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servin-up-surveys · 1 month

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survey #203

Who has made the biggest sacrifice for you? My mom, for sure.

Who is the most overbearing person you know? Our landlord/family "friend." It's hard to call her that by now.

Do you still remember your first kiss? I do.

Are you happy with where you are relationship-wise now? In general yes, but I do wish Girt and I had more time with just each other, not sharing houses with parents. I do sometimes wish we had our own place already, but I'm also very understanding of why we don't, both from my side and his. Sometimes I just get impatient and feel like I don't get to be a real adult.

How many kids do you want to have? Realistically none, there is a thick-ass book of reasons why I should not have a child.

Have you ever purposely given someone the wrong number? No.

Who’s the last person you smoked weed with? I've never smoked anything.

Are you currently wanting any piercings or tattoos? Permanently.

Who is the person you have hurt the most? I'm going to assume Sara, but I have no way of knowing that for sure.

Who is the person that has hurt you the most? Jason. Sara's right behind him, though. She's SAID more hurtful things.

Who’s the last guy to give you roses? Girt.

Did your parents do drugs when they were younger? I'm aware that Dad did while he was with Mom but before us kids were born.

The first thing I’d do after winning the lottery is… Buy Mom a house that's perfect for her.

The videos that always make me laugh are… Game Grumps ones.

One of my favorite writers is… Margaret Atwood. I'd like to read more of her stuff.

One of my favorite singers is… Freddie Mercury, RIP king.

What’s a favorite hobby of yours? RP. I want to branch off to more animal RPs, I've just had trouble finding places that aren't overly complicated or are my style.

I think a good source of therapy is… Journaling.

A friend who I can always be myself around is… I feel zero shame being fully myself around Tez and Mazzy. I think it's important to mention here that I KNOW I can be 100% myself around Girt, I'm just so wildly afraid of rejection/judgment/being seen as "weird" that I'm still sometimes needlessly hesitant. I've gotten better about it, though.

Something helpful to lose weight is… Not a very helpful response, but real talk, the most reliable "how to" I've found is to be in a good mental health state. My heaviest era took place during my saddest, and my healthiest weights post-initial mass weight gain came from periods where I was mentally well. NO, you do NOT need to be "okay" to lose weight, I'm just saying historically, that stood out for me.

A fear of mine is… Aside from the answers I normally give, for some variety, slugs. I'm very afraid of them just because of their sliminess and general texture. I will scream if I see one, and will NOT touch something one is on, even though I know how stupid that is, it's like I expect them to bolt up my arm when they're fuckin slugs, bro lmao. I want to overcome this fear, I actually think visually slugs are quite cute, and they're also helpful organisms that are just so harmless, but I'm so freaked out by them. It's funny, I'm not scared of snails at all; it's like put a shell on their back and suddenly the cuteness overrides the "ew slimy" reaction.

If you knew me well, you’d gift me… Anything meerkat-related, for sure. You could literally gift me a single Mountain Dew Voltage and I'll deem you a saint, haha.

Who is someone you’ve been enjoying watching on YouTube recently? I've actually been watching some Good Mythical Morning again! I'm wondering if perhaps my hyperfixation is cycling back around, haha. Maybe I just have three of them that rotate in my head like a rotisserie chicken.

Who was the last of your friends to have a baby? I think Bethany?

Which family member did you get your height from? My mom.

Which TV channel did you watch the most as a kid? Animal Planet.

Who is your favorite cousin? I don't have a favorite cousin.

If you had to choose a country to live in besides your own, which country would you choose? Probably Canada. Sucks major ass that you can't have hognose snakes as pets there, but.

Do you think you look better with long hair or short hair? Short.

What did the last mask you wore look like? It was an oxygen mask lmao

Have you ever ridden in an ambulance? I officially have now as of the second asthma attack.

What color was your nursery when you were a baby? I didn't have my own nursery that I remember. I had a crib in my parents' room, at least in the house we moved into when I was like, two. I don't remember the house I was actually born into whatsoever.

When is the next time you will attend a family reunion? Where will it be? We don't have these.

Do you like cereal? What would you consider your favorite kind of cereal? I do. I think the chocolate Krave is my favorite.

What’s your favorite lollipop flavor? Strawberry or watermelon.

Who did you last hold hands with? My boyfriend.

What sounds help you sleep? Rain on the window. A fan.

Do you have a loud or more soft laugh? LOUD bitch I am a hyena

Do you like to dip your fries in a frosty or ice cream? No, I don't get the appeal of this.

Cookies or brownies? Brownies.

Are you a fan of musicals? I'm really not.

Have you ever stargazed with someone? Yes.

What color is the vehicle you ride in most often? White.

What’s your favorite kind of pasta? Just ordinary spaghetti with meatballs.

Would you say you’re a condescending person? Not at all.

Have you ever mowed a lawn? No, that is not a chore I ever want to have.

What’s the last song you listened to? Pretty sure it was "Back In School" by Mother Mother.

Are you content with your social life? No. I wish I had a few more friends and did more things with these people.

Have you ever had edible flowers? I've had honey from honeysuckles.

Do you read other people’s survey answers? I read my friends' answers. And of course sometimes when copying surveys from randoms, I can't help but read some of their answers just because my eyes naturally graze over the words, but I don't pay real attention.

Do you work better alone or in a group? ALONE. I was one of those students in school that was often allowed to work alone when things were meant to be group projects; my teachers liked me and also had faith in my ability to deliver, so they respected how I was comfortable working.

What are 3 essential items you won’t leave the house without? My phone and inhaler are the only real musts. I carry my wallet in my purse too (where my phone and inhaler are too), and it has important cards in there, such as my blood type in case of some wild emergency where I need a blood transfusion and I'm nonresponsive.

Do you enjoy spicy foods? I do.

What is something you want to be remembered for? I advocated for love and peace and kindness towards our planet and all that live in it.

Do you like pickles? I love dill pickles.

What is something you take a lot of pictures of? MY CAT lmfao deadass

What is your favorite thing about the beach? Being in the water. I'm one of those people that love being smacked (but not totally abused lol) by the waves, being tossled a bit and stuff. If reminds me how small I am, how inconsequential my ass is in the giant scope of the universe and even just this single planet. It's VERY freeing from anxiety, I just feel very peaceful when I'm in the ocean. I hate the salty wind, I hate the yucky sand and walking through it and having it stick to your wet body, but being in the ocean is an S-tier experience for me.

