Tag Archives: Narcolepsy

The Positive Ways Narcolepsy Has Affected My Life

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After writing last week about how frustrated and angry I felt with having narcolepsy, a funny thing happened. I began to feel better about the situation.

Initially, I debated even writing that post. Narcolepsy is a part of my life, but I didn’t want my struggles with it to define me. I wondered if I shared my feelings, would I suddenly be “that person who can’t cope.”

Why that would bother me is a post for another day, but in retrospect, I realized it was silly to think a one-time post would become the essence of who I am as presented to the world, more so than my dozens of posts about writing, playing with dogs, procrastinating, and dreaming about seeing bears in the wild.

Instead, I felt free from the hold that my poor-quality sleep had on me. Once I got out all my feelings, the anger and resentment stayed on the screen and allowed me head space to start moving on. I thought to myself, well, if this is how it’s going to be for the rest of my life, does that change anything? I realized, no, it did not. I still have goals and dreams I’m working towards and I’m not going to stop. I may be more tired along the way, but I didn’t come this far to quit now.

My gratitude habit also kicked in about 24 hours after I wrote that post. For years now, I have either written prayers of gratitude for the blessings in my life or I have practiced gratitude in a meditative form. I honestly could not help but think of all the ways narcolepsy has improved my life. The biggest way is that I realized if I only have so much energy to expend, then it’s going to go towards things I value the most:

prioritizing my health

writing

being an animal enthusiast

Snake

serving others with the best of my talents

COP

connecting to nature

traveling to new places (preferably with my husband and/or family)

Library

growing my spirituality

and now that I’m married, loving my husband as much as I possibly can (super easy; he’s such a good person and so cute!)

Not on the list of things I valued was being an associate professor of psychology, and so my narcolepsy was one of the biggest motivating factors to give me the courage to quit my job, and give up tenure, amazing benefits, and a matching retirement account. Thank you, narcolepsy.

I also didn’t expect the amount of love and support I received from friends and family who read my post. My phone blew up with blog comments, Facebook comments, IMs, emails, and pictures of polar bears, all from people who wanted me to know they heard what I had to say. I received validation, empathy, and sympathy, and let me tell you it felt really good.

These responses were especially meaningful to me because there was a time when I lived a rather isolated experience. At that time, my closest friend at work had moved on, my office had changed locations to accommodate my narcolepsy so I could have a space with natural sunlight from a window and my new suitemates didn’t have the same level of socialization as my previous ones, I wasn’t on social media, and most of my friends (the few that I made since moving to Illinois) lived more than 30 minutes away (on a good day), and the ones who lived close by were married with families. I felt lonely for many days and then a doctor told me, “you need to spend time with people.”

It took me several months to really buy in to what the doctor said, but once I did I began to realize just how important community is. Especially when you are dealing with chronic illness.

So, thank you to everyone for showing your love and support. Two days after I wrote my blog post last week, I got a decent night’s sleep. And the night after that, and another night after that. For three days in a row, I felt like I had won the sleep lottery. I believe it can happen. I plan on using a natural sun light for when the Connecticut mornings are dark and dreary. I’m going to utilize my health insurance for therapy to help me cope on sleepy days. I’m also going to investigate acupuncture as an option.

There are so many wonderful things going on in my life. It looks like narcolepsy just may be one of them.

Living with Narcolepsy AKA Today, Life Sucks

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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

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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 25^th, 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 2^nd. 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.

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 22^nd. As always, I thank you for reading my blog and for your love and support.