Narcolepsy - Tumblr Posts
this is me but in school. uhhh rant under the cut lol
I've literally passed out at my desk WHILE TEACHERS WERE TRYING TO TEACH and most of the time they just go "get up, it's not my fault you don't sleep good."
buddy that isn't how cataplexy narcolepsy fucking works!!! I get aches in my chest b4 my body starts shutting down, and I'll literally be drifting in and out of consciousness while walking and struggling to stay awake because I don't want to bite the curb. and then every authority figure blames me??? they blame me for not being able to control when my brain decides I need to nap???
be me, sitting in class. I suddenly start feeling the familiar tightness in my chest, and my body starts wobbling before my eyes close against my will. and then I pass out and come back and my teacher is just like "you fell asleep, I'm not going over that again."
like bro please…I have a sleep disorder…
i don’t even know where to start when it comes to sleep attacks, people always assume it’s me passing out suddenly where i drop to the floor but no. i can feel it rapidly approaching my location before hitting me so had it leaves an imprint in my skull before running away and coming back two minutes later for the next 30 minutes as i try to stay awake because im WORKING.
then i’m just expected to continue working??? i mean. i guess??
literally the only good thing abt having narcolepsy {obviously I’m glad I don’t have something worse than narcolepsy but it’s still not fun}
just some faceless dreamers
This is called Cataplexy.
http://www.youtube.com/embed/TooBgODll0E?feature=oembed
Funny Baby Narcolepsy (by coldhandedman)
So, this is purely educational. Stumbled across this while working on Psychology and various sleep disorders. There isn’t a cuter sleep disorder than this one.
Two Condensed
The water of the bog lapped at the tiny boat, the sound joining the melody of the insects and frogs. Intrigued by the presence of the boat, he crept closer, only to find a woman within. She was sleeping, fitfully, and it soon became clear that her body lay elsewhere. The absence of a physical presence calmed the man – this was HIS bog – but the character of the woman piqued his curiosity.
He had invited this woman to his mansion several nights before – ambushing her in the midst of a dream of normalcy. Her heart had been confused and calling out, but pure despite all that accosted her. Strange emotions stressed her body and kept her restless during sleep, her waking days incomplete and filled with ephemeral fears that she could not explain. He had opened his mansion to her, providing her safety. He was sure she would forget, like all the other women he tempted, but there she lay.
It was not safety she sought this night, but peace. Peace? Who had ever come to him for peace other than that final rest? But there she was, tempting him to find her. Ha! Well, he’d found her, all right. Running a hand down her spine, frustration rose from her. This frustration was unique, however – a frustration at not being frustrated. She was frustrated that she was uncomfortable with the very things that, years before, she had fully embraced and upheld. “Why!?” her body cried. “Why am I embarrassed, when I know it’s inevitable!?”
Such a mystery, such a unique case! Her husband, for once among the lot, was not the cause for her anxiety. He had opened her up, melted her down, and was ever patient. Her certainty in his love, and her love for him, was solid. No, she understood, as he did, the difference between love and lust. But that was not an answer for her, that was an assumption. As her thoughts spiraled, searching out that gleaming seed of truth, something caught his eye.
She straddled a crossroads, both in her waking and dreaming life. A double paradox she was trying to contain. Light verses dark, pain verses pleasure. The answer to that question she already possessed, the seed planted and growing. Light through darkness, pleasure through pain, the one causing and bringing the other – she knew this. But how?
He shook his head and chuckled. The memory of their most recent meeting was welling within her, compassion and empathy flowing forth for a friend she had barely met. Such strong emotions, such an active inner life, even though her movements were not enough to rock the tiny boat she lay in. He decided, then. Climbing into the tiny vessel, he took her head into his lap. Stroking her head, he opened the way for her, sitting vigil with her soul as she passed on. She would be back – this was not a true death – and perhaps…
Perhaps she would have the strength to rock the boat next time?
Ultraviolet
Soundtrack: Flyleaf “Fully Alive”, “Perfect”, and “Cassie”
Colors, muted by the cover of darkness, drifted in front of my mind’s eye. Swirling, they surrounded me. The midnight music swelled and I was swept away.
Penetrated, perforated, saturated. I became all of these as the music sped the colors, taking me deeper and deeper, touching that place inside that has always terrified.
Radioactive, I once called myself, because of this place. Even that word, however, suggests light, or an explosion. This place, this feeling, this emotion, it is much more muted than that. It is an undercurrent, at best, a presence built of absence. Noisy silence. Darkest light. The denseness of a black hole, with the knowledge that “hole” is the wrong word. A star that grew too big to let light escape.
