30 Things About My Invisible Illness You May Not Know

Invisible Illness Week was back in the fall but I did not post this then.  I'm posting it now because...why not?

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: narcolepsy
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: looking back, probably since childhood, but severely since 2009
4. The biggest adjustment I’ve had to make is: going to bed when my body tells me I need to
5. Most people assume: I'm lazy, weak, complaining or making excuses
6. The hardest part about mornings are: everything!  Waking up is the hardest part of the day.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my phone
9. The hardest part about nights are: when I have vivid hallucinations that scare the crap out of me.
10. Each day I take 7 pills & vitamins.
11. Regarding alternative treatments I: use essential oils, massage, and acupuncture
12. If I had to choose between an invisible illness or visible I would choose: visible for sure.  Most people don't understand how much narcolepsy symptoms run many aspects of my life and it would be much easier to have something physical that I didn't have to explain.
13. Regarding working and career: teaching is exhausting...so is narcolepsy
14. People would be surprised to know: sleeping doesn't necessarily make me feel better.  It's all about what part of my sleep cycle I wake up in.  10 minutes can do the same as 10 hours.
15. The hardest thing to accept about my new reality has been: the fact that I cannot do everything and have to learn how to say "no".
16. Something I never thought I could do with my illness that I did was: still searching for an answer for this one
17. The commercials about my illness: show narcoleptics as sad zombies...I prefer to consider myself a human, but whatever.
18. Something I really miss doing since I was diagnosed is: playing sports, going out with friends and staying up past 9pm
19. It was really hard to have to give up: a social life
20. A new hobby I have taken up since my diagnosis is: sleeping
21. If I could have one day of feeling normal again I would: not have to leave somewhere early to go to bed
22. My illness has taught me: patience and that I am truly loved
23. Want to know a secret? One thing people say that gets under my skin is: "are you really that tired?"
24. But I love it when people: understand and ask if they can do anything to help (the answer is usually no, but it's nice to be asked)
25. My favorite motto, scripture, quote that gets me through tough times is: 2 Corinthians 4:7-11
26. When someone is diagnosed I’d like to tell them: baby steps
27. Something that has surprised me about living with an illness is: sometimes it has to get worse before it gets better (still waiting for it to get better)
28. The nicest thing someone did for me when I wasn’t feeling well was: too many to list!  Mostly just words/cards of encouragement and spending time with me
29. I’m involved with Invisible Illness Week because: invisible illnesses suck, but awareness and support makes us all better
30. The fact that you read this list makes me feel: supported and empowered.  Thank you.


Time for a nap...
LS

Essential Oils and Acupuncture

This past week it has been shocking to me how little research there is about narcolepsy.  I am currently reading a book called Psychosocial Aspects of Narcolepsy that has a bunch of studies and, let me tell you, it is thrilling (sense the sarcasm).  The overall idea in all of the studies is the effect narcolepsy has on the quality of life in the people who have it.  I have found a few things that have helped me, but these things have absolutely no research basis...except my life.

Essential Oils
I got started on essential oils when I was sick and I was blown away at all of the uses.  I started doing some research about how it could help.  There have been some studies on the brain that suggest that smells actually do not help you sleep, but I have found that they help me calm down and relax and therefore fall asleep.

I have 2 diffusers, one used as I fall asleep and one that starts to diffuse about 30 minutes before I wake up.

At night I use general calming oils: lavender, ylang ylang, vetiver, bergamot, marjoram, etc.  I generally fall asleep with doterra Serenity.

In the morning I diffuse a mixture of peppermint and wild orange to help wake me up.

I have also found that peppermint, lavender, and lemongrass work wonders for my migraines.

Acupuncture
I started going to acupuncture to help with my migraines but I have found that it has helped tremendously with my excessive daytime sleepiness (EDS).  When I first went in, my doctor didn't have much knowledge of narcolepsy.  He focused mostly on my symptoms of migraines and fatigue and that has been the most beneficial.  I truly felt like a different person after my first few treatments.

At this point in my life, I will try just about anything.  I have no idea if these things actually help my narcolepsy symptoms or just my overall well being, but either way, I fell better.

Time for a nap...
LS

An Open Letter to my Friends

Over the past two years or so, my narcolepsy has gotten worse.  It is ironic that I have decided to write this at the end of the week where I have felt the best since being diagnosed, but I feel like it is important.  I make a lot of jokes about narcolepsy but there are some things that I need those closest to me to know...so why not write it in a a blog?

