Monthly Archives: April 2009

>Wrung out, but Writing

>I don’t have much energy because it is late, but I have felt the need to write for days. I am stunned how often life’s whirlwind can suddenly shift, leaving me writhing in the dust. Even though last week was significantly more taxing, this week has seemed completely out of my control. A week ago, our teaching team was missing one member the entire week, while our students bombarded us with questions about their research papers. My household was also missing our superstar – my amazing wife. Yet, it is this week that feels more insurmountable. I doubt I will ever truly understand that aspect of myself or narcolepsy. This condition seems to have an unending supply of twists and turns.

Regardless, I have survived another week. I have a mountain of work this weekend – correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair’s summary of the meeting (with only 10 minutes remaining) a slew of “issues” were raised – things we have discussed ad nauseum over the past two years – that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.


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Filed under Confusion, Education, Emotions, Exhaustion, Family, Frustration, Insights, Narcolepsy, Technology, Wisdom

>Fabulous Friends

>I continue to struggle with my energy, but I had a great boost today. Even though the early afternoon was filled with drizzle and clouds, I found sunshine in a Perkins in Edina! Four of us met there today to do some MOONS planning. While I had many other things that needed doing, I know I made a great choice today. Seeing my friends from the MOONS group made my heart soar. Even better, we actually got somethings done. Typically, we banter and chat so much we rarely get anything decided.

Today, we generated ideas for some social gathering. We also decided to vary our meeting times. In an interesting irony, when MOONS-MN first started, most PWNs present wanted to meet at 10 AM. While that seems crazy to me (and the other planning folks – we barely make it to the meetings on time), we wanted to serve the group. Lately, though, we have heard that some would like a later meeting time. Thus, we will still meet at 10 AM on May 30, but our meeting on September 12 will begin at 4 PM. The plan will then be to alternate between the two times. It should be fun.

As for the “social” ideas, we are hoping to have a yoga session (that could become a PWN yoga class), a bowling event, a family picnic, and another movie session. All of the events should be great, but the best part is that we are striving more and more to provide opportunities for PWNs to gather with each other and to share stories about this crazy condition. I also love that we spent time thinking about bigger issues, including suggestions for both Narcolepsy Network and for physicians who treat people with narcolepsy.

Still, the best part of the afternoon was spending time with friends who honestly understand the difficulties and frustrations of this disease. It is so hard to explain to people why I seem to be dragging or how hard it is to form a thought at times. With my PWN friends, we don’t even owrry if someone drifts off, and we all regularly ask to have things repeated because we missed them. One of the strangest realizations of my day is that I “knew” none of the people I met with today one year ago. I still marvel at how much has changed in just 365 days!

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Filed under Blessings, Excitement, Friends, Gratitude, Heroes, MOONS, Narcolepsy, Narcolepsy Network, Sharing, Support

>Wild (wonderful) Week

>I certainly am glad that this past week has reached its conclusion, but I am also thrilled to have lived it. While I did not “enjoy” missing my wife, having a sick daughter, teaching down one team member, enduring redundant questions, or short changing my sleep cycle, I found myself giddy at times today because I did weather the storm. Many moments of anxiety and frustration welled within me each day, but I rode them and continued on.

As I regularly remind myself, I have a lifetime of learning ahead of me to understand how to live with narcolepsy. That does not mean, though, that I must forgo recognizing an important milestone for myself. Typically, when my wife is away, I spiral down throughout the experience. This time, the trend went in reverse. The weekend in Duluth drained me, and my lowest point of the week might have come on Sunday night or Monday morning. Even though my energy level dropped all week, my spirits rose. Yesterday was the most productive day that I had all week. I also have high, but realistic goals for tomorrow.

One incident does not a pattern make, yet I do think that my mood is a strong indicator that I am moving in the right direction, at least from a mental health perspective. Invariably, I still have too much to do. I will also continue to beat myself up on a daily basis. The self-loathing has diminished greatly in the past year, and I am getting slightly better at saying “no” and at asking for help. Perhaps, I will eventually reach a point in time when I am at peace with myself. Until then, I simply need to remember that I am finite and can only do my best (as opposed to “the best”).

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Filed under Balance, Excitement, Exhaustion, Family, Insights, Narcolepsy, Wisdom

>Searching for Sleep

>Last night, I was determined to be in bed at 10 PM. No matter what, I knew that I needed to restart a saner sleep routine. Sadly, I failed. In fact, I completely obliterated my bedtime. I decided to do “one more thing.” Unfortunately, that final task took about two hours to complete. Then, I decided to check in with some friends. That somehow led me to attempting to do even more work.

In the end I faded in an out for hours. At 4:30 AM I actually made it to my bed. While I had fitful sleep sitting on the couch, I did get a solid hour and a half once I made it to my bed. Thankfully, I help it together through my day. My daughter was sick today, which turned out to be a blessing. I was able to move more slowly as I got ready. When I did get to school, I knew I was exhausted, but survived the day. My associate principal allowed me to miss a school wide event. Then, I used the energy of being with my students to carry me through the actual class periods. Even so, I clearly struggled to form thoughts. I am getting better at identifying when my narcolepsy is making my life difficult. I definitely blanked out a couple times as I tried to help my students understand.

