Tag Archives: Narcolepsy

Living with Narcolepsy AKA Today, Life Sucks

This blog post is brought to you by frustration, irritation, and anger.  As a generally positive person, I don’t usually succumb to these feelings.  But as a recovering academic with a PhD in psychology, I know full well that when I have these feelings I am at perfect liberty to actually feel them.

Case in point: Dr. Daniel Wegner’s classic psychology study on suppression.  In this study, which was published in 1987, Dr. Wegner asked undergraduate psychology students not to think about a white bear.  If they thought about the white bear, they should ring a bell.  Then, he told them to go ahead and freely think about a white bear if they wanted to.  These students ended up thinking about a white bear more often when they were “allowed to” than a control group who had not been asked to suppress their thoughts in the initial testing round.

So today, I am feeling my feelings and let me tell you I am blankety-blank sick and tired of having narcolepsy. It has been weeks since I’ve had a good night’s sleep.  I can’t tell you the last time I woke up after 8+ hours of sleep and didn’t have deep dark caverns under my eyes that would make a racoon jealous.  It takes me hours (that’s right, plural) to get out of bed some mornings. I have even broken one of my cardinal rules of good sleep hygiene and I’ve started writing and reading in bed in the mornings.  It’s the compromise I have to make because I have no energy to force myself out of bed.  Dreams about snakes and death and being stuck in never-ending time loops will do that to you.  Plus, it’s dark outside and I wake up before the dogs, so I don’t even have external motivating factors to get out of bed.

This morning while meditating at the kitchen table I fell asleep twice.  I had only been out of bed for 20 minutes.  I had already spent three hours being awake.  I suppose I should be grateful because I still manage to be productive – I finished Wild Things: The Joy of Reading Children’s Lit as an Adult, I wrote over 400 words on a new manuscript I’m working on, and I wrote a prayer for my daily devotional manuscript for people who struggle with chronic exhaustion.  Yet, I am not grateful.  I am mad.

In my quest to treat narcolepsy with lifestyle and diet choices, so I do not have to take medications with other effects such a paranoia, delusions, bedwetting, suicidal thoughts, anorexia, etc., I have cleaned up my diet, meditate for 20 minutes at least once a day, mostly twice, strength train for 20 minutes six days a week, and run interval cardio drills six days a week (I’m now up to five full minutes).  I do not eat white potatoes, my favorite food (well, French fries) because they are a night shade.  I limit technology at night.  I used to wear amber glasses around the house at to block out additional blue light until I left my glasses in Nashville.  I wear a sleep mask and ear plugs.  I keep my room as cool as possible.  I do not drink caffeine or alcohol (although that one is super easy for me because I think alcohol tastes gross; most times, I can’t even stomach the smell of it).  I go to bed relatively early and I get up relatively early.  WHAT MORE CAN I POSSIBLY DO?

It flat out sucks to be doing everything “right” and still struggle with the one thing I desperately want more than anything else.  Is this my cross to bear?  Am I missing something?  Is there some physical, emotional, or spiritual component at play?  Do I just accept it and move on, do the best I can?

As I typed the above paragraph, I am reminded of another psychologist, Elizabeth Kubler-Ross.  She developed the five stages of grief: denial, anger, bargaining, depression, and acceptance.  Perhaps that’s what I’m experiencing now: I am grieving the loss of hope that I will ever get a good night’s sleep again.  Realistically, that may happen.  And part of me thinks it’s so silly to be crying as I type this because there are people living in this world right now without access to any healthcare, without love, without hope, without goals and without dreams.

Should I really play the what sucks more game? Seriously, what sucks more than not getting a good night’s sleep for, well, years now?  Okay, now that I’m thinking about it:

Terminal illness

Sexual assault

Child abuse

Animal cruelty

Poverty

Famine

Genocide

Homicide

Mass shootings

Illiteracy

Terrorism

Climate change

I have to admit, I do feel a teeny tiny bit better when I look at this list, though now I am questioning what it says about me as a person that I use things like climate change and genocide to make myself feel better.  I can’t win.

The truth is, I don’t think any of us can win.  We all have struggles, and they are all personal and individual to us.  I’ve chosen to share my struggle today in the hopes that someone somewhere may be reading this and feel like they have a comrade in arms going through the same tumultuous experience we call life.  Narcolepsy is frustrating, awful (comparatively speaking), and a part of my life.  It’s okay to hate that part.  The important thing is to know that the hate and frustration are feelings.  They are not permanent and they are not who I ultimately am.