The anger resides here, passing over the event horizon. That emotion, so new, is possibly the only one that can escape, but escape insinuates a being apart. This denseness consists of the anger, of the darkness in my mind and the spaces between my cracked psyche. Every time my life has shattered, this dense darkness has grown. This dense fire, flaming, raging through my heart.
Where did it come from? Caves. The ultimate darkness of caves; The pressure of the earth above, and the earth below, and the earth all around. It’s formed from the echo of water, more a memory than reality, long lost by the thirsty roots. The strange formations of mineral and magic give it power, dwelling within the places where only the most basic of living forms exist. This dark fire comes from that ultimate purity.
It whispered through my head during sleepless months, found that hole carved from childish dreams deep inside, naive hopes and trust, and set itself to stay. It is now part of me, the purity, the darkness that has form; That lightless fire – burning cold, comforting pain, unseen light.
When all was stripped away, when the final fragments of my glass frame were taken and shattered, this denseness remained. This is what I have become, what I always have been behind the mask.
You can’t break fire, for it has no form. You can’t extinguish it, if it has fuel. You can’t control it, for it is unpredictable. You can use it, but it remains its own master. Try, any of it, and you’ll get burned, unrepentantly.
Oak
Drowsy, half awake, half asleep, stuck between time and existance, I become aware. The wind, it’s new, a fresh breeze, ushering in warmer days. It tickles through my bare branches, causing me to sway and bend. The breeze turns into a gust, and the mystery of my stance plays out once more. How do my branches remain thrust in the sky, how do they not fall from the air like the discarded leaves at summer’s end? My trunk bears the full weight, my roots anchor me, a symmetry made of asymmetry. The wind will gust, blow, and roil against me, but it will not topple my being. Cold it remains in those branches; my consciousness retreats to my core, my roots. Warmer are they, embedded in the earth. They stretch, grow, twirl and extend each spring, attaching me firmer and deeper to the mud below. I anchor the earth while the earth anchors me. The sun is warm on my bark, but still not warm enough. I allow myself to remain sleeping - soon. Soon it will be time to burst forth with new growth, and already some changes are taking place. But not yet.
Everything in it’s own time. Patience… Decades remain to my life, there is no need to rush.
New Doctor, New Meds
So, I've been off of all medicine for about 6 months now, and it's obvious that I need help. Last Tuesday I saw a new sleep doctor - I actually feel comfortable with him. He put me on Imipramine, and we're going slowly.
By midnight of the first night I took it, I could tell a difference. My naps in the middle of the day are practically cut in half, and I feel a lot more comfortable driving when the sun's out, too. My cataplexy still makes me weak in the morning, but it helps me not collapse, and I was even able to move the table for D&D Friday! It's been lasting longer and longer, so I have hope that next Friday I won't have to swamp my system with too much caffeine in order to get home, and then stay up all night. Asside from sleep attacks, I've also felt like I have something like energy, and more or less alert during the day. Best part of all: The demons (Those damned hallucinations caused by dreaming while I'm still awake) have been leaving me alone.
As far as side effects - I twitch more, especially when I'm trying to sleep. It's annoying, but I'm starting to get used to it. I also tend to have something of a tremor when the cataplexy would otherwise be knocking me down. My apitite is slightly lestened, but not because of nausea. It feels like I'm just eating healthier - yum yum spinach, ick ick bread products!
Next Tuesday I'm scheduled to increase the dose - here's hoping that this one's sustainable and that it won't stress out my system like the other medicines did!
Imipramine
My current medication. It is "old-school," brought back specifically because of Narcolepsy patients, so said my doctor. It is a tricyclic antidepressant. This class arose from anti-histamines, and thus has such properties (I have noticed that I've been somewhat less itchy since taking it - I'm horribly sensitive to everything and even need to use a special shampoo, conditioner, and soap or else I itch like the dickens! Perhaps some of my "allergies" will ease off?), and has been almost completely replaced in recent years with Seritonin-reuptake inhibitors due to a "decrease in side effects." It's supposed to increase restless-leg syndrome, if I have it. I HAVE been twitching rather violently when laying down since starting it, but the twitches have been gradually calming down; and I'm getting used to them, so they're bothering me less. Also, bananas help to calm that down, as well. One side effect that I forgot to mention is dry mouth.
Personally, dry mouth doesn't bother me - Cytalphram, which I had been on for around 3 years, causes worse dry mouth than Imipramine does currently. I'm used to sleeping with a dry mouth, and it's even cleared out my sinuses, so I sleep even better and wake up with less of a headache in the morning. ^-^ It's uncomfortable until I get a glass of water, but since I drink all day, anyway, it's really not that bad.
