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.

Leave a comment

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

Finally Finding Freetime

I find it fascinating that this blog is constantly on my mind, that I regularly have the desire to post to it, that I know spending time writing it often brings me piece, and that I still manage (knowing fully well all of the above) to go months without adding anything to it. I must confess, though, that I am also pleased to be at a point where realizations like that do not cause me to beat myself up. The truth is that, with narcolepsy, my time and energy are limited. I am proud that I have spent much of the last year and a half working to prioritize my wife and daughter and my own well-being over anything else in my life. Of course, numerous rough spots have happened in that same period of time, but I am even better at working my way through those moments.

I am also finding it easier to be at peace with my narcolepsy and to make time for myself because I have made good choices in terms of my work environment. In January 2013, our little family hit a major crisis point, largely because I was bringing so much frustration and anger home from my job. I still loved being in the classroom, but the politics and lack of leadership was eating away at me on a daily basis. Fortunately, my wife realized that the time had come for me to leave that job (even though it meant we would now have to pay a significantly larger sum of money for our daughter’s education since she was getting reduced tuition because I was a teacher at the school). I finished out the school year, and I found a new job serving in non-classroom position at a grade school. Although I knew I would miss the daily interaction with the same set of students, the new job afforded me the chance to have a broader impact because I was supporting teachers as they worked to integrate technology into their classes. Plus, I still got the opportunity to work with students on a frequent basis. Unfortunately, Catholic grade schools function at the whim of the Pastor, and the Pastor at my new school was (and is) not a pleasant man or a good leader. To put it simply, he describes himself as a zealot with a great deal of pride. He managed to drive out the school’s principal by the end of December, and I had taken my new job specifically to work with her. I did try to work with other teachers to get the Archdiocese involved, and they did do a fact-finding investigation, but nothing came of it. I also started looking for another job, as soon as my friend resigned. Ironically, as bad as things got at the new job, they never seemed to feel worse than what I had been experiencing at my previous job. I have no doubt that they would have if I had stayed at that Catholic grade school, but my job search led me to an opening at a different Catholic grade school. I interviewed there and accepted a position which required me to start immediately. The idea of me resigning from something mid-year would have been unthinkable to me even 2 years ago, but I did not hesitate in this instance. Clearly, making the change to the new grade school would absolutely be the best thing for me and for my family. By the end of March, I was the technology coordinator at my new grade school, and I was a significantly happier man, even though I had an astronomical amount of work to do. Finding a healthier and more supportive work environment in both of my job changes in the past year definitely made it easier for me to function and to cope with my narcolepsy. In fact, both positions required me to work full time, even though I had only been working 70% time since my narcolepsy diagnosis, and the reality is that both of the Catholic grade schools needed far more than full-time work from me to get their technology up to speed. I not only managed to work full-time and to do all of the extra work, but I also have been able to be more present for both my wife and my daughter. Again, I know that is a direct result of pushing myself to make the right choices for me.

I certainly feel like I have a long way to go to take better care of myself, but I also feel confident that for the first time in years, I am on the correct path to living a more grounded, balanced life as a person with narcolepsy. My two goals for the remainder of this summer are to start posting to this blog and my “new” (started in the fall of 2013 yet without any additional posts) technology blog at least once per week — specifically because they are good outlets for me, and I want to re-establish finally some level of regular fitness routine because I know that I need to improve my physical health to make my mental and emotional health even stronger. I am also hoping that making those 2 goals public here will push me to follow through. And, anyone reading this blog will certainly get the opportunity to see how success I am.

1 Comment

Filed under Balance, Blogging, Education, Emotions, Exercise, Family, Gratitude, Healing, Honesty, Hope, Illness, My story, Narcolepsy, Technology, Wisdom

Needing Narcolepsy Network

I have been a member of Narcolepsy Network since 2008, and even though I do “understand” how to live with my condition, every year I realize more and more that I NEED Narcolepsy Network in my life, particularly the annual patient conference (which I am currently attending in Atlanta). I love coming yearly to an event where I never need to explain my disease or justify my condition. Plus, seeing the smile on the face of someone I only see at conferences elates me every time it happens. I also adore that one can rapidly make a new friend simply by sitting down and starting to share. No one holds back from opening up because no one here would judge another person with narcolepsy (or any form of hypersomnia for that matter).

