Welcome back, Daylight Savings Time! Except, you’re not really welcome here. In fact, I kind of hate you. Not that I mind the extra sunlight. It’s losing that hour of sleep. For a person with narcolepsy, daylight savings time can be especially challenging. Keeping a consistent sleep/wake cycle goes a long way towards managing my narcolepsy symptoms. With daylight savings time, there’s nothing I can do about it other than accept the loss of the hour and try to recover the best I can. Sometimes, it can take weeks.
Good thing I have an excellent napping companion with Smudge.
So, on that note, I give you my latest blog post: Pictures of yawning dogs (that I personally know and love) because I’m too tired to come up with anything else.
Mid-November is apparently the time of year when things almost fall on my car. This photo is from November 12th, 2015:
And here’s today’s photos:
I could have been driving on Route 44 when that big honkin’ tree came down! Talk about kick-in-the-pants gratitude. I always welcome these small moments into my life that remind me how truly lucky I am.
There is a downside to this fallen tree (HAHA, downside – get it?). It stopped me from meeting up this morning with one of my writing partners. She was, of course, understanding and gracious about my last-minute cancellation. I just hate wasting people’s time and she didn’t get any of my emails informing her of my blocked street.
I also don’t get the benefit of discussing writing craft with her, sharing our weekly writing updates on our projects, and commiserating over the long and arduous path to publication. Since next week is Thanksgiving, it will be a few more weeks before we can reconnect again. So, I’m doubly bummed about missing out on all the writing fun we have together.
In the meantime, my husband and I will be traveling to Harrisburg, PA, to spend the holiday with my parents, brother, and niece. I’m quite looking forward to it and this will be the first real test since September to see if my writing and exercise habits that I’ve been developing stick.
I’m at the half-way point towards my 20-minutes-a-day, 6-days-a-week interval training goal. Using Dr. Christine Carter’s The Sweet Spot as my guide, I’m building this habit slowly, by tacking on an extra minute of cardio every week to my already established 20-minutes-a-day, 6-days-a-week strength training regime. For example, today I lifted weights with my upper body for 20 minutes and then I alternated in 30-second increments of frenetic dancing with marching/dancing in place for a total of 10 minutes.
Confession: Today I exercised a little bit longer so I could finish dancing to Justin Timberlake’s Can’t Stop the Feeling. I dare you to try listening to it and not dancing to the entire song.
Normally, I abide by my strict time limits because I don’t want to get ahead of myself and then build the activity too quickly. I know myself too well and that is a surefire way for me to burnout and then give up.
Adding one minute on each week seems to be the trick for me to keep up with this routine. Although sometimes I forget that my morning exercise routine now takes longer than 20 minutes and I do occasionally feel rushed.
Anyway, it’s easy to have my morning habits in place when I follow the same pattern every day: Get up around 5:30-6:30am, feed the dogs and let them out, hand write 2 pages of my latest novel, hand write a prayer to start my day, which will also serve as a first draft prayer for a daily devotional I’m writing, meditate for 20 minutes, and then workout.
With the time I’ll be in Harrisburg and the few days after that in which I’ll be staying with my niece in Washington, DC, there’s sure to be disruption along the way.
One of the keys to disruptions that Dr. Carter writes about in The Sweet Spot is to have a plan already in place so you know how to deal with them.
I expect the biggest disruption will be that my daily wake-sleep schedule will completely fall apart. Traveling makes me feel even more tired than usual and I tend to have very vivid dreams when my schedule is disrupted. If I wake up feeling exhausted, then I’m less likely to get out of bed in a timely manner. Then, when I do get up other people in the house are awake and my concentration and time is diverted.
This solution will be easy enough because I’ve had many mornings this past fall where I’ve struggled to get out of bed. I don’t like writing in bed, but sometimes it’s the compromise I make for being productive and respecting my narcolepsy. So, I’ll sleep with my notebook and a pen on the side of my bed. I’ll also keep my phone and headphones nearby. That way I can also meditate before getting up.
Note to self – un-install social media and gmail apps on my phone, lest I get distracted by those time wasters before accomplishing any of my usual morning goals.
I suppose I could also visualize exercising before getting up, which is my current fallback plan for if I am too exhausted to get out of bed. But that hasn’t happened yet and I want to use it as a last resort.
If once I am up and about, I’m unable to exercise the way I’d like, my backup plan is to do short, mini-exercises for one-minute increments throughout the day sneaking them in whenever I can. Ideally, I’d hit 20 increments but 10 is going to be my starting point. Again, this is a fall back plan so hopefully the 10 versus 20 increments is a moot point.
I’m kind of excited to see how it goes; the other parts of me are worried I’ll chuck everything by the wayside and spend my days gorging on junk food and reclining on the couch. Psychology tells us that most of what we worry about is imaginary, but having succumbed to the treats at my parents’ house and the comfortableness of the couch one to many times over the past few years, I know this a real and valid concern.