Wiki link http://en.wikipedia.org/wiki/Imipramine
Be sure to check out the "tricyclic antidepressant" link within the article - It's interesting once you get to the "history" section.
Demon Identification
Ok, so, I'm a little nervous about sharing this, but since I can remember, my Hypnagogic and Hypnopompic hallucinations (The dreams that I have when I'm waking up or going to sleep, where I still feel awake but my mind decides that it just wants to start dreaming. It's usually accompanied by sleep paralysis.) have always been images of demons, of one type or another. To my knowledge, only one other person that I know has ever seen these demons. I'd love to know if anyone else sees what I will describe presently, or if I'm just weird.
So, first, the shadow men. I've actually heard people describe these creatures before, and they may have played a part in the Salem witch trials. Even people without narcolepsy or anything else "wrong" with them may see these once in their life while dreaming, so I'm not necessarily concerned about them. They appear as dense places of darkness in the room, leaning over the bed, in the shape of a person. I usually don't sense malice from them, they're just creepy, like peeping toms or something. For me, that's all they do - watch me.
Next, and I've only ever seen one, are the Yetti's. I was on the treadmill in the basement one night, looked up at the sliding glass door, and this white yetti with a blue face was standing at the door like he wanted to be let in. At first I thought it was a person outside, but it wasn't physical like a human, and didn't move like a person would. Freaked out, I stopped exercising and retreated back upstairs, and didn't run the treadmill at night from then on. Like I said, I only saw this once - if anyone has any more information on these, please let me know. Might not even be a "demon," but what do I know about the spiritual realm?
Next are the Imps. There's a Yu-gi-Oh card that has almost an exact picture of these things, but the colors are different. They invariably try to choke me. Every time, either from behind or from some other angle. Not that scary, or hard to bat away - just move into a more lighted area, change the topic of conversation, and you're good.
Now we're getting into the scarier ones, the ones that really freak me out. There's this sensory image that I get sometimes, with or without the demons. It's a super-imposed image - on one hand you have the purest surface that you can imagine. You know that this surface, if you could touch it, would be the smoothest and softest thing you've ever touched. On the other hand, you have rotting, burnt, decaying, wounded flesh - the most corrupted thing you've ever seen. These images are super-imposed, like a double exposed photo. The demons that I'm about to describe are made of this... double-exposed image.
These Demons are humanoid, but may have double or backwards jointed arms and legs. Some have large "smiles," like someone removed the skin from someone's face, and sharp teeth. Some have claws, others don't. There was a time when I was in highschool that a demon dog, made of this stuff, was following me - I actually heard it bark at sunset one day. When in highschool, these demons would bang on the windows and mirrors, trying to get into the room. I finally had enough, at one point, and shut off my emotions (long story, that one, having to do with getting away from my abusive father.) and I couldn't see the demons all through college. However, last October, when I overdosed because my doctor was an ass, these demons came back and infiltrated my house. They've been harassing me ever since, so much so that the week before going on my new medication I woke up from an actually pleasant dream to find one grabbing hold of my ankle. They've never been able to touch me before, and my leg felt weird for the rest of the day after that. (I know it was in my head, but still!)
I'll talk about my defenses against these demons later - for now I'm realizing just how scared I am. For a very long time, I've felt like there was a reason why I see these things with my mind's eye - they're not physical in the least, but the bible talks about angels and demons fighting a war that we can't see. Is it possible that I'm sensitive to that spiritual realm? That there's some element of "reality" to these images? Or is this just the imbalance of chemicals floating around my head, nothing more? I know what my doctor would say, but my psychologist agrees that there may be something more to it. That I might be "sensitive" to this other realm. I know it's not real, it's not physical, but... I just don't have enough data. Let me know what ya'll experience, know, and can discern! Science is about explaining the unexplainable, so... Yeah.
Defenses
So, how do I deal with the demons? Well, I'd like to start off with a little bit of background. Whenever I see the demons, I'm usually in a certain state of mind. It's this feeling of paranoia, where the slightest little thing can scare me. It's different from roller coaster scared, it's closer to like a panic attack, but more subdued, more a generalized feeling.
If you're wondering what this feeling feels like, watch the Exorcist. Needless to say, I can't watch movies of that type of genre - a strange thing moving in the background of the screen is just too much like real life for me. So, that's one way I defend myself - I avoid situations that put me into that state. Additionally, if I start to feel that state coming on, finding friends in a well lit area really helps, and changing the subject of whatever conversation is going on to more light-hearted and happy things can help too.
