Well, it’s that time of year again. Happy Birthday to me and happy birthday to my blog. I turn 45 years old tomorrow and my blog turns six. I wish I could say I’m feeling festive. Unfortunately, I just feel tired and beaten down. In lieu of my typical blog birthday photos with dogs wearing party hats, here are dogs covered in dirt because that’s all I can muster today.
A friend recently told me that they lost one of their teeth. It’s going to take a few weeks until they can get an implant, but in the meantime they told me they’ve been getting the best sleep of their life.
“Which tooth?” I asked them. There’s not much I wouldn’t try at this point to get a good night’s sleep.
So, if you see me without a tooth in the coming days, weeks, or months, know that I still haven’t given up hope that someday I’ll get decent sleep on a regular basis.
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.
the light streaming through the trees in the Barbour Woods;
Okay, I know this one is a little weird. But lately my body and mind have been craving functional forms of fitness and shoveling snow will give me that fix every single time.
I’ve also been thoroughly enjoying walking Annie through the snow-covered woods for the same reason. It’s such a great, blood-pumping, muscle-engaging workout to walk through the ankle-deep snow.
And last, but not least, these mashed potatoes:
I made a low fodmap vegetable stock recipe the other day. You throw a bunch of vegetables like leeks, the green parts of scallions, carrots, parsnips, parsley, and potatoes in a big pot with water and let it simmer for an hour. Then the recipe says to strain the liquid and discard the vegetables. Heath questioned the part about discarding the vegetables. I told him, “that’s what the recipe says.”
Yet, when the time came to actually discard them I looked at the wonderfully soft potatoes and thought, surely I should mash these instead of throw them out. Which is exactly what I did. And, oh, my, potatoes! They are the most delicious mashed potatoes I’ve ever eaten, a sentiment also shared by Heath.
So that’s where I am these days. My sleep is improved enough that I find mashed potatoes marvelous. Life is good.
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.
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!
I’m on day two of a treatment for narcolepsy. As I wait and see how much the medicine helps, I continue to celebrate small wins. Figuring out how to create a video of Annie on our walk last week with a particular song playing in the background is top of my list for small wins that equal REALLY BIG FEELINGS OF ACHIEVEMENT.
I’ve noticed that lately I’ve been a glass half empty kind of person. The first night I tried this medicine, which I took before from 2008-2015, I had the following thoughts: what if I die? What if I stop breathing? What if it makes me lose my mind? What if it doesn’t work. I worked myself into such a state of anxiety, that I decided I wouldn’t be able to fall asleep without wearing my ApolloNeuro Touch Therapy Device.
From their website:
Apollo Neuro is scientifically sound, wearable touch therapy that you wear on your ankle or wrist. Apollo’s silent, soothing vibrations speak to your nervous system, telling you that you’re safe and in control. Developed by neuroscientists and physicians, it’s a safe, non-invasive stress relief tool for adults and children, without drugs or side effects.
I had invested in the Apollo Neuro to help my sleep, which I can’t say that it did. But I have found it to be soothing in certain situations. So I slapped it onto my wrist and curled into the fetal position.
I woke up a few minutes later thinking I was having a panic attack because my whole body was shaking.
Except it wasn’t really. It was just the Apollo Neuro. Unfortunately, the way I contorted myself resulted in the device vibrating directly against my chest.
The next night went much better, and I certainly had less dramatic thoughts. But these other thoughts never once crossed my mind: What if this the best thing to happen to me? What if my sleep completely improves? What if everything starts getting better?
I suppose the good news is that now I’ve realized I’ve been glass half-emptying it, I can switch my thought process. Part of me would like to understand why I became a glass half-empty kind of person and part of me doesn’t care about the why.
Then there’s the other part of me that says, isn’t it more important that the glass is refillable in the first place?
I’ll save these questions for another day. In the meantime, here’s to the best night of my life! Hopefully.
I don’t want to alarm anyone in Norfolk, but there’s some sort of creature hanging out on the Swamp Trail in the Barbour Woods.
This creature enjoys splashing and swimming. Every so often, she jumps out of the swamp and shakes off her coat all over innocent bystanders.
If you’re lucky, maybe you’ll get to see her. Be forewarned: encounters with this creature result in moments of pure joy and lots of smiling. I mean, honestly! Just look at those ears!
It moments like these that I hold onto because the narcolepsy continues. Of course I’m still sleepy.
Today, however, I am also hopeful.
When I spoke with my sleep doctor last week, we agreed to try a medicine that worked wonders for me for seven years. Overtime, its effectiveness diminished and the side effects became more pronounced. I’m hoping because I haven’t taken this medicine since 2015 that my body and brain will have completely reset itself.
Now, the challenge is getting the medicine. It’s only available at one pharmacy in the country and there’s a lot of paperwork and verification that needs to happen first. So far, I’ve had to email the pharmaceutical company a copy of my marriage certificate and license since the last time I took the medicine I had a different name ,and then on Friday I received notice I have to fill out a new enrollment application.
