Many Main Man Moves

Greetings all! I have been absent from blogging for nearly a year, and it turns out that my blog site (Bite Size Life) no longer is functional. Thus, I have relocated to Wordpress.com. My new address is www.narcolepticknights.wordpress.com. I hope you will consider visiting me there. To those of you who read my site regularly, I apologize for my prolonged departure. Those of you who are PWNs likely get how life can completely shift on you, and suddenly things are out of control. As I did with the Bite Size Life incarnation of this blog, I will feed the five most recent posts back here. Thanks for checking out my thoughts about life with narcolepsy. Thanks from Main Man!

Pulsating Pain

My head feels like it is in a vice. The headache started around 3 PM today, and it is progressively building. Somehow, I managed to go get my daughter around 4 PM. Then, my wife, my daughter, three of my daughter's friends, and I went to a play at my school. Thankfully, my wife drove. I survived the play and even managed to laugh, but the pain is making it difficult to see at the moment. As always the pain is completely centered in my sinuses. I have no doubt that something rotten is happening in there. My ENT's office never did call with the culture results, but I am sure that they were negative.

I would guess that this headache is my body's signal to me that I have pushed far too hard at the end of this week. I have not rested much, even on my "off days," and for the past two days, I have had intense three hour meetings. My colleagues and I have been planning, which has been a blast. Because we are making significant progress, I have no doubt that this coming school year will be even better than last year. That said, though, I overtaxed my body during these past two days because I wanted to get even more done for school. Hopefully, a night of sleep and an extremely low key weekend will allow me to recuperate, so I can work toward a healthier balance next week. Of course, I have two all day meetings on Monday and Tuesday, a evening gathering on Wednesday, another team planning meeting on Thursday morning, and a road trip to Tennessee immediately after that Thursday meeting. I do not have high hopes for my body "settling" within the next week. Oh well, this too is just another joy of narcolepsy. I do get better at rolling with punches like this one (but I still don't like them).

Deepening Depression

Today was hard. I had an okay day, but I truly felt paralyzed when it came to doing any work. There is so much on my plate, and I have no idea where to begin. Confusing the situation is the sensation that I have not done much just for me recently. Many of my actions have "helped" me and others, but I occasionally have this burgeoning sensation of selfishness. I feel like I need to take a few days and just do things for me - read books that I want to read, watch movies that I want to watch, and let everything else go. Unfortunately, such an option is as unrealistic as my desire to clean the entire house in a day. One, I cannot afford for me to take those days because I need to help my wife and I need to get ready for the school year. Two, even if I COULD take the days, my brain would not let me. I would still not be able to focus even if I was doing things just for me. Instead, I would question whether that "me time" was warranted. If that sounds crazy, I can assure you, it also feels crazy.

I know that my continued sleepiness is a major factor in my indecision. When I am this rundown, I do not do well with decision-making. Also contributing to my consternation today was the cool and rainy nature of the day. The atmospheric pressure was literally weighing on my mind. Sadly, tomorrow may be more of the same. I also MUST do a better job of putting some structure to my day. Without any, I meander all of the place. It is imperative that I make a daily schedule a habit for myself. By doing so, I will be able to manage my day and my sanity with far greater balance.

Of course, all of these thoughts must be framed within the reality of my narcolepsy. No matter how good I get at setting a schedule, or accepting the weather, or handling difficult days, in the end, I will always feel tired even with my medication, even with the best night of sleep that I can get. That is the hard truth. I also know that I will invariably encounter "off days" because of the nature of narcolepsy. It is impossible to believe that I will be able to accept the constant sleepiness that I will have every day for the rest of my life. Eventually, my frustrations will build to the point that I need to rail against my disease for a time. I do hope that I will spread out those rotten days at wider and wider intervals, but I must accept that they will never go away. I hate that, but it is my life.

To end on an upbeat note, I did have fun playing a new game on our Wii today. My daughter bought Animal Crossing: City Folk. The game is super cute, and she and I both have a character in the town. While I must be careful (because this type of adventure game could consume me), I loved playing and watching the game with her. It was a silly and light-hearted moment for the two of us. I am sure we will play a little tomorrow too, but we are also going to have an adventure. Hopefully, that excurision will provide some fun for the two of us AND some structure for me.

Fighting Frustration

I have not slept well (or much) the last two nights. While that is NOT a good thing, my mood today is surprisingly upbeat. I know a piece of that is that I had a good meeting with my psychiatrist today. He is quite down-to-earth, but has also challenged me in the past to be kinder to myself. I think he easily saw today that I am definitely making progress in that regard. I also know that in that same vein, I am accepting that I have been up far too late the last two nights. Thus, the things that I accomplish today will be "gravy." I have to take that approach. I needed to stay up two nights ago to get some things done for MOONS-MN. Last night, the priority was getting the kitchen clean. That I did get those things done is a huge step for me. Hopefully, I will begin to keep such efforts within the frame work of "normal" hours for me, but it is also good that I am making strides in such areas.

