sleepymenheragirl
I Want To Stay Asleep
Danielle/26/female
This blog is where I vent about my life with narcolepsy, PTSD, and other health issues I face.
CW: There may be traumacore featured on this blog
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I'm so, so, so tired, so fatigued. So sleepy.
I can't tell if it's side effects from the Keppra or if I'm having narcolepsy flares lately.
I just hope I'll be okay for the fashion show I'll model at in 3 days. Days like this are so hard. I guess I have to save my spoons until the big day.
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When a chronically ill or disabled person gets their lab tests back as “normal” or all clear, we aren’t sad because we WANT to be sick.
We’re sad because we *know* there’s something wrong with us, yet the scans still stay clear.
Before you kill the monster you gotta know its name.
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STOP. moment of gratitude for those precious times of breathing from your nostrils when you don't have a stuffy nose
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Good news: Keppra seems to be working, I think
Bad news: Having constant nightmares recently, and I think it's messing with my sleep. But it's either that of seizures I guess
#seizure disorder#tw seizure mention#epilepsy#actuallydisabled#actually epileptic#chronic illness#chronically ill
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in case you haven't seen it yet, here's the menhera 101 article by HoshiCandy from Kei Club Issue 3. not sure if i'll post the other menhera related articles from this issue or not, so consider checking the link in source if you're interested.
i'm also leaving a text transcription under the cut for anyone that may benefit from that
Menhera 101
Menhera fashion has quickly been gaining popularity worldwide! This fast growth has come with its fair share of misunderstandings about the community and style. Menhera artist and designer HoshiCandy is here with a lesson on menhera’s origins, history, and basics. Find more of her work on the pages before and after this article!
What is Menhera?
“Menhera” can be thought of as “a person who seeks mental wellbeing”.
The word “Menhera” was born in Japan in 2001, on the “Mental Health” board of anonymous forum 2ch, where users discussed their wellbeing. The users of this board were named “Mental Healthers” which was shortened to “Menhera”.
The Menhera community covers anything that might cause one mental suffering, such as: physical illness or disability, depression, anxiety, eating disorders, bullying, hyper-sexuality, sexism, homophobia, etc. Importantly, there is no need for a formal diagnosis, as the focus is on how you feel, and that you want to feel better.
It is difficult to talk about these topics in Japanese society without being heavily stigmatized. Menhera is a community to speak safely without that stigma. Of course, this stigma and need for community when it comes to one’s mental wellbeing is not limited to Japan, and that is why menhera has grown in the west as well.
Since the creation of the word in 2001, there have been several manga published with “Menhera” in the title, many Visual Kei songs about it, Menhera idol groups, and several menhera fashion brands.
However, an unfortunate addition to all this has been the discovery of the word in mainstream media...
Just as the topic of illness is heavily stigmatized in Japanese society, the word “Menhera” itself became quickly stigmatized and stereotyped as “an attention seeking, troublesome person” or “an overly attached girlfriend” (aka “yandere”). If you were to speak to a Japanese person about “Menhera”, this would most likely be what they would think you meant. This stereotype tends to be referred to as “Menhera Kei” in Japanese which is why we avoid the use of “kei” for Menhera in particular.
Despite all this, the true menhera community has continued to grow.
Menhera Motifs
Artists in the Menhera community created many works of “Vent Art” art that expresses their feelings and suffering. When this art was printed onto clothing, Menhera fashion was born.
These are some themes you will commonly see in Menhera:
Medication
Suicide
Self-harm
Hospitals
Sex and BDSM
Social Media Addiction
Heartbreak
Wearing Menhera art printed on clothing serves as a way of literally wearing one’s feelings on one’s sleeves. It turns invisible suffering visible, and fights against the stigma driven silence. This means that Menhera fashion is highly confrontational, with graphic depictions of illness symptoms. Although the onlooker may feel discomfort, the Menhera style says “this is my true reality, don’t pretend it doesn’t exist!”
Depending on the feelings of the wearer, Menhera fashion also says “although I am sick, I can still be ‘kawaii’” or “although I appear ‘kawaii’, on the inside I am suffering”.