Also, there are certain things - music, mostly, or character ideas - that approach that feeling, but don't force me into it. I immerse myself in these songs or characters, and in so doing, the paranoia gets pushed back in the long run. It's like a balloon - It started off really small, but in listening to this music and playing these characters I've pushed against the walls so much that now my balloon is very big, and very few situations can force me into that state. For example: Our current D&D campaign features the four horsemen of the apocalypse. The DM's (Dungeon Master's) description of the demons are spot on, and it can get creepy sometimes, but we play in a very well lit area, with a lot of friends around, and the DM is very good at keeping drama off the table and making the play environment safe and friendly. We're all friends, and having the chance to kill the big scary demons with my friends around me in such a safe environment has really been helping me out. Kind of like exposure therapy!
So, in a sense, my first defense is prevention. Inevitably, however, that state can seize me, especially when I'm tired and sleeping and subjected to the whims of my subconscious.
I firmly believe in spiritual power. The Chinese call it Chi, new age psychics call it an Aura, sometimes you can think of it as your Soul, or the Holy Spirit. Growing up, I always felt safe in the woods, and the "color" of the forest, to me, is a dark green. I developed a spiritual shield - when I would start to get scared at night, I would "pull" the dark green energy from the trees into myself, call upon God's white light, then push out that energy into a ball around me, using God's light to fortify the outside into a hard shield, and filling the inside with the healing energy. The end color would be the color of sunlight through leaves, and no demon could get past my shield. Sometimes I'd have to do this several times before the paranoid feeling would fall away, and other times I'd have to push out my shield to encompass my entire room. Eventually, I learned how to separate this shield from myself and attach it to other people - say if I knew they were having a hard time or I was afraid that they were weakened and the demons might come after them. When I got married and moved into my house, I extended this shield to encompass my entire property, and left it up indefinitely. This is a passive ability once you set it up, for the most part, but in order to keep it active you need a renewable source for your energy - I'm not sure if you noticed, but I pulled both components from external sources. Our house is in the middle of a city, and it's been several years since I was able to immerse myself in nature on a daily basis, so that's probably one of the reasons it failed me.
Back in college, I took a class that taught us how to go caving. We had feild trips over some weekends where we'd go to a cave and crawl around. It was a bad time for me in my life, emotionally (looooong story), but every time we went to those caves I felt comforted. At some point, in the darkness, probably while moving my light over some Gypsum crystals, I found a strange dark fire. Back in classes, I started doodling this fire, and I noticed that the creepy music that I'd listen to or characters that I"d play would feel like that fire. I didn't think much of it until last October, when I overdosed on Xyrim because my doctor wasn't listening to me. At that point, my shield was stripped away, stopped keeping the demons at bay, and they raided my house. I still don't remember a lot about that time, but in between the cracks of my sanity I felt that fire. As the "medicine" got out of my system and I returned to myself, I discovered that the fire remained, and actually started helping me with the demons.
I've come to understand that that fire is Angelic - angels in the bible, are bad asses and terrifying to demons and humans alike. Furthermore, this fire is not black, as it looks like, but ultraviolet - a wavelength of color that humans don't have receptors for, but that insects and some other animals do. That's why it LOOKS black. It's dense, powerful, and constantly moving and changing. It feeds off of anger, an emotion that I was previously having trouble controlling (My father was mentally and emotionally abusive - it's a long story), and can help cut through a cataplectic attack rather effectively.
Now, when I'm laying in my bed and I get an image of those demons, my fire ignites and acts like a spear to impale the demon. Then it burns, and I'm safe again. It's... gratifying. I'm a survivor, I'm a warrior, and eventually the demons will learn that I'm no easy target for them to play with and scare.
And the Hammer Falls
The medicine's been lasting longer and longer - so much so that I can't tell when it wears off anymore. It really helps with the Cataplexy - During the day I'm not in risk of falling over or collapsing. I'm weak when waking, or when I'm getting a sleep attack, but I don't collapse. I HAVE been noticing that I start to shake - a very fine tremor through my limbs - when the cataplexy would otherwise be seeing me stumbling or collapsing.
So, whether because of the week of overcast skies or because it just felt like it, yesterday I was shaking all day. I don't think I slept well, even during my nap, and I was very tired, with a hint of depression. But, it was Friday night D&D, and especially when you're depressed you need to go out and hang with friends. I donned my bright yellow dress, put on some make up, and headed out.
