Full Speed Ah—

It was full steam ahead until I was hit with exhaustion and I feel like I’ve been bowled over/ fell down the stairs.

I just want to take a nap but I can’t because I have too much to do.

I think the most frustrating thing about having narcolepsy is the fact that you are going full speed ahead and then BAM! You just want to sleep. It’s never the same reason why; it’s never logical.

It is like a freak storm coming in from nowhere.


Suddenly Sleepy Saturday

We all could use a little sleep
We all could use a little sleep

Sleep Awareness week was this past week.

It’s fitting that this week, I had to confront some demons regarding sleep and how my disease affects me (even though I hate admitting I have weaknesses).

When I tell people I have narcolepsy I describe it by saying I am tired all the time (what do I mean by that?). They shrug it off like no big deal and so, I usually do as well.

However, lack of sleep makes daily life overwhelming. It causes social anxiety, social impairments, lack of decision making skills as well as rage.  Why rage? When you are tired your body resorts to keeping you awake. The drug of choice floats in your adrenal glands. How does your body send out those endorphins?

The best way is to trigger the fight or flight response. Which means that suddenly you want to destroy the world because someone cut you off. Now, that’s not really how you feel, but that is how your brain interprets the rush of hormones surging through your body. You can’t help but scream obscenities at the idiot driver in front of you and you are out for blood. In the passenger’s seat your grandmother is desperately looking for a way to exit the vehicle while it is going 80 mph.

Adrenaline shuts down your frontal cortex because when you have to fight or flight it makes sense that you don’t need your higher brain questioning your decisions. You have to commit to what you decide to do. You can thank our ancestors for that subtle shift in brain chemistry.

Where are my resources for this information? Where did I find this out?

Simply speaking, I know this to be true because I live it every day. I live through these outbursts that make no sense. Rage shoots through my veins and I don’t know why; but I feel alive and 100% committed to my decisions which aren’t always smart. Euphoria hits me and I feel like I am on top of the world (sounds a bit like bipolar, right?) but the body can’t sustain high levels of adrenaline and so like any junkie I crash and exhaustion hits me. All the while, my mind looking for the next offense so that I can feel alive once again.

My body is a chemical war zone. It is inherently unbalanced because of the lack of hypocretin and my overzealous white blood cells. The upside- I rarely get sick but I’d prefer a few colds over not having hypocretin cells.

The other thing about narcolepsy is cataplexy. It is where the mind trips over itself. Without hypocretin cells my mind doesn’t always interpret stimuli correctly. Sometimes it can’t interpret stimuli at all and so, it sends out a signal to freeze while it tries to figure out what is going on.

The mind stumbles into a void between waking and sleeping- our conscious minds become trapped as our bodies fail us. We have no control over whether or not we stay standing or are able to speak. For us, we haven’t skipped a beat, but to those around us we stop speaking and stare into space or worse yet, we fall to the ground for no apparent reason. If I were watching me from the outside I would probably assume that I had some serious mental illness issues or that I was being dramatic for attention. Isn’t it sad that people see those with sleep disorders as fakers or wack jobs? If only they knew the truth. If only they knew how much we wanted to be “normal”; to be able to function without having to worry about whether or not a situation will send us into a narcoleptic/cataplectic attack.

One could say that our minds are too cerebral; too fixated on what lies beyond the physical world. One might suggest that our minds are so busy exploring life beyond reality that it forgets to take care of its physical self.

In truth, those of us who live with narcolepsy are stronger and far more resilient than most. For we can do exhausted what you do fully charged. We are able to conquer worlds while handicapped. Truly, those of us with narcolepsy should be proud of all we can accomplish for we’ve been chosen to prove how capable we are.

If you agree please share. If you don’t agree, tell me why in the comments.


The slippery slope

It’s easy to fall down the slope when the footing disappears.

So easy to kiss your cares good-bye and to demand that fate forget you.

How I’ve cursed the wind and snow.

Even as I write this I wonder what craziness will befall me.

For what is good certainly fails

and left behind is misery.

At least, that is what I’ve noticed.

