Could we please stop with daylight savings time? Forcing me into unnecessary sleep disruptions seems cruel. I have enough sleep struggles at the moment.
I am no longer cautiously optimistic my sleep medicine is working. I know it is. I’m finally getting into deep sleep. But it’s coming at a high price in terms of other effects.
Because the medicine is a central nervous system depressant it can cause breathing issues. Not only do I now snore, but the snoring is LOUD; I have both earwitness testimony from Heath and my newly downloaded SnoreLab app. The app literally calls my snoring “epic.” I sound like an angry swarm of bees attacking an equally angry dragon.
There have even been a few times when I stopped breathing. The medicine I take has been shown to trigger sleep apnea, so now I have a sleep study scheduled in mid-May to see how dangerous a problem I have.
I’m also back to waking up drenched in sweat every night. I had a brief reprieve when I made the switch from Xywav (the newer formula of the medicine) to Xyrem (the older formula). I had to switch because the Xywav includes an artificial sweetener as an added ingredient and I was having all kinds of GI issues as a result. I then had a few wonderful nights of absolutely no sweat. It felt glorious to wake up warm and dry! Now I wake up feeling cold, clammy, and uncomfortable. Sometimes I even have to change my shirt in the middle of the night when I take my second dose because I’m soaked with sweat.
These effects are not what I signed up for to treat narcolepsy. All I want is a good night’s sleep. And then we had to throw out a perfectly good hour this morning. I was a shaky, anxious mess this morning.
Here’s what’s keeping me going:
Thank goodness for this little guy. I’ve had the privilege of taking care of Fergus since Tuesday. We sit on the couch together for hours. He watches out the window; I read a book. He chases his ball and I laugh. These moments are pure joy. How lucky I am to be with Fergus. He reminds me that there are still good things in life. I know because he’s one of them.
So is Heath. He’s been super supportive. He knows the snoring and the challenges with taking Xyrem aren’t my fault. Still. I love Heath more than any other person in this world. I hate that my quest for good sleep is negatively affecting his.
Thankfully, Heath has travel plans taking him to Illinois in about a week and a half. He’ll be gone over a month. Even though I’ll miss him terribly, there’s relief in knowing that I won’t be affecting his sleep.
I don’t know if I’m going to be able to continue taking this medicine. I feel terror and relief at the thought. There has got to be a better way. I just wish I knew what it was.
A few weeks ago, I led a TED Talks discussion group using Candy Chang’s talk, Before I die, I want to…. You can watch the TED Talk here.
Two of my discussion questions were:
How would you fill in the blank — Before I die I want to __________?
How would your answer change if you knew you only had one year left to live? What about one week? One day?
A lively discussion ensued. One gem of wisdom shared by a participant was that a year was a luxurious amount of time. How grand to know you have a full year ahead of you!
Juxtapose that idea with the basic premise of Oliver Burkeman’s Four Thousand Weeks: Time Management for Mortals, whereby the average human lifespan is only four thousand weeks. Four thousand does not seem nearly enough.
Since the reality is we really don’t know how much time we have left, I take time every year to reflect on my own death. This practice helps me ensure that no matter what happens, I know what’s important to me, which in turn, helps me make decisions in both the short- and long-term for living my best life. Previous death meditations inspired me to quit my tenured position as an associate professor of psychology, to volunteer for seven weeks at a science center in sub-Arctic Canada so I could see polar bears in the wild, and to recognize that my perfect day includes time for rest, self-care, being with loved ones (and a dog), some play, and some productivity.
This year, I reflected on my death while at a winter solstice sunset meditation program at Naumkeag. Naumkeag is a beautiful house in Stockbridge, Massachusetts, set on a rolling hill with the Berkshire Mountains as its backdrop.
Picture taken on Autumn Equinox in 2021.
Picture taken on Autumn Equinox in 2021.
Having been there before, I knew Naumkeag is a magical place. What made the night even more magical is the house and grounds glowed with thousands of colorful lights as part of their winter lights festival. I could not have asked for a more perfect place to reflect on my past year and find inspiration for living my best life in 2022.
