By Main Man on 24 February 2010
Often, I find myself commenting on the bizarre nature of time. Much of the past year and a half has perplexed me because time seems to fly by as it lasts forever, a truly insane paradox. While I know that my daily emphasis on living in the moment is a primary reason for this strange sensation, I still find things that give me pause. This entire month of February is a perfect example. Given how much has happened in this month, I find myself in disbelief that it is not April – let alone that four days still remain in February. How the shortest month of the year could still be “happening” astounds me.
Perhaps nothing underscores this madness more than the fact that I feel like it has been months since I posted here, yet only 10 days have passed. I also find a modicum of pride in this entire experience because my health remains less than great. Even though I continue to struggle daily with the many quirks of narcolepsy, I have found ridiculous amounts of work getting done. In fact, the productivity that dominated my previous post continued through that Monday. Those three days amounted to the most productive weekend that I have had in years. I then found a way to push through the following four days of school. Even this past weekend, which was dominated by the return of significant reflux issues, went decently. My wife and I had a nice date at the “Gala” – a fun, silent and live auction event at our daughter’s school. Then, Sunday brought the most efficient meeting that the MOONS-MN planning group has ever had. I returned home to get MOONS-MN work done and finished the minutes for a meeting just days after the meeting had taken place.
But even those experiences cannot do justice to my experiences of the last few days. On Monday morning, I found myself on the bathroom floor when my entire lower back had a spasm. Although my back can be problematic, something like this has happened only once before – years ago at my wife’s parents home. That time, I tried to simply “walk it off.” When it happened a second time, though, I spent the next two days in bed. Since I could not afford to be laid up for a few days with the end of our trimester looming, I wisely opted to stay home on Monday. Somehow, I found the ability to get some work done even then. My back is still sore, and I am being cautious, but I made it to school both of the past two days. I even did a ton of teaching and helped my team members with a fun skit today. So, even though I am exhausted, sore, unsettled, and reflux-y, I am hanging in there – somehow. And, February is still here. Weird.
Posted in Balance, Blessings, Confusion, Education, Emotions, Exhaustion, Gratitude, Honesty, Hope, Narcolepsy, Scheduling
By Main Man on 14 February 2010
Life with narcolepsy seems to get weirder and weirder at times. My wife and daughter are gone for the weekend. Often, having our house to myself has meant that I watch movies and lay around the house, especially when I have been pushing myself. Even though I have been driving myself at work, today was ridiculously productive (although I am disappointed that I have not done any correcting yet – gotta love anxiety issues). Although I did watch a movie this morning and took a few breaks during the day, I made significant progress on getting our home office cleaned. Much is still in disarray, but I have many things sorted. I have even filed some of the material in the appropriate places.
If I had just made a dent in the chaos of our office, I would call it a productive day. But, I also managed to clean the fish tank, to do my laundry, and even to make our bed. I do need to make more progress tomorrow, and that progress must include getting papers corrected. At the same time, it is unnerving to realize that I have been productive and still have two days of my weekend remaining. I don’t even think that I pushed too hard today, but the real judgment of that will come tomorrow. I will be overjoyed to find that I am only mildly exhausted (which is my “normal” on any given day).
I also need to note that I even found time to get some gifts and cards for Valentine’s Day. Often, this holiday is one that I dismiss, but I am so grateful for both my wife and my daughter that I thought it would be nice to acknowledge them, particularly because I am missing them dearly. It seems odd to say, but narcolepsy’s twists and turns constantly make my daily life interesting and unique.
Posted in Blessings, Chores, Cleaning, Depression, Exhaustion, Family, Gratitude, Hope, Insights, Love, Marriage, Narcolepsy, Parenting
By Main Man on 12 February 2010
My week has been bizarre. My energy seemed to wane throughout the week with each morning becoming more difficult. Yet, in the midst of that exhaustion, I managed to do some cleaning, to help out my team members by correcting our students’ quizzes and homework, and to get somethings done for a church group and for MOONS-MN. Today, I genuinely felt pride in my accomplishments this week, even in the face of narcolepsy rearing its head. Now, I need to figure out how to sustain that sense of self-worth for the length of an entire day. I certainly did not feel anything but disdain for myself this morning, yet most of my major accomplishments had already taken place. I know that I can let my anxiety overwhelm me, and I need to continuing finding ways to mitigate my self-denigration when the “should have” list becomes overwhelming.
