Idiopathic Hypersomnia: A Turtle Going Uphill Through Molasses in January

Words escape me.  I am a reader, a writer, and highly educated with multiple degrees.  Eloquence is high on my list of valued traits.  Communication is one of my strengths, and something I’ve always been commended for.  And yet, words escape me.  I stutter, I stumble, I am tongue-tied.  My focus drifts.  It’s like trying to grab water in your fist.  That is part of what it feels like to have brain fog, a symptom of multiple chronic illnesses, including my Idiopathic Hypersomnia.  You can’t find the words you are looking for.  Even everyday words.  I struggle daily with number, administrative, confirmation, tracking number, inventory, and more.  These specific words come up multiple times per day for me because I am a customer service representative who takes orders.  And yet, the words escape me.  But I am not stupid.  I do not have a low vocabulary.  I reiterate, I have multiple degrees including a Bachelor of Arts in English.  Communicating in a clear and concise manner was something I was trained to do.  But words escape me.  Not just once in a while.  All the time.

Brain fog is just one aspect of Idiopathic Hypersomnia.  It isn’t even the biggest aspect, nor the most important.  And issues recalling words isn’t all of that aspect either.  However, it matters because how can you convey what it is like to have constant all-consuming fatigue if words escape you?

I would say that my fatigue is a “maelstrom,” or a “torrent” within and surrounding me, but the connotations of such descriptions bring up thoughts of fast and wild disasters.  Fatigue is much more subtle and slow.  It is not the quick death of a bullet to the brain.  Fatigue is more like walking through thick, high mud.  Like swimming through honey.  Like drowning in an ocean.  Like being in a bog, surrounded by impenetrable fog.  Like a turtle going uphill through molasses in January.  It is all of these things simultaneously.  It is wearing a lead straight jacket while trying to escape drying cement.  It is slow, and it eats you alive from the inside.  It is the thick, heavy, slow, drained, helpless, hopeless feeling.

Imagine dealing with all of that, day in and day out.  Now experience all of that while trying to be a competent part of society.  Subtract caffeine.  Add heart palpitations and a minimum nightly requirement of eleven hours of sleep.  Add social stigma.  Subtract understanding.  Shake or stir as is your preference.  The hardest part of your day is waking up.  The second hardest is getting out of bed.  The third is staying awake.  An eternal struggle.  Stay awake.  Be productive.  Accomplish your tasks.

Imagine doing all your normal tasks (and they have to be done well and in a timely manner) when you haven’t slept in three days.  Now imagine doing that every day.  Can you?  I can.  Because that is what I do every day, because Idiopathic Hypersomnia means that I need a minimum of eleven hours of sleep in order to feel like I haven’t slept in two or three days.  I cannot remember what it is like to feel refreshed, and rejuvenated, and awake.  It’s been years.  Without hesitation or needing to think it over, I would voluntarily amputate an arm or a leg if that was the cure.  Think about that.

Take all of that and tell me I am lazy.  Take all of that and tell me that you’re tired, too, or that I sleep too much, or I just need exercise.  Take all of that and tell me that fatigue isn’t debilitating.  I dare you.


Edit:

But you know what?  No matter how many people read this, there are still going to be those that think fatigue isn’t debilitating, that I am lazy, that I’m “just tired,” that I “just need exercise,” or to change my diet.  But life keeps going.  So, just like that turtle, I will keep going, even if it is always uphill through molasses in January.

Cosmetology School!!!

At first, I was embarrassed to reveal/admit that I had enrolled in cosmetology school.  This embarrassment stemmed not only from my fear of loved ones reactions (anything from confusion and comments such as "but you've never been interested in make-up!"to my assumption that people would be disappointed/let-down/displeased), but also from ingrained societal preconceptions that no on e with potential, intelligence, and ambition would ever "lower" themselves to "just cutting hair."

My responses are multi-fold:

People are many faceted and can be college-educated and a hair stylist, interested in sports and make-up, books and television, computer games and knitting, enjoy pink and blue, want to be cute and badass, etc.

Secondly, why should I be embarrassed to have a fun, creative job doing a service for others that they cannot perform themselves?  Why shouldn't making someone feel good about themselves and help them find their own kind of beautiful be as important as teaching, healing, or what have you?  The answer, of course, is that these types of jobs are all equally worthy and valuable.

It has taken me a long time to find what I want to do with my life--and I'm sure that it is not a permanent discovery.  For years, every time I would get a hair cut, I would think "This would be so fun to do!" but I would immediately dismiss the thought because I don't wear make-up, I don't style my hair, and don't pay attention to the fashion industry, and I "could do better."

Turns out, this is better.  I am choosing to be proud of this choice.  (Side-note: not only am I proud, but I am incredibly excited.  I could wax poetic on the subject until the cows come home.  And since I do not actually have any cows, that is liable to be a very, very long time indeed.)

