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.

The Problem with Essays

I am writing a paper which is due today. I started it last night. And this is what I was thinking:

I am supposed to be working on my 3 page Great Gatsby paper for American Lit—which is due tomorrow (Wednesday). It is 21h00 and I would rather be reading. Doing Linguistics homework for Thursday, reading, watching Bones, taking a shower, knitting, looking up various things—blog hopping, etc. That’s all. Not this paper. I have stated what I believe the focus of my chosen passage happens to be. It’s all about perception. Now that I’ve said that, I have nothing left to say. I’ve already written some very crude ideas…stream of consciousness almost. All the ideas have to do with my topic are crude and rough and raw, and I do not have the patience to polish up the wording/structure. I just want to put all the ideas and content down on the page and have done with it.

That’s the problem with essays; they’re painstaking. You can’t just write down what you think. You then have to organize, revise, reorganize, and nit-pick everything. It takes time. And when you are doing an assignment the night before (not because you intentionally left it to the last minute, but because you had other homework due sooner and wanted to make sure that that was finished first), you don’t have the luxury of taking your time and nitpicking. You only have the chance to generate ideas and put them on paper and then read through what you’ve written and fixed major errors.

Write or Die!

NaNoWriMo

I am participating in NaNoWriMo this year. NaNoWriMo is where you write 50000 words in 30 days. Last year and the year before I said "I'm too busy this year; I'll participate next year." So, this year, even though I am once again very busy (Novembers are always busy!), I am participating! So far I have 4606 words and if I were on track (1667 words a day) I would have 13333 words. As you can see, I am behind. But I will not let that stop me!
But Why?
Because it forces the person to committ to one story, to write every day, to work on getting out words, to not worry about if it is "good enough," to let creativity abound, to go after inspiration with a club, to turn off the inner editor, to get into the habit of writing every day, to make "some day" (as in"someday I will write a novel") today, to be dedicated, to Prove you can do it, to see peoples faces when you tell them that you are going to write 50000 words in 30 days. Because you can.

And so, because I am behind, I had better get cracking!!!!

Anti-Inspired

Oh where, oh where, did my inspiration go?
Someone once said that you can't wait around for inspiration, that you have to "go after it with a club." But how do you propose I do that? Where do you go looking for it?

I miss writing. But I can't find inspiration. It taunts me sometimes, hovering close by, like slippery cobwebs. They slip through my fingers or break completely. I'll start writing and then ...nothing... And what I have isn't all that great either.

I'm not a bad writer; I'm just a bad thinker.

"The Gathering"

This is a poem I wrote last week. It's not as coherent and cohesive as I'd like, but it's not bad. It's quite appropriate for the time of year actually. I wonder if it would work better as a prose piece; there is no rhyme, verse, etc. I really like the image it gives. I saw it clearly and that's where the poem came from. The question is: Does the poem present the image and emotions as I saw and felt them, or something different? Only the readers can tell me.

The Gathering

Soul by soul they stand,
Wind swirling through gossamer robes.
Ethereal voices sigh,
Creating tangled webs of sound
Humming above the trees.
A Gathering
Of witches, angels, demons, ghosts.
Heavy fog embraces them,
Stirred by the wind--
Shadows dance, shades sing
With the magic of the Gathering.
Night eternal filled with memory;
Each soul a story of the past,
each spirit witness.
Magic in Gathering, gathering in magic,
Held to Earth by night and fog,
Wind giving them voice.
The Gathering calls.

_La_Peau_de_chagrin by Honore de Balzac QUOTE

"Ici, l'on peut écrire soi-même."

(Here, one can write one's self.)