I need you to know that I feel like I am not in control of my own life.  As my symptoms get worse, I feel like there is little that I can do.  For those of you who know me best, you know how much I hate this.

I need you to know that I will always be your token narcoleptic friend.  Narcolepsy has to be good for something right?

I need you to know that I often downplay how I feel, so if I say I'm tired or have a headache, I really do.  I hate feeling weak and I feel weak all the time.

I need you to know that when I turn down hanging out or leave somewhere early, it is extremely hard for me.

I need you to know that every day is not the same.  There are days I feel fine and there are days I feel completely dead, and I have no way of knowing how I will feel on a given day (or given minute).

I need you to know that my depression and anxiety is only made worse with narcolepsy.

I need you to know that I 100% understand why I get left out of plans, but that doesn't make it hurt any less.

But above all, I need you to know that I am still the same person who would drop anything for any one of you...no matter how tired I am.

I have an AMAZING support system.  Thank you guys for being my strength.

Time for a nap...
LS

A Day in the Life...

Many people have asked me why I am writing and why now.  I want to make it very clear that this blog is not about sympathy, it's about helping people understand what is going on in my life and in the lives of people with narcolepsy.  I think that most people, even those closest to me, don't understand how I feel daily and I think it is important for me try to explain.

Before I get started I want to share a couple of images about narcolepsy and the misconceptions:

Time for Bed
Let's start with bed time since that is the best time of day in my world.  I could literally come home and go to bed at 5:30 or 6:00pm.  I try my hardest to make it until 8:00pm because that seems like a socially acceptable time to go to bed.  For a long time it bothered me that I went to bed before most of my students, but I quickly got over that.  My roommate and I call it "Life at the Lorax" when she is doing something like making dinner or watching TV and I am going to bed.

The truth is, I have been thinking about going back to bed since I got out of it.  I generally fall asleep pretty quickly and don't really move at all.

Sleep Phase Hell
One of three things generally happen after I fall asleep.  I would say it's like a choose your own adventure book...but I would always choose the same option that it doesn't happen that often.
1. I fall asleep, stay asleep and life is good.  (20% of nights)
2. I have a vivid dream or sleep hallucination.  This is often just a vivid dream that happens while I am asleep.  This turns terrifying when hallucinations are involved.  I believe it is because I am coming in or out of REM and some sort of hallucination happens.  There have been times where I have "seen" things in my room and have come to with my bed or room completely torn apart.  Usually this only happens once a night, but there have been nights where it has happened multiple times. (30% of nights)
3. I wake up a few hours after I fall asleep and I am WIDE awake.  I cannot fall back asleep until shortly before I have to wake up for the day. (50% of nights)

Waking Up
The worst part of my day.  If my alarm goes off during REM sleep, it is like waking a dead beast.  I feel like I am waking up from hibernation.  If I wake up during non REM sleep, it is still extremely hard to wake up.

Getting Through the Day

 

I am generally good to go for 3-5 hours after waking up, showering and taking meds.  This is the only time that I feel like a normal human being.  Once I start to crash, I crash fast.  It feels as though I didn't sleep the night, or four nights, before.  I space out, am extremely foggy, I forget things, I can't formulate thoughts or find words, I get angry easily, and I have headaches.

The absolute most frustrating thing is not being about to do anything and to want to sleep but know that sleeping actually isn't going to fix anything.  It is extremely frustrating to me to not be able to do the things that I want to.  My life has changed, friendships have changed, and I have changed.  Narcolepsy controls my life, and I would give anything for it to not.

It is hard to put words to the way narcolepsy controls my life.  The thing that I want people to know is that it is a neurological disorder and not only a sleep disorder.  It's an invisible illness which I did not expect when I was diagnosed.  I feel lucky that I am without cataplexy and am able to drive and live my life independently.  I cannot imagine feeling this way constantly and living with the fear of having a catalexy attack.  

Narcolepsy sucks, but I will continue living my life trying to figure it out.

Time for a nap...

LS

 

What is narcolepsy?

 Narcolepsy is a neurological disorder.  I have narcolepsy without cataplexy, with effects about 30% of narcolepsy patients.  Instead of trying to explain narcolepsy on my own, here are some graphics that will do it for me.