Depression sucks.

It feels like I'm drowning.
I can barely breathe and I feel like I'm being crushed.  I'm surrounded by stormy seas, pushing me this way and that and tugging me under.  Everyone keeps saying "hold on," and I'm trying--but it feels like there's nothing to hold on to.

    Today sucked.  It was one thing after another that went wrong.  We ran out of a bunch of things at work, we didn't have enough change in the safe, it took us forever to get out tonight (and we still clocked out by 22h30), and then Christian wasn't home to cuddle with me and he isn't coming home tonight because he's spending the night at his parents' house for some reason.
      To be fair...  It wasn't the end of the world.  I need to learn to take things in stride.  I need to let go and let things wash over me like water off of oil.  Be a calm lake and all that.  I need to not stress and not worry.  Just do my best.  Finish the things that can be finished and forget the rest.

I want to be a good person.  A kind person.  A sweet and thoughtful and awesome and feisty and refreshingly quirky and interesting and cordial and compassionate and understanding and tolerant and accepting and creative and fabulous and frabjous and exuberant and a loving person.  I want to be all these things.  I do not want to be stressed, worried, depressed, bitter, resentful, hateful, judgmental  intolerant, boring, unhappy, dull, normal, mundane, unkind, bad, or anything else.
I want to make other people happy, bring smiles to their faces and sunlight into their lives.  I want everyone to feel loved.
My goal is to be happy and make others feel loved and wanted and happy.

30 random things about me (a la Callooh!)

I've done these "30 Random Things About Me" on Tumblr before.  Today, I read a friend's blog where she did 30 random things and I thought I would do one again as well.  I like to talk and I like to talk about myself so this seems fitting. 


30.)  I am an Aries Earth-dragon,Seeker, ENFP, 4w5-7w6-9w1, Hufflepuff, bookwyrm (who obviously loves personality quizzes... For instance, I took a quiz that tells you what kind of spice you would be.  I would be Majoram.)

29.)  I love being crafty and creative.  I love writing--novels, poems, letters, fanfictions, journal entries, what-have-you!  Currently, my crafts include knitting and zentangling (which is like doodle meditation...which I don't do well because I don't really meditate.  And I don't know enough designs yet; I do not think of myself as an artist.  In my mind I cannot draw).  If I had money, my crafts would also include chain mail jewelry.  And I would like to add stained glass, and glass etching to that.  And try my hand at resin jewelry.

28.)  I recently discovered that I am not as unambitious as I believed myself to be.  After all, wanting to write and publish multiple novels is ambitious.  So is endevoring to join the Foreign Service.  So it is not that I lack ambition.  I just don't take the "do whatever it takes" approach...I'm more lackadasical than that!  I guess what I lack, perhaps, is motivation and/or drive. 

27.)  I am a study in contradictions; I am both sides of a coin. (That sounds like a poem.  I should write that...)
For example, I'm independant, but like to be nurtured and dislike going places/doing things by myself (especially places I've never been where I will not know anybody).  I have high self esteem, but low self confidence.  I could go on, but I won't.

26.)  I'm a picky eater.  I am less picky than I used to be, but still picky.  However, recently I have come to like peaches.  Which is new.  Peaches are beautiful; they look like sunsets.  And they are soft and fuzzy.  How could I never have liked them before?!

25.)  I love words and language.  Perhaps this is why I enjoy reading and writing so much.  I'm sure it contributes.  Some of my favorite (English) words are:  murmur, persnickety, finicky, lushous, effervescent, quirky, fiesty, curve, curl, coil, coin, curlicue, pillow, puddle, cuddle, ravishing, swirl, tangle, lollapaluza, mellifluous, puzzled, frabjous, boisterous, audatious, sponge, squish, whiumsical, rejuvinated, vivacious, fizzy, mischevious, mirth, succulant, jubilee, and slumgullian.  One of my favorite French words is chamboulée which means messed up or shaken up (refering to a person).  I love how they all sound.  I dislike these words:  pimple, pustual, suck, boobs, pulp, retarded, gripe, penis, titties, fleshy, skank, preggers/prego, cute, or nice.

24.)  I love pens (again, perhaps this has to do with my love of writing) and I collect them.  Fountain pens are my favorite.

23.)  I do not have any tattoos, but my ears are pierced twice in each ear--both in the lobes.  My first wholes took three tries to get them to stay.  Fortunately, the second holes are not so troublesome. :D
Though I do not have any tattoos, I am not opposed to them.  In fact, I quite like them.  I have thought about getting at least one, but I do not know where.  I used to not know what I would get, but I have decided that some sort of compass rose design would be appropriate and meaningful for me.  It would mean direction, adventure, purpose, possibility, journey, etc.  It could be small, personalized, simple, and elegant.  I still do not know where I would put it--I want it somewhere where I can see it (easily), where others can see it, where it won't stretch/morph as my body changes due to life (or at least where it will only stretch/morph minimally), and where it can be covered easily if needed.