Even more unnerving was the trip home. I again knew that I would make it, but I also had clearly reached my limit. Fortunately, I can take roads with little to no traffic. I was not dangerous in any way, but if I had been forced to stop for an extended period, I might have drifted away. Upon getting home, I did get some cleaning done, but I also have been battling my sleepy brain the entire night. I felt that the best thing would be to push myself until 10 PM tonight. Then, I can begin reestablishing my “normal” sleep pattern.

While I do not want this to become a regular occurrence, I am grateful that I am becoming stronger mentally and physically. I also appreciate that I am learning to adjust when things are getting desperate. I firmly believe that I would have simply gone to the school event in previous years, even though it would have drained me to the point of my narcolepsy becoming dangerous.
Thankfully, I am maturing in my outlook. I have nothing to prove to others. I do need to take care of myself so that I can stay safe and protect others as well. This journey never will end. Narcolepsy is funny that way. Still, I am thrilled to have the chance to experience it.

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Filed under Exhaustion, Frustration, Gratitude, Healing, Honesty, Humility, Narcolepsy

>Running Ragged

>Driving my car today, I wondered how coherent I actually was. I did not doubt my ability to navigate effectively and accurately. My confidence was also high in my driving skills. At the same time, I am painfully aware that I am fuzzy on the exact details of the journey home. Plus, when I finally got here, my phone conversation with my wife is now the vague recollection of an echo. In that bizarre balance that seems to becoming my norm more and more frequently, I accomplished many things today, but I also used every ounce of energy that I could muster.

I am pressing myself to the limit. Some of the causes are unavoidable. One of my co-teachers is out on paternity level. Thus, only two of us are present this week to handle the onslaught of questions from our 40+ students in each section. Beyond that, we are working on research papers, which cause the number of student questions to escalate exponentially. I also have been logging long hours at my daughter’s school. Frighteningly enough, I did not go to everything that I was supposed to attend (mostly because I did not trust myself behind the wheel of a car). Yesterday, I was at her school for three hours to help run a TechParent night. Today, my efforts aided in the second session of Poetry Club. Both things were cool, but they also drained me.

Beyond that, though, I have gotten much less sleep recently. I am forcing myself to milk my day for every spare moment. All of the priorities are “vital,” both in reality and in my delusional mind, but they are taking their toll. As always, the thing that suffers most is my well-being. It also does not help that my wife is out of town. I always feel more desperate when that is the case.

I did have one moment today that was a “favor” for a friend, but was actually much more for me. A colleague teaches a class on loss. Most of their work centers on the loss of a close friend or family member, or a beloved pet. Still, the instructor has invited my in the past two years, because she understands that I too live with loss. When I spoke last year, I had just discovered Facebook and MySpace. I had also just start this blog. Thus, it was amazing to talk about my disease today. Even though I know the journey gets longer every day, I loved sharing my experiences because I do believe that narcolepsy (as much as I hate it) has saved my life. It has forced me to focus on myself and my true priorities.

I am handling my current exhaustion well. I am well-aware that I am functioning at half-speed at best, but I am more comfortable with that than ever. I know that many of my days are filled with mediocrity, yet that is far superior to one decent day followed by a month or two of misery. At least I can help students in limited ways, rather than being stuck at home. If that day does arrive, though, perhaps some of my friends at Narcolepsy Network will have worked out a cool way for me to still connect to other PWNs around the world. Okay, I must sleep before I fritter away another three hours.

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Filed under Balance, Confusion, Education, Exhaustion, Faith, Frustration, Honesty, Narcolepsy, Narcolepsy Network, Relationships, Technology

>Nasal Nightmare

>Typically, I avoid discussing my other health woes here, both because they are minor in comparison to my narcolepsy and because I rarely can do much about them, so I avoid dwelling on them. That said, my sinuses threw me a curve ball today. I have had chronic sinusitis for years. I actually think that it is connected to my compromised immune system (and thus my narcolepsy), but I have been “dealing” with my crazy nose for years longer than I have been managing my narcolepsy. Every day, I rinse my sinuses in the morning and at night with a saline solution (SinusRinse made by NeilMed) and with an antibiotic solution. Things have improved since I started that routine in 2004, but I still have regular swelling and inflammation throughout my sinuses.

Every month to two months, I go see my ENT. He is great and I appreciate his candor. Typically, he cultures my sinuses on the left side (which is often worse) and then literally vacuums out my sinuses. In the last few years, I have not had many infections, and my sinuses have looked “better.” They are still constantly swollen, but it is less than in the past and they are usually limited in their inflammation.

Today, I was expecting things to follow the usual process. I had a horrid cold in March, and I know that it took me weeks to shake it. I still have had a lot of congestion, but my nasal discharge has looked better recently. While I never feel “great,” I knew that I was on the upswing for my sinuses. When my ENT looked at my left side, he thought my sinuses looked better (still swollen, but not inflammation and clear mucus). He was actually considering NOT doing a culture. Then, he looked at my right side. Apparently, it was awful. He vacuumed some, then cultured, then vacuumed more. THEN, he switched tips to “get around the corner.” Less than fun, I assure you.