These past few years

I wouldn’t want to redo.

Well, that’s not quite true.

There are parts I want to relive.

Like the day my foal was born.

To see her small and brand new-

well, that was a most glorious gift.

To taste victory

when everyone said give in.

To keep fighting

when most would have backed down.

My victory is near.

I can taste it in the air.

“It is always darkest before the dawn…

Shake it out Shake it out”

I could have walked away from this path.

I could have decided to take it easy.

However, that just isn’t me.

Soon, you will see.

Frantically looking for quick money

Well, I feel like I’ve been fighting people and then I saw this on youtube and I have to say that I think Peggy would understand how I’m feeling.

I am taking this week to relax but it’s turned out to be a stress fest. Why?

Because as always this *one* didn’t budget correctly and believed that her luck would change.

I have to laugh at myself because obviously, my luck is horrible. I mean I get what I want but I never have the funds to pay for it. I need to clarify my statements only give me what I can afford financially. Please, I just want financial stability.

Too bad my mind is off on an adventure and it forgot to take the rest of me along. Ok, so why am I even writing this? Am I just ranting? Yes, and No.

Tips to find Freelance work:

For the past two days I’ve been frantically searching for a way to make some quick bucks (my mom said to sell stuff but I don’t want to go digging around to find hidden gems) so I’ve put my resume up on freelancing sites like elance.com, and I’ve scoured the internet for freelance writing opportunities. In my mind I keep telling myself to submit to local newspapers and magazines but I’m too afraid.

I’ve submitted to a few publications I found on poetsandwriters.com there are opportunities out there but I am realizing that I don’t have what it takes. I’m struggling and I think I have to give up. My body can’t take the abuse anymore.

Oh, if only my life were a work of fiction. Then some mysterious suitor would appear and pay my horses’ board and buy them hay. I’d be oh, so thankful and it’d be like a 1950’s movie. Except that I am more of a Peggy Carter who doesn’t want the help of others. She was a one woman army and I feel the same way. However, she did let others help her and I guess I need to do the same.

My thoughts are chasing their tails and I’ve had enough of this roller coaster ride. If only I had better luck. Then the lotto ticket I bought today would have been a winner. There was a millisecond when I thought I had won. This hope and elation filled me but was snuffed out when I realized I was mistaken. That is the most bitter feeling of all.

A New and Refreshing project

One of the things I love the most about writing is immersing yourself in the world of the book. At this very moment I am working on a new book. While you might roll your eyes I’d like to remind you that I’m still working on my other ideas.

This one is a bit different. I’m adding things into it that I normally don’t add and I’m taking some risks. Please let me know what you think.


Duchess of the Dark Support

Wow, it’s been a busy few weeks. I don’t know where the time went. All I know is that today, I am exhausted. I have been running on fumes for a while now. It has finally caught up with me. My narcolepsy is bad. Right now, I am at the point where I feel like saying who gives a F**K and just walking away.

Oh, enough with my rant.

Here is what I wanted to ask you all to check out: http://www.gofundme.com/nnbp54

That is a gofundme for my book Duchess of the Dark. Yes, it may seem like I haven’t paid much attention to my writing- which is true. I haven’t. However, I have been thinking a lot and I want to write more.

Which is why I created that gofundme because I want to make sure that book is the best it can be and I know I will need to get it polished before I can submit it to a literary agency.

Right now I am in a gap. I quit my old job because I got a new job that I’m super excited about. In the interest of professional privacy (and making sure I don’t get myself in trouble) I am not going to write what my old or new job is. Just know that I am moving up in the financial realms. This gap week is stressing me out because I don’t have the money to pay the bills. At my old job I get paid every two weeks and so I made the decision that not working this week is more important because I needed some mental health time.

Which leads me to: This week is National Sleep Awareness week. This coming saturday is Sleep In Saturday. You can help support sleep disorder research by sleeping in! Check out http://julieflygare.com for more information.

Oh, and I am exhausted. I want to do more. To contribute more but at this point in time I’m doing all I can to keep my eyes open.