I CAN do it

I was diagnosed with N w/0 C in summer 2014. My daily medication dose was Modafinil (Provigil) 200mg and Adderall XR 40mg. And it worked- I had my life back and I could function. I eventually just learned to deal with the daily ups and downs and resigned myself to these struggles being for the rest of my life.

Fast forward a few years and I’m now a paramedic who had to quit her job on the ambulance because the 24hr/48hr shifts made my life almost unbearable. This is of course because of the N, which of course I couldn’t tell anyone because who wants someone with narcolepsy driving an ambulance? Turns out I CAN do it, and I am pretty damn good at it- I was on the ambulance for 4 years, but I just felt like garbage all the time, even with my medication. So I moved into an emergency clinic 8 months ago and work 12hr day shifts and my symptoms became more manageable. May 15, 2018, is when I started Keto. And today, over a month later, I’m feeling more like a normal person than I ever have before in my life:

-My wakeup time has gone 9 am on workdays and 11 am on days off (both waking up horrible) to 7-7: 30 am while bouncing out of bed and sometimes grilling and meal prepping in my pjs.

-My mental clarity has improved so much that I’ve started studying for the national paramedic certification (the hardest and most prestigious paramedic certification you can get without a Masters or Ph.D.

-My mood has improved so much that I have successfully come off all my antidepressants without any side effects and actually felt BETTER on Keto without them. I have clinical depression, high anxiety, borderline personality disorder, cognitive OCD, and a history of self-harm and suicide attempts. I’ve never been happier!

-My current N medications include 100-200 mg Modafinil 1-2x EVERY TWO WEEKS. You heard it. No more Adderall needed and I barely need my Modafinil (I still have it on hand in case I have a rough day because of my patients’ lives depend on me being 100%).

-And of course, I lost weight. I never have struggled with my weight and have always been skinny with big boobs. But. Food ruled my life. I almost joined a binge eating disorder group on Facebook because it was so out of control-I just didn’t notice it was a problem until my mental health got better and I was able to recognize it. With Keto, I rule the food, it does not drive me. I have even picked up cooking and grilling, which turns out I love to do!

I could on and on, honestly. I’m still playing around with my food, the times I eat, my supplements, and more recently, my workout schedule. I have a long way to go in terms of finding what works best for me. I have plenty of naysayers in my life but I’ve got an even bigger cheer section, my own voice being the strongest of them all.

 

Elise Marie

 

 

Narcolepsy Friends Around The World

One of the reasons I have been undiagnosed for years is the low prevalence of Narcolepsy in Israel- It is estimated that in Israel there are six people with type 1 Narcolepsy.

When I was finally diagnosed, I did not know a single person with the same problem, so the Facebook groups were my address.

A year ago, I flew to Berlin with my husband, where I met, thanks to the Internet, two lovely people with Narcolepsy. We were four people- Me, my husband, an Arabian nice lady and a nice man who speaks only German. Sounds like the starting of a joke? We had such a great time together and even now we still keep in touch. I won’t forget the excitement I felt and how much we have in common!

I learned that Nuvigil is “Vigil” in Germany and that Rolf is symptom-free for almost 10 years, thanks to Xyrem. Wow. I thought to myself. It is a magic drug?!

I also met a young lady from Norway who travels to Israel sometimes, we keep in touch and I’ll meet her in August.

Back to Xyrem-I read about this treatment and after a few months, I even got a prescription!

I am the second person in Israel who received the drug. I’m the first patient on Xyrem for my doctor. So I had to look for answers and others experiences from…Facebook.

A month ago, a cute girl from the Xyrem Support Group sent me a message, that she and her boyfriend would be visiting Israel soon. On the last day of their trip, we met.

I have to say people with Narcolepsy are special and kind (:

An Israeli woman with her poor husband, one American lady with a very nice man who was born in Ukraine, meet. Time passed quickly and we all have such a great time together! After three difficult months with Xyrem, it is so important to hear, face to face, someone who would say to me, “It was even harder for me and I’m glad I did not give up”. To know that the miracle drug may be a miracle (and maybe not) but it will not happen soon and I should, “take the time”.

