Category Archives: Insights

Tiresome Travel Troubling

I have known for the last 4-5 years that traveling tends to exacerbate the impact of my narcolepsy, in terms of both my sleepiness and its impact on my overall health. The situation makes tons of sense when I think about it — my schedule gets thrown off, driving and flying for long periods put additional stress on my body, I am not in my own bed, and even changing one time zone can affect my biorhythms. As a result of this reality, I do try to allow myself extra time for recovery when I take a trip. I also do my best to balance my activities while traveling so I do not exhaust myself. Even in the best scenarios, my efforts are only mildly successful, but this current summer has put me into an entirely different place.

Because of my new job, I have already spent far more of my summer working like mad to get things ready for the next school year. So, even before my extensive travel started, I was already run down. Added to that is the fact that my daughter is in between grades 11 and 12, so college visit trips have filled up the second half of our summer. My wife, my daughter, and I visited 6 schools in 4 days during our first circuit after spending a long weekend with friends. The experience was awesome in every possible way, but it also left me reeling for the entire week after our return. And, during that week, we decided that my daughter and I would head to 2 more schools this week preceding a conference my wife is attending. All three of us think this current trip is a good idea, but it also heightened the stress level in our house, particularly as my daughter and I reworked almost an entire week of work. And, I was (and am) painfully aware that the cold I got from our first trip continues to linger. Truly, my sinuses are a mess, and I am definitely worried that I will be paying for these trips with my health well into the coming school year. Underscoring that concern is the fact that our busiest trip is yet to come. My daughter and I will make our third and final trip in the first week of August when we plan to visit 8 schools in 4 states during a 5 day window.

Although I do fear what all this flying and driving will do to me physically, I am thoroughly enjoying the experience. Just today, my daughter and I toured a school in the pouring rain. We would definitely have preferred a sunny day, but we still had a great visit. The school impressed both of us, but even better was the fun we had with each other. We took a train there and back, navigated the local bus system, and even found our way to an Ethiopian restaurant (that my daughter wanted to try) near our hotel. We are both exhausted, and we are getting up early for another visit and tour tomorrow, but we are being good to each other and appreciating the experience. In fact, the trek from our hotel to the train station this morning took us across the campus of a college she had not been considering, but tonight she added it to the list because she was so impressed by it. Our final trip in early August will require me to do a lot of driving (since we will be hitting 4 different states), and that makes me nervous because I know how draining the car travel will be. Yet, knowing that the two of us survived our wacky experiences today, I firmly believe that we can make that last trip work, especially if we are conscious of being kind to one another.

These interactions with my daughter are the thing that makes me the most frustrated about how travel tires me and lowers me ability to stay healthy. She is amazing, and I love spending time with her. I just wish the toll for these trips was not so steep for me. That being said, I would not trade these opportunities for anything. More than anything, I need to step back and recognize how choosing to take these trips does have repercussions. And, I need to remember the importance of this time with my daughter when my health, sinuses, and sleepiness continue to spiral on me over the next few months. I also know that I must be more attentive to taking care of myself to minimize as much as possible the negative impact of these college visits. What I must avoid, though, is letting my compromised health steer me into short-changing my wife, my daughter, or myself in our daily lives.

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Filed under Balance, Driving, Exhaustion, Family, Frustration, Gratitude, Humility, Illness, Insights, Joy, Love, Narcolepsy, Parenting, Scheduling, Sinuses, Stress, Travel, Wisdom

Stress Saps, Stinks, and Slows — for Sure!

The past two weeks at my new job have been insane. As the “technology integration specialist” at my new school, my primary responsibility is to get technology into classes and curriculum, but to do that there needs to be devices for students and teachers to use. Thus, much of the past couple weeks has involved updating, preparing, and evaluating equipment at the school. And, while I do enjoy being helpful when it comes to setting up a computer or moving a piece of equipment, the needs at my new school have been extreme (to say the least). The most amazing part, though, is that I have both been able to put in some extreme hours and been able to stay reasonably calm and upbeat during the process.

My work yesterday, with extremely dated Microsoft Windows PCs, did stretch my patience to its limits, but I wrapped up much early than I did on my other two excessively late nights the previous week — 10:30 PM this time (rather than 1:30 AM and 12:30 AM for the other nights). All of it, though, underscores for me how toxic my previous job had become for me. Had I attempted even one night where I worked close to midnight (doing anything), I would have been recovering for days. Now, at my new job, I have have had three ridiculously late nights within a 10-day period, yet I still have energy and enthusiasm (which is truly remarkable given that overwhelming tedious nature of the work each of those nights). I fully realize that I cannot afford any more nights that stretch far into the evening, but the fact that I have done so multiple times and still have something in the tank is mind-blowing to me.

I share all of this to underscore how deeply stress can impact a person with narcolepsy. The amount of physical, mental, and emotional energy that I expended in my previous job is staggering. Certainly, narcolepsy makes my life difficult, but battling those internal elements (brought on by external realities and my perceptions of them) exacerbated every aspect of my narcolepsy. And, the cycle of facing those stressors, wasting more energy on them, getting more run down, and then finding those same stressors even more insurmountable became its own form of torture. I find it staggering that so much of my limited energy went into simply surviving each day.

