Narcolepsy is like a vehicle’s failing or slipping transmission. When your car’s transmission is working well... Every gear follows a specific number of rotations per minute and it’s in bad shape when one can’t lock in the rpm without the gears not locking in place. You can only start at a school zone in gear 1-2. Gears 3 and 4 for 30 ,40 rpm as you need more speed.
The origin of Narcolepsy in where One very small part of our hypothalamus of those living with type one Narcolepsy with Cataplexy is housed within the hypothalamus, part of our limbic system controlling our most basic needs and drive for survival, reproduction. The immune system attacks the ventrolateral preoptic nucleus (VLPO or VLPN), obliterating the neurons secreting Hypocretin (Orexin) the chemical responsible for controlling our sleep-wake cycles. Once this happens (autoimmune response) those neurons are gone.
The brain with Narcolepsy no longer progresses from a well evolved circadian Rhythm seamlessly changing gears from the hypnagogic Stage 1, stage 2, to the deeply tissue healing stages 3 and 4, with gradually increasing amounts of REM sleep where most of our brains long term memory and purging of nonessential memories are processing. Our Dreams happen mostly during this stage of sleep, which strongly resembles the brain waves of being awake.
Once hypocretin is gone, we become highly impaired in staying awake, breaking our sleep/ wake cycles and order. Always my brain wants to go from gear 1st to 4th gear, leaving me in a limbo of being awake and Rem paralysis simultaneously. Hypnagogic Hallucinations and Sleep Paralysis- you get the same helpless horrible feeling of danger as a person stranded in a clunker with a failing transmission when You onset with Narcolepsy.
As an invisible illness advocate, suffering with type 1 Narcolepsy with Cataplexy, chronic pain due to fibromyalgia and rheumatoid arthritis plus diabetes and mitral valve prolapse I’m that clunker, I look good outside but my transmission is in disrepair...a cars transmission can be replaced. My hypocretin cells can’t be replaced. So what then? My life, your lives are wrought with hard knocks. You are so strong, you care. You matter, your a Superhero.
Everyone knows the dreaded choices we made when your transmission broke, but I feel like a big loser... no one can take Narcolepsy away, not yet. How easy do Car owners have options to repair the transmission, whereas my hypocretin neurons are obliterated, and not growing back.
Each day I have no idea what gear I’ll have to battle- 2 jumping to Rem, etc. Will I need to be able to see outdoors, quoting inspiration? If the public views Narcolepsy as not as serious, but lazy, are inspired by our Narcolepsy stories, advocacy, friendship, we can Do Sleep Justice together. Www.napcave.com .
It bothered me that the media and even society doesn’t give persons with disabilities/invisible chronic illnesses enough respect/ credit. That sleepiness is lazy, we’re faking it, exaggerating our plights. More than anything it’s all about helping people with sleeping and other invisible and visible disorders feel like they should, as they deal with pain levels so high while smiling, tear stained faces, with the fear of Cataplexy and social ignorance anywhere, this coping takes a True Superhero kind of strength, our hearts empathize deeply with anyone suffering.
My super hero name is Sleepy American. The NapCave is a very magical place where all Sleepy American Heroes recharge our superpowers with naps. Naps are magical ;)
Batman is badass and he has undiagnosed Narcolepsy with Cataplexy. Why so serious Batman? Cataplexy. The Joker is Batman’s bestie Batman loves darkness and hangs in his underground NapCave where he sleeps each day.
There are shirts that are cool like Nap Queen, but I wanted to raise awareness by getting others to start the ‘Narcolepsy, fibromyalgia ‘ talk - asking me about my shirt, dress - or compliment. I wanted my fellow spoonies to realize and remind ourselves how strong and Super we are. It never fails to inspire how many people really want to know more about invisible illnesses, Disabilities. #nncon2019
Totally wearing this #imwithsleepy skater dress @narcolepsynetwork to #nnconference2019 @napcavezzz is is please to hold our new self-esteem and social attitude campaign #dosleepjustice #sleepyAmericanheroes #defystigma booth free photography shoot of you dressed with our fun props and background as a sleepy superhero. See and feel just as you should- you are super hero living with a often misconceptioned misunderstood disorder #Narcolepsy I want you to feel like a superhero! Free pics taken emailed to you. Compliments of NapCave.com and many prize raffles too Tba later. Together we will conquer stigma! Rachel, SleepyAmerican #narcolepsyawareness #narcolepsynotalone @napcavezzz @sleepyamericansuperhero the NapCave is my small biz, created dedicated to defying and changing stigma and negative attitudes towards persons living with invisible illnesses/disabilities. You are a superhero. Shop NapCave- we are #notyourbasicstitch #nnconference2019 #areyouasleepheroorasleepzero
September 22nd is Many things to me: my Daddy's birthday, my MIL's Birthday, and NOW World Narcolepsy Day! This is our Inaugural Celebration of Narcolepsy Awareness! Please be a Sleep Hero with The NapCave and 25 Narcolepsy Organizations as we celebrate our momentous Inaugural Event! #balloons #wonderwoman #worldnarcolepsyday #narcolepsylife #narcolepsyawareness #september222019 #international next #interstellar #napcave #sleepyamerican #sleephero
Narcolepsy is like a vehicles’s failing or slipping transmission. When your car’s transmission is working well... Every gear follows a specific number of rotations per minute and it’s in bad shape when one can’t lock in the rpm without the gears not locking in place. You can only start at a school zone in gear 1-2. Gears 3 and 4 for 30 ,40rpm as you need more speed.