But if nothing else, I have learned by forming my new habits that just because I have behaved a certain way in the past, doesn’t mean I have to behave that way in the future. It’s up to me to make my choices and I know I will do my best. That’s all I can ask.
Have a safe and happy Thanksgiving next week! I am so grateful for your love and support.
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
being an animal enthusiast
serving others with the best of my talents
connecting to nature
traveling to new places (preferably with my husband and/or family)
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.
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:
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.
We are officially back in Connecticut! One of the best parts of housesitting in a small town is how easy it is to run into people. When my husband and I went for a walk around town center our second day back, we saw a few people we know and I got to meet two new dogs. Technically, I already knew one of the dogs. But, I hadn’t formally met him, so I felt thrilled to learn the dog I had nicknamed “Giant Cocoa Puff” is really named Tucker. I now refer to him as Tucker Giant Cocoa Puff, which I think suits him.
3,000 + miles are a lot to drive in two months and many of my (supposed) habits fell by the wayside by the lack of consistency in my daily routine. For the most part, I did manage to keep up with daily meditation (sometimes even twice a day!), since I’m a big believer that meditation is the single greatest action that can change one’s life (feel free to ask me for advice on how to start). I also kept up with 20-minutes of strength training every day except Sundays; again, for the most part.
I can’t remember when I started the 20-minutes of strength training. I believe it was January, but I’m not very good at keeping track of things, even when I try. Case in point: On July 10th, after I finished reading Gretchen Reuben’s The Happiness Project, I typed 13 daily tasks to promote my happiness and well being in a spreadsheet and started marking “X” when I completed the activity or “O” when I didn’t do it. The last marks I have are on August 6th.
I’m not sure why I stopped keeping track, but I have to seriously consider that somedays I am too lazy to turn on my computer and/or open a specific file. This failure on my part makes me marvel even more at one of my former students, who I caught up with while in the Chicago area. As of August 22nd, he was on DAY 127 of 50 daily push-ups. This student is currently working as an OT aide, while applying to OT schools. Even more remarkable, this student suffered a traumatic brain event in 2009. Considering everything this student has been through and what he’s accomplished since (bachelor’s degree, finding work in his desired field, being a generally upbeat and positive person), I should be able to turn on my computer to make X’s and O’s.
Except, I know that if there is an extra step that doesn’t have to be there it makes me more likely not to do something.
In her book, Dr. Carter detailed how having more productive and efficient daily habits related to your life goals can increase happiness and wellbeing. Yes, I know, this is essentially a duh finding, yet I am still not living the fully productive and efficient life I desire, so I clearly have more work to do.
Dr. Carter wrote about taking “tiny steps” to establish our habits. She states the key is to find a trigger for the habit and then start the habit with the least amount of effort possible. For example, if you want to establish a daily meditation habit, link meditation to something you do daily, like brushing your teeth in the morning (this is the trigger) and then immediately after your morning brush, go sit on a meditation cushion for 30 seconds. And that’s it. You don’t even meditate at first. You increase the time of sitting there on a weekly basis and then you start with the meditation, again which is something you would build up to (meditate for one minute and sit there for another nine minutes).
So, I took a page out of The Sweet Spot (haha, pun totally intended) and started taking tiny steps with the least amount of effort possible in establishing new habits. For me, least amount of effort means: 1) I am not going to record my daily progress because that’s extra effort I don’t really want to do (and apparently am not good at); and 2) I am only going to focus on one habitat a time.
Since every single aspect in my life is infinitely better when I get a good night’s sleep, and I know I sleep much better the more exercise I get, my new habit is to increase my amount of daily exercise. The 20-minutes of strength training is going well, and to it I’m adding 20-minutes of high-intensity interval training.
Here’s how establishing my new habit is broken down with The Sweet Spot method:
FIND A TRIGGER – Easy! I’m already exercising 20-minutes every morning after I meditate.
LEAST AMOUNT OF EFFORT – 30 seconds of a high-intensity cardio move (this week I selected mountain climber), 30 seconds of rest, and 30 more seconds of cardio, then DONE! Seriously. No more, even if I feel good and want to keep going. Though now that I’m almost a week in, holy bananas is my butt already getting kicked and I don’t think I could continue much longer anyway.
REWARD – In addition to the natural high that comes from exercise, I play a fun pop song from one of the already created playlists in Amazon Music while I complete the interval. So far this week I’ve listened to Shut Up and Dance by Walk the Moon, Shake It Off by Taylor Swift, Firework by Katy Perry, Call Me Maybe by Carly Rae Jepsen, and Blurred Lines by Robin Thicke, all which can be found in the 50 Great Songs from the Last 10 Years playlist. In case you’re interested, I usually listen to an audiobook during my strength training and right now I’m finishing up the Sookie Stackhouse series (for probably the 4th time), which the HBO show True Blood is based on.