This year’s conference in Atlanta has been particularly spectacular. Of my 6 conferences, I feel like this one is far and away the best. We are staying in a remarkable hotel with outstanding food, Atlanta is a fantastic city, numerous alternative activities are available, and the line up of speakers has been breathtaking. In many ways, the only “major” narcolepsy researcher NOT here is Dr. Mignot who runs the Center for Narcolepsy Research at Stanford. Granted, his are big shoes to fill, but we have been blessed to have him at numerous other conferences. The doctors in attendance, though, (Dr. Thorpy, Dr. Siegel, Dr. Trotti, Dr. Rye, and Dr. Scammell) are all major contributors to the field, and most of them have made incredible discoveries in the past year or so.

Tremendous insights have been gained about the “role” of hypocretin (the “missing” item in the brains and Cerebral Spinal Fluid of most people with narcolepsy) and the activation of hypocretin producing neurons. It turns out that hypocretin deficient mice only “struggle” with tasks during periods of light. In the dark, they are as effective at tasks as their “wild type” (normal) siblings. So, it is entirely possible that hypocretin is directly or indirectly connected to the presence of daylight. And, additional research that hypocretin deficient animals, including humans, as well as “normal” individuals produce more hypocretin when engaged in relaxed and enjoyable activities. I am still trying to wrap my head around all of the implications of that information, but it certainly helps explain why I am often less sleepy at night, even if I have had an exhausting day, and why I am less sleepy when doing something I love (reading, interacting with people, teaching, watching movies and shows, playing ultimate). It certainly helps me understand why I am less tired coming home from my new job (which has been exhausting) than I was when returning from my previous position where the environment had become toxic for me.

Another incredible discovery of late is that histamine levels in people with narcolepsy are grossly inflated. Researchers do not know “why” yet, but are certainly speculating that it is connected to the loss of hypocretin. And, as someone with chronic sinusitis who takes fexofenadine (an antihistamine) every single day due to my constant swelling in my sinus — something likely caused by an “over active” immune system with lots of extra histamines. It is wild to think that two of the major health issues of my life might be far more related than I ever thought possible. The other incredibly exciting element of the increase in histamines is that it is likely the first time a brain system has ever INCREASED the number of neurons in a human brain, opening up the possibility that people can discover ways to increase other types of neurons.

Finally, lots of work continues to be done in looking for ways to reverse narcolepsy. And, although things are still a long way off, progress is being made. Work is being done to implant hypocretin producing genes via a viral vector. There is also another class of medications that is in phase III trials which also promotes wakefulness, possibly as effectively as Provigil and Nuvigil. And, Emory University continues to research into hypersomnia that is NOT narcolepsy with cataplexy, particularly sleep issues connected to GABA and Cerebral Spinal Fluid. All of this is incredibly promising and definitely provides multiple reasons to feel hopeful.

Still the best thing about Narcolepsy Network’s annual patient conference is the opportunity to spend time with other people with narcolepsy. Truly, no other experience can compare because NO ONE questions sleepiness or cataplexy or brain fog or needing a nap. Over 400 people are at the conference this year, the largest ever. And, last year attendance was maxed out for the space Narcolepsy Network had in Cleveland. I sincerely hope that. Those numbers continue to grow and that more and more PWNs can partake of the joy I find when I am with hundreds of other people who “get it.” It was announced yesterday that e 2014 conference will be in Denver, Colorado. Even though I still have half a day left in Atlanta, I am already getting excited to travel to the Rockies next October. Especially given the recent discoveries about hypocretin, it is no wonder that I feel more alert when I think about this conference. It is most definitely something I thoroughly enjoy.

Leave a comment

Filed under Non-narcolepsy stress

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).

1 Comment

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

Ready to Return

While I have no idea if anyone has visited my blog at all recently, I feel like the fog and haze of the past three years is finally lifting. I decide in February (with much consultation with my amazing and wonderful wife) that I needed to leave my teaching job that I have had for the past 20 years. While my health certainly played a role in the my struggles of the past three years, the reality is that my job had become a deeply toxic environment for me. While I still love my colleagues, my students, and the essential nature of teaching, the leadership and decision-making of my former school continued to drag me lower and lower into depression and frustration.