If you believe in prayer, I would appreciate some.  If you don’t, then just send thoughts of baby polar bears my way because those of you who read my blog know just how much I love bears.  I would have been awful in Dr. Wegner’s experiment.  They would have had to throw out my data – why is this woman thinking about white bears every five seconds?

And special thanks to my husband, who is incredibly supportive through all the narcolepsy ups and downs.

Memoir Monday, May 16th, 2017

Sugar

I felt rather dismayed when I saw almost a full month has gone by since I lasted posted here. I’m disappointed in myself because when I started this blog in August 2016 the goal was to write multiple times a week, every week.

Right around the New Year, I began to let posts slide. I rationalized that because of the holidays, I could take a break. Then wouldn’t you know it – I let posts slide again. And again.

I’m sure I have “valid” reasons for not blogging and as I’m typing away right now, my brain is telling me, YES! Yes, you do. The writers’ conference that I participated in in late March required me to spend extra time on getting my second book in shape for editor and agent critiques. Then came the revisions, which I’m still working on.

I also just felt so dang tired these past few months. Winter is hard on those of us with sleep disorders. The lack of sunlight made me feel lethargic and the moment it turned dark outside all I wanted to do was read in bed. Then, there was my crap diet that lasted from March 25th, when my husband and I completely lost control at a conference where we had multiple all-you-can-eat meals, all the way to May 2nd.  I can pretty much sum up my diet during that time span as: SUGAR, SUGAR, SUGAR, SUGAR, SUGAR, zucchini noodle stir fry, SUGAR, SUGAR, SUGAR.

not-only-did-i-fall-off-the-diet-wagon-dragged-19642228

No wonder I’ve been so exhausted and I’m pretty sure I have a sugar addiction. It’s funny how poor choices in one area snowball into the rest of your life. Poor diet led to increasingly poor sleep, which made me feel tired and was exacerbated by lack of sunlight, so I made even poorer diet choices because of feeling so tired, which then made me feel even more tired and because I’m so tired, I’m then not meeting my writing goals, making me get down on myself, and then I want a DQ Blizzard to make me feel better, and then, oh, what’s that? I’m feeling even more tired and the sugar makes me have poor sleep. Again. And the cycle repeats. And repeats. And repeats.

At the very least I have awareness of this pattern. And (once again) I am consciously choosing to break the cycle. The good news is I have excellent support from my husband, who also has a sugar addiction, and was feeling just as sick and tired of feeling sick and tired as I was.

We are currently on Day 15 of a 26-day diet detox, which banned sugar (including fruit) the first week, and is 90% raw, 100% vegan. Completing this detox will be a truly great achievement for me and, not surprisingly, I’m already sleeping better and I have more energy. That’s how I find myself writing this blog post at 8:00pm on a Tuesday evening instead of mindlessly scrolling through Facebook to trick my brain into thinking I’m accomplishing something.

So I’m making progress — YAY!

While I finish the remaining 11 days of the diet detox, I’m also going to spend some time contemplating my goals. Specifically, I want a better awareness of the balance between my ambition and productivity. As evidenced by some of my older blog posts, this is one area in the past where I have set myself up for failure by being too optimistic about what I can realistically accomplish. But it’s also something I am keenly aware of and trying to improve and frankly, I’m tired of making excuses for not meeting my own goals.

In the meantime, I am going to give myself a small writing goal. Post this blog tonight and then post another one on May 22nd.  As always, I thank you for reading my blog and for your love and support.

Memoir Monday, January 30th, 2017

Enthusiasm Title

I opted to put off writing this blog post yesterday because I was immersed in the book The Sun Is Also a Star, a young adult book written by Nicola Yoon.

Sun is also a star

That’s the official reason.  The unofficial reason is I’m still plagued by lack of quality sleep and it’s now taking over many facets of my life, including motivation to do anything other than lay around and pet the adorable dogs I’m taking care of.

Dogs

It’s a good thing they’re so cute because they make me smile even when I feel so exhausted.

Officially, though, I found this book to be an incredible and compelling read.  It’s the sort of book that makes you wonder just how the author managed to weave her magic of words, imagination, creativity, and plot together to come up with the story she did.  It doesn’t surprise me the book was a National Book Award Finalist for Young People’s Literature.