Are you afraid of snakes? Not at all, snakes are some of my favorite animals on the planet. Like sure, I'm going to be respectful to venomous species and give them space, but even those I'm not properly "afraid" of.

Do you think frogs are ugly? No, they're cuties!

Name three things that you find refreshing. A nice cold drink, a cool breeze, and the taste of mint.

What is your favorite vegetable? Broccoli or well-prepared green beans.

Do you own any succulents? No, just fake decorative ones. I'd kinda like to try taking care of a real succulent, so long as it was hardy. I don't have full faith in myself with taking care of plants.

What is your least favorite shade of green? That like, puke green color. bleh

Do you like olives? No.

What are three of your favorite insects (or insects that you think look cool)? Butterflies, moths, mantises. I wanna mention ladybugs too, they're so cute, but I think they've gotta come in 4th place.

Would you ever dye your hair green? I have done this before, like a mossy green color and I loved it.

Are you a tea drinker? I hate tea. Any kind I've ever tried.

Do you like mangoes? So I'm funny with mangoes. Mango flavor? It's one of my favorites! But the texture of real mangoes is so fucking repulsive to me, I can't eat them. I was SO disappointed when I tried one the first time.

What’s your hair texture? It's VERY thick. Smooth, I guess. Mostly straight, mild waviness.

Do you play games on your phone? Yeah, I enjoy PokemonGO, DragonVale, Dragons of Atlantis, and Amaru (it's a self-care pet but has "game" traits to it).

Is acting something you’d enjoy? Are you convincing? No, I would feel VERY uncomfortable.

In what ways are you immature? I am very attached to/reliant on my mother.

Are the Olympics something you get into? Not at all.

Chocolate, strawberry, or vanilla milkshake? Chocolate or vanilla, depending on my mood.

What’s something or someone you’ll always defend? Gay rights. Access to safe abortion. Equality of all sorts. Lots of stuff.

#survey #surveys #personal questions #personal surveys #random questions #random surveys #questionnaire

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dropintomanga · 3 months

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Get That Bit of Chunibyo Inside You

"We must have a bit of 'chūnibyō' inside us. The fact is we like manga because of the moral within that could touch us emotionally, and we have to behave as we are taught from these media." -Chloe Lisa Kung, Organizer of Rainbow Gala 30, Source: Rainbow Gala 30 and the End of an Era: Hong Kong's Biggest Doujinshi Convention Set to Shutter

I stumbled across an Anime News Network article about a Hong Kong doujinshi event, Rainbow Gala, possibly not existing anymore after a long run in a convention center set to be demolished in the near future.

The organizer, Chloe Lisa Kung, was asked about the future and what led to the impending doom of her event. She spoke about how Hong Kong youth aren't allowed to thrive or chase creative pursuits. Kung lamented on how there's no breeding grounds for young artists to shine or inspiration for art in Hong Kong compared to almost 30 years ago when she started to draw at the age of 12 after seeing doujinshi art.

It does make me think about Hong Kong's anime culture today. I remember visiting Mong Kok Shopping Center back in 2009 and it felt like going to Akihabara in some ways. Every floor was filled with anime, manga, video games, artbooks, toys, etc. When I hear about Hong Kong now, I hear that it's "dead." And reading what Kung said now makes me hesitant to go back there in some way. I do feel that Hong Kong is a bit too commercialized at times. I never liked Canto-pop much and listened to counter-cultural Cantonese music. While anime has always been popular in Asia, it does feel like there's a very genuine communal vibe in that part of the world when it comes to anime/manga fandom and outside forces are slowly stripping that away as everyone wants to jump in on the fan convention train.

There's something that Kung says about the future of Rainbow Gala that makes me think about fans in general and the growing appeal of anime to doujin artists.

"Indeed, there are more consumers now than ever, but the most important lead still lies in the people inside drawing."

I think about the kids who draw manga after watching an episode of anime. I think about the various drawings I've seen over the years of their favorite characters. Sure, some adults will find it "cute" and suggest that it's just a "phase." But to me, the magic starts to happen there.

There's so many consumers, but not enough people to create stuff that can touch lives. It's hard to be creative. Creativity is often devalued due to a general obsession over measurable outcomes.

Kung's words about learning from manga also make me think about how much manga has meant to me. While I did write that I needed mahjong to save me, manga is still what I care about the most. A lot of my mannerisms and attitudes still come from manga. I try to incorporate my manga reading experiences into how I behave. Sometimes, I make blunders, but I still try.

I think about how most fans aren't like me and countless others who use their love to talk about manga on the internet (shout-outs to the bloggers, YouTubers, and podcasters that promote manga in their way). What drove us to start talking about our love to manga to people who don't know us in person? What drove us to become more than just consumers? How do we cultivate that mindset? Those are questions that I'm still trying to get the answers for.

I can only speak for myself in that my own personal mental health experiences combined with the environment I grew up in made me want to blog in the first place. I continue to do so because of how much manga has grown in the past few years. I know it's not just a phase for some youth.

Until then, I'm proud to say that I still got a bit of 8th grade syndrome in me. I'm proud to say that stuff that's mostly read by teens still gets me pumped to seize the day. I'm proud to be a fan that wishes for future creators and their youthful enthusiasm to be treasured as much as the mainstream works that inspired them.

#quotes #manga #mental health #creativity #anime #doujin culture #fandom #fan conventions

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skepticalarrie · 1 year

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Allie, may I ask you something private? How do you spend your weekends? Do you go out a lot or just stay at home? Do you cook yourself? I am always at home reading or on the internet. I do not like to go out actually, and with lots of youtube vlogs and books I feel like there is no need for me to go abroad on vacation and it is all too much for me now. Also, aging is real, man! I need rest and decent sleep, and it is quite hard to stay fit when you reach certain age. Damn, life is sometimes hard...

Hey, anon! It depends. This past week specifically was super busy for me, I had to go to a bunch of places and see way too many people for my liking so I was so fucking drained, all I wanted to do was to spend the weekend by myself and at home. But there are weekends that I go out more, and see some friends, I also go to visit my parents from time to time.

