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.

6 thoughts on “Living with Narcolepsy AKA Today, Life Sucks

  1. Lynn Katz

    Yes you are allowed to vent and to feel and thank baby polar bears (or God, if you believe) you also have the passion and power to write. I continue to be in awe of you and your life choices. You inspire me. Also-consider acupuncture if you haven’t already.

    Reply
  2. Kelly Kandra Hughes

    Your support means so much to me. And funny you should mention acupuncture, I just discussed with my husband making an appointment.

    Reply
  3. Denise Baker

    I would never be so pretentious as to give you advice. I will send you prayers for a warm fluffy Phillos to give you comfort in your frustration. You are such a wonderful person who spreads rainbows and happiness where she lands you deserve the best life has to offer.

    Reply
  4. Octavian cozar

    Your problems and frustrations are as important as other people’s bad experiences. They do not define you but they can definetly make your life miserable sometimes. Feel them, and as you are already doing probably, note them amd let them go. Even if you need to do this many times a day. And remember all of these are temporary and it will change. Take care and look after yourself as you are doing now and continue to express what you feel. Hugs from 2 romanians in the UK. Tavi and Lavinia

    Reply
  5. Cindy McCullagh

    I am so sorry you are struggling. This must be exhausting for you, and not just in the not-getting-any-sleep kind of way. Something that has helped me get through times when I have trouble adjusting my sleep-wake cycle is using a light box in the morning (especially good when days get shorter and we aren’t exposed to as much sunlight). I don’t know if this would help you, but I thought I would mention it, just in case!

    Reply
  6. Pingback: The Positive Ways Narcolepsy Has Affected My Life - Kelly Kandra Hughes

Leave a Reply