Time for a nap...

LS

Are you there God? It's me zzz......

When I was diagnosed with narcolepsy 6 years ago, I never thought it would dictate my life as much as it has.  I thought a diagnosis would mean freedom...but instead it meant an uphill battle, and one I often feel I am losing. 

The History
Let me back up a bit to 2009.  I was a senior at the University of Oregon and I was driving back and forth between Eugene and Portland every weekend preparing for a mission trip to Haiti.  It was during this time that I learned how insanely terrifying those little bumps on the side of the road are when they wake you up and you realize they probably saved your life.  "Thud, thud, thud" is forever a sound that will stop my heart and get my adrenaline pumping.  Unfortunately, I am extremely stubborn and continued to make the drive thinking I was just tired but fine.  THANK GOD He had more for me in this life and kept me and those around me safe.

Fast forward to 2010.  I was 22, in graduate school and student teaching.  I started to notice that I was genuinely exhausted.  I was sleeping 10-12 hours a night, sleep walking and having extremely vivid dreams and hallucinations.  When I got home from school, I would lay down on the couch and wake up hours later.  I was so tired that I was having trouble staying awake at school when I wasn't teaching.  I really didn't think much of it until I started falling asleep in traffic...mid conversation with my friend I drove to school with.  At that point I realized that something was wrong and I was putting other people in danger.

My doctor didn't really know what to do with me (which is a common theme) so she sent me for a sleep study.  I called to schedule in May and they told me the first opening they had was September.  When I told them I was falling asleep driving, they quickly found an opening immediately. 

The Sleep Study
My sleep study was conducted at the hospital where my mom worked.  I was extremely surprised how comfortable the bed was...a stark contrast to the institutional look of the room.  I was hooked up to wires all over my head and face.  I would undergo a traditional sleep study overnight.  If I had sleep apnea, they would hook me up to a CPAP machine and we would have our answer.  I did not have sleep apnea so I got to stick around the next day for the Multiple Sleep Latency Test (the main event, as I like to call it).  During the MSLT, I would take a 20 minutes nap every 2 hours.  This was super annoying.  At 8, 10, 12, 2, and 4 I would get hooked up for a nap, I would sleep for 20 minutes, then I would hang out until the next one.  I had to keep the wires on my head hooked up in between naps.  I would walk over and visit my mom in between, but I looked absolutely ridiculous. 
Exhibit A:

The Diagnosis
I'm pretty sure the story of my diagnosis is similar to someone who caught a fish and tells how big it is, and it gets bigger every time.  I'm sure every time I tell it, my stats get more severe.  So, for research sake, I pulled out my sleep study results for this (which are kept in a fire safe lock box so I never have to do that damn sleep study again). 
During the naps, I fell asleep in an average of 2.3 minutes and hit REM in an average of 9 minutes.  A normal person falls asleep in an average of 15 minutes and hits REM in about 90 minutes.

I remember sitting in the doctor's office and she sat there mumbling numbers to herself and typing them in.  All of a sudden she looked up at me and said "well, you have narcolepsy."  She was pretty excited about it because I think I was her youngest patient by about 40 years but I was skeptical.

A Bumpy Road
I started my narcolepsy journey on Nuvigil and it was awful.  I lost 7 pounds in 3 days and felt so drugged.  It was as if everything around me was moving super fast and I wasn't moving at all.  We changed to Ritalin with two 10 minute naps a day.  The Ritalin was fine except I had a huge crash in the afternoon and I didn't have a regular work schedule...and how they heck are you suppose to nap twice a day for 10 minutes?  A few years later and after fighting with insurance I finally got on Ritalin LA, which at least took away the afternoon crash.

What's up now?
I am now 28 years old and I teach 3rd grade.  Narcolepsy effects my life in so many ways and, honestly, it's kicking my ass. 

I made this blog in 2010 after I was diagnosed and never really used it.  So, why now?  Narcolepsy is a life long journey and it is a journey that not many understand.  My goal is to document my journey for myself as much as anyone else.

So, whoever you are - my family, a friend, a co-worker, a narcolepsy warrior, whoever - I hope that my words can be whatever you need them to be.  Encouragement. Awareness. Empowerment. Humor (because the life of a narcoleptic is filled with laughs...and naps).

Time for a nap...
LS