But I don't really like too hectic weekends because not gonna lie I'm usually very tired and since I don't have loads of time during the week, weekends are also usually when I try to fix everything for the next week, so I need to clean the house, go to the store, cook, etc etc. And just sleep... I totally get you, getting proper sleep is probably the most important thing to compensate for the rest of the week 😅 Besides that, in general, the weekends are reserved for ~me time~ so regardless if I'm staying home or going out I really try to treat myself and make it about something I love. It sounds dumb, but something I've been really enjoying recently is watching tiktok videos on how to spend friday/saturday night alone, there are some lovely tips there that make all the difference. So cooking something different, doing something crafty, some DIY spa night. It's very inspiring, it makes me feel so good and it's not the same as always like reading and watching tv and these kinds of stuff.

During the pandemic, it wasn't too awful for me to be at home and by myself, because I can definitely make myself busy, I'm not exactly a social butterfly. And then when the lockdown was over I felt like I wasn't feeling very good anymore and I couldn't exactly place it?! It took a lot of therapy for me, but I really had to force myself to go out a bit, even if alone, to have a drink or a walk in the park. And my mental health improved SO MUCH when I started doing that, I'm doing so much better now, I feel like I get a bit depressed if I get stuck in my own little world for too long. Everyone is different, of course, but for me it was quite a big deal to do some self-care out of my house and see the "real world" a bit. But yeah... it's not easy, to balance things out! I hope you can find that balance soon, sending you loads of love <3

#ask #not 1d

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nico-idc · 3 years

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random vent because i'm numb rn and feel like it

This is a vent post, ill probably talk about su!cide, self h*rm, eating disorders and depression. I’ll also cuss a lot, and things will not be censored. Also, this may seem insensitive to people experiencing any of this, sorry about that. Dont read this if youre triggered by that.

Also, this is my experience with mental health. Everyone deals with it differently.

So, If anyone doesnt know, I have depression and anxiety. And right now, I’m feeling numb as it’s often described by people with depression. But, numb isn’t a very good description. I can still feel. I’ll still smile if you tell me a joke, or if something funny is on a video. I’ll still cry if there’s something super sad. Emotion is just watered down. I feel it, but not as much as I should. Me and my boyfriend were talking, and i couldnt tell him I loved him. It’s not becuase I dont love him, but I just cant feel much of anything, so I dont want to tell him I loved him. Becuase If i did that, I felt as though I was lying. The funniest thing is, I randomly started crying. Still felt nothing, but hey, I had tears streaming down my face. Who fucking knows why.

I havent been doing to great for a while now, but this is the worst i’ve ever gotten. Ive never felt numb before. I mean, I’ve felt myself starting to go through the motions, but i’ve never gone completely numb before. And before this i’ve had a few mental breakdowns. Hell, I’ve sat in a corner twice in the past month or so doing nothing but sobbing and begging myself not to move so I dont grab something sharp and cut myself. (I did not relapse, don’t worry). and recently I completely broke down over simply eating a cereal bar, got through it, ate it. I’m good now.

Figures. That does seem to be my experience. Oh no, big bad issue one time, then magically I just talk myself out of my bullshit, and im fixed. Ha ha, yet I act like I have all these issues. I mean, I didnt even attempt to starve myself, just thought “oh, friends and family wont let me” and didnt. Had a breakdown about a year later, been fine since. Cut for a few months, went to therapy for a few months, stopped cutting. had a few breakdowns about a year or two later, then was fine. was suicidal for a while, went to therapy for a bit, was happy for months. Had breakdowns every now and then, fine now.

ha ha, first time I say alot of this is online. Figures. I’ve done that a lot too. My boyfriend has found out a bit about my depression through this site. Becuase I cant talk to my boyfriend about my shit, but hey random people on the internet! hear about my problems.

So on another note, I recently found a song that describes part of depression pretty well. It’s called “i’m not dead” by boyinaband. it’s linked below, I’ll copy paste the lyrics, and explain how I relate, and what the lyrics mean to me, becuase why not? (lyrics will be in bold)

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I'm not dead

I'm not fixed, but I'm not giving up yet

Basically, this means that im still here, im still depressed, but I’m still trying to fight depression.

I'm sick of saying that I still don't have anything done

I hate telling friends I'm trying something just to give it up

I never commit to anything, I just say I’ll do something, then decide I dont want to.

I'm still unsure of my emotional state

I'm still incapable of focusing lately

I don't feel like creating

I'm tired of asking Google how to find motivation

I’ve been on break from writing for months now. tried to get back to it, lost concentration. I think this is self explanatory.

I don't think I've ever made

Something that's as good as I'm capable of

Ha, I dont put in enough effort and commitment to make something as good as possible.

I hate not having a reason to look my best

I only ever take care of myself with the intent to show the internet

I mean, I dont try to show the internet, but I only take care of myself when other people will see me.

If what made me successful was an imposed sense of stress then

I am so so glad that I hated myself

The only thing that makes me do things is extreme stress.

I didn't luck into this position

I struggle with decisions

I mean, im not in any high position, but I do struggle with decisions.

I wouldn't be my own friend

I'm too inconsistent

I’m inconsistent as hell. I’m in like 10 group chats, don't talk in any of them for months, then just show up like “hi, havent talked to you all in ages, but hi”.

Without immense pressure nothing ever gets finished

If these words make it to your ears it'll be a fucking miracle.

Yep. I went on whole rant about this on wattpad. Without pressure to do something, I don’t do it.

I'm fortunate to know more good people than most do

I wish I had more friends I could be physically close to

I dont personally have a lot of friends that dont live in my city, so the last line isnt an issue, but I do know a lot of good people”

I'm pretty good at like 20 different skill sets

At the expense of never being great at any one of them

I’m good at quite a few things. Drawing, math, even writing. But im not great at it. I’m average.

I wish this beat hit harder

I wish more syllables rhymed

I know 99 percent of people really don't mind

I dont personally relate to this, seeing as I dont make music.

I think collaborating forced me to finish things

'Cause I was terrified of wasting famous people's time

Oh yeah. Group projects would not get done if i wasnt scared of wasting my partner’s time.

I wish I could focus on what I define priority

I wish I was as grateful as I want to be

Dont really relate to these things

I wish I knew more people who were mentally stable

But if I did,

I wouldn't let them waste their time on me while I'm disabled

Oh yeah. Id love to have a friend who isnt depressed, but I wouldnt let them see that im fucked up becuase i dont wanna drag them down.

I feel alone

I know I'm not

I have a lot of friends, but I still fell alone in this world

I used to talk to lots of people.

Lately I've stopped

They didn't deserve it,

I've been a terrible friend.