I will continue to meet more and more N friends around the world, for me it is very important and completes the beautiful virtual support that I get thanks to Facebook.

Dana Harel,

Israel

Adapting – What are you giving your time to?

HAPPY MATTERS

Written by and posted with permission of Dawn Super.
Just got up
Brushed my teeth,
Got some coffee,
Went outside.

I prefer the outdoors
Look up at the sky
Count my blessings
Have a good cry.

The tears help
With the pain
Somehow slightly
Washing like rain.

I have an hour to me
Before the kids rise
Stretch out my body
Rub the sleep from my eyes.

Spend some time with friends
Virtual though they may be
Facebook keeps me connected
To those I love but cannot see.

I only have a few hours
In a day, you see.
Only so many awake
Even fewer, pain free.

My laundry list of ailments
Is usually a surprise
“But you look so healthy”
Is on their lips or in their eyes.

I’ll take your empathy
Living with narcolepsy
And pain every day is
Anything but easy.

“But you always seem so happy”
Comes incredulously, verbally
“Can you be?”
Thought silently.

I didn’t think I could be
Actually
For 41 years
Happiness eluded me

When it finally came my way
I remember clearly the day
The moment, even,
It took my breath away

It took my sadness
My mental tightness
It took the anger
I felt the lightness.

My tears used to burn
Hot tracks down my face
Drowning me in misery
Stealing my grace

I discovered myself again
Through the eyes of beautiful friends
Through music and laughter
And gratitude that never ends

I made friends with my pain
Calmed the quiet riot
Through yoga and meditation
For years I’d been scared to try it

Now here I stand
Well, sit actually 😉
It’s still too early
For my creaky body

I have about five hours
Before my first nap is imminent
Sometimes less, rarely more
Depends on what I do in it

Some things eat my time
Ridiculously quick
Pain, drama, bad news
People being a … jerk 😉

One thing keeps me going
No matter how briefly
And that, my friend,
Is my eternal happy

When all around me chaos reigns
Happy sets the shackles free
Laughter, music, friendship, love
All help me find my way back to me

If you’re only awake
Twelve hours a day
Why on earth
Give any away?

When you only have
Ten hours for you
Why let misery
Have a few?

Down to eight measly hours.
All day. There’s barely time to pee
Much less drink 8 glasses of water
To stay “healthy”

So what do you give up
When you have so little time?
Instead think, what makes the cut?
Choose only the sublime.

In my 8-12 hours a day
I still have to do things that get in the way
I work, kids to feed, bills to pay
Chores, meals, pets all before I can play

I rush like a ferret
Doing all I can do
Who has time
For negative doo doo?

Happy matters
Is my philosophy
Not just a kitschy phrase
It’s a necessity.

I fill my life with love
My man, my kids, my dogs, my friends
When you’re always grateful
The list of things to love never ends

You may have a few more
Hours a day than me
Count them up
And you’ll see

What are you doing with yours?
I ask you now politely.
How many hours a day
Do you give away to misery?

Read more of her blogs on: http://goingbeyondcoping.com

Narcolepsy, dating and relations – By Grant Beach

Narcolepsy, dating and relations – By Grant Beach.

So, I rarely ever post on internet due to how “busy” (lazy?) I am, but as I sit here on my porch, basking in the Atlanta sun, smoking my cigarette and drinking a beer (chocolate milk, I’m sorry I lied) I felt inspiration engulf and wash over me.
So, I’m going to carve off a little slice of the internet and put my thoughts to font for a second.

I met my beautiful girlfriend Jackie well over a year ago. We met on Tinder of all places. I know, I know. Tinder is what happens when you feed eharmony a Bud-Lite Lime-a-Rita after midnight. Neither of us were looking for anything more than going heel’s to Jesus with a hot person. However, when I met her, something inside me began to hum. Over time that hum turned into a symphonic scream that I couldn’t turn off. I didn’t want to. I was fucking hooked. And what made it even more exceptionally bad-ass, so was she.