2021 was a hard year for me. The grief of losing family, friends, and dogs in 2020 carried over, as did the uncertainty of the pandemic. Add to that a terrorist attack on the US capital in January, a constantly mutating virus because not enough people are vaccinated, and a debilitating sleep disorder that has been getting progressively worse for years, which, in my opinion was so stressful it reactivated a shingles infection in my body in August, and I’ve got a year that really sucked at times.
And yet, because I’ve taken time in the past to consider my time and mortality, I also experienced a pretty wonderful 2021. I have never been more in love with Heath than I am today.
He is an amazing teammate, best friend, and husband. A lot of times when I panic that I’m 44 and if I live to the same age as my dad then I only have 30 years left, the panic is because I feel like that is not enough time to love Heath. Since there is literally NOTHING I can do about my eventual death, my way forward is clear: just love Heath to the best of my ability each and every day.
Last year, I also had a dog fall asleep on my head! Best. Day. Ever.
In those moments, as Fergus snoozed away, I thought I might explode with joy. I also thought I might never be able to move again, because I couldn’t bear to wake the little guy up.
Knowing how dogs have a special place in my heart, I mostly kept up with my twice weekly walks with Annie. Even in my darkest days of sleep and health challenges, being with Annie in the woods was a wonderful tonic which helped me keep going.
2021 is also the year that I learned how to write a novel on my phone. In my work at the Norfolk Library, I led a program on habit formation using James Clear’s Atomic Habits book. From his insights and practices, I finally let go of wanting to be a person with a habit of jumping out of the bed first thing in the morning. That kind of habit is impossible for me when I feel severely sleep deprived and depressed due to narcolepsy. Instead I used the techniques and information to develop a habit of writing on my phone, which makes a lot of sense considering how often I use my phone and how my phone is almost always within arm’s reach. Six months and over 37,000 words later, I now have the first draft of a middle grade novel that is just waiting for revision.
I also spent a lot of time querying agents in 2021. I received several requests for full manuscripts or more work. Although I was not offered representation, I did receive personalized rejections, some with encouragement to keep going. It’s not what I hoped for, but I’m certainly not giving up now.
In reflecting on 2021, one area of my life other than sleep also seemed out of balance: my work life. When I quit teaching in 2016, I never wanted to work full-time again. The hours and stress of working full-time did not seem possible while also trying to prioritize my sleep health.
In the beginning of 2020, I worked 12 hours at the Norfolk library and 10 hours for the Congregational Church. That combination seemed perfect for my personal and professional goals. By the end of 2020, I was working 35 hours a week — 25 for the library and 10 for the church. I needed to work 25 hours at the library so that after 1 year at those hours, I would be eligible for health insurance. During 2020, our market place health insurance monthly premium went from $60 a month with state assistance to $1,069 a month with no assistance.
Perhaps if I didn’t experience downward-spiraling narcolepsy symptoms in 2021, I may have been able to sustain a 35 hour a week work schedule. Unfortunately, my sleep health was so poor in 2021 that I knew I couldn’t continue working this way. I made the difficult decision to resign from my position at the church. I will still volunteer for various church initiatives, since they have such a wonderful presence in Norfolk and beyond. But I now have the discretion to say no when I am simply too tired.
Which brings me to 2022 — How do I want to live differently, if I knew 2022 would be my last year?
The answer to that question came almost immediately while I was at Naumkeag. On that cold dark Night, we were led through a rainbow tunnel of lights.
During that walk the words colorful creativity popped into my head. I knew the instant I heard myself say those words that my creativity is missing an important component. So much of my creativity goes to writing: I write for my job at the library; I write for the Norfolk Now monthly newspaper; I wrote for the church. I also write in my free time in hopes of being a traditionally published author someday.
What I don’t do is use my creativity simply for fun. I don’t create for play. I don’t create simply to create. There is always a purpose. That stops in 2022.
This year, my year of colorful creativity, I will prioritize using color in creative ways. I never have considered myself a visually artistic person. I think that’s an important point. I am choosing to spend some of my time on artistic endeavors that have no higher goal, other than to simply create something colorful.