Turning the invisible visible, forcing the silence to be broken, and challenging kawaii culture, these are the goals of Menhera fashion.
The Menhera Silhouette
Carefully avoiding a highly theatrical or OTT (over-the-top) look is important for maintaining the integrity of the goals of menhera. Menhera is a very casual style, with few accessories and light makeup. The key is for a coord to centre on Menhera imagery, whether vent art or text-focused designs, printed onto clothing.
Be careful not to dress up as the characters depicted in vent art, who are often costumey, gory, and OTT.
Menhera Coord checklist:
Printed Menhera art
Byojaku/Minimal makeup
Not OTT/Few accessories
Flat Shoes
[optional] Oversized top
[optional] Hime bangs
[optional] twintails
Colors can vary: a pastel yume look, or a gothic yami look, both are fine!
The makeup style is called “Byojaku” meaning “sickly/weak”. Reddish colors are applied to areas around the eyes to give the impression of crying or illness. The rest of the face is kept plain without much color.
A Note of Caution
The Menhera community is about healing, and seeking recovery and wellbeing. It advocates getting help, medication, therapy, and receiving support through your recovery journey.
True Menhera never encourages or enables harmful behaviors, and never glorifies them. Menhera fashion is an alternative way of expressing your suffering without self-harm. Menhera fashion empowers the individual through their recovery, but does not empower harmful behaviors.
There are some, sometimes labeled by the community as “Wannabe Menhera”, who mistook the meaning of “menhera” after seeing its rise in popularity, as it being trendy to fake mental illness. They engage in behaviors such as posting self-harm photos (real or faked) to social media with the tag #menhera, and other attention-seeking behaviors.
While this is the opposite of what the Menhera community stands for, is harmful to the unfortunate viewers of these photos, and creates further stigma against the community...it cannot be ignored that these “Wannabe Menhera”, too, need help and healing.
The Menhera fashion movement is to help you feel comfortable, unashamed, and kawaii in your skin, scars and all. It is NOT for encouraging people to create new scars “for the aesthetic”.
If you are struggling with mental or physical suffering, thoughts, or behaviors that cause harm to yourself or others, please seek help. If you do not believe you deserve help, you do, please seek help. If you believe you are faking it, you likely are not, your feelings are valid, please seek help.
Don’t have access to therapy?
We found a comprehensive list of suicide prevention hotlines at https://ibpf.org/resource/list-international-suicide-hotlines [link no longer working]
There are also free and affordable counseling services online like Better Help and Pride Counseling! Look online to find what option could work for you!
Alternatives to Menhera
After reading all this you may be thinking “the Menhera community sounds good but all the fashion is too restrictive for me” and if so, you’re not alone! But the good news is that you don’t have to wear Menhera fashion to be in the Menhera community.
Look up any of these alternative styles online for examples and more information:
Yamikawaii (“Sickly-cute”) is essentially the aesthetic of Menhera without the activism, a corrupted dark kawaii. Unfortunately the word was trademarked and now suffers from copyright takedowns.
Yumekawaii (“Dreamy-cute”) an aesthetic evolved from Fairy kei to describe everything pastel and kawaii, but with a slight edge, described as “fairytales with poison”.
Marekawaii (“Nightmare-cute”) created as an alternative to Yamikawaii to avoid the copyright issues, and as a counterpart to Yumekawaii. Marekawaii is specifically defined as being open to your own interpretation and style.
Medikawaii (“Medical-cute”) a pastel kawaii aesthetic focusing only on medical motifs, such as medicine and hospitals.
Gurokawaii (“Grotesque-cute”) mixes frightening and disturbing imagery with kawaii. Kyary Pamyu Pamyu helped popularize it.
Iryouu Kei (“Medical Kei”) a Visual Kei substyle with lots of gore and hospital theming, very OTT and theatrical, such as dressing like a nightmare nurse.
Living Doll artists see themselves and their bodies as a canvas to create art and express themselves, often with intricate makeup and body painting. This is a good one to look at if you’re into heavy artistic makeup.