Admittedly, I had just came out of yet another 6 month stint in county and was only able to muster just enough energy to fully commit to my substance abuse. I was like Noah in the Notebook, if Noah grew up in a Methadone clinic. I was far from a prize. I was a tin foil ring at the bottom of a Cracker Jack box, but I had potential. Yeah, I had potential. Throughout it all she saw something in me. An illumination of the soul I guess. Not so much a glimmer, but a super nova of sorts that I shut out completely. The turning point was when she sat me down, batted those beautiful lashes and expertly convinced me to get a sleep study done.

I knew something was wrong internally since I was a kid, but like most Irish males I just chose to live with something being wrong until I was a corpse. So, reluctantly I went. She was a saint through it. While I was hooked up to a plethora of electrodes and wires, looking like a science experiment, like the fucking Lawnmower Man, she stayed by me. She stayed by me through everything. Through my CONSTANT nightly battles with sleep paralysis, where I would leap out of bed confused and disoriented, not even knowing where I was; she stayed when I would basically fall asleep mid conversation repeatedly; she even stayed when I would become vehemently agitated at my obsessively persistent grogginess and was not entirely lovable in the moment. She stayed with me. She never missed an opportunity to plant kisses on my forehead and run delicate fingers across my back.

This isn’t a story about how I lost someone who was always there for me. This isn’t a musing about how you never know what you have until it is gone. Fuck that. I’ve been the main protagonist in plenty of those stories for way too long. What I did was change. Not who I was as an individual, but my non working patterns that kept me from shining. I have been sober over a year. I have a job. I have good, supportive friends, I have stayed out of trouble and kept my nose clean all the while showing her how much I love, like, appreciate and respect her verbally, physically and emotionally every god damn day in my life. I am receiving my first batch of Xyrem soon. Another notch in the ol’ belt of taking charge of my life. We have a beautiful apartment filled with laughter, tears, sex and random nerf gun battles and I couldn’t be more copacetic.

If I had one piece of advice it would be to never take ANYONE for granted. That love is not guaranteed to be there when you wake up. You have to work for that shit. Water it every day and keep swimming.

PS – If you swipe Up, Up, Down, Down, Left, Right, Left, Right, B, A on Tinder you unlock your soulmate.

The narcoleptic brain – A beautiful mind- by Brenda Moore

The narcoleptic brain – A beautiful mind – by Brenda Moore

Have you ever overheard someone talk about their dream they had the night before and thought Buddy, you have no idea what it means to have had a crazy dream until you’ve heard one of mine!  Are you constantly disappointed when a book about dreams is published because it simply doesn’t capture the type of experience you’ve had as a narcoleptic? Were you too scared to tell someone that while you lay in bed wide awake yet unable to move, strange noises and the feeling of an evil presence had been in your bedroom? These are just a few of the many frustrations I’d felt in my youth, which led me to say, One day I’ll write my own book about dreams and sleep.

 

The nightmares consumed my youth almost to the point of asking my priest for help. Then, I discovered “dream powers” that allowed me to fly, make objects appear out of no where, and even take control of the dream content. My “dream characters” and I got to know one another after returning to the scene during recurring dreams. On the other hand, the demons got to know my dream power weapons and adjusted to keep me in terror.

 

Sleep paralysis was a discovery that I had become fascinated with as a young adult dealing with a combination of sleep deprivation and life hardships. Fear and worry didn’t always bring feelings of an unwanted presence in the room. After an amazing sleep paralysis interaction with my deceased mother by hearing the sound of her voice and feeling the warmth of her hands holding mine, I craved the opportunity for more episodes.

 

The psych student in me loved to examine the nature behind lucid dreaming and sleep paralysis, while my simple humanity longed to explore and even understand the spiritual connection I’d discovered. My lifelong experiences within the mind of a narcoleptic and education in Polysomnography allowed me the privilege to finally share my beliefs and write my book about dreams and sleep.

 

I’m pleased to present 40 Winks: A Narcoleptic’s Journey through Sleep, Dreams & Spirituality as my contribution in hopes to educate people on dreams from the mind of a talented dreamer.
Go get it on Amazon:
40 Winks: A Narcoleptic’s Journey Through Sleep, Dreams & Spirituality

 

Cataplexy… by Leon Lukassen

Cataplexy… by Leon Lukassen

I have posted two stories so far in the Dutch Narcolepsy Group. One about sleep paralysis and one about dreams / nightmares. And apparently people like it. So here’s my 3rd attempt.