I find this idea both exciting and terrifying. I feel excited because it’s something new and different. It’s terrifying for a few reasons. One, I still think of myself as a minimalist and I’ve already bought some art supplies which creates cognitive dissonance with my minimalistic values. So that’s something I’m reconciling as I go down my colorful creativity path. Two, I know how precious time is. It’s terrifying to give up some of my writing time or otherwise free time to play. I don’t have to worry about giving up time with Heath because we know have art dates every Monday.
We’ll see how it goes. I decided to get a head start on my year of colorful creativity and made before the official start of 2022.
I call it Polar Nights. Here’s to more colorful creativity in 2022!
Fall is moving by quickly in Norfolk. Although maybe that’s not entirely accurate, because we’re still having warm, sunny days. What we’re also having in between are some really wet, rainy days. Thanks to those days, the bright orange, red, and yellow leaves lasted what felt like a nanosecond this year. At least I got to spend some time with my favorite farm animals, as I typically do every fall.
I feel incredibly grateful to have a friend who lets me soak up the restorative power of being around animals in nature. It’s a tonic for life that everyone should be able to access. I wish it were enough to get me safely across the sea of narcolepsy symptoms that continue to ebb and flow in my life. It’s not, but this time with Hammy, Frankie, and Sheldon, does help me stay afloat a little easier.
Hopefully by the next time I write on this blog, I’ll have started a new/old narcolepsy treatment. It worked wonders for several years and then it didn’t so I stopped taking it. I’m hoping my body will have reset enough that it will work wonders again. Wish me luck!
Sleep is not going well. Since sleep is the foundational support for so many other things in life, I am struggling.
For the last two years, I’ve been actively trying different solutions. None of them have had a marked improvement. In July I started a new medicine. At first there was hope. Then when my doctor increased the dose, I had every psychological side effect listed on the pharmacy insert, including the very scary ones. I’m lucky I didn’t end up in the hospital.
I suspect the stress of that situation is what kicked off a round of shingles. I had shingles before when I was 38. Shingles, of course, comes with its own host of problems, and the fallout from this time around has made the sleep situation worse.
When I went for a physical on Thursday, the nurse did a depression screening as part of my vital signs. You know you have a good doctor’s office when they’re this thorough. I scored in the “severe depression” category.
I explained that these depression screenings don’t have discriminate validity between depression and narcolepsy. So, yes, I may be severely depressed, but the narcolepsy came first.
I am now so tired that there is a sea of tears living behind my eyes that can break free at any given moment. Even the smallest crack can release a torrent. Some people get anxious when they’re exhausted. Some people get angry. Some people eat a lot of cupcakes. I cry. I’m not sure if that’s better or worse than the other options.
Part of the problem with an invisible disability is that oftentimes I look fine. And a lot of the times I pretend I’m okay even when I’m not. Someone even recently described me as “bubbly.” Those times are usually an act. Unfortunately, we live in a society that ties health insurance to employment and so I play along because I feel I have no choice. I can’t not go to work every day I’m tired because then I’m just not working and would need to apply for social security disability.
The acting takes a lot of energy and stamina, although sometimes pretending I’m fine is less work than telling people the truth. People with narcolepsy have a saying, “My tired is not your tired.” So when I say I’m exhausted, a lot of people sympathize because they think they know what it’s like. It’s not the same. Research backs me up on this fact. When a person with narcolepsy wakes up from eight hours of sleep, the sleep is such poor quality and the deficiency of the neurotransmitters orexin or hypocretin in our brains is so great that we feel like we are on day three of sleep deprivation. Every. Day.
Unless we’ve found a treatment that works for us. I have yet to find that treatment.
We also spend more time dreaming, in bright, video colors, often with nightmarish or traumatic plots. It’s not unusual for a person with narcolepsy to wake up with post-traumatic stress from their dreams. Brain imaging studies have shown that the same areas of the brain are activated whether you are acting in real life or acting in a dream. For people with narcolepsy, our brains get no rest from that activity.