After I turned in my resignation, I felt a tremendous weight lift, but I still needed to finish the school year. Things went well, but the experience remained overwhelming. In the midst of all of that chaos, more and more signs clarified for me that I made the correct decision. While the school leadership seemed completely nonplussed by my resignation, the much clearer (and far more positive) message came in the form of potential new positions. From my classroom experiences of the last five years, I knew that my next job would involve technology integration, rather than direct student instruction. I had not planned to do any job searching until the school year ended, but potential positions kept finding me. I was interviewed for two positions in public school settings, and although I did not get those jobs, I was not only flattered, but also realized that I was definitely qualified to be a technology integration specialist. Then, as a result of submitting some of those other applications, a friend and former colleague offered me a position at a Catholic grade school. I took the job and started there on August 1 of this year. Even though the school year has not officially begun (and there is a great deal of work to do), I know (without any doubt) that I have made the right choice. I am significantly more at peace and in a far more supportive and well run environment. The added bonus is that my new colleagues are also more open as a group in pursuing technology integration.

Underscoring these positive professional changes, my personal life has also improved markedly. I made the decision to engage in professional therapy again at the end of the school year, in large part because of the impact my previous job was having on my family. The experience has been and continues to be tremendously rewarding. I have found myself, particularly in the past three weeks, looking at the world in a far healthier and more balanced way than I ever have in the past. My therapist is wonderful — in his ability to support me, to draw out my emotions, and to challenge my previously established views of myself and the world. What is most remarkable is that my therapist  has helped me to confront some of the darkest message that I send myself and to integrate them into who I am, allowing me to feel far better about myself. After many years of experiencing joy infrequently, at best, I fins myself overwhelmed by joy on a daily basis.  It has been glorious, to say the least. Even more importantly, all of this has made my relationships with my wife and daughter stronger than ever.

I am thrilled that I my life and world are in such transition and upheaval. And, I am proud to be posting to this blog once again. My goal is to post at least once a week. It will be good for me on many levels, and I still believe that it is important for me to explore and process how narcolepsy impacts my life. As was the case when I began this blog long ago, if no one else reads this, that is just fine. Nonetheless, I do hope that I can help a few other PWNs (and other folks with sleep issues) in some small way. On that note, I am already signed up for this year’s Narcolepsy Network Annual Patient Conference in Atlanta from October 18-20. Hope to see others there!

Leave a comment

Filed under Balance, Blessings, Education, Emotions, Excitement, Healing, Honesty, Hope, Humility, Joy, Love, My story, Narcolepsy, Narcolepsy Network, Non-narcolepsy stress, Relationships, Support, Therapy, Wisdom

Back to Blogging

I find myself in Las Vegas at the Narcolepsy Network Annual Patient Conference, and I can only wonder why I have not been writing more. Unfortunately, I have drifted away from many of the activities that have helped me manage this condition best. Fortunately, I have moments like this conference to remind me of WHY I need to blog about narcolepsy and its impact on my life. In fact, I even got to attend a session here that featured one of my heroes, the author of REM Runner, THE BEST narcolepsy blog on the Internet. Her session was fantastic because it reminded me that this blog is, first and foremost, my space for coping with my condition. I remain thrilled that others have benefitted from my story, but more than anything, I need to write about my narcolepsy because the disease makes my life difficult.
The other excellent aspect of REM Runner’s session was the room was filled with other bloggers with narcolepsy (BWNs?). It is incredible to know that numerous people with this condition are helping to tell our collective story in cyberspace. And, getting to spend even 75 minutes in person with them is inspirational. Plus, it reminds me that I am not alone in my struggles.
On that note, the road has certainly been difficult for much of the past year. I continue to feel overwhelmed by my life, partly because I am constantly trying to do more than my body wants to allow me to do. And, I have also let some of my health regimen slide. My two goals for the remainder of 2011 are to make my health more of a priority and to begin regular exercise again. Those two items must be a priority for me. Prioritizing my own health will bring numerous rewards, not the least of which is finding some outlets, like this blog, for the constant frustrations that I am feeling. The exercise will be even more important, though, because my physical strength and endurance has fallen precipitously, making every day a little tougher than it should be. Nonetheless, I continue to feel fortunate for the many blessings that I have in my own life. Truth be told, I have a great job that attempts to accommodate my narcolepsy, an amazing wife who constantly supports me, and a wonderful daughter who is doing the best she can to understand my limitations.
Beyond all of that, I am also lucky that I have been able to attend the Narcolepsy Network Patient Conference every year since I found out about it. This year, it is being held in Las Vegas, and while certain aspects of the venue and the organization are grating on me, it is glorious to see old friends and to make new ones. I definitely feel like I am doing the best that I have ever done in terms of getting rest and not overtaxing myself. I also feel good that I am finding ways to contribute without driving myself into the ground. The reality is that I enjoy helping others, but so often give too much of myself away in the process. At least here, I genuinely believe that I am maintaining a good balance. Heck, I am not even beating myself up for blowing off multiple sessions so I can rest in my room.
Thus, as dark as things have seemed lately, I know I am glimpsing some light for the first time in a long time. And, I am certain that I will not be seven months until I post again.