I am heartened, though, that I can feel contented tonight, even though I have a mountain of unachievable goals for my weekend. Simply the fact that I still have 26 of my 28 student essays yet to correct should have me in a tailspin, yet I know I will get through as many as I can over the next three days. I had an amazing moment in the late afternoon today. One of my teaching colleagues had just returned to the room. She gave me a hard time for correcting all of the homework, but I reminder her that both she and our other co-teacher have tons going on right now. Even though my narcolepsy seems to be peaking right now, helping out my co-teachers in that way was something quite feasible for me. We spoke for a time, and I found myself in a place of deep peace. The reality of my life is that, even with my narcolepsy, I am overwhelmingly blessed. I have an incredible job, dear friends, and a loving family. Yes, narcolepsy has been an awful burden of late, but I must continue to embrace each day and every situation remembering the many gifts that I am given in my life.
As hard as it was to arise this morning, my moments of awe today are astounding. Today I witnessed the beauty and love of my wife, the giddiness and brilliance of my daughter, the joy of students having a half-day filled with silliness and intellect, the courage and verve of a colleague who is teaching and coaching with a severely injured hand, the casual cool of another colleague who blends the art and science of teaching with ease, the reward of having a diverse department that sees our curriculum and pedagogy from a myriad of perspectives but always with our students in mind, and the deep peace of kindness and a job well done. And, that list is just the highlights. Certainly, my body still feels awful, and my fatigue is growing, and my anxiety is whipping my mind into a frenzy. Those frustrations are omnipresent in my life, yet I can choose how much power I give them. I do wallow at times, and I need to do that. More often, though, I am able to recognize and own those struggles, while opening myself to the ubiquitous wonders that seem to bombard me hourly. The road remains long, but each step brings my closer to enjoying the journey more fully.
Posted in Balance, Blessings, Depression, Education, Emotions, Exhaustion, Friends, Frustration, Gratitude, Hope, Humility, Illness, Narcolepsy
By Main Man on 8 February 2010
I fully realize that the eastern seaboard of the United States has received more snow than the Midwest (at least this year), but I must declare that winter in Minnesota is awful. We are in the midst of yet another snow storm, and my driveway is full of snow. Unfortunately, our snow blower is on its last legs, and my wife and I are both exhausted. Even worse, my city is not declaring a snow emergency until tomorrow night. That might not be too bad if most of the side streets were relatively clear before this snow began last night, but the reality is that our side streets are still a disaster from the ridiculous ice and snow that fell in December (not to mention the multiple inches and melting/refreezing that took place in January). Thus, I will likely attempt to snow blow my driveway between 5 and 6 AM tomorrow. It will take an hour and wipe me out for the day. Then, I will need to get ready for my school day and battle the side streets all the way to my job. I have had one other day this winter when I did basically the same thing, but without any teaching. Between my narcolepsy and my exhaustion, the last dance with my snow blower and messy streets needed two to three days for recovery. I can only imagine how a full day of teaching will add to the fun that awaits me tomorrow.
The reality of winter’s impact on me, though, goes well beyond a two and a half day snow fall. Amid the snow and slush, the lack of daylight, and the frigid temperatures, I actually think the biggest issue is an instinctual impulse to hibernate. Like most higher order mammals in colder climates, humans must have a hibernation instinct. If we did not, how could we have survived before the development of heating systems and insulated homes. Perhaps most people can shake off the added urge to sleep, but as a PWN I find it insane that my brain and body can do even more to make me feel like I should sleep. I will push through tomorrow and the doldrums of February, but it will not be easy. I keep hoping that living with narcolepsy will get easier, but more and more I recognize that such thoughts are sheer fantasy. I continue to learn how to accept the ups and downs of my daily life, but tolerance is not ease. Not by a long shot.
Nonetheless, we are slowly gaining more light. And, eventually all of this snow will melt (hopefully sometime in late April or May). I will continue to work on mindfulness – being present in the here and now. That has served me well, even as I have struggled with my energy this year. More and more, I am able to let go of what might have been and of what might come. Instead, I ride the ebb and flow of each moment and each event. Being a Type A planner, that is neither easy, nor comforting, yet it is the right course of action. More than anything else I have done, mindfulness allows me to stay sane in the midst of the madness of narcolepsy. Of course, mindfulness is more fun when temperatures are not below the freezing point of water and when precipitation does not accumulate in white, fluffy inches.