PROGRESS – On Monday, I will increase another minute of exercise/rest. And that’s it for the rest of the week! Each Monday, I will increase by only one-minute intervals.
HAVE A BACK-UP PLAN – In the event I cannot complete my target time for whatever reason, I will do 1.5 minutes of interval cardio. In the event I am sick, I will visualize my exercise. These options are the “better than nothing,” approach that Dr. Carter writes about and because they are so easy, I can’t imagine not being able to complete them on any given day.
Yes, I realize that it will take me 20 weeks to establish just ONE of my desired habits. But I would much rather build towards one high-priority habit, then go all in right away on multiple habits, burn out, and completely stop exercising or writing or eating healthy or whatever it is I’m trying to accomplish because they all get lumped together with too high expectations. I am investing in my health and sleep for the long haul and I think this is the best way to do it. I will certainly give updates in the future, and in the meantime, if anyone has recommendations for some fun cardio exercises, please let me know.
This past week that my husband and I spent at my parents’ house was an epic achievement for me in that I did not gain any weight. This is good news because I’ve been working on keeping the momentum of staying active and eating less junk food that I’ve sustained since the beginning of May. Ever since I fell off the whole foods, no sugar bandwagon approximately 1.5 years ago (note the coincidental timing with my marriage), it’s been a struggle to release the addictive hold sugar has on me, but I’m here to say I’m still going strong.
The bad news, however, is that I enjoyed other foods that for me, personally, wreak havoc with my health. Night shades (i.e., white potatoes, peppers of any kind, including spices, tomatoes, and eggplant) all cause my narcolepsy symptoms to be significantly worse. Specifically, when I eat night shades the amount and intensity of the time I spend in REM sleep increases.
REM is the stage where dreams occur; for people with narcolepsy, we already have overly long, incredibly vivid and emotional dreams, as well as more frequent dreams throughout the night. During the week that I ate nightshades on a regular basis here are the dreams I had:
I was driving someone else’s car (someone I used to work with at my former university) and the brakes wouldn’t work
I kept missing my flight – where I was going, I couldn’t tell you, but in the dream, no matter what I did I couldn’t get to the airport on time.
SNAKE! A long vicious snake, kept trying to attack while I had to hold its mouth at bay. It was all I could do to keep the snake from biting me.
I was back in college and I had to turn in a paper that I was totally unprepared for.
I was still teaching and I couldn’t find any of my work to turn in my final grades.
I was at a high school dance, or perhaps a reunion, and I kept worrying about what I was going to wear (at least I think that’s what this most recent dream was about. Unlike my previous dreams, this one has faded more).
Any one of these dreams is enough to exhaust anyone, let alone having them six nights in a row. I’m convinced these dreams are my own personal ayahuasca experience, with nightshades serving in place of the illicit vine that so many seek out in the Amazon.
For the record, I have never used an illicit drug to alter my state of consciousness, as ayahuasca does, but having traveled for three weeks in Peru of course I met people who had. Their reported experiences were not unlike this video
so I’m not sure why anyone would want to have those experiences anyway, and, frankly, because of my narcolepsy I’m having these experiences of my own accord (though to be clear, not soiling myself).
I also realized that my nightshade consumption has bumped right up into the full moon. Thanks to my Fitbit (which my Mom gave me as a gift in May), I’m much better at tracking my sleep. Sure enough, during and around the full moon, I have trouble falling asleep, my dreams increase in vividness, emotion, and duration, and I wake up around 4:00am.
As you can imagine, after a week of this kind of sleep (though the 4:00am wake-ups just started this morning and I expect will last two more days according to my Fitbit records until the next full moon), I could really use some rest and recovery.
To that end, I am choosing to say NO, THANK YOU, to all nightshades and processed sugar for the next few weeks, I am striving to meet my daily 8,500 steps goal, and I am staying optimistic. Although in this moment it’s not as easy to stay optimistic, except that twice in the month of June I had really good sleep. Sleep where I woke up refreshed and enthusiastic about my day. The last time I got sleep like that (other than naps) was the last weekend in September 2015. No, that’s not an exaggeration, and yes, it was a long time ago.
I just wish I could remember these feelings in the moment when I’m about to eat those delicious hamburgers with ketchup, the crunchy and salty french fries that I love so much, or the spicy goodness of Chipotle. I’m not sure what it would actually take for me to commit to NO NIGHTSHADES EVER AGAIN but at least maybe these dreams are enough to make me commit to NO NIGHTSHADES EVER AGAIN for at least 30 days. I can do anything for 30 days, right?
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!