22.)  I like soft, shiny things.  And soft thigns that arenot shiny.  And shiny things that are not soft.  But mostly, I like soft, shiny things. :3

21.)  I love to travel.  Much of my Bucket List involves traveling to specific places around the world. 

20.)  My weaknesses include:  I am irritable and moody, I complain, I procrastinate, I avoid boring/tedious things, I am impatient, I like instant gratification, I have low self confidence, I am not the best with organization/planning/details, I have stage-fright, I slack off if I am not interested in what I am doing, I don't have a lot of motivation/drive, I don't like going places alone--especially places where I will not know anybody or where I have never been (mostly the first), I'm overly sensitive to criticism, and I'm pretty self-centered.

19.)  On the other hand, my strengths include:  I'm good with people, I'm good with ideas, I'm creative, I'm effervescent, I'm compassionate, I'm tolerant/accepting of other's ideas and beliefs, I'm open-minded, I am respectful and cordial, I can be very hard working if I am interested in what I am doing and/or I see the value in doing it, I am passionate, I am quirky and unique, I am interested in learning and doing new things, I'm generous, I'm independant, I have high self-esteem.

18.)  I'm afraid of spiders, being alone, being vulnerable, being left behind, and being afraid.  I know that if I am afriaid of something, I should do it/be around it.  But I am not so wise and open as that.

17.)  Dislikes:  when people's tags are sticking out of their shirts, when people do not use their turn-signals, nuts, fish and seafood, tomatos, pineapple, pears, the color pink (except for certian things like flowers and sunsets and other things in nature.  I do not like to wear it or be given it.), bugs, when people leave the toilet lid/seat up

 16.)  Things that make me angry (more intense than mere dislikes):  When people do not listen to me, when people dismiss my thoughts/feelings/ideas, when people are rude and or cruel to other people (to ANYONE, but especially to my friends, family, and loved-ones)

15.)  I want to be interesting and fascinating and charismatic in other people's eyes.  I pretend otherwise, but I do, in fact, care what other people think (though I try not to). 

14.)  I love colors.  Especially bright, bold colors and jewel tones.  My favorites are:  burgundy, aqua, royal purple, kelly green, amber, chocolate brown, honey, mauve, orange, soft sunshine-yellow, midnight blue, electric blue.  I love rainbows.

13.)  Feathers are awesome.  And candles.  And flowers.  I like daisies, lilies, irises, butterfly weed, dandelions, violets, echanacia, alstromaria, and more!

12.)  While I tend toward males with ocassional females, I consider myself pansexual because I would not care if the person identified as male, female, inbetween, was transgendered, or whatever.  (Maybe I am simply bi-sexual and pan-romantic...ah, lables!)  I don't understand how people can be against love even if it's different from their own. Love is love is love and people should be able to love whoever they choose.

11.)  I'm vain about my hair.  I love my hair.  I love that it is thick.  I love the color.  I love how it feels.  I have never dyed my hair and I do not plan on ever doing so--even when it's all grey.  Or maybe once my hair is mostly grey, I will dye it fun colors like purple and burgundy and orange.  My hair is so dark now that I'd have to bleach it in order for people to see the colors...so much work!

10.)  I believe life is precious.  I do kill some bugs (spiders for instance scare me and I want to run away.  If I cannot run away, then I kill them.  I also kill flies and ants that are in my house.  And mosquitos).  And I am not a vegitarian.  Considering my beliefs, I should probably BE a vegetarian, but I'm too self-centered and unenlightened to do so.  I like meat.  I know that's selfish and cruel for the animals, but... there you have it.

9.)  I do not wear make-up.  I do not NEED to wear make up.  Also, I am not a morning person and the less I have to do to get ready, the better.  This is also the reason I take my showers at night. 

8.)  I have decided to read the bible because I want to be able to interpret it for myself instead of relying on what "Everyone" says.  Also, when people try to use the bible to stop good things (like legalizing GLBT marriage and other rights, etc.), then I will be better able to construct counter arguments using language and reference that they understand--an authority that they will believe.  (I am still on Genesis.  No offence to anyone, but it is slow going because I have found it dull and repetative.)

7.)  I feel the need for more ritual and spirituality in my life.  I love being a UU though.  What my current church can'tgive me (or at least isn't giving), I will have to create for myself!  With candles and insence and poetry and mood music!!

6.)  I love steampunk.  I like Renaissance faires and Science-fiction conventions.  I have not gone to any yet this year and that makes me sad. 