But I couldn't bear to let myself become boring to them

I ignore group chats all the time. no reason. Probably shouldnt.

I don't let myself get my hopes up.

I love people who do.

Something good happens? what could go wrong? that is my thought precess.

I never know if what I say I feel is the truth

I have no damn Idea what I think, so its so hard to know what the truth in my head is.

I wish I didn't instinctively try to be less specific

So more people could relate, when they read along with the lyrics.

Not lyrics, but if i write/explain something, I immediately generalize things so its relateable.

I can be happy in the moment

I am not when I reflect

I smile watching youtube, but then I look back and think about how I wasted time.

I distract myself with gaming, waiting to get better

I hate it

Youtube will cure depression right? /s

I wanna do the most good, and prevent the most hurt

But I've gotta put on my own oxygen mask first

This is just an important phrase I try to remember when I’m down. for people who dont do well with metaphors, he’s saying that if you want to help people, you need to help yourself first.

I can't predict what I'll do.

I can never be sure

I am terrified of making promises any more

I can't face my work,

I feel sick from the word

I genuinely believe I'm capable of changing the world

Don’t relate much here, except for the more positive, upbeat tone the song takes on, and i feel that this part, the part above and everything below is dave fighting his depression.

I still think I can get better

I’m holding onto hope.

I still think I can create and get pleasure from it

I hope so, I want my art and writing to improve.

I'll keep aiming to make my emotion and my logic agree

The eternal stuggle. I always try to get the two to line up, it rarely works. I try to use logic more often though.

And become the best version of me

Always trying to improve myself.

I don't want to stop!

There’s alot this could mean. I dont want to stop creating. I dont want to stop fighting. I dont want to stop getting better. I dont want to stop living. I relate to all these things.

I’ll expand on this more later, it’s too late now for me to continue this

#cussing tw #swearing tw #tw suicide mention #tw self harm #tw eating disorder #vent post

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eveiswriting · 4 years

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I have suffered with anxiety and depression since I was 11 years old and ever since then, I've noticed that some days are better than others in terms of how much I can cope. Some days I feel as though I can achieve anything. But a lot of the time (most of the time), I am busy doubting myself, worrying about other things and feeling generally drained from life itself. So I thought I'd give you some tips I use to help myself study despite suffering with anxiety and depression. I'd also like to add a little disclaimer that I am by no means saying this will cure your anxiety or depression nor make your life perfect. I know the seriousness of dealing with mental illness and my aim here is to share tips that I myself find useful.

1. Change up your routine

I notice I become really depressed when I repeat the same thing constantly and never change things up. By changing the method you study, you are challenging yourself in different ways but also making sure your brain is stimulated. So, one day you can try flashcards but another day you could watch a video and take notes or make a mindmap or make a PowerPoint and record yourself talking over it as if you are a teacher teaching that content to your class. There are numerous ways to change the way you learn.

2. Reward yourself

For some people, this may mean food or watching tv or even playing with your cat. Whatever makes you smile or feel better or slightly more relaxed, make sure to do it. You should not punish yourself for not doing 20 hours of work a day. Whether you have done 1 hour of work or 8 hours, you need time to breathe and relax away from the pressures of study.

3. Wear comfy clothes

If I visit a library or cafe, my anxiety is so high by being surrounded by people that I am already feeling out of my comfort zone. So, by wearing clothes you feel comfortable and confident in, you are more likely to adapt to the place you are in and be able to relax there. Also, studying is not much fun if you're feeling uncomfortable so choose wisely!

4. Listen to your favourite music

There is something strangely calming for me when I hear one of my favourite songs come on whilst I study or am in public, such as in a library trying to study. I get majorly anxious even if I go somewhere like a library or somewhere where other people study, so being able to listen to songs I love and that help calm me or just make me feel happy is a massive plus. If music with lyrics or music in general distracts you, I recommend either listening to white noise on youtube or asmr study live streams where they use rain sounds.

5. Adapt on down days

When you deal with mental illness, you will know there are some days when it is simply impossible to get your brain to work. You might look at your to-do list and feel a sense of dread knowing that you will never be able to get all of that done, especially if you are feeling particularly depressed or anxious on a certain day. I think the key thing that has helped me is to adapt and recognise that some days you feel like absolute crap and nothing is working. Instead of trying to force yourself to study for hours on end, try just doing something for 10 mins or 20 mins or perhaps at max 30 mins. You might think 10 mins is nothing but if you did that 3 times then you will have done 30 mins of work already. It doesn't matter how much you do, it's HOW you study. You could spend 10 hours being completely unproductive. Time does not always constitute productivity.

6. your study space

I am slightly a hypocrite with this once since I really need to make my study space and desk better for studying. With this point, I mean that you should add little decorations or things you know will make you happy around your study space. Some people might want to add fairy lights or postcards to the wall, whilst others may prefer to put a picture of their favourite singer or group. You can really be creative with this but also don't overcomplicate it since you need enough space on your desk or study area to actually be able to study and have your books out!

7. talk to others about your worries and feelings or write them down

The anxiety and the stress that school often gives us can be made worse when someone already struggles with anxiety and depression to begin with. I'm admittedly not one for talking about my feelings, I would probably say I have about 1 or 2 people close to me I could be honest with when I am feeling down, but that doesn't mean it is easy. If you are seriously struggling to the point you feel you can't take much more, please please talk to someone and do not bottle it up. Whether you call a helpline just so you can vent to someone, whether you talk to your best friend or an online friend or your brother, just please do it and don't let yourself fall into the habit of shutting everyone out. It is extremely hard to focus on studying if you are trying to fight against yourself and the negative emotions you are feeling every day on top of that.

links if you are in crisis:

a list of international suicide hotlines:

a crisis hotline (they work in the U.S., UK, Canada, South Africa, Ireland)

this is another website which gives the hotline numbers for the U.S, Canada, the UK & Republic of Ireland, Argentina, Spain, Australia, South Africa, New Zealand, Germany, France, Italy, Serbia, Mexico, Japan, Brazil & India

more hotlines for crisis & suicide prevention which ontop of the above also include Austria, Belgium, Portugal, Czech Republic, Denmark, Finland, Greece, Hong Kong, Hungary, Israel, Latvia, Lithuania, Luxembourg, the Netherlands, Norway, Poland, Serbia, Singapore, South Korea, Sweden, Switzerland, Taiwan

These tips may be short and simple but for those struggling with mental illness, even these small changes can be hard at first. Please take your time and look after yourself. Your health should not suffer just so you can achieve an A* grade. Studying can even be fun, effective and interesting if done correctly. But if you overwork yourself or deny yourself a break, you're actually going to end up less productive.