Far too often, I get completely lost in "unstructured time." I definitely function best when my schedule forces me to be certain places at specific times. The rub, of course, is that having a ful agenda each day drains me far more than a day of relaxing. A huge piece of the equation is the fact that my brain rarely "shuts down." Summers are usually the worst because it can be weeks of "free time," during which my brain tries to run in hundreds of directions. Unable to accomplish a fractional percentage of my mind's inexhaustible list, I would then wallow entire days away. Although my aspirations remain far to large, I am getting better and better at releasing myself from that cycle. I work to accept my limits, while challenging myself to get one or two small things done. Slowly, I am adapting. Hopefully, it will continue, and I will stay balanced and healthy. I still remember the lessons of last summer. Every time I pushed too hard, my body quit as I ran a fever. I would like to avoid being completely laid out.

Fading Focus

Summer is always a curve and a blessing for me. I LOVE that I actually have "free time" because I need it to recover from the frenetic pace of my school year. At the same time, I hate it because I am terrible with unstructured time. I have been doing better this summer, but I have struggled for the last two days. My problem is that I lack the self-discipline (or perhaps the energy) to create a modest schedule of tasks for the day. During the school year, I am forced to create some level of schedule because my work fills specific sections of my day. When summer truly arrives for me, though, I have such open swaths of time that I regularly fail to pre-plan what I will be doing on any given day.

I also get terribly gun shy of planning out specific days. I know that I overestimate my energy and abilities, meaning that if I plan out a series of days, I will likely be "behind" from the moment I set my schedule. At the same time, when I allow myself to "see where the day will take me," I find myself accomplishing next to nothing. Because so many things are a "top priority," I am often paralyzed by my own brain. Worse, my inaction causes me to begin berating myself, which makes my more tired, and I become even more inefficient.

As I said, I am getting better at managing these things. In reality, my learning style (concrete random) and my personality type (ENFP) do not lend themselves well to carefully planned out schedules. In fact, they are deadly for me because my "random" nature means that I will eventually fail, and the "concrete" aspect of my brain will condemn me for that failure. Thus, I need broad plans, and I must accept any step towards the completion of those plans as progress. For instance, our finances needed to get up to date. In the past I would have tried to get it completed in one day. Although I did manage to do that from time to time (by locking myself in our office for 8-10 hours), more often, I would get to a semi-acceptable point and then would leave the finances unfinished - possibly missing a bill. This time, I chipped away at the finances over a four day window. I not only got caught up, but I also managed to enter information for my wife, and I figured out some of the stranger issues in our investment numbers. I even got paperwork filed today.

Unfortunately, even successes like that do not completely sink in for me. I consciously know that I did a good job, but I don't truly feel it. Instead, the hypercritical portion of my brain berates me for taking so long. It also reminds me that the office is still a disaster, and the investment numbers are still not fixed. And, pushing those thoughts away (or should I say hearing them and then dismissing them as irrational) takes tremendous amounts of energy, leaving even more run down. As a result, I then spend a few days, like today and yesterday, wallowing a bit and trying to get into some sort of groove with my daily routine.

The other two challenges of summer tie into that last issue. This time off often results in a different series of events every day. I have clearly learned that I am at my best when I can get into a pattern and am able to follow that every day. Sadly, I am convinced that it will be years until such a thing is possible during the summer for me. My wife's job, my daughter's activities, my doctor appointments, and my work issues mean that summer will remain a hodge podge of starts and stops in each and every day. Summer also means a great deal of isolation. While I do get to spend time with my daughter, many of my days involve long stretches of time when I am alone. Although I have come to appreciate some quiet time when I am isolated, the reality is that I am an extreme extrovert. Thus, being by myself drains me. Sometimes, that alone can totally wipe me out. On the other hand, I can be having the worst excessive daytime sleepiness, but come to life as soon as I step in front of a group of people.

As in so many other things, I must be patient as I move forward living with narcolepsy. This condition is insanely bizarre. I can feel almost normal one day and horribly tired the next. Worse, so much of my day (each day) depends on my sleep, yet I have NO control over that. Even when I have been in a great pattern of going to sleep and waking at the same time each day, one thousand and one tiny little things can positively and negatively influence my rest. Thus, I must take a deep breath, do the best I can, and not fret about the highs and lows. I just need to ground myself in the present and stay with each moment.

Flailing Frustration

Knowing that I have narcolepsy, I work diligently to have realistic expectations for myself. Certainly, I continue to overestimate (grossly) what I can accomplish - in a day, in a week, in a month. That said, though, I have gotten significantly better both in my estimation and in my acceptance of what I can accomplish. Nevertheless, I continue to have difficult and aggravating experiences focused on my inability to do even simple tasks.