The silver lining in this is that I likely do have a sinus infection. We will see what the culture says, but the infection is probable to say the least. That means that some of my current struggles with energy are a result of my body battling a bacterial infection. It sounds bizarre to be “glad” about that, but I have been so wiped out this break that I was worried that my narcolepsy was getting significantly worse. That still might be the case, but learning that my immunue system might have been in overdrive for other reasons does give me a bit of hope. If I am indeed infected, the ensuing antibiotic will likely perk up my system. I could definitely use an infusion of energy. I will say that it is the first time I was genuinely excited about a possible sinus infection. The other bright spot is that I am managing my narcolepsy well enough that if this is a sinus infection, it did not completely knock me out as sinus infections have done in the past. Apparently, I am just giddy about bacteria growing in my right ethmoid sinus! Yippee!

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Filed under Balance, Exhaustion, Healing, Healthcare, Illness, Narcolepsy, Sinuses

>Stunning Start

>One year ago, I found myself struggling and lost in my handling of my narcolepsy. While I had clearly identified that I needed to make some changes at my job, I had yet to connect in a meaningful way with any other people with narcolepsy. I knew that living with this condition was difficult, but had no context for my situation. Was it normal to still feel this run down? How much did my doctor honestly know? Where any of my other “health problems” connected to my narcolepsy? The list of these questions was endless, but where could I even start to get answers. Worst of all, I knew I needed to process my own feelings and frustrations, but I felt like burdening my wife would be wholly unfair. She is my partner, lover, and best friend, but she could not be the sole repository of my stress and anxiety. I also had my Men’s Group, but was finding it harder and harder to discuss my struggles, because narcolepsy sounds ridiculous when you explain it – I am tired during the day, and I don’t sleep well at night. It invites the suggestions of getting more sleep, and the sympathetic replies of “I am tired too.” Then, in a whirlwind week, everything changed.

First and foremost, I “discovered” Facebook and MySpace. It may sound insane for a forty-year-old to claim that social networking saved his life, but I am living proof. Since my daughter’s school was moving to one-to-one computing in the middle school (each student has her or his own computer) and because of my own interest in using technology in the classroom, I thought I should start understanding what social networks truly were. I played with my profiles for a few days, but then I wondered if other PWNs could be found in either one. Turns out, I found support groups in both locations. The Facebook group Narcolepsy Support Group became my home away from home. I think there were around 400 members when I joined. As of today, the group is a single person away from 1000 members. Touching base with other PWNs had a huge impact.

In fact, the great irony is that the member who literally joined next on Facebook was a former student at my school. I could not believe it. I sent her a message on Facebook, feeling horribly awkward. But, within hours, we were trading emails since she too had narcolepsy, as did other family members. She has subsequently become a major factor in helping to lead the local MOONS-MN support group. So, Facebook not only put me in contact with other PWNs, but also provided me with my first face-to-face interaction with other PWNs.

The best was yet to come, though. The same motives that drew me to Facebook also had me curious about blogging. Since I was planning to use it in my classroom, I thought I might start a blog. After looking for other blogs about narcolepsy, I realized that only a handful of PWNs were sharing their stories. But, it was also clear that writing about it was helping the PWN authors and their readers. Thus, Narcoleptic Knights was born – one year ago today. I love that this one year anniversary has fallen during my break week at school. I have been privileged to blog every day over this hiatus. It has reminded me how important it is for me to write about my condition. Whether I am up or down, I need this release.

I know that some of my depression and stress over the last few months has been the limited blogging that I have done. Seeing that string of months with only two or three posts per months saddens me. I know that I was doing other things that needed to be done, but it reminds me of how far I must go to find more equilibrium in my life. It also blows my mind that I could go 3-4 months writing only a handful of posts and still average a post every three days for the year. I do remind my students regularly that I am overly verbose.

The final piece that makes this blog so important to me is that so many people have come here to read it. In one year, Narcoleptic Knights has had 891 unique visitors from 33 different countries and at least 47 regions/states within the U.S. There have been over 3300 total visits and still about a quarter of the visits come from new visitors. I am awed and honored that people from around the globe would spend even a few seconds looking at what I have said here. I do hope that I have helped some of them. At the same time, I want you all to know that you have helped me (and continue to help me). By visiting this site, you motivate me to continue writing. I have mentioned it here before, but I have never been good at keeping a journal. I always start strong, but rarely do I even make it a month when I try to regularly record my thoughts. But, because of the visitors to this blog, I have not only reached the one year mark, but also I am heading into the second year of Narcoleptic Knights with more fervor than ever. Whether you have left many comments, one comment, or simply read a portion of a post, please know that I am eternally grateful. I often avoid injecting my religious faith into this space, but it is not lost on me that today is Easter (at least it is for Roman Catholics and Protestants). The fact that we are honoring Christ re-born on the day that my blog reaches it one year mark (and it is a huge piece of my re-birth) is a gloriously wonderful thing. Thank you all for being a part of my life.

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Filed under Balance, Blogging, Education, Gratitude, Hope, My story, Narcolepsy, Support, Technology