5.)  I am lonely.  I have moved 700 miles away from most of my loved ones and am having trouble getting out and making friends.  I have made one friend, but I have yet to meet her in person, though we have exchanged e-mails.  I do not really have the money to go out and do things.  Hopefully, getting a job will help me because I will a.) make friends with my coworkers and b.) will have money to go out and do things and therefore meet people.  I do not like being lonely because it makes me depressed.

4.)  Speaking of getting a job, I should be looking for one right NOW.  And part of me wonders if it is a good idea to post this at all because "what if my employers find it and decided not to hire me?!"  On the other hand, if these hypothetical employers do not wish to hire me because of thigns I've said here, then they are probably people for whom I do not want to work!

3.)  Three...hmmm...In my opinion, three qualities of trust are 1.)  Sincerity/being genuine/honesty: don't try to be someone you're not because you think I'll like you better. I'd much rather see/hear the real you. I like differences in people and so I'd want to see yours. If you don't want to tell me something/talk about something that I've brought up, don't lie about it. Just tell me that you'd rather not discuss it right then and that you'll tell me when you're ready!  2.)  Listening: If I feel like you're not listening to me, or that you're dismissing my ideas/feelings/thoughts/etc., then I won't beable to trust you and I won't open up.Along with listening, be understanding and accepting of who I am. Don't try to change me because then I'll feel like you don't value who I actually am/don't see or hear the real me, and then I'll close up and won't trust you. and 3.)  Integrety. Someone who stands up for what they believe in, who upholds their values. No saying you believe in something, but then having your actions go completly against whay you've said you believe.

I like the what-you-see is what you get.  I think that is true for me.  I also believe I have all three of these qualities.  I would hope that I do!

2.)  Some of my favorite quotes are: 

"There is no certainty; there is only adventure." --Roberto Assagioli

"Il serait fou d'etre trop raisonnable." French Lavin perfum ad meaning 'it would be crazy to be too reasonable.'

 "I am a forest, and a night of dark trees: but he who is not afraid of my darkness, will find banks full of roses under my cypresses." --Nietzsche

 “Show me a day when the world wasn’t new.” --Sister Barbara Hance

 “Think of the world you carry within you.” --Rainer Maria Rilke

“How many paths are there to God? There are as many paths to God as there are souls on the Earth.” --Persian poet Rumi

 "Forever is composed of nows." --Papertowns by John Green

“We are shaped and fashioned by what we love.” -- Goethe

“My happiness is not the means to any end. It is the end. It is its own goal. It is its own purpose.” -- Anthem, a novel by Ayn Rand

 “Finish each day and be done with it. You have done what you could. Some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day. You shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.” --Emerson.

"The world is my country, and to do good my religion." --Thomas Paine

“Maybe our favorite quotations say more about us than about the stories or people we’re quoting.” –John Green

“If you wish to make an apple pie from scratch, you must first create the universe.”   --Carl Sagan

“Don’t tell me the moon is shining; show me the glint of light on broken glass.” --Anton Pavlovich Chekhov

“There is no end. There is no beginning. Only the infinite passion of life.” --Federico Fellini

“There is no Them. Only infinite facets of Us.” --John Green

“I’m selfish, impatient, and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.” --Marylin Monroe

“Since no one is perfect, it follows that all great deeds have been accomplished out of imperfection. Yet they were accomplished, somehow, just the same.” --Lois McMaster Bujold (Mirror Dance).

 

"I arise each morning torn between a desire to improve the world and a desire to enjoy the world.  This makes it hard to plan the day."  --E. B. White

1.)   I believe that all these things, from my favorite quotes, to my fears, to my personality types are all part of who I am.  They are part of what make me Me.  There are contradictions and inconsistancies because I am a human being.  I can not fit in a box or under one lable.  I need many lables to desribe myself and I bet that none of them fit me to a T because I am human and humans are complicated.  I am more than a sum of my parts.  And, for the most part (despite sometimes wanting to be even taller and to be in better shape and have better skin or be less irritable), I like who I am and I am proud of me.

 Now that I've written this, I fear I've revealed "too much"; it is way more information than you probably wanted to know about me!

Words Per Minute

My words per minute (in reading) is 408.  Go check out your wpm! :D

Source: Staples eReader Department

Wishcraft, Exercise 1

Who do you think you are?

I am me. I’m young and full of promise, like any other 23 year-old woman. I think of myself more as a “girl” than a “woman,” but I am not a child. I’m a refreshingly quirky and compassionate spirit. I’m an ENFP UU Aries Dragon 4w5 Hufflepuff bookwyrm. I want to be fascinating and interesting. I want to be happy and full of wonder. I want adventure, but I like my comforts. I’m a writer and a book lover. I don’t know what I want to do as a career. I know what I want to do with my life: be happy and make a positive difference in other people’s lives and on the world.