The session went very well - full of laughter, innuendos, and demon slaying. It was the final battle, and the majority of the party survived! Laughter and sexual arousal are my two greatest triggers, however, and during the final boss battle I collapsed on the table, laughing. No one seemed to notice, and that's not really unusual for me, but then trying to put my dice away felt like I was trying to run through water - SLEEP PARALYSIS, not cataplexy. My entire body felt SO weak, like I was just skin and bones, and everyone was putting the table and chairs away - I felt like I was in the way. I don't like feeling that way around other people, and I really don't like admitting when I do.
Eventually, everything was put away and we all gathered around, still talking. Several times, because of the laughter, my knees gave out and I crouched on the floor. The DM (Dungeon Master, the one running the campaign) asked me several times if I was OK, and seemed concerned otherwise, but I explained that it was just the cataplexy. Emotionally, however... if I didn't have my medicine in me, those "crouches" would have probably seen me completely limp and unresponsive.
Walking to my car, through a dark alleyway and into a shady lot, I knew that if anyone were to try and attack me I would be helpless. DM was walking with me, because he's AWESOME, so I felt safe, but the knowledge that I couldn't defend myself... it's terrifying. I've taken classes on self-defense, I have a kubaton on my key chain (a long metal rod for jabbing in attacker's eyes and windpipe), I've always been strong, and I have so much anger that sometimes I think it would feel good to have an excuse to just wail on someone. But last night, none of that mattered, because my body decided that it was going to be weak.
I know I have to focus on the things that I CAN do. I'm a great writer, I KNOW science and biology, I can geek out with the best of them. But every so often there's a nasty little reminder of what I CAN'T do anymore. I can't go to Grad school full time, I can't work full time, I'll never be a professor, or get a doctorate like I dreamed when I was younger. That's what hurts the most, not the exhaustion, not the headaches, not the side effects of the medicine or knowledge that my body can just give out at any time, but the fact that I have to give up on my dreams. My ambition will remain unfulfilled, because my brain can't regulate sleep. And that's all there is to it.
I learned a long time ago, though, that if it wasn't one thing, it was going to be another. I've survived before, I'll find a new dream to pursue. And, really, thinking about it, all the greatest scientists made their findings, not through universities or as professors, but as unaffiliated individuals. They had professions in subjects completely unrelated to their discovery. Can I still read? Yes. Can I still write? Possibly better than before. Can I still think? Again, when am I not? It's just a matter of time before I do something amazing, and I need to keep reminding myself of that fact.
Terror
I'm scared, sitting here in MY home, with all the doors and windows locked, with the alarm system on, with the sun shining outside, and I'm terrified. Why? On the website we've been using for our D&D campaign, where I've been posting long write-ups about my character and her reaction to events during the campaign, a stranger favorited our campaign. They didn't respond to anything, they didn't make any comments, they just favorited the campaign so that they could follow it, and probably the posts that I've been making. DM said that he already planned to nuke the site, and would do so sooner if I gave the word.
This. Is. Not. Rational.
But it is. I don't know this person, and those posts directly relate to a time and place that I can be found every week - if the person did their homework, there is a possibility that they could find me. And just, randomly, show up one day.
The fact that ANYONE could do that scares me, but this is hitting some buttons that go WAY deeper than that.
So, my father was mentally and emotionally abusive. He never raised his hand to me, but his greatest weapon was doubt, and he was escalating when I left. Since getting away from him, I've rooted out alot of the damage that he did to me, but he affected me my whole life growing up. I realized a couple years ago that I inadvertently internalized his voice - all those thoughts that say "you're not good enough," "You're doing something wrong," "You're not doing it right," they speak in MY voice. I FEAR him, that he'll pull me back in one of these days. When in college, I presented a poster on some research I did - the poster was put online like all the others, and it was because of that poster that my father was able to find me and contact me again, after I thought I'd gone invisible. So now, any time a strange username shows up, or I get a weird comment form someone I don't recognize, a thrill of panic races through me, even if I"m able to explain it away.
But it's not just him I fear... again, when in college, my mom was the victim of a home invasion. The bastard impersonated a cop. He promised her that if she went to the police, he'd find and do the same thing to me... For the next couple of months I went nowhere without someone else around - weather my roomate or my boyfriend at the time - for fear that he'd do exactly as he promised. I'm a loner by nature, I generally preferr to be alone, and being constantly surrounded by people... it saw me in the hospital. The fear, the constant terror, the looking over my shoulder and wondering... will it be tonight? Will he find me tonight? Will he do that tonight?