Even our more mundane dreams are exhausting. This weekend the Norfolk Foundation is hosting the Haystack Mountain Book Talks. Even though I have yet to read any of the books, a few weeks ago I dreamt I was in charge of the program, which had all kinds of logistical problems in my dream, and then I sat there and listened to every single presentation. Can you imagine the brain power it takes to create multiple hour-long lectures of a book you’ve never even read?
Explaining all these truths about narcolepsy is something I like to do when I’m in “sleep evangelist” mode. But now when I’m tired. These conversations are difficult to have.
Also, there are times when I’m actually okay even through the tiredness. Sometimes even joyful. Those times usually involve being with people I love, a dog, being in nature, or perhaps talking about a book or something else that still holds my interest through the sleep deprivation (though there’s not that much these days I find interesting).
So I can’t at all blame people for thinking I’m okay because sometimes I pretend I am and sometimes I actually am and all the other times I’m not. Maybe I should get three versions of the same t-shirt that says: Okay, Not Okay, and Pretending to Be Okay. On the back it would say “Don’t Ask.”
I have an appointment with my sleep doctor on October 5th. I’m afraid I’m putting too much hope into this appointment. But I don’t really know what else to do at this point, except keep doing what I’m doing and wait for October 5th.
Special shoutout to Heath who has been incredibly supportive and loving during this time. I know I could manage without him because I did for years. I’d rather not.
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.
BIG ANNOUNCEMENT: I actually achieved my goal of creating a cardio exercise habit!
As someone who spent fifteen years mistakenly believing I was lazy when, in fact, I had undiagnosed narcolepsy, I carry around a lot of baggage about setting goals and whether I achieve them.
Reaching my cardio goal is exciting, although I understand this news may not be as exciting as being offered a book contract (although this is a possibility that could happen any day now), planning a trip to Glacier National Park (if you have any recommendations, send them my way), or meeting a bulldog puppy at the Iron National Bank (I nicknamed her Potato, but I think the bank tellers are more spot-on that her name should be Meatball).
If you remember, I read a book over the summer that I now consider the best book I’ve ever read on mindfulness, time management, and productivity: The Sweet Spot by Dr. Christine Carter.
Truthfully, I haven’t read that many books on time management and productivity. However, I have bought a quite a few over the years and checked some out from the library. Funnily enough, I could never find the time to read them.
Not only did I read The Sweet Spot in its entirety, I then followed through on Dr. Carter’s advice. This accomplishment is the highest possible recommendation I could ever give a self-help book.
Here’s how my cardio goal went down:
Week of September 15th, 2017 – formulate a 20-week plan to build an exercise habit which would result in 20 minutes of cardio every day except Sunday using the advice Dr. Christine Carter lays out in, The Sweet Spot.
Follow through on plan.
27 weeks later write a blog post celebrating my success!
Okay, there’s a little more to it than that, which is why I highly encourage anyone who is serious about changing how they manage their time or even just thinking about it to read Dr. Carter’s book.
I would have written about my success sooner, but, you know. Life. And now I can further celebrate my success with an additional seven weeks of cardio.
Yes, I’m still jumping around for 20 minutes every day (for the most part). It feels good!
I credit Dr. Carter with a big chunk of my success, because her advice really went a long way towards my self-defeating tendencies such as procrastination and excuse making. I also need to give myself some of the credit, too, because I’m the one who actually had to show up every day and exercise. If I didn’t want my health to be a top priority in my life, it would have been easy to scrap the whole cardio plan since I already had established a daily 20-minute strength training regime that is working out nicely for me.
What really helped was being mindful of the process and that’s something Dr. Carter encourages throughout her book.
I already knew what would happen on days when I just couldn’t motivate myself to exercise because of a poor night’s sleep, or a feeling of inertia that comes from winter, or lack of time because I had to be somewhere by 9:00am. For four minutes, I would do something related to cardio, such as plank and squats, jumping jacks, or dancing around. That’s what Dr. Carter refers to as a Better Than Nothing plan.