So, my overall advice is: study smart and try to monitor how you are feeling and when things are getting too much. There may be times when you hit a very low point and maybe even question if you have the ability to carry on, but I promise you that you have that potential to achieve the things you want.

#studyblr #100 days of productivity #study tips #study motivation #study #studying #self care #studyspo #study space #mental health

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eds-zebra-warrior · 3 years

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2021 Ehlers Danlos Society Awareness Month (Day 18 Prompt: Words to Parents)

I am interpreting this prompt in two different ways so will address it as such starting with explaining how my parents are with my condition and then words to parents of kids newly diagnosed or who present with a wide array of symptoms.

My parents were awesome prior to my diagnosis. There were things I wish they had known and even now wish they knew but I almost always had that support system some don't have. Sure there were a lot of times I would tell my mom I was having chest pain or my heart was pounding where she would say “It's probably just anxiety” and of course when anyone has a headache, runny nose, stuffy nose, scratchy throat or generally coming down with some kind of bug her notorious saying was “It’s probably just your sinuses” which me and my dad still talk about to this day. She went decades of her life taking Sudafed every morning truly believing she just had bad sinuses to find out years later she was actually having an allergic reaction the entire time due to Systemic Mastocitosis and really needed allergy meds and since she had bad sinus issues she seemed to think anything and almost everything that someone was experiencing from the lungs lungs up, weather it be a migraine, eye pain, sore throat, coughing, going horse, runny nose, bloody nose etc. it was just your sinuses which usually wasn't the case because soon after I would test positive for strep throat, oh the times I had strep throat. I had it so often that when I got it, I started not even noticing the throat pain believing my mom that it was my sinuses but more major like a sinus infection, to go to the doctor and find I had strep again and was desensitized to the pain. Sometimes my whole throat and mouth would be covered in blisters before the pain was bad enough just because I always had strep. Occasionally it was other things like my migraines growing up I now know were from Occipital neuralgia, craniocervical and atlantoaxial instability. So she didn't always take me seriously but I have to admit, after two decades of your life being told you're a hypochondriac and your symptoms are all in your head, I started to believe I was crazy myself and that my symptoms either weren't real or much less severe than they really were.

My dad being autistic never really dealt with my health stuff very much. He just isn't knowledgeable in it and has no clue what to do so my mom was the one who did that. Though she pawned off a lot of my more serious issues on it all being on my head she was always there for me. She took me to the hospital if it was needed and knew I didn't say I needed to go to the hospital unless I really felt like death. There have been several times where doctors have tried to say nothing is wrong and send me home where she has literally refused to take me home or argued with doctors but this was mostly after my diagnosis. I kind of wish she would have done this and pushed harder when I was a kid as she very much has, I guess you would call it brand loyalty but it went further than only grocery shopping at Meijer, literally fighting with me for years about leaving Verizon because in her mind Verizon was the only company that was any good, only allowing one person to cut her hair even if it meant following her to a new job, she had a doctor she liked and stayed with him for most of my life and denied he wasn't a good doctor after an incident in high school which caused me to switch. It's hard for her to move on even if there is no progress or things start to get worse so one thing I wish is she would have done a little more doctor shopping when I was a kid.

Doctor shopping is oftentimes frowned upon at and when most people hear of doctor shopping they tend to think of it as someone who goes from doctor to doctor looking for drugs or or to sign disability papers so they can get a free ride at life but when you have a rare disease doctor shopping means something totally different and can even be so vitally important your life and future depends on it. I had so many doctors who simply invalidated my symptoms saying I was making them up for attention or had a mental illness. Many of these doctors did nothing at all but the majority of them did the exact same tests over and over. If it was a doctor outside of the hospital they did a CBC, Chem. and a 7 (Basic Metabolic Panel) which always came back normal or borderline normal therefore they deemed me healthy, slapped a psychiatric disorder on me or simply said there's nothing wrong and sent me on my way,

If I went to the hospital, they would do the CBC, Chem. 7, accuse me of doing drugs or being pregnant or when I was really little bring in case managers making accusations of child abuse that wasn't happening, then do a drug test, pregnancy test and STD testing, say the CBC and Chem. 7 were normal or near normal, congratulate me on not being pregnant, having any illegal substances in my system or STD’s, slap a psychiatric disorder on me saying they tested everything and sent me home. When I got older, lucky me, I got two drug tests, the urinalysis drug test and when it came back normal, they would come in and draw my blood assuming if I was having seizures, passing out or having heart palpitations I must be on drugs and tampered with the urine test. I wish prior to my diagnosis my dad would have had a computer and learned to use it and both my parents would have done more research. I also wish they had advocated for me better and if one doctor said they didn't know or didn't believe me, they would have moved on to another doctor because if I could have gotten diagnosed sponsor it would have saved me some permanent damage to my body that I have now and possibly spared me some of the medical abuse and neglect though even with a diagnosis you can't avoid it, especially when it comes to the hospital.

Doctors and nurses are just as lazy as everyone else. It's just like every other job where 5% of the employees do 90% of the work and 90% of the employees do 5% of the work. The ones who actually take their jobs seriously are used to the max by their coworkers and like me when I was a nurse, didn’t believe the patients deserved to suffer or pay for their staffs laziness and neglect and those are the ones who try to play superman taking on their patients and everyone else's, answering call lights that aren't theirs, bringing food to others patients, making sure they are turned or their catheters have been emptied and generally running around like a chicken with their head cut off and I can always tell who falls into the 90% who uses the 5%, carrying less about the patient as long as they get a paycheck and the 5% who look like they are about to fall over yet still giving what they don't have to make sure the patient doesn't pay for their lazy staff member.

