Category Archives: Illness

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

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.

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

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).

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

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

Regularly Random Routine

One thing I know helps me is a set routine. Unfortunately, I do not feel like that has happened since the previous school year ended. I have come to expect that my summers will be all over the place. Because I teach an intensive creative writing course and then we travel, summer tends to be an unending cascade of starts and stops. Since my profession allows me two and a half months of unpaid vacation, I usually handle the rudderless aspect of June, July, and August as well as I can. Usually, though, the arrival of September affords me the blessing of a fairly standard daily schedule. For some reason I have yet to find that rhythm this year.

Certainly, the crazy weekends that took place for my family in September exacerbated the situation, but it goes well beyond that. For the first time that I can remember, I had more of a pattern to my day in August than I do right now. Rather than getting easier, my days seem to be growing in complexity. I have no doubt that much of that is in my head and in my reaction to my narcolepsy. Nonetheless, my days feel much more fragmented. I am weathering them well, partly because I have come to accept the reality that I have a disability. Still, I find my anger and frustration rising to the surface far more often of late. I also know that my depression seems to be growing in strength lately. I also find it difficult to “be hopefully” while also “accepting my realities.” As always life and narcolepsy seem to be a paradoxical and oxymoronic as the title of this post!

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Filed under Confusion, Depression, Exhaustion, Fear, Frustration, Honesty, Illness, Loss, Narcolepsy, Stupidity

Craft Craze

I had an excellent time today going to look at crafters. Unfortunately, my wife was too ill to join us, so my daughter and I ventured out alone. We needed to exchange a shirt at the aquarium first, which was also an excuse for my daughter to get an awesome funnel cake (it looked like a pound of powdered sugar!). Then, we headed east for the eight mile artisan loop. Since it was hot, we knew that we could not go to many places, but we did check out a few shops.

The woodwork and art that we found blew my mind. I am glad that we made the trip because I will now push harder to make it a priority the next time that we come here. Gatlinburg has amazing talent in this eight mile loop. We did make a few purchases, but I was tempted to get far more. Wisely, I realized that my wife would need to okay the larger purchases. It simply means that we need to return here again.

The best part of the day, though, was simply getting out. My sinuses definitely seemed to be better today. I felt good being more alert and having the chance to connect with my daughter. I continue to worry that narcolepsy will prevent me from knowing as well as I might. Gratefully, days like today remind me that I can find windows. I am excited to head home, but feel like I had a great vacation in spite of my medical woes. We have already packed most of our stuff, allowing us to plan for a 6 AM departure. I hope that I can be ready since I was the delay on both days of our driving down here. Tomorrow is definitely the “longer” day, but we should hit our worst stretch (Pigeon Forge – 5 miles in one hour) before anyone else is actually awake. We will stay in northern Indiana again, but booked a hotel slightly closer to Chicago. I like that I am ending this trip on an upbeat note. That has not been my previous experience very often.

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Filed under Balance, Driving, Excitement, Family, Gratitude, Illness, Marriage, Narcolepsy, Parenting, Relationships, Sinuses, Travel

Internet Interruption

I love that I am constantly learning new things about myself. While a portion of that statement is facetious, I do like that I am open enough to recognize important factors about my mental and physical health. So, we are on vacation. Gatlinburg has been great, but my sinuses has not. I am also furious that my resort DOES offer an internet connection, but for a fee. I realized this after returning from McDonald’s on Sunday. My rage only increased when I learned that the resort’s internet is provided by Wayport. While Wayport has been around for a while, apparently the company is now owned by AT&T. The irony is that I am supposed to be able to connect to AT&T wifi because of my own internet connection at home. In fact, I used the Wayport connection at McDonald’s! I finally caved in and paid for 24 hours on our room connection. I needed to do that.

My health woes have made for a long week, but it has also been hard because I don’t do well when I have “unstructured” time. We have done some hiking, gone white water rafting, and visited the Aquarium of the Smokies. Those activities have been awesome. Unfortunately, those things drained me (because I have narcolepsy) and left me sitting around our townhouse at the resort. When I don’t have ways to distract myself, I tend to get stuck in my own head. To avoid that I have watched a ridiculous amount of TV. I would have done far more productive things had I had an internet connection, but that was not possible. I also knew that trying to DO other things would be a disaster, since my limited excursions have left me wiped out. That might be the most frustrating aspect of this. This trip is the first long one that we have taken since I have begun to figure out how to live effectively with my narcolepsy. Unfortunately, I was not prepared for it. The lack of the internet connection, coupled with how much two LONG days in the car took out of me, has made it difficult for me to be upbeat. I also know that I am bring down the moods of my wife and my daughter. We are having fun, but my limited participation certainly impacts them.

I am now in hour 30 of a killer sinus headache too. It improves at times, but on the whole, the dull and constant pain in my left temple is getting old (to say the least). I skipped the hike this morning in hopes that I would feel better, but it made no difference. I am also afraid that I will get worse when we spend two days in the car driving home. Hopefully, tomorrow will be a good day. We plan to visit some of the shops on the craft circle – an eight mile loop of various artisans. It should be a blast, but all of us are under the weather. We certainly will not push ourselves, but it is definitely a burden on my wife. She clearly has a cold, but is trying to pick up my slack. I am doing my best to stay positive and engage with my wife and daughter, but there is only so much that my body can give. I will attempt to keep smiling and give everything that I can!

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Filed under Exhaustion, Family, Frustration, Illness, Love, Marriage, Narcolepsy, Parenting, Relationships, Travel