So, I wait.
In the meantime, Norfolk is on the brink of being a cornucopia of fall foliage. Now’s the time to get outside and enjoy it. Even better, bring a dog!
Hello Spring! Now that we’re officially one full week into spring, I’m starting to see some signs of change throughout Norfolk.
First and foremost, bulbs are starting to bloom! Here’s the first little one I saw last Tuesday when I went to take Annie for a walk.
Speaking of Annie, there is a direct, positive relationship between number of spring days elapsed and how muddy Annie gets on her walks. Here in Norfolk, spring is often referred to as mud season. These photos of Annie from our walk last week are perfect examples of why.
Even with all my struggles as of late with narcolepsy, I’m delighted to report that I *finally* finished a writing project yesterday I started in November! I say *finally* because I thought I would have it finished by January. That thinking was ridiculously optimistic, considering my sleep challenges, and essentially working full-time again. Nevertheless, I am now the proud writer of the first draft of an adult fantasy novel. It’s for adults who miss the whimsical world of Harry Potter but want more romance and comedy in our fantasy stories.
I still can’t believe I wrote a manuscript that is over 96,000 words. I first started this manuscript back in July of 2016. Heath had given me a writing prompt of the word box. I then remembered one of my colleagues at Benedictine University telling me she thought there was a portal to another dimension in her apartment because her cat kept disappearing. I put those two ideas together and started writing. About 35,000 words and several weeks later, I stopped writing. I felt frustrated at how long the writing was taking, and I felt scared that I would never be able to finish a story of that nature because even at that time I knew it would be somewhere around 90,000-100,000 words.
So, I put the manuscript aside and started working on other projects. I have since written 8 books (!!!), the longest of which is 56,000 words (which, fyi, is a relatively low word count for adult books, but more on target for middle grade and young adult, which I was mostly writing). I guess that’s what I needed to do because I finally felt like I could re-commit to this project. Plus, Heath kept asking me to finish writing it because he loved the idea and some early pages I had shown him.
I re-started the project on November 1, 2020, with the kick off of National Novel Writing Month (NaNoWriMo). In NaNoWriMo, you’re considered a “winner” if you write 50,000 words in 30 days. I decided to start my story from scratch, but because I already knew these characters, and where the story was going, it was relatively easy for me to get those first 50,000 words. The only day I missed writing in November was the day Faith died.
After 30 days of writing sprints, my stamina petered out a bit. I made it a goal to write at least 100 words every day, just to keep momentum going. Even though 100 words a day isn’t a lot when you’re aiming for 90,000 words, it at least kept me moving forward. And, on most days, I ended up writing a lot more than 100.
Some days, I didn’t think I’d ever make it to the finish line. But on March 27, 2021, I typed the words The End and closed my computer.
I did a victory dance around the living room, messaged Heath, and then life very quickly went back to okay, what do I do now?
At that point, it was close to bedtime so that’s what I did. For the next two weeks, I’m taking a break from writing. This blog post will be the last thing I write until April 11th. I’m kind of excited. I’ve never consciously chosen to take a break from writing like this, and I’m both terrified and relieved to give myself that kind of time.
Enjoy these early days of spring! And to those who celebrate – Have a happy Easter next week! See you in two weeks.
Today marks my least favorite day of the year. For people with narcolepsy, daylight savings can wreak all kinds of havoc on our already precarious sleep-wake cycles. If my past is any indicator of my future, It will take me weeks to recover from this loss of one hour.
Morning #1 of Daylight Savings 2021
In the meantime, I hold onto the small things in life that bring me joy. Here are two examples:
First, meet Fergus! I had the delightful privilege of caring for this little fella for a few days recently. For such a small dog, he has taken up a big space in my heart.
Second, the artwork! The Norfolk Library is known for its rotating art shows. During the pandemic, the Library featured several shows from Norfolk Artists & Friends, a community of visual artists in Norfolk. When this piece was displayed in December/January, I told the artist, Hilary VanWright, how much I loved it — the colors, the message, the exuberance. When it came time to take the show down, Hilary gave the piece to me. Just like that! She didn’t have room for it and she knew how much I appreciated it. Every day I look at this art and I feel not only gratitude, but encouragement to keep going.
Since it’s almost St. Patrick’s Day, here’s another small thing that has brought me joy lately:
The president of the Norfolk Library Associates brought in shamrocks for us to give to patrons. I love coming into the kitchen every morning and seeing the bright pop of green and the lean of the flowers towards the sun.
That’s what I’ll be doing these next few weeks. As I try to work within my disabled sleep to get back on schedule, I will lean into the longer days of sunlight. I know I’ll make it through these next weeks no matter what. But it’s good to have a literal beacon of light guiding me forward.
Stay rested, my friends! And may the luck o’ the Irish be with you this week.
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.