Filed under Heroes, Narcolepsy, Narcolepsy Network, Sharing

Whirlwind Week

It is Thursday evening, and my week feels like it has flown by. Monday, we had no students at school, but needed to be there for an in-service and department meetings. The in-service was amazing. Uncommon Seminars came to lead us in activities designed to help us in our communications with each other. Eventually, our school is hoping to develop a system of teacher, staff, and student support that would resemble the house systems at other schools. To do that, though, our faculty and staff need to learn how to dialogue far more honestly with each other. The folks from Uncommon Seminars helped us take the first steps on that path (and we had a blast doing it). Then, we all got to go to three hours of intense department meetings. Needless to say, I was exhausted by the end of the day, but I still needed to get my daughter home from her school, and I need to get my MacBook Pro into the Genius Bar. Tuesday and Wednesday were crazy because we are beginning research essays on human rights topics. So, between bombarding our students with information and trying to help fourteen and fifteen year old students sort through horrific global issues, I found myself leaving school both days with little to no energy. But, neither day ended with the close of school. On Tuesday, my parents, my wife, and I attended our daughter’s band performance with the combined advanced band and jazz band. Students from various grade schools come together each year to rehearse for weeks to perform this concert. It was great, and I love that my parents got to see her perform, but my brain was turning to mush before we ever got to the concert. Then, on Wednesday evening, all of us had dinner together. The food was fantastic (we ate at The Happy Gnome in Saint Paul), but again, after repeated full days, a three hour dinner with my family does not leave me much room for recovery. Today, I had to get to school far earlier than normal because I was assisting with the young men’s retreat for our eleventh graders. The event was outstanding, but it was another full day. Plus, I had to grade students making up presentations when I got back to school after the retreat. At one level, I am thrilled that tomorrow is Friday, but I also find myself shocked that I still have one more day to go before the week ends. I will get through tomorrow; I just do not know where I will find the energy to do it.

Making things even tougher are a number of sad (and infuriating) pieces of news in my life. Topping the list, my father-in-law is in the hospital again. He has been battling a number of medical issues for years, with the worst three being sleep apnea, type II diabetes, and Parkinson’s disease. But recently, things have gotten worse,  and he is having problems with strange infections that are requiring hospitalization. Beyond that, three different colleagues at work have gotten serious medical things happening. One woman is being placed on extreme bed rest for her pregnancy. Everything should be fine, but still, for a woman to be on bed rest at 31 weeks is a tough situation. Then, another female colleague is having a hysterectomy. And, a third colleague is facing a spinal tumor that is most likely not cancerous, but may eventual confine her to a wheelchair. Far down the scale of serious (yet still frustrating), a friend at work who I am hoping to teach with again is having ridiculous pressure put on her to rush some significant life choices. And, I just learned through the REM Runner blog that the Supreme Court has agreed to hear a case on “ministerial exception” involving a Lutheran school that fired a teacher with narcolepsy in 2005. The school is asking the Supreme Court to rule on whether the “ministerial exception” applies to a teacher who the school has designated a “minister.” The ruling is important because if the “ministerial exception” does apply that teacher cannot sue the school under the Americans with Disabilities Act. Although I feel quite safe in my current situation, the case hits far too close to home. Anyone interested should definitely head over to REM Runner (because she provides far better clarity to the case than I could ever hope to do).


Filed under Confusion, Education, Emotions, Empathy, Exhaustion, Family, Friends, Frustration, Gratitude, Honesty, Illness, Narcolepsy