It's very easy to tell when you have spent a large portion of your life in doctors offices and hospitals and learn how rare it is to get one of the people in the 5% as your medical personnel and watching the lazy staff you have out your door at the nurses station sitting with other lazy staff in front a computer laughing at a YouTube video their watching, gossiping and talking badly about another patient loud enough for you to hear, playing pranks on each other, one nurse who drops her pants moons another in a room of 9-11 year old little boys, The nurse who has the pediatric patient who flat lines, on bad days, it's not uncommon for this to happen 20 times in one day and at their best, at the very least multiple times a week. The patient's vitals are linked to a pager the nurse carries so if the patient's heart stops the pager will alert them yet they consistently leave the pager in the patient's bed, on their night stand, at one of the computer kiosks where nurses chart, in another patients room, in the activity room or god knows where. I've found it in the bathroom on the toilet paper mount, in the linen closet on top of some towels, you name it then this same nurse who is buddy buddy with the nurse slips away with a coworker to the activity room or to the nurses lounge for you to later walk in on them playing cards and talking bad about patients or other staff. The two nurses going through a wedding magazine, looking at dresses and hear one say “That's my room”, and the other one say “Just ignore it and let Janett get it” Yes these are true stories down to the name used for the poor nurse who was running around like a chicken with her head cut off. All experiences I have seen either in the roll of the nurse and in the roll of the patient.

I was mostly around nurses and of course you don't see doctors very often but being in a chair I have been forced to use a bedpan before and seen examples similar to this with doctors as well. Once I was taken downstairs for a cardiac ultrasound, asking to go to the bathroom before they took me down because I had my call light on to go before transport even came in my room. They told me I would only be down there 10 or 15 minutes and asked me if I could wait. They took me down there to beds of people lining the halls and I had 18 people in front of me. Well, 15 minutes turned into 4 hours. I asked multiple times to go to the bathroom and they said they don't have a wheelchair down there and if I can't walk to the bathroom I have to hold it. I even asked if they could call up to my room and have my mom bring my chair down and as gross as it sounds, I even got desperate, breaking into a sweat I had to pee so bad and asked them to wheel my bed outside the bathroom and lower it as low as it goes, and I would put my blanket and pillows on the floor and slide out of my bed onto the floor myself and they can pull me on the blanket to the toilet or I could army crawl and use my arms to pull myself up onto the toilet. They still said no. I asked earlier on if they could take me back to my room or bring a wheelchair, still no.

Eventually I told one of the nurses that I had to pee for 3.5 hours, she saw that I was all sweaty and shaking. I said if they don’t get me somewhere to pee within the next few minutes they were going to have a huge mess to clean up. She grabbed two bedpans, a small one and a bit one, said you're tiny and I told her no, use the big one, I have EDS so my bladder can stretch really far and I can easily pee 22 oz. so she rolled me into a doctor's personal office, he was in there watching a movie on Netflix on his computer, yes a full blown Netflix movie. He tried to flip the screen back to an ultrasound image really quick when the nurse stormed in with me to make it look like that's what he was doing but he fumbled around a little bit and wasn't fast enough. The nurse told him to get out so he left and I had to pee in a bed pan in his office… then spent the next few weeks having to wear diapers for bladder leaks because they let me hold my bladder so long my bladder stretched out too much from hypermobility and it folded on top of itself resulting in bladder leaks until it shrink back down. Thank you OSU. Doctors can also be extremely lazy and I wish this was something my parents acknowledged more or took more notice of and fought more for me, looked more into my rights, such as being able to call a patient advocate or fire doctors and nurses which is something I had to find out myself.

I found out I had EDS before I was even diagnosed which is what made me fight so hard to find a doctor who has heard of it. I got desperate being sick and spent years learning how to find and read medical journals. When Facebook started having groups I started joining groups to ask questions, I started going to doctors and no longer letting them call the shots. If they said they wanted to do a Chem. 7 and CBC I would say that's fine if they want to but it will come back normal and start requesting tests that aren't considered standard and that are used to test for specific conditions rather than just evaluating me for acute conditions. I started walking in and telling doctors how I felt and when they either said well we will see you in a year to see if things change or wanting to run just the basic CBC and Chem. 7 I would start saying “Could you run a 24 hour Tryptase Urinalysis”, “Could you run a gastric emptying study”, “could you run a 24 hour urine for Cortisol levels”, “could you run an ELISA”, “would you write for a flexion/extension MRI with contrast”, “What about a rotational CT” “Everyone wants to do a colonoscopy but instead of ordering that can you order an Endoscopy this time?” “I would like to get an “ATCH Stem test”, “I know you have never heard of one but if I email you the information will you order a Tilt Table Test”, “You’re doing that Aortic Ultrasound without contrast? It’s supposed to be done with contrast. Could you call up to the doctor and ask him to add contrast before you start?”

Sure a lot of doctors would downright refuse. I have gone in 5 and 6 times asking for a test and being told no, only to go in the 7th time and be told “It will come back negative but if I order this will you quit bugging me about it?” for them to order it and the test to come back positive for the condition I wanted it ordered for then they treat me like total crap to the point the office staff is mentioning about how bad he is treating me to find out he’s doing it on purpose to try to get rid of me as a patient, probably because he realized what he said was really wrong and he made himself look bad. I have learned that if a doctor isn't willing to listen to move on and find someone who will. You need to find one who is willing to run the test or even just ask if I can email them some medical journals or information about the test or showing the importance of it or why I believe it needs done, willing to learn and if I can prove my case they will order it no problem.

I wish I had someone who started this for me as a child who did the research or helped me do the research to know what tests to ask for and to find a new doctor for me if one was either trying to slap a psychiatric label on me or acted interested but simply refused to run any tests so my care went stagnant. I still wish my parents knew the ins and outs of EDS like I do and really researched it because it makes me a little nervous when a squad is called and they are stumbling over my diagnosis or saying “She has oh, that one heart thing that makes it go really fast. Oh what's it called or only naming like two of my conditions. It also scares me that one day I will be rushed in internally bleeding since things like Aortic Dissection, Carotid Dissection, Mesenteric Dissection, Iliac Dissection or Femoral Dissection as well as uterine and bowel rupture are common and can happen very suddenly in EDS that my parents may not know the common areas for bleeds or know them from most to least common so they may not know where to look or may not realize its actually internal bleeding at all until it's too late.

With all of the craniocervical manifestations I also fear I will be sent in for respiratory distress a or something else emergent relating to my craniocervical instability and my family family won’t realize its from the instability and if they do they wont know where to find information to prove this to a doctor or who the five surgeons in the US are who can operate on it so I will either end up on life support until someone gives up on finding the root of the problem which I knew all along what it was but couldn't tell anyone and pulls the plug, unable to tell anyone what is happening and advocate for myself, die before they even get a chance to hook me up to life support or end up under the knife of a surgeon who has absolutely no clue how to do the surgery I need and what modifications and special precautions need to be made for someone with EDS and I will die on the table like a few others I know or the last scenario, where I will have the surgery, wake up from it and it will be so botched that I’m one of the ones walking around with broken hardware, screws drilled into my spinal cord and paralyzed from the neck down, in more pain than I am now and the damage is too extensive to be repaired.