Posted in Balance, Depression, Driving, Eastern Ideas, Exhaustion, Frustration, Loss, Narcolepsy, Travel
By Main Man on 1 February 2010
Many of my colleagues at school subscribe to the following axiom, “Never make major life decisions in February.” The logic is fairly simple. As an educator (particularly in Minnesota), no month of the school year is more difficult than February. Cabin fever is settling in completely – both for adults and students – as your students are also reaching their breaking point in terms of tolerance for the tedium of the U.S. educational system. On top of that, at least in Minnesota, the weather is rotten and overcast. And, you often go the entire month with only one extra vacation day. I share all of that because I have the feeling that the next 27 days will require me to repeat the aforementioned axiom as a meditative mantra.
I have clearly felt the bite of my narcolepsy more strongly over the past week and a half. Clearly, I am pushing too hard again, yet I don’t know how else to handle the demands of my job, my family, and my sanity. I arrived at school today knowing that I had not only gotten some extra correcting done over the past weekend, but also I had even gotten two of the papers I received last Friday corrected already. That is a huge accomplishment for me. Unfortunately, I found little pleasure in it. The day was fraught with problems and concerns. Somehow, my colleagues and I need to fit the Middle Ages, the Renaissance, and Romeo & Juliet into the last three weeks of February. We also need to get our students registered for next year, fit in a couple of fun days, find space for chapel time, and still manage to keep them sane and motivated. All of that angst piled into the first 45 minutes of my day, as I also realized that both of my co-teachers are definitely fighting a cold.
Then, our students arrived. They had only one thing to do this weekend – read a fairly engaging piece of historical fiction to get a feel of an Ancient Roman city. Out of 41 students in our first class, at least 16 failed to do that. The numbers grew in our second class – 23 out of 42 did not read. Those numbers fail to count the students who said they did read that then failed to get more than 1 or 2 items correct on the 5 point reading check. Fortunately, we weathered that well and got the students going on some research. Although my students’ apathy bummed me out, it did not ruin my day. That would come after school.
As if my day had not drained me enough, I left school in a mild snow storm, realizing that I would have a long afternoon of driving. Picking up my daughter, I learned that she had been removed from her school’s gifted and talented program. Now, as an educator, I fully realize that many things need to be factored into how a gifted and talented program is run. The stunning issue today, though, was that my daughter was removed for her grades, but she had an “A-” average in the previous quarter. I also know that the supervising teacher firmly believes in multiple intelligences, which would make it strange that a student would be removed for “poor grades.” Nonetheless, I got to deal with a distraught thirteen-year-old on the way home. I could not even spend time in our house comforting her, though, because I had an ENT appointment. I was slightly late arriving there because of the snow, but they got me in immediately. Then, I had a much longer ride home (after a lengthy phone call with my wife regarding our daughter) because traffic slowed down even more with the snow.
Thus, I find my head already swimming, and February is not even 24-hours-old yet. The month does not bode well. I have no doubt that ups and downs await in the 27 days ahead, but I also know that my narcolepsy will make it that much tougher to bear those trials and tribulations. I will work to avoid major life decisions and to appreciate the experience of each moment. I also know that I will wallow at times because my energy level seems to be dipping again. In the end, though, I must remember how little I do control. Life and narcolepsy will be what they are. That is okay. I will work to accept everything that comes, and I will forgive myself when I rail against the injustice of my condition.
Posted in Anger, Depression, Education, Emotions, Empathy, Exhaustion, Family, Frustration, Healthcare, Humility, Insights, Narcolepsy, Parenting
By Main Man on 12 January 2010
Sadly, I am writing well past my bed time, yet again. That said, I am handling things decently. Over the last few years, I have struggled mightily when I have gone back to work after longer breaks. Regularly, my expectations are far too high. Needless to say, I worried that returning to school after not only a break, but also a medication holiday, would turn me inside out. Instead, I managed to lower my goals for the week, and I cut myself a break, knowing that my transition back never goes well.
I certainly have battled my anxiety since school restarted on January 4, but I have been far kinder to myself. I still have far too many papers to correct, but I have greatly minimized my self-abuse. While I know I need to get those done – soon – I am also doing a much better job of remaining focused on each moment of each day. Rather than torturing myself for not finishing my correcting, I am at peace that I have done a good job of developing new curricular pieces and being prepared for my daily work. Even more importantly, I have done a good job of helping my wife and daughter within our home. I take great pride in taking another step down the path of learning how to manage my narcolepsy. Invariably, I will spiral out of control numerous times as I continue this journey, but I will cling to the knowledge that I have plenty of day that are wonderful because I can embrace the chaos that narcolepsy brings without losing my mind.