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Being poor and having arfid is a FUCKING NIGHTMARE btw
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For those who take Keppra, how long did it take you to see results? I started it about 3 days ago, but I'm not sure it's doing anything yet.
Doctor thinks I may have PNES and prescribed me Keppra. I'm really worried about this diagnosis bc I'm aware of how much stigma is around it :/
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At the hospital today. Had seizures back to back. I just want this needle out of my arm already. I want to sleep. Will update once I'm home
#epilepsy#chronically ill#actually epileptic#actuallydisabled#actually disabled#chronic illness#tw hospital stay#i just want to go home
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I'm still pissed no one ever told me I was autistic as a child. I had to find out in my early 20s, and I'm just now learning to be kind to my a elf because of it.
It always makes me wonder if life would have been different had ai known then. 26 now and I'm still struggling with hating myself for not being like everyone else, wishing to be 'normal'
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NOVEMBER IS EPILEPSY AWARENESS MONTH 💜 ⁺˚⋆｡°
Knowing how to help someone during a seizure can make a difference and save a life. While there are many different types of seizures, people who experience seizures may be confused, not aware of what is going on, or unconscious. A person could get hurt during a seizure, a seizure could last too long, or the seizures could cluster.
We, as people with epilepsy, learn to track seizures, manage our triggers, control our diets, identify seizure auras and answer all kind of questions, but having people around us who know how to react in the event of a seizure always helps and we appreciate it with our everything (I have had seizures at so many random places, but only on two occasions the people around me knew how to react, once at a festival and the other in the subway, and i'll be forever grateful with those people who helped a total stranger, took me to safety and waited with me for my mom)
For most seizures, basic seizure first aid is all that is needed, the steps are simple - Stay. Safe. Side - anyone can do them.
STAY with the person until they are awake and alert after the seizure.
Remain calm – it will help others stay calm too.
Check for a medical ID. (If you don't have one, try getting one it safe my life once)
Time the seizure from beginning to the end, that will help you determine if emergency help is needed.
Keep the person SAFE.
Move or guide away from harmful or sharp objects.
If a person is wandering or confused, help steer them clear of dangerous situations.
Encourage people to step back and give the person some room.
Ask someone to stay nearby in case further help is needed.
Turn the person onto their SIDE if they are not awake and aware
Make the person as comfortable as possible.
Loosen tight clothes around neck.
If they are aware, help them sit down in a safe place.
If they are having a convulsive seizure or tonic-clonic seizure:
- Lay them down on the floor, put something small and soft under the head.
- Turn them on their side with their mouth pointing toward the ground.
- Don't put any objects into a person's mouth.
- Do not restrain the movements, trying to stop movements or forcibly hold person down doesn’t stop a seizure, it lead to injuries and make the person more confused, agitated, or aggressive.
During a convulsion, it may look like the person has stopped breathing. This happens when the chest muscles tighten during the tonic phase of a seizure. As this part of a seizure ends, the muscles will relax and breathing will resume normally. Rescue breathing is generally not needed.
How can I tell if a person is okay after a seizure?
Ask simple questions to see if the person knows their name, where they are, what time of day it is, and what happened. If the person cannot answer these questions, tell them the information and offer reassurance that they are okay. This may help decrease confusion and orient them to their surroundings.
Don’t leave anyone alone after a seizure until:
- They are able to answer the four W’s: who, what, when, and where
- They can talk or communicate in some way.
- They are breathing normally.
- You are able to wake them up if they fall asleep after a seizure.
(I'll add a personal one, don't try to give them meds in that moment, once the seizure has passed the brain recovers at its own pace and all brains are different, theres no med that puts you back on track in minutes, when I was in college they always asked me if I had meds with me that they could give me - and they were not even asking for my anti-epileptics)
Should I tell a person who had a seizure what happened?