It's so important for the patient and their family to have very extensive knowledge of the condition since it's very complex and there are a lot of things that can go wrong at any given time. It's important to know what symptoms you are experiencing at any given time are associated with or at least the ability to know what medical emergencies are more common in EDS patients and the ability to narrow it down to 2 or 3 possibilities because most medical professionals don't learn about EDS or learn very little.

Just to put the complexity of the condition into perspective let's say you wanted to buy a book that taught you about diabetes and it was 500 pages long but you wanted to also buy a book on Ehlers Danlos Syndrome and be just as knowledgeable by the time you finish about EDS as you are when you finish the book on diabetes, there are about 15 common comorbidities of diabetes and about 250 common comorbidities of EDS. Diabetes can affect a handful of other organ systems however EDS effects every single part of the body so if you wanted to be just as knowledgeable about EDS as you would about Diabetes after reading a 500 page book about it and its comorbidities, given they were only allowed to give you more basic knowledge of comorbidities, say 10-15 pages per comorbidity, depending on its complexity and the rest on Diabetes you would have to read about 4,573 pages and that's only for hypermobile form of EDS which is broken down into trifecta so I gave 15 pages to each comorbidity of diabetes, were going to assume this book is on type 1 diabetes given there are 2 types of diabetes and 13+ types of EDS so after giving 15 pages to the comorbidities the remaining was for the condition itself. Since hypermobile is usually seen in the trifecta I had to multiple the remaining pages by three then add 15 pages for each comorbidity to get the total number of pages and even this is a very rough estimate since we need to consider how many organ systems are involved in each and how complex the comorbidity.

In most medical textbooks EDS is not listed at all or is only condensed into a few paragraphs at the very most while learning about collagen and connective tissue so if anyone in the medical field learns about it at all its very very little, so little that they can easily forget those one or two paragraphs they read our of the thousands of pages they read during medical school.

Now I know it sounds like I’m talking bad about my parents but that's not the case at all. My parents are incredible and so much better with my condition than a lot of others. They may not know the ins and outs of this but they know I am not faking anything, I’m not exaggerating, they know, especially with my PTSD, that if I go to the hospital I am pretty darn sick and know when to make me go if I continue refusing to go to the hospital. They don't want to talk about it or admit it so will often downplay the fact that death can happen very easily and at any time and I am not going to live an average life expectancy. They may avoid talking about it or downplay it but I know they know just how serious this is but they already lost their son and don't want to lose their daughter so avoid the topic.

They refused to let me be sent to a nursing home or long term care facility when we were told I could no longer live alone and brought me into their house. They help me with a lot of my needs. Heck, my mom has given me baths as an adult because I have been too sick to do so. My mom helped with training Maggie to be a service animal, making sure I made it to all of her classes, helping me teach tasks I struggled with due to being in a chair, using her commands so she gets practice and doesn’t forget what she has learned. My dad not so much. He's a softie that has let every animal we have ever owned, own him. If it were up to him to do the training, Maggie probably wouldn't even be house broken yet if I’m totally honest lol. They have taken on so much with me and though I appreciate it more than they could ever know I also feel terrible guilt surrounding all that they do.

They have to drive me everywhere. The safety of public transportation in America for people on Medicare is downright deplorable. Only one agency contracted by Medicare has seat belts for wheelchair users, most of the vans are from the 90s and not up to code. They are actually so old that someone who is disabled isn't even allowed to buy one for personal at the age the ones the state provides transportation in here in Ohio because they don't meet the safety requirements even for the minimum amount of insurance yet a cab company is allowed to purchase and insure them to transport the disabled in. Its one of those things where it's illegal for the members of the state but the rule doesn't apply to the government kind of things. Their extremely dangerous, I have been in ones in my 425 lb. wheelchair, with my112 lb. self my 17 lb. service dog in her one or two pounds of gear and a backpack on the back of my chair with my meds and maybe some food and a drink in it to take to a doctors appointment so maybe another 10 or so lbs. of weight, riding in a van and staring through the rust holes in the floor looking at t the rusty parts under the van and the pavement of the highway underneath me, hoping to god the floor doesn't give way to all of this weight so I don't fall through.

I've been in two accidents with drivers, most of these drivers smell of mamajuana when they come and one of them had a rink that had a little tiny canister on it (If I remember I’ll post a picture I secretly took of it” at a stop light he opened the little can, poured white powder into his hand, used his other finger to brush it into a pile in his palm and then snorted it up his nose. I have ridden in vans someone threw up all over, one that the door to the wheelchair lift had 3 of its 4 hinges rusted all the way through so when the driver opened the door he had to hold it with one hand because it was hanging on there sideways like a broken cabinet door with only the bottom hinge still attached, got me up the lift then shut the door, came inside and used a bungie, hooking it in a hole that it looked like was drilled into the door and then a natural hole where the raised roof of the van and the bottom of the van attaches in a hole that didn't have a bolt. It was a really windy day and on the way back, we were driving down my road, a gust of wind blew, the bungee snapped, almost hitting me in the face, the door flew open and the last hinge snapped with the door flying off and into the gutter along the side of the road. We were right down the road from my house and the driver casually said “I'll go ahead and drop you off first and grab that on my way back.” like that kind of thing happens every day or something.

I have had a driver ask to stop at a gas station and I told him that was fine thinking he needed gas. He pulled up beside the end pump and instead of getting gas we sat there for about 3 minutes when another guy in a red truck pulled up along the side of the building. The driver got out of the van and went around the side of the building where the truck was. All I could see was the back of the truck sticking, about a minute later my driver came out from behind the truck, sticking something in his front pocket, the truck left and then we left. I was hoping to god it was just his brother or roommate or someone giving him some money for lunch or something but for real, a wallet goes in the back pocket and what he had was smaller than a wallet since you couldn't see what was in his hand and most people carry plastic these days so I’m pretty sure I was just hoping it was lunch money out of wishful thinking because with along the side of the building out of view of most of the public and all it seemed pretty sketchy to me.