I know why the narcolepsy got so bad all of a sudden after I married. It was because, finally, for once in my life, I was safe, and I didn't have to keep pushing just to survive. I. Am. Safe. Here. Even with demons climbing in through the windows, at the very least, my physical body is safe.
But if I leave, if my husband isn't here... That's where alot of the anxiety comes from. That uncertainty... you can take as many precautions as you want, but eventually... something will just happen. Someone will get through. And with my body being unreliable as it's been... well, if something DID happen, would I be able to handle myself?
Anger cuts through the cataplexy for me, which is comforting. And I decided a LONG time ago that I'd rathar be angry than scared, than sad. So...
Fuck my father. Fuck that man. Fuck that guy that randomly favorited our campaign, and fuck this fear. I'm going to get angry, and it's going to fuel me. I will be terrifying, and if anyone tries to do anything, well.... it'll be an excuse for me to let loose this well of anger that I hold. Turn the pain to energy, turn the fear to anger, and USE it. We have weapons in every single one of our rooms, and I'm prepared to kill. I'm not putting up with this fear any more!
Medication Update
I'm pretty sure it's the medication causing this, but my panic attacks have increased in frequency. My general anxiety has decreased, and the severity of my attacks has decreased, but they're happening almost every day.
I'm having one right now, thinking of trying to run a new campaign for a small group of close friends... and realizing that I have to read this ENTIRE BOOK (it's only 92 pages) and REMEMBER everything in order to run a pre-generated campaign, which I've never done.
This... is seriously pathetic, emotions. Really? THIS is what you're freaking out about!? Uuuugggghhhh.
The sun is out FINALLY. I think I'm going to get dressed and read in my (soaking wet) hammock. Frack this.
Worlds Within – the Frozen-Glass Lake.
The girl frolicked through the foliage – it was finally spring! Tender buds rested on barren branches, and brave shoots stretched towards the sunlight. The sun – it seemed like far too long since its warm rays shone on her. Walking the beaten path to the lake, a skip was in her step as she straightened her new swimsuit. FINALLY she had energy, finally her body would listen to HER instead of demanding the reverse and confusing its signals. She had swam the day previous, and the day previous to that, and she looked forward to the refreshing dip. She stopped suddenly, however, as the tree line opened up, revealing the lake. “What are you doing, you ass-hat!? It’s not even cold!!” The Lake was frozen over with the familiar film of ice. Almost in response to her words, with the sun still shining, the sky opened and fat flakes of white started to fall. The girl glared at the lake as the vegetation took on a sinister edge, the taste and color of tea brewed too long filling the world. “Well, shit.” She considered covering the sun, hiding from it… but thought better. It was in situations like this that the sun was truly required – the vegetation probably needed the warm rays, and was simply reacting to the long time when the sun couldn’t reach the ground. EARLY spring was always tricky, when the world couldn’t make up its mind if it wanted to return to winter or burst forth into life – too many times it had decided to go back to sleep, and the girl longed for the fresh blooms of summer. So she kept the sun, exposing herself as fully as possible as she walked over to the hutch that she’d built long years ago. Opening the creaking wooden door, she removed a pair of ice skates and sat down to put them on. The snow came down faster, almost obscuring the sun with the number of flakes in the sky. The temperature started to plummet, and she heaved a pickaxe to her shoulder, grumbling the entire time. She was really getting sick of this game that the lake played. The reason for the sudden freeze eluded her, though, even as she gazed past the frosted glass of the surface. It was obviously going to be tricky… Balancing gracefully, the girl kicked off onto the ice, moving to the middle of the lake. She could still see no sign of the cause, and thus raised her pickaxe. As the tool came down, the glass fractured – all of it. She had a moment to wonder at the violent reaction before she was falling. Where was the water that acted as a cushion underneath the glass, keeping it afloat? What happened to the mud that she had managed to drag into the lake, filling the bottom and providing solid ground to push off of? Now, it was that same bottomless pit that she had crawled out of time and time again – the scratch marks on the sides served as a reminder of her struggles from years past. Panic gripped her – was she going to crash? Was she finally going to break through the bottom, shatter the elusive box that defined her life, and shoot out to the space beyond? “NO!” Anger filled her, the familiar rage erupting geysers into the emptiness. The water filled the space, and she found herself struggling still with the heavy skates and pickaxe – tools for keeping her afloat now dragging her down. With the water, however, she could swim; she was stronger than the force of the weight pulling her down. She had proven THAT little fact before, and the strength had nothing to do with her body. “My body’s strong, but my spirit’s stronger.” She kicked, feeling the burn of her muscles as they were once again used. The burn combated the numbing cold so that it no longer affected her; the pain in her lungs as they cried for air was too important to waste attention on something as trivial as hypothermia. Rising to the surface, she found the glass in place. The damned lake had frozen over her head and she was trapped. It would take much longer for her to drown, but the situation had deteriorated so rapidly… In panic, she thrust her hand through the ice. If the sun no longer shone, she could always scratch her way out – she’d done it before. Broken