I also did everything possible ahead of time to ensure my success. This process involved thinking about why I wanted to establish a cardio routine and what would be the best way for me to exercise.
There were several whys, such as not getting out of breath while playing with dogs and losing even more of the weight that I gained in my first year of marriage, but the biggest reason is because I really believe consistent cardio is the best way for me to get a good night’s sleep.
For someone with narcolepsy, good sleep is the brass ring on the carousel of life we’re all hoping to grab. One of the most common misconceptions about narcolepsy is that you can fall asleep anytime, anywhere, such as into a bowl of soup when you’re at dinner. While in extreme cases that could happen, it’s not likely for the average narcoleptic.
What’s more likely with narcolepsy is one of the disease’s defining features– we can’t sleep at night, and when we do, we don’t get as much deep sleep as we need and we spend more time in REM having incredibly vivid, often disturbing or even terrifying dreams. So, we wake up exhausted and then have a tendency to fall asleep in a situation where we’d rather be awake.
You’d think I would have wanted to make cardio a habit in my life sooner. It’s not like I hadn’t tried. In retrospect, I believe I was missing one key piece of the cardio habit puzzle – I never considered how my choice of cardio relates to my core life values. Again, thank you to Dr. Carter for helping me realize this point.
At the top of my life values list are freedom and joy. When going down a cardio path in the past, I’ve enjoyed ice skating, hula hooping, Bikram Yoga, Daily Method, Pure Barre, and dance fitness classes. Throughout my life, I have committed to several months of these activities, sometimes even years. But these options do not promote freedom. They all require you to spend time driving to somewhere, then you have to spend time in the actual class, and then drive home again. Also, a lot of these activities require equipment and/or special clothing.
As someone who now values my time more than anything else and who also has a goal of getting all my belongings down to a single backpack, I just can’t make those types of commitments anymore.
I also have no desire to make a commitment to anything that does not bring me joy. There have been times in my life when I committed to going to a gym for 30 minutes a day to use boring (in my opinion) cardio machines such as treadmills or elliptical trainers. I hated exercising on those machines, and it’s hard to sustain a relationship rooted in hate.
Also, cardio machines cannot fit in a backpack and unless you have them in your home, you have to go somewhere else to use them. So again, that takes up more time that I don’t want to give up.
When I thought about my past failed attempts and what I wanted to achieve, it became obvious I needed to do something that I could literally do anywhere and that also would require no special equipment, including sneakers. I don’t own a pair anymore (I wore through my last pair in May, 2017) and I sure as heck am not going to buy a pair just so I can exercise. That would then make exercise dependent on an external circumstance and that’s exactly what I’m trying to avoid.
I also realized I needed a form of exercise that I could do in my jammies.
Okay, yes, this one is weird. But, when you have narcolepsy sometimes even the act of changing your clothes in the morning can seem like a lot of work. I also knew from past experiences that if I didn’t exercise first thing in the morning, I wouldn’t do it all. Add to that a drafty house in Connecticut, and you’ll understand why this became an acceptable form of exercise attire:
Taken all these insights together, here were my cardio requirements:
Can be done anywhere
Requires no special equipment or clothing
Brings me joy
Works if you’re wearing jammies
Ready to know what it is?
Drumroll, please … DANCING!
Not only does dancing meet all my requirements, but you can get pretty wild with jumping around, or if you’re having a less motivated day, you can bop around, or if you’re having a narcolepsy day, you can simply sway to the music.
You can also alternate the amount of effort you put into your dance moves, thus creating a nice interval flow to the workout. And if you don’t believe me, check out the Norfolk Library’s Corner Club kids breaking it down for Black History Month last month when the library brought in a hip hop dancer.
Twenty-seven weeks ago I wasn’t doing any cardio. And now I am. Even better, that’s 20 minutes nearly every day that brings me joy – both in the process and in the sense of accomplishment. That time would have gone by no matter. I am so grateful to have found a way that works for me, and I am even more grateful to Dr. Christine Carter for sharing her wisdom.
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.
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.
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.