A very important symptom of narcolepsy I have not exposed yet is cataplexy.
Cataplexy, according to the books “abrupt temporary loss of muscle control during strong emotions.”
From my point of view, that should change to “abrupt temporary loss of muscle control during unexpected emotions”
Because I can be very emotional without me getting cataplexy.
As long as the tension builds up slowly so that I can continue to control my emotions.
But for example, when I’m in the supermarket, and completely unexpectedly run into an old friend while I was just hesitating whether I should buy white or brown bread …
Then suddenly a lot of different feelings pile on in me and I feel my knees nodding or my speech will blur. Like I speak with double tongue and my face has idiotic tendencies.

My mother once said: “Don’t get so nervous!”
She obviously saw my face not fully participating while having a discussion of no meaning whatsoever.
So my experience with cataplexy is certainly not that I will fall if someone screams “BOO” behind my back.

I think I’ve suffered from this since the age of 18.
And so I taught myself to especially not to be too emotional.
But that has resulted in the view of my surroundings that I am “indifferent”.
Emotions are everywhere and if you do not show much difference because you suppress the things from within then you are seen as much different and so literally indifferent.

Fortunately, there are people who know me. I cherish them dearly!

Blog – by Annechien

Blog – by Annechien

Marriage

Confession: I have never written a blog before, this is all quite new to me. But my sleepy sister asked me, and hey, I don’t back down from a challenge.
Whilst on the subject of confessing: I am married! Great right? Wrong, I am a child bride, the day I was born was the day I got married. I got married to Mr. DSPS and I can’t ever divorce him. We’ve spoken our vows to each other almost 36 years ago, and “till death do us part” is serious business in this twisted relationship of ours. Mr. DSPS tells me what to do; he tells me when I can go to bed, when I can get out, when I can eat my dinner/ breakfast/ lunch, when I can go to a party. He also keeps me from being active with my children, from having a career, from studying and learning. Mr. DSPS is an abusive husband, and I can never break free of him. I’ve tried to delude him with pills, with alcohol, with exercise, with food restrictions, and you know what, he is a sly bastard. Within days he knows what is going on and (like the Empire) he strikes back. He controls me, makes me tell lies to the world, makes me feel like I am a second rate type of person, makes me feel like I can achieve nothing.

Now, I am somewhat of a successful person that lives with Mr DSPS; I am married married to a wonderful man, that supports me (and is also somewhat of a nightowl), I have a job; not the job I wanted, nor the job I have the brains for, but a job nonetheless. I am raising two children; sure it takes a village and the whole village (a.k.a. My mom and a nanny) are constantly in my house, but I am raising them. Raising them both into extraordinary persons, with a huge imagination, believing that faeries still exist and miracles do happen. I am somewhat alive during the day, though the world sees my version of an active person. But I am so tired. So deeply tired. It is encased in my bones. It is, despite what I want, what defines me. I am Annechien, 36 years old, and if I yawn, it is not because I think your story is boring. It is because I am the embodiment of tired. Normal sleepers nag to me about being tired and I want to smash their heads into a wall. They want me to understand what they are going through without willing to understand what I am going through. Let me tell you what: unless you have also stood in front of a window, debating whether to jump or not, you do not know what it is to be tired, normal sleeping person!

Now, this sounds all so very depressing but there is an upside to my abusive marriage: I have met so many wonderful people! People who are also married to Mr. DSPS, people that married his evil twin Mr. Non24, people with Narcolepsy; nightowls! And I love my nightowl community, I love that we howl at the moon every night, I love (comparing) our combat stories, we lick our wounds together. We salve our souls being around each other. We laugh till we cry or go into a cataplexy attack, one look and we know what ails us and what binds us. Amongst ourselves, we are free of our marriages. Amongst you, I am me!
So, Mr DSPS kicks me down a lot. I have you! I have you all, I am you all, you are all me! And while I may go down kicking and screaming, I know it has been one hell of a ride and, in a weird way, a great one. Cause I have had the privilege to know you!

asdaef