nails, bloody arms, and a case of numbing pain was always better than death, and she wasn’t about to mess around with the ice over her head. A warm hand met hers, though, grasping and keeping her at the surface. That one hand was joined by others, their warmth helping her to fuel her own strength, and they PULLED. Still with the pickaxe in her hand, she reared back and threw her weight at the glass. Again it shattered, and she found herself in the air, joining the wonderful rays of sunlight as they continued to shine on her inner world. “Thank God…” It would be different this time. As she started to fall back to earth, she watched the damned lake freeze over again. So THAT’S how it was going to be? Landing in the middle once more, skates splayed and palm wide to disperse the impact as much as possible, she stood gingerly. The darkness underneath roiled, but the same chemicals that would trap her underwater also saw the glass stable enough to stand on. If she was careful, a resolution to this would be found. “Once you go there, you can never come back. Not and be the same as you were.” In an attempt to taunt her, the snow increased, creating a blanket on the ground. The unknown beyond the box called to her, the darkness sending visions through the ice of the world beyond to tempt her soul, but she merely scoffed. “You wasted your chance. You caught me off guard – I’ll give you that – but I’m onto you now. I have friends,” She motioned to the sun, still beaming down, and the unconditional trust in that one ray that would forevermore light her world, no matter the depth of the darkness, “and I have support,” She stamped the ice firmly, “and I know your ways. You may make the external conditions perfect, but that doesn’t mean I have to give in. Bitch.” She continued to study the lake, the darkness trapped beneath the glass, before a glint caught her eye. “Bingo!” Now it was a simple matter of diving to retrieve the cause of the distress. Returning to the shed, she retrieved a tank and mask. Struggling into the contraption, she was ready. She skated, once again, to the middle of the lake. There, after a few more tests comprised of banging on the glass to roil the darkness beneath and ascertain the exact position of the glint, she reared back once more with the pickaxe. This time took several swings, but then she was in the water again. “If you are unprepared, it will be Hell. If you are prepared, however, it will be Heaven.” This time, she was in control. Basking in the sunlight, the ice melted. Keeping that one ray as a guide, she took a deep breath, and dived. She took a moment to change her skates to flippers – it was a simple thought at this point – and into herself she delved, receding deeper towards that glimmer of pain. Down, and down, she swam until the darkness surrounded her, and there, exuding the sorrow and ugly emotions, rested the pearl of truth. She grasped that pearl, ignoring the pain that it caused, and turned around, swimming for the light. Gasping for breath, she emerged, her flippers turning once more to skates, and she struggled to the shore. Exhausted, she managed to pull herself out of the lake before it froze over again. At least any further darkness would be kept at bay, for a while. Removing her tools and replacing them in the shed, she contemplated the color of the pearl. Figured it would be that – with all the sunlight, she had known that THAT pearl would come to light, eventually. She had SO hoped it would give up without a fight, but she was more glad that she’d finally found it. How many years had she hunted that pearl, trying to get it to coalesce so that she could remove it from her lake? And to think, it had taken the sunlight – a friend’s assistance – to find it. It made her uncomfortable… but she slapped that thread of darkness away. Trust… it would take all her “unknown” strength to do so. Best to purify the pearl before it caused any more trouble. Clothing herself once more in her overalls – the legs being shorts to expose as much of her skin to the healing rays of the sun as possible – she trusted the warm rays to dry her hair and protect her from the frigid air. As she walked back along the path, she noticed the forest returning to normal, by inches, and smiled. She would bloom this time, she would make SURE spring came. Returning to her field – already the grasses were racing towards the sky – she retrieved her bat. Looking at the pearl in the sunlight, it was infused with darkness and pain, the latter leaking out to trace static lines across her hand. It made her want to cry, but with this particular color of pearl… it was almost trite at this point, overdone, to shed any more tears. Still, as she gazed into the orb, her doppelganger appeared in the tree line. It had her voice, it looked like her, it SEEMED to be kind, reasonable. But she’d discovered the true source of its words years previous. It was insidious, though, and with this pearl… “I know who you are, and you’re not allowed here anymore. You lie, and you lie, and I’m done with you. I have people in my life now who love me for who I am, who support me and recognize my ability when I choose to show it. They compliment me when you would only degrade me, they lift me up when you would pull me under, they stay by my side even when others have made true your warnings and abandoned me. I will not fall victim to your cruel words any longer!” The phantom opened its mouth to speak, the old familiar words clouding and darkening the sky, but the girl just smiled. “I’m not listening.” Throwing the pearl to the sky, she swung the bat with all her strength, sending the pearl through the phantom. The crack of the bat resounded through the valley, and she watched as the pearl embedded itself in the mountain. As she climbed, the sun again glowed, and she became a bit warm. So soon after being numb with the cold… it was amazing to her. Digging in the mountain side, she rooted out the pearl – clear, pure, if a bit cracked. One more badge of triumph to proudly display in her home of homes.