I definitely need to continue improving my kindness to myself. I remain too quick in my self-deprecation. Beyond that, I must establish a routine of exercise and yoga. My increasing waist line demands that, but more importantly my psyche needs the peace that yoga and exercise bring to me. My short term goal for this week is to take the first step by doing one or the other before Sunday, January 17. It helps that I will have Monday, January 18, as a recovery day (since exercise tends to drain me completely of late). Nonetheless, as hard as things are and as rotten as I feel, my hope is high and my outlook good.
Posted in Balance, Emotions, Exercise, Faith, Family, Frustration, Gratitude, Healing, Honesty, Hope, Medication Holiday, Narcolepsy, Wisdom
By Main Man on 7 January 2010
Yesterday, I had my last appointment with my current psychiatrist. He is retiring. Although I only see him for 20 minutes every 6 months, I will miss those appointments. My therapist has been a far better help as I continue to learn how to live with narcolepsy, but my psychiatrist definitely made an impact on me in our limited contact. Unfortunately, I have no idea who I will start seeing now. His position will remain vacant for at least 6 months, and the clinic is so overwhelmed that no one else is taking new patients for at least 3 or 4 months. Thus, I am adrift yet again. Fortunately, I have at least a year on my fluoxitene prescription, which is the med that my psychiatrist wrote for me, but I would like to continue to see someone.
Interestingly, my psychiatrist asked me about my “neurologist,” assuming that I see one for my narcolepsy. I tactfully said that I see a pulmonary specialist for my narcolepsy. We then chatted about how frustrating it can be with a disease like narcolepsy. Most diseases and conditions are handled by the doctors who specialize in that body system, but sleep issues affect MANY systems. Thus, the original sleep doctors were primarily psychiatrists. Certainly, some neurologists became interested, but there are so many neurological conditions that most neurologists have almost no experience with sleep issues (even narcolepsy). Due to the huge (and growing) numbers of people with obstructive sleep apnea (OSA), many pulmonary doctors achieved sleep certification, but most of them only handle OSA. They can diagnose more “classic” narcolepsy, but rarely recognize the wide variety of ways that narcolepsy can impact PWNs. Unfortunately, some pulmonary doctors have NEVER actually handled a narcolepsy case. One of my PWN friends was told by her initial doctor that he was transferring her to a different doctor because he had no idea what he should prescribe for her when her PSG and MSLT showed narcolepsy. Finally, the number of ENTs with sleep certification is also growing. Sadly, those doctors are also focused on OSA. The new research that has provided narcolepsy with cataplexy is definitely an auto-immune disease has raised hopes that immunologists will begin looking at sleep, but the bottom line is that most PWNs struggle to find a decent doctor.
My conversation with my retiring psychiatrist reminded me of my own frustrations with my current sleep doctor. Even though he is a pulmonary doctor, he does know a decent amount about narcolepsy, but he did not even talk to me the last time I was at his office. For him, it is all about getting me the right meds. I wish there was a decent neurologist in the Minneapolis/Saint Paul area who treated sleep issues, particularly narcolepsy. The only person I know of was not practicing until recently, and she could only begin working again recently in southern Minnesota. She is also a dear friend which would make it awkward for her to be my neurologist. A fantastic neurologist (almost as good as my friend) practices in Saint Cloud, but that is an hour and a half drive. Plus, I will likely have to pay for the appointments out of my own pocket. At the same time I desperately want to see a doctor who honestly gets narcolepsy. I must admit that my deepest desire would be to find a neurologist who specializes in sleep that is also a PWN. I firmly believe that many PWNs would travel across the country to such a doctor. Who knows, maybe someday!
Posted in Dreams, Frustration, Gratitude, Honesty, Medical Research, Narcolepsy, Travel
By Main Man on 4 January 2010
It is late, and I need to sleep, but I needed to report that my med holiday seems to have helped some. I took my amphetamine today for the first time since the morning of December 30. While I did not feel a significant improvement in its effectiveness, I do think that I was more alert than I had been before the holiday. I probably needed a complete week away, but it is good to know that even four and a half days can help. My motivation for establishing a monthly break from my meds has definitely increased. I would love to find a way to have at least two and a half days off at least once every four weeks.
My concern remains how much those two and a half days would cost me in terms of lost time for school work, house work, family time, and personal time. Yet, I firmly believe that the other twenty-five and a half days of each four week stretch would be slightly more coherent for me. Much of it will come down to planning and prioritizing the time. I am proud of myself because I did manage to schedule a few appointments within the last twenty-four hours – appointments that I have put off scheduling for the past four months. I have yet to correct a single paper that I received right before my Christmas break, but I do think I am moving in the right direction.