If the person’s not remembering things well, write down what happened for them. They can then share this with their doctor, nurse, family, or others involved in their epilepsy care. This information can help the person and their healthcare providers to determine the type of seizures, whether treatment is working, and the need for changes. (My mom used to tape them, so my doctor knew exactly what happened and adjust my medication)
When to Call for Emergency Help
Seizure lasts longer than 5 minutes
Repeated seizures
Difficulty breathing
Seizure occurs in water
Person is injured, pregnant, or sick
Person does not return to their usual state
First time seizure
The person asks for medical help
Epilepsy is the most common neurological disorder and you may need to help someone someday. Understanding the importance of seizure preparedness and learning what you can and can't do is the best way to help during what are scary situations for all involved.
Epilepsy Awareness Month is an effort to raise awareness and change the conversation around the epilepsies, seizures, and side effects, as well as to improve and save lives through care, advocacy, education and support - we must increase public knowledge about first aid to change the way people think about the epilepsies and seizures because - even today - the general public say they would be nervous around or even get involved with a person with epilepsy.
TLE with Focal to Bilateral Tonic-clonic Seizures and PNES is the diagnosis and at first I was embarrassed but I’ve learned to live with it. Epilepsy did shape who I am, but it isn't the only thing that makes me who I am.
_____
General first aid for seizures. Epilepsy Foundation. https://www.epilepsy.com/recognition/seizure-first-aid
Seizure first aid training and certification. Epilepsy Foundation. https://www.epilepsy.com/recognition/first-aid-resources
Help after a seizure. Epilepsy Foundation. https://www.epilepsy.com/recognition/help-after-seizure
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I don't know what's worse - seizures themselves or the post ictal phase when I'm recovering.
#seizure mention#epilepsy#temporal lobe epilepsy#epilepsy problems#chronically ill#narcolepsy#narcolepsy with cataplexy#actually epileptic#actuallydisabled
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i am 100% not joking when i say flashing lights above a certain frame rate should be illegal to have in movies they are a very genuine health risk
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Good news: I found one of my seizure triggers
Bad news: I had a seizure
Trigger I found is sleep deprivation. I'm not surprised - as if narcolepsy wasn't bad enough, now I have this to worry about too. I don't even know if I'll get to see my neurologist on time to get the letter I need to be exempt from jury duty. I just know I'm going to have sleep attacks if I get selected. But I can't afford any doctors rn 🫠
#chronically ill#narcolepsy#narcolepsy with cataplexy#chronic illness#epilepsy#temporal lobe epilepsy#seizure mention#seizures
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Everyone deserves the opportunity to dress their best. That’s why I’m so glad to be able to share Tommy Hilfiger’s innovative #TommyAdaptive collection with you. #TommyPartner
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I can't tell if I'm having on and off auras today or if I just feel funny, and I'm really, really worried I'm gonna have a Big One (aka tonic clonic) today.
I'm just in bed right now hoping I don't have a tonic clonic, because I feel like I've had more auras than usual this past week. I can't afford to go to the hospital anytime soon.
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I'm fucking 25 years old. I should be over all the bullying I went through by now, right? That's what everyone says, right?
So why aren't I? Why am I still afraid of people being mean to me again?
Is it because the alter who holds the memories and pain from back then still hasn't healed fully? Because the adults around me back then dismissed me every time and I never got to properly address things in therapy?
I can hardly remember it anyway, I only have a vague idea of what happened. I feel so stupid for still being afraid of verbal abuse at my grown age.
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I don't know what to do anymore. I'm having practically textbook symptoms of temporal lobe epilepsy as of recently, especially intense deja vu and sometimes I'll get random 'dream flashbacks' where a task reminds me of an old dream from years ago, but there's no reason for it to remind me of the dream, and it's always such a random scene too.
I can't afford a doctor though, and the moment I mentioned no longer having insurance to my neurologists office the last time the lady on the phone was quick to hang up on me.
Guess I just gotta ride things out for now, until I can afford to get the help I need. Sometimes I regret leaving my call center job, but if id stayed the stress would surely have killed me. I overworked myself too much, especially considering how severe my Narcolepsy was during my time there. I'm amazed I was even going to work like that in the first place.
#epilepsy#temporal lobe epilepsy#narcolepsy with cataplexy#narcolepsy#actually disabled#chronic illness#chronically ill
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