude about the whole thing) suddenly became a lot less judgmental after I suggested it as a possibility. It apparently hadn't occurred to her that I might have something that I can't just push through using exercise..


And same... at least I had some idea that I would be poked, but I thought it was blunt!

Anyway, I was able to hold back the reflex to kick for long enough to process exactly what was happening and calm down, luckily for him.

 

Outpatient services here are either for people who've just been discharged from inpatient wards, or are CAMHS...

The only other one I can think of is a pretty intense program involving daily home visits, which I think would be both overkill and absolutely exhausting.

There's one more but its website seems to have been taken down for some reason.

There should be a "which organisation do I use" flowchart or something...

And..... I think I want to ask them if I'm eligible to be treated there (minus a few details...), what program I should use and what I need to do to get in.

Idk what sort of enquiry that'd be though...

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 02-08-2019 05:05 PM

@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.

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 03-08-2019 04:08 PM

@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. 

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 03-08-2019 09:43 PM

@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.

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 03-08-2019 10:23 PM

@WheresMySquishy it's not so much struggling to breathe, it's that I literally stop breathing for a minute or two. I can't even cough when that happens, just kinda.. wriggle around unhappily. 

I probably look like a fish that's been left on land.

I do definitely get freeze fear responses, but I can at least take shallow breaths during them.

I'm personally more like a sloth than a grizzly bear 

I assume the OT escaped you? Smiley Tongue

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 03-08-2019 10:37 PM

@Tiny_leaf  That sounds so uncomfortable and scary.

I guess I'm a bit like a sloth too because I sleep a lot. Smiley Tongue

I think she assumed that I was out volunteering. Actually, I was too tired to go and couldn't go back to sleep after she came so early (it was so noisy), so I just stayed in my room to avoid her. Thankfully, she didn't come in. Smiley Wink

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 03-08-2019 10:52 PM

@WheresMySquishy after much research I have found that sloths are in fact tiny, sleepy humans wearing fluffy coats. Smiley Tongue

Related image

 

I hope you get some sleep-in time tomorrow! 

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 03-08-2019 10:05 PM

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

Just need a minute to be able to respond.

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 03-08-2019 04:10 PM

@xXLexi_Lou122Xx @Beautifullybroken eh, tired and sore mostly.

How about you two?

 
 
 
 
 
xXLexi_Lou122Xx
xXLexi_Lou122XxPosted 04-08-2019 07:09 AM
Hey @Tiny_leaf.
That's not good.

I'm also sore and tired, but only because of the musical, which is FINALLY over.
I'm excited to dye my hair this afternoon, but how are you doing today?
 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 04-08-2019 08:52 PM

@xXLexi_Lou122Xx yeah... it wasn't fun.

Have you had the chance to dye your hair yet?? Do you like it?

 
 
 
 
 
xXLexi_Lou122Xx
xXLexi_Lou122XxPosted 05-08-2019 06:18 AM

Hey @Tiny_leaf .

Yeah, but it didn't work properly. I have colour in my hair, but only vaguely. 😞

Oh well. Maybe I need more than three sachets...

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 06-08-2019 05:37 PM

@xXLexi_Lou122Xx that sucks...

Are you going to try again?

 
 
 
 
 
Tiny_leaf
Tiny_leafPosted 03-08-2019 10:03 PM

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.....

 

 
 
 
 
 
WheresMySquishy
WheresMySquishyPosted 03-08-2019 10:22 PM

@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.

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