I'm really depressed right now. And angry.
I feel helpless. Really helpless. I've asked for help from several people, and they keep dropping the ball. I was always so independent that 1. Admitting that I need help is hard and 2. I never quite learned how to ask for it. It makes me feel icky, worthless, like I'm a failure just to ASK, but when I don't get it... I'm just so tired. I feel so horrible, All the time. It doesn't stop, it doesn't get better. Yeah, there are better days where, given my nap and everything I have to do to get to sleep and medicine and diet, I don't struggle. Where it's almost like I'm normal again, if you tilt your head and squint. And the bad days pass, the days where I wake up wondering why my body isnt showing all the bruises and breaks from that truck running me over the night before. Days where I get up only long enough to eat, maybe, like I used to when I would get sick. But the constant fatigue, the constant exhaustion... I look at everyone else and they're so perky, even on bad days. I'm not. It's all I can do to just sit here and stay awake, always. I need help. I need someone to bring the laundry up, or just outright do it, because I can't carry that much up/down the stairs. I need someone to cut vegetables for me. I need someone to cook, to lift the dishes and put them away. I need so much help, on a day to day basis, and it's all on top of maids coming every month to clean. I've tried asking for help, but either I have to gather the vegetables and go outside my house (which I can't handle) or they come over once or twice and then stop. I promise, if I had the energy, if I wasn't in so much pain, it would be nothing. Carrying a basket up the stairs... That doesn't take much energy or time. For a normal person. But... It leaves them wondering why I can't do it myself. It makes me wonder if they're hearing me. If they're thinking that I'm just lazy. I'm having a hard time coming up with other reasons for their behavior.... And it's killing me.
yer local type one narcoleptic >:)
a lot of people think narcolepsy is just ‘being sleepy’ or even ‘being lazy’ but it’s so much more than that. symptoms of narcolepsy include:
extremely intense, vivid dreams/nightmares. narcolepsy is defined as a disorder in which most of, if not all of your sleep is REM sleep. this is what causes daytime sleepiness; your body is NOT RESTING CORRECTLY and is physically incapable of doing so. we have little, if any deep sleep.
sleep paralysis and hallucinations.
cataplexy, found in type 1 narcoleptics. cataplexy is very similar to a seizure, though it is not classified as one. episodes of cataplexy are usually (but not always) brought on by strong emotions, and cause you to lose control of different parts of your body, ranging from muscle limpness to full on collapse.
EDS, or excessive daytime sleepiness. often times, narcoleptics will suffer from something called a sleep attack, where they fall asleep uncontrollably. this can happen while working, driving, or doing hobbies.
increased risk of all cancers and other (yes, narcolepsy is suspected to be an autoimmune disease!) autoimmune diseases, as well as an increased rate of mental health issues. ADHD, diabetes, heart disease, and depression are often co-morbid with narcolepsy. tying in with this, we have an increased rate of suicide.
insomnia due to the nature of extremely fragmented and disrupted sleep. intense and vivid nightmares can often make WANTING to go to sleep difficult as well. pretty much any other sleep disorder can be co-morbid with narcolepsy.
decreased cognitive function. memory issues are common in people with narcolepsy; even a mild case of narcolepsy can be compared to going 48-72 hours without sleep in a normal person…except its every day.
extremely poor quality of life. [1] [2]
not a symptom, but it often takes narcoleptics several years to be diagnosed w this disability; it is EXTREMELY under-diagnosed, and testing and treatment are very expensive even with insurance.
there is no cure for narcolepsy, only treatments. the only treatments we currently have are various stimulants (adderall, modafinil, ritalin, etc) or just straight up GHB. many people cannot tolerate these medicines, making treatment even more difficult.
(keep in mind that i am writing this post from an american perspective; i know treatment is often more accessible in some ways in other countries, though i also know it can be worse/harder in different ways too.)