One of the down sides of reading a book of this nature is that I can’t help but make comparisons to my own writing.  What results when I do that is an odd mix of irrational jealousy of how the author approached and wrote the story, demoralization that I could never write anything like it, and then optimism that there are thousands of books being published each year and it’s good that my stories are (and will be) different.

It’s a lot to feel over the course of one day, especially when sleep continues to elude me.  Perhaps that is also a contributing factor.  But now that it’s been over 12 hours since I finished The Sun Is Also a Star, the truth is, and I credit my years of therapy and spiritual questing for helping me reach this point, is that I can easily let go of my irrational jealousy.  There is no reason on this Earth (or the heavens, for that matter), that I should be jealous of someone else’s success; if anything, I should be ecstatic that such a beautiful story is now being read by thousands of teenagers and perhaps encouraging them to think about their own places in this world.

And I do feel inspired with my own story ideas and characters from reading such a rich and engaging story.  One of the greatest compliments I can give to Ms. Yoon about this book is that after reading it, I want to further my learning of writing and keep practicing its craft so that I can write a story that engages readers as much as she has.

If only I could get that inspiration out of my head and onto the page with the same enthusiasm that I had when reading The Sun Is Also a Star.  In my exhausted state, writing, like most everything else, including doing the dishes, washing clothes, going anywhere, etc., seems like an insurmountable feat. Yet, I keep plugging along. Not with enthusiasm, and sometimes I feel rather belligerent about everything.

Having narcolepsy, this state of exhaustion may never change.  But my books and my stories are not going to write themselves.  So here you go.  A small piece of writing for a one-day late Memoir Monday post that makes me believe I’m accomplishing something.  Thank you for reading and for your support.

Memoir Monday, January 23rd, 2017

Narcoleptics Prevail

I think I’m making progress towards this whole I am a writer thing.  I say this because today I am utterly exhausted and I still wrote my daily word count, exceeded it, actually. 1500+ words when you are a narcoleptic and you haven’t slept well is quite an accomplishment. 

As my niece would say, “narcoleptics prevail!”

Someone today commended me on my writing habits.  He said I had “discipline.”  It’s funny, because that’s one of the last words I would use to describe myself.  How many times do I check my email, scroll through Facebook, look for new stories about JK Rowling or Pitch Perfect 3, or send a funny dog video to my husband before I sit down to write?  Probably about 1,265,317 times.  And that’s just in one morning.

Then there was this morning.  I did not want to write anything for my novel.  Not even a teeny tiny bit.  I tried to get going by revising a picture book I wrote for my online class through KidLit College.  I then sat and stared at my computer feeling rather belligerent about everything, especially writing.  Just write 100 words, I encouraged myself. 

What I really wanted to do was go back to bed and take a nap.  It was only 8:00am.

The last time I got a good night’s sleep was February 12th, 2016.  Seriously.  My husband and I stayed over at his friend’s house because we were having an all-day Harry Potter movie marathon.  I don’t know if it was the bed, how cold the room was, or the fact that my husband and I secretly eloped that morning.  Before that, my last good night’s sleep was the end of September, 2015, when I was housesitting for a friend, and before that it was a day in March, 2014, when I went to a chiropractic open house.

You know you’re dealing with a narcoleptic when they can tell you their last good night’s sleep.  What this means, though, is that it’s been many days in a row of not good sleep and ever since the full moon last week it’s been many days in a row of not good sleep and incredibly vivid, and often disturbing dreams.  Suffice it to say I feel exhausted.

It’s time like this that I’m incredibly grateful I had the courage and inclination to quit my teaching job.  When I was a professor, teaching four classes, advising 30-40 students, serving on committees, and conducting research, I was exhausted simply by the sheer weight of my work, never mind the narcolepsy. 

I would never have been able to write the way I do and I would not be where I am with my writing if I had not quit.

That’s one of the reasons, though, I could power through.  When I started writing this morning I was only 1500 words away from crossing the 20,000 word mark of my second novel.  I wanted to get there and I wanted to do it today so tomorrow could bring another goal.  I’m on track to finish the first draft of my second novel by the first week of February.  It blows my mind that not only do I have the first draft of one novel completed, but I’m getting to the finish line of a second one!  How did this happen?  Is it discipline?  Or is it positive reinforcement?  I don’t know, and right now, I don’t care, because I am tired, yet I am writing.  Narcoleptics prevail, indeed!