The exciting insight for me is that embracing something for which I have enthusiasm (rather than battling aggravations) gives me energy rather than sapping it. The lesson is made even more clear to me in my current situation because the reason for the late nights is mind-numbing boring work — updating software, setting up student PCs, and setting up digital services. Although those activities could prove to be stressors for me in other circumstances, I can (and do) find purpose in them at this time because they will benefit my new colleagues and our students. It also gives me hope as I begin looking for areas of “passion” within my non-work life. And that prospect is truly thrilling. For much of the last 6 years (when I was diagnosed) and even farther back than that, I have only given up activities I have loved and enjoyed in an attempt to survive. Suddenly, I feel like I could start looking for ways to spend free time that would bring me even more strength and energy.

After so many years of facing what narcolepsy “has cost me,” my world has turned on its head. Losing the enormous deadweight of overwhelming stress has unyoked my head and my heart. I am doing my best to stay calm in the midst of this new development, so I do not lose perspective. Balance is most definitely the watchword for me these days, but it is wonderful that hope, joy, and enthusiasm are now things I need to keep in check (rather than items completely missing from my daily life).

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Filed under Balance, Blessings, Emotions, Excitement, Exhaustion, Gratitude, Honesty, Hope, Insights, Joy, My story, Narcolepsy, Serendipity, Stress, Technology, Wisdom

Driving and Droiding

We are now on the road home (Interstate-35 South). Even though I have had this WordPress app on my Droid X since last summer, I am using it for only the second time. Some of that is the result of Bite Size Life disappearing from cyberspace, but it also a result of how easy it is to fall into old patterns in my life. I become heavily focused on daily survival during the school year, and that tendency has only increased during this current school year. I expend soooooo much every day at school, not only to make sure that my classes are functioning, but also to mitigate the negative impact of my one negative colleague. I have no doubt that the experience would drain anyone, but adding narcolepsy to the mix makes for a ridiculously stressful existence. And, it gets harder and harder to think outside of the box, in terms of finding healthier ways to balance my life. Even as I am typing this post, I am realizing that I could easily post an entry after a stressful day, or even during my 45 minute break between classes. On most days, I am helping students during those times, or I am trying to get something done for our class, but remembering that an outlet and escape sits on my hip. While I am a huge advocate of utilizing technology, I know that I remain a digital immigrant because it takes me months to integrate fully technical solutions into my life. And, my narcolepsy often benefits from using technology to make my life more efficient.
Again, this post is a perfect example of my point. Usually, I would be drifting in and out of the music and conversations in the car. Instead, I feel good that I am using a few minutes to process life with narcolepsy. The more I can allow myself the chance to step back from my day, the better I am able to cope with this disease. I remember how important it is to breathe. I remember that my fatigue and sleepiness is normal and okay. I remember that I am far more than this disease, my job, my frustrations. If nothing else, taking the long view helps me to embrace the moments of joy that do come into everyday. I think that is a pretty good result from recognizing that I can blog from my smartphone.

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Filed under Balance, Blessings, Blogging, Driving, Family, Frustration, Gratitude, Hope, Insights, Joy, Narcolepsy, Travel

Magic Moment

First and foremost, I finally made it back to work today – way to go, me. Thankfully, the day was relatively low key. I still am struggling mentally and physically, but I know that getting back into some level of routine will help me in many ways. We also were introduced to an interesting program today – the Green Dot initiative (www.livethegreendot.com). The program targets power-based personal violence with strategies to encourage bystanders to become allies. While the presentations left something to be desired, I love the core concept and the message of one small action at a time is a tangible and powerful one. Hopefully, it can be one more tool in the constant struggle U.S. society, in general, and schools, in particular, use to combat bullying and verbal, emotional, and physical violence.

While the day was tiring, the highlight came at the end of my work day. A dear friend (and former co-teacher) shared an exciting event from break week. This teacher has been accepted into a doctoral writing program. Like me, this person has also had a difficult year; in fact, I would argue one that is much worse than mine. Thus, I am thrilled that this colleague will have options moving forward. The individual still needs to hear from some MFA programs too. Another piece of our discussion made my heart race even faster, though. One possibility is that this friend could join my teaching team again. If that were to happen, I would be elated. In fact, this person even proposed an option that would involve me arriving each day at 7:30 AM, and I am actually considering it. One, I would do just about anything to work with this person, but two, I have an incoming ninth grader in my home who needs to get to school around that time any way. For grade school my wife has been the primary morning driver, but I was already worried how our family would handle the change to high school. Clearly, many other things could happen, but I am feeling more hopeful today than I have in a long time about what the future might hold. It is amazing how a single five to ten minute period can make such a profound impact on me. I also love that narcolepsy has made it more likely that I am able to appreciate those moments. Rather than dwelling on a multitude of negatives from the rest of the day, I can cherish a shining instant of joy.