Anyhow my parents do a lot, they drive me to appointments when they can to try to keep me out of the appalling care of the state, they let me live with them, they provide a lot of care, cooking, doing my laundry, vacuuming and doing a lot of the things that I feel like I should be doing for them at their age. It really does make me feel extremely guilty and like a terrible person. They help with Maggie taking her out just to help me out even though I can usually take her out myself unless it's icy or snowy since she basically takes herself out lol. I can go in the yard with her in the late spring to early fall when it's warm and dry out so my power chair won't sink into the mud. They will pick up food at the store or meds for me they do a lot and with my mom having EDS too, I have seen my mom go down hill a lot since her botched surgery that left her on life support so I hate asking either of them to do anything or for help. My dad is almost 66 and my mom, though 8 years younger gets around worse than my dad does so it's really hard to need so much care and feel like I put it on them, especially when my home health aid was taken away when the pandemic started but of course most of the home health aids I had were so English incompetent's and fresh out of countries where they didn't have stoves or washers and dryers and what not, living in huts that they don't know how to use modern appliances or understand me when I relay my needs which actually made things oftentimes harder with a home health and than without one as my parents were always coming home to fixing messes the aids made too.

With all that being said, here is my advice to parents of kids with suspected EDS. Get them diagnosed as early on as possible. Do lots of research, I know it's a pain and may be a lot of work but the more you know about the condition the better. Don't stop there, learn your rights and laws around medical care and disability rights as well as techniques for advocating for your child. Get them on a 504 plan at their school so they can get the accommodations they need. Learning disabilities aren’t uncommon and the prevalence of high functioning autism is incredibly high in EDS patients so if you suspect they may have a learning disability fight for a diagnosis and have that added to the 504 plan. A 504 plan isn't just for learning disabilities, it can be for physical disabilities as well.

You don't want to caudle you child of course and many don't have a lot of severe symptoms as kids but make sure the plan accommodates for things such as food allergies, if they have POTS or low blood sugar make sure they have it in their plan to be able to bring their own food, be able to eat in class. I know on mine, I was allowed to use the teachers lounge microwave during lunch to heat food brought from home and they allowed me to use the bathroom in the nurse's office if I needed it. You can ask for things like that they not be punished for arriving to class after the bell within reason, especially if the school is large and they may have several classes on the opposite side of the building as their locker so they aren't forced to carry books for multiple classes or for them to have two sets of books, one that they keep at home and one that is in each classroom they attend class in so they aren't having to carry heavy books around or teased for having a backpack on wheels. This is one thing I would have really liked to have written into my IEP as a kid if I had been lucky enough to get diagnosed sooner. If they are more symptomatic, more prone to injury or have VEDS they may have more needs.

Again you don't want to be a helicopter parent and want them to do as much stuff for themselves as it is safe for them to do and want them to have all the experiences other children do but if gym is an issue you can request they don't participate in high contact sports or even have it put into their IEP that they can swap gym out for another elective like music, art or home economics class or in the lower grades where they may not have options for alternative electives you can ask if they have any teachers or aids available during that time frame who can create somewhat of a study hall for the younger child, helping them with their homework, studying for tests, able to sit there and let the child read a book to them and help them with any words they struggle with or even just play some educational games with them or let them play an educational game on the computer.

Some schools also offer physical therapy for kids, especially the ones with developmental delays who may not be mainstreamed and the therapy replaces gym for them. Even if your child has cognitive abilities cohesive with their age, you could see if they are allowed to join therapy with those children. With being able to do so much online now, I have heard of some requesting that on their bad days the teachers live stream them into their classroom so they can participate in class from home when needed or if the child needs a surgery or has a doctors appointment they can live stream in instead of going to school or live stream in part of the day before or after an appointment, going to school the other half of the time. You may also request extended time on homework like instead of turning it all in the next day, ask that they have the week, for example, they have to have all homework turned in from that week by the following Monday so say they are having a really bad day Wednesday and in a lot of pain or very fatigued and can only get their math homework done but not their English, science and history. They will be able to work on that homework throughout the week possibly adding the English to their Thursday homework, the science to their Friday homework and catch up on the history over the weekend so they at least aren’t failing or losing credit on homework if there are a few days a month where they are really struggling or not feeling well.

Another reason I suggest learning everything you can and really fighting for a diagnosis early is because if you work you are more likely to have a PPO insurance plan which covers a lot more than Medicare. You can get some things that Medicare won't cover out of the way in case the child has a possibility of being disabled as an adult. Genetic testing is one thing you really want to try to get done as a child as hospitals in some states like my own will not do genetic testing for EDS on adults unless they have another family member who has tested positive for one of the rarer forms of EDS.

You don't want to be in the situation I am where you have four doctors sure you have Vascular form and have been fighting to get you tested, your brother died before he had any testing, your uncle had an aortic aneurysm and died never getting diagnosed, you were referred to a geneticist who won't test you because you are under 21 and no one in you family has tested positive on genetic testing for VEDS, your mom is referred to genetic testing after coming out of a coma and being on life support after a major organ rupture that almost took her life and turned away for the same reason and your grandfather is referred and turned away leaving multiple members of the family suspected of having EDS but no one able to be tested because we are all over the age of 21 and I can’t have children nor would I want to because of the fear of passing this down to them there will not be anyone under the age of 21 to get tested in order for us to get tested so your stuck without a diagnosis. This is why you need at least a hypermobile diagnosis so you have time to fight for the genetic testing to ensure it isn’t a more serious type, especially if a doctor suspects it.

If your child has severe enough symptoms you can also get them listed as disabled under the state in order to get extra financial aid to cover medical needs not covered or special equipment like gait trainers or possibly a power chair for school and a manual chair at home It can cover the cost of tutoring and several other things insurance may not cover. If they grow up and work for so many years and end up getting worse, needing to go onto SSDI their SSDI it will also make it so that their payout will be higher if its on record that they were disabled before the age of 18.

Having a child with a complex health condition, especially when the condition is rare can be a lot of work and very stressful at times. Definitely learn everything you can and fight for a diagnosis for your child. If you suspect you may have the condition fight for a diagnosis for yourself as well. The sooner anyone starts treatment and can get regular screenings such as those for aortic dissection the more they can prevent damage early on and also prevent life threatening complications so that’s my advice to any parent out there.

#MyEDSChallenge #MyHSDChallenge

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