Posted in Blessings, Chores, Excitement, Exhaustion, Family, Gratitude, Healing, Hope, Medication, Medication Holiday, Narcolepsy, Scheduling, Wisdom
By Main Man on 3 January 2010
One of the hardest aspects of a medication holiday is the fact that even when I feel coherent, I find it impossible to focus in any meaningful way. Although I was out for three different one to two hour blocks today, I also had more energy when I was awake. Yet, even with those moments of lucidity, I found it impossible to do anything that I truly needed to do – no correcting, no financial data entry, no office organizing. I did manage to wash a load of dishes, but that was it. Fortunately, I am more at ease with my rudderless approach to my day, but I still worry about the eventual impact that un-done work will have on my life. Those are the thoughts and burdens that I need to release. They are the things that drag me under far too often.
I am getting better at recognizing moments like this one. Even as I type this, I tell myself to breathe and to relax. My energy and focus during a medication holiday are minimal at best. Thus, I can have no expectation that I will accomplish anything during a med break, no matter how much I would “like” to get something done. I can also take comfort in the fact that I should be slightly more functional tomorrow (Monday) as a direct result of taking the time to clean my stimulant out of my body for four days. I hope I can find a better way to take medication holidays more consistently, so I don’t need to have 4 or 5 day breaks once a year. We will see what 2010 brings as I move forward constantly trying to find better ways to live with my narcolepsy.
Posted in Balance, Depression, Emotions, Exhaustion, Fear, Frustration, Healing, Honesty, Hope, Medication Holiday, Narcolepsy, Scheduling, Wisdom
By Main Man on 2 January 2010
Stunningly, it is twenty-ten. Although I find myself appreciating most moments of every day, I’m awed that the first decade of the twenty-first century has almost passed. Depending on one’s perspective, this new year marks the start of the second decade, or the end of the first. Either way, things have raced along at a breakneck pace. I am feeling that even more this past week.
The week of Christmas, my wife, my daughter, and I were in Disney World. While the experience was exhausting (and wonderful), each day lasted a lifetime. After our return, though, the past week has disappeared in a blink. The first couple of days became recovery time for me. I adore Disney and thoroughly enjoyed our trip, but I knew that I was doing too much throughout the trip. Nonetheless, I would have had it no other way. Spending time with my wife and daughter was far too important. Plus, I wanted to enjoy the wonder of Disney.
After those initial days of recovery, I made an important choice for me. Even though I had (and still have) many things to do in our home and for my job, I decided to take a medication holiday. We shall see if the decision was wise or not. Since Wednesday afternoon, I have done nothing – well, nearly nothing – around my home or for my job. I plan to continue the holiday through tomorrow (Sunday, January 3), but do hope to get at least some correcting done. I have not taken a medication holiday since December of 2008. Thus, this break is long over due. My fear, of course, is that it will have little to no impact on the effectiveness of my amphetamine. My last holiday worked extremely well, but I fear that an entire year without a break have built up too much of a tolerance. I also worry that my narcolepsy has gotten worse.
Obviously, I will see what next week brings when I return to my medication. My other concern with the holiday is what I am sacrificing to actually “have” the holiday. I hate that my functionality is entirely dependent on a drug. I know that these first few days of the holiday are compounded by mild withdrawal symptoms, but even when I get passed that, I remember from last year that my attention span and ability to concentrate is limited, at best. Even reading a book becomes a challenging experience. Heck, during the first few days, I struggle to watch a movie on my TV without drifting off (or even falling asleep). Thus, by taking this medication holiday, I am giving up any chance to help my wife, or to connect with my daughter, or even to get my students’ papers corrected. And, it means that when I do “re-enter” the land of the living, I will have a mountain of work awaiting me. All of this is part of the daily routine of narcolepsy anyway, but I hate that making a “good” and necessary choice (the medication holiday) still hurts me in the end.
Thus, the new year (and possibly the new decade) has arrived, but narcolepsy continues to vex me. I need to accept that and let go of my illusion of control. Narcolepsy will be what it is. My life will move forward. The sun will rise. I simply must breathe and accept what each day brings. While I may find that frustrating, I can’t afford to waste my energy fretting over things like that. The one resolution for this new year that I will honor is that I resolve to spend more time exercising – both with yoga and physical exertion. Those two thing will do a world of good for me – physically, emotionally, spiritually, and holistically.
Posted in Confusion, Exercise, Exhaustion, Family, Frustration, Healthcare, Illness, Medication Holiday, Narcolepsy, Support, Travel, Wisdom