The origin of Narcolepsy in where One very small part of our hypothalamus of those living with type one Narcolepsy with Cataplexy is housed within the hypothalamus, part of our limbic system controlling our most basic needs and drive for survival, reproduction. The immune system attacks the ventrolateral preoptic nucleus (VLPO or VLPN), obliterating the neurons secreting Hypocretin (Orexin) the chemical responsible for controlling our sleep-wake cycles. Once this happens (autoimmune response) those neurons are gone.
The brain with Narcolepsy no longer progresses from a well evolved circadian Rhythm seamlessly changing gears from the hypnagogic Stage 1, stage 2, to the deeply tissue healing stages 3 and 4, with gradually increasing amounts of REM sleep where most of our brains long term memory and purging of nonessential memories are processing. Our Dreams happen mostly during this stage of sleep, which strongly resembles the brain waves of being awake.
Once hypocretin is gone, we become highly impaired in staying awake, breaking our sleep/ wake cycles and order. Always my brain wants to go from gear 1st to 4th gear, leaving me in a limbo of being awake and Rem paralysis simultaneously. Hypnagogic Hallucinations and Sleep Paralysis- you get the same helpless horrible feeling of danger as a person stranded in a clunker with a failing transmission when You onset with Narcolepsy.
As an invisible illness advocate, suffering with type 1 Narcolepsy with Cataplexy, chronic pain due to fibromyalgia and rheumatoid arthritis plus diabetes and mitral valve prolapse I’m that clunker, I look good outside but my transmission is in disrepair...a cars transmission can be replaced. My hypocretin cells can’t be replaced. So what then? My life, your lives are wrought with hard knocks. You are so strong, you care. You matter, your a Superhero.
Everyone knows the dreaded choices we made when your transmission broke, but I feel like a big loser... no one can take Narcolepsy away, not yet. How easy do Car owners have options to repair the transmission, whereas my hypocretin neurons are obliterated, and not growing back.
Each day I have no idea what gear I’ll have to battle- 2 jumping to Rem, etc. Will I need to be able to see outdoors, quoting inspiration? If the public views Narcolepsy as not as serious, but lazy, are inspired by our Narcolepsy stories, advocacy, friendship, we can Do Sleep Justice together. Www.napcave.com .
It bothered me that the media and even society doesn’t give persons with disabilities/invisible chronic illnesses enough respect/ credit. That sleepiness is lazy, we’re faking it, exaggerating our plights. More than anything it’s all about helping people with sleeping and other invisible and visible disorders feel like they should, as they deal with pain levels so high while smiling, tear stained faces, with the fear of Cataplexy and social ignorance anywhere, this coping takes a True Superhero kind of strength, our hearts empathize deeply with anyone suffering.
My superhero name is Sleepy American. The NapCave is a very magical place where all Sleepy American Heroes recharge our superpowers with naps. Naps are magical ;)
Batman is badass and he has undiagnosed Narcolepsy with Cataplexy. Why so serious Batman? Cataplexy. The Joker is Batman’s bestie Batman loves darkness and hangs in his underground NapCave where he sleeps each day.
There are shirts that are cool like Nap Queen, but I wanted to raise awareness by getting others to start the ‘Narcolepsy, fibromyalgia ‘ talk - asking me about my shirt, dress - or compliment. I wanted my fellow spoonies to realize and remind ourselves how strong and Super we are. It never fails to inspire how many people really want to know more about invisible illnesses, Disabilities. #nncon2019
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