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Filed under Blessings, Education, Emotions, Excitement, Family, Friends, Gratitude, Hope, Insights, Joy, Narcolepsy, Parenting, Wisdom

Correcting and Convalescing

I awoke today and felt horrid , so I stretched my spring break by a day by using a sick day. I am still not sure how I will be feeling tomorrow, but I do hope that I can get to school. While I did spend the day resting, I was also able to get the grading done that I needed to finish. My focus was mediocre at best, but that likely worked to my students’ advantage. Nonetheless, it is a welcome relief to have the grading done. It drives me crazy that even working part-time is a massive strain on me and that I needed a “day off” even though I had the entire preceding week as vacation. Narcolepsy has many twists and turns, but the constant fatigue can truly drive one nuts at times. One upbeat item from the day is that I do not feel guilty that I stayed home from work. While I know that I would have completed the grading even without the staying home, I certainly did a better job because I was not trying to juggle events at school while I was working my way through things. Plus, I definitely have something crazy happening in my body these days. It could still be recovery from pushing myself to complete the previous trimester, but it could also be a sinus infection or some part of my body going haywire from my various ailments. I simply like that I have reached a point that using a sick day does not cause me overwhelming remorse. The reality is that I have a chronic illness (or two), and thus I need to use my sick days periodically because my body pays a price for me constantly engaging with my students, my family, and my life. The next step will be for me to come to terms with the resentment that I still harbor because I cannot “do” everything that I want to do. Even with my day today, I found myself getting upset that I did not get more done. Even though I did more correcting than I have done in weeks, I was frustrated with myself for not accomplishing more. Somehow, I think I will be walking on this particular path for quite some time, but I do hope that I will eventually find some peace around things that I have “lost” due to my medical condition. I also love that I written two posts in two days. That too is a small victory for me.

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Filed under Blogging, Education, Emotions, Exhaustion, Frustration, Illness, Insights, Loss, Narcolepsy, Sinuses, Wisdom

Partial Productivity

>The last day or so have gone decently for me. While I do still feel adrift, I am having spurts of success when it comes to knocking one or two things off my ever-growing list. Beyond the finances, I filed somethings in our office, and I managed to get some tasks done for MOONS-MN. Most importantly, I got invitations out to others for the MOONS-MN gathering this coming Saturday, July 18. I definitely hope that a few people can make it. We are trying to have a few gatherings that are more social in nature because we know that many people want to have MOONS be more of a support group.

The best part about getting the emails and the U.S. Mail sent is that I will not feel any guilt or shame now, regardless of the turn out on Saturday. Had I been unable to accomplish those tasks, though, I am sure that I would have blamed myself for any failures (real or imagined) that might have happened. I definitely wish at times that I did not have this overdeveloped sense of responsibility. The reality is that I can only do so much, and I am honestly putting forth my best effort. I also feel good that I am making progress in helping get MOONS more organized – many hands truly do make light work.

One goal that I do have for today is to put closer to one thing around my house. I am not sure yet whether that will be our office (or at least the clutter on the desks – since there is MORE to do than I can accomplish in a day) or cleaning the kitchen completely. I feel like I am slowly wrapping my head around the idea of chipping slowly away at my many tasks. That is just one more piece of the lifelong journey that living with narcolepsy gives to me. I also know that I will need to spend some time this afternoon resting. My sleep last night was limited. Although I intentionally worked late, I still managed to fall asleep (post-Xyrem) in our office. Fortunately, my wife rescued me and brought me to the bed for a couple hours of decent sleep.

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Filed under Balance, Chores, Cleaning, Family, Frustration, Gratitude, Humor, Insights, Marriage, MOONS, Narcolepsy

Groggy Gray Grumpies

>I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered – I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that “work” resulted in me being even more wiped out AND the following:

  • House is messier today than it was on Monday
  • Lawn is still not mowed
  • I need to make two phone calls – one to set up yet another meeting
  • Our office is still not cleaned
  • Our finances are not yet up to date
  • Oodles of things need to get done for my job
  • Oodles of things need to get done for MOONS-MN
  • Oodles of things need to get done for our house – window stain, door paint, room touch up, blinds hung
  • My wife is depressed, and more from me would help
  • My daughter needs us to run errands and help packing for an overnight

I often find the hardest thing about narcolepsy is letting go of the shame and guilt that a list like this one can foster. I KNOW that I did a decent job this week, but it scares the hell out of me that my progress during the week resulted in everything getting further behind. I would love to pretend that I will just “work harder,” but that is not possible. In fact, pushing too hard is what got me to this morning when I awoke feeling like I had been run over. It is a strange, sad cycle. And, if I am not careful, I can let it eat me alive. My baseline has always been an all or nothing approach. I throw myself into things, or I completely surrender. Unfortunately, that approach has never worked out super well. And, when it gets right down to it, it won’t in this moment either. I will NOT get that list above done today, tomorrow, next week, or possibly even next year. I also will NOT give up my wife, my daughter, my house, my job, my health, or my sanity.

My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don’t). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight – pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least “get it” when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.

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Filed under Balance, Depression, Empathy, Exhaustion, Family, Friends, Frustration, Honesty, Hope, Humility, Insights, Narcolepsy, Relationships, Wisdom