Over the past weekend, I desperately wanted to clean our home office - finally. It has been a major goal for months. I will get close, but never quite finish the job. Even with the exhausting week that I experience at the end of April, I made some progress on Saturday. Sunday proved to be a whole other matter, though. I awoke with a tremendous headache which only got worse. I did try to continue my efforts in the office, but would find myself aimlessly drifting from one thought to another. Rather than being able to clean a small section, I struggled to form even basic thoughts.

Eventually, I found the pain subsiding. But, I was not content to clean one or two more things. Instead, I worked to restring one of our cellular shades. I quickly figured out what I needed to do, but the process itself was tedious and nerve-wracking. When I finally finished, and had (stall HAVE) the shade working, I went to see if my wife wanted to look at it. Turns out that it was 1 AM. I had completely missed my first Xyrem dose - oops. I am proud that I got the cellular blind ready for us, but I know that the price I paid for that was likely too high. I functioned decently on Monday and today, but I also know that I was not entirely comfortable with my focus. My judgment and cognition go out the window when I am overly run down. I just wish that I could be lucid when I WANT to be, but that is no longer reality.

Thus, I must continue to work on acceptance and balance. Those things will come with time. I am stunned at how well I do on most days, but that does not mean that I have to like that reality.

May Magic

Yet again, time has had its way with me. My calendar seems to jump entire weeks at a time. Thus, May has arrived and my brain is still in the middle of April. The frenetic pace of school has not lessened, rather it has picked up. Today, I managed to finish putting comments on numerous papers, to copy our quiz, to help plan the day, to re-write the same quiz, and to connect with a number of students. The added "bonus" is that I did all of that during a day that was shortened for various reasons. We also had conferences yesterday, and my daughter had to go to the ER the night before. So, I slept little on Wednesday, talked to parents for hours on Thursday, and eked every ounce out of my body on Friday. While I am grateful that I can handle a day like that, I also know that I will be worthless for much of this weekend.

I also realize that I am getting more and more run down as the end of the school year approaches. I find it fascinating that I am beginning to know myself and my body well enough that I can recognize when I am pushing too hard. Unfortunately, I am still too stubborn to do much about that. I know that I will continue to push when I should stop - like I did today. I "survived," but that came at a price. The lingering congestion and illness that I seem to still have will worsen. There is no question in my mind about that. I also know that I will do my best to exploit the boost I get from the improving weather.

While temperatures did dip during the past week, the averages are now consistently in the 60+ range. That is glorious. I have come to abhor winter. The warmth coupled with the ever growing daylight definitely lift my spirits. Of course, that too has a down side. More light means that I am tempted to push myself even more. Even the idea of May gets me pumped. More daylight and milder days portend summer's arrival. Summer means a time to re-charge and MITY. Yet, my extroverted, crazy brain transforms those good vibes into an insane drive to complete everything before the school year ends. While the idea is lovely, the reality is that I should NEVER listen to grand ideas like that. My body can't handle them, but my stupid brain never seems to remember that. Hopefully, I am gaining enough wisdom that I will intervene on my own behalf. Nonetheless, I am thrilled that I am entering the final month of school, even if it means that I somehow lost the latter half of April.

Washed out Wednesday

It always throws me when my body "catches up" with my life. I had a great weekend, seeing friends and playing a small amount of ultimate. I also enjoyed my visit to my friends' home in Maryland. The added exercise in White Flint would have been nice to forgo, but I know that it too was beneficial. My travel yesterday was harried at times, but I got home safely. So, I awoke today thinking that I would be ready to get into a groove preparing for work material, cleaning the house, and prepping for some events at my daughter's school. I was completely wrong.

Although I could feel the wave of fatigue as early as Sunday, it hit me full force today. I struggled to get out of bed, even with my stimulant. Then, as I was about to leave to do my limited errands for the day, I learned that the acupuncture, massage, and chiropractic appointments that I believed were scheduled for tomorrow were actually today - yippee. Thankfully, I will still get to have a massage (a shorter one) and chiropractic tomorrow, but the disappointment and embarrassment nearly tanked my day. Poetry Club at my daughter's school went great, but I got home completely exhausted. I even fell asleep watching The News Hour.

I am hoping that the recovery process will only take a day or two. I truly can't afford to feel like this when school restarts next Tuesday. I should not be surprised when things like this happen, but I am. I forget how much energy traveling can consume. I also did spend most days over the weekend and in Maryland "on," meaning that I did not rest much. That said, it still stresses me out that I am nearly worthless today. I want to do more around our house. I also need to get caught up on school work, finances, and our taxes. Narcolepsy always seems to have one more twist waiting for me.

Sleepy Savings

Somehow it is already March 10th. Time seems to spin wildly out of control, particularly when my life gets stressful. Fortunately, I survived the end of yet another trimester. I also thoroughly enjoyed Suddenly Sleepy Saturday. The movie Wide Awake was decent, particularly when one remembers that it was made for Lifetime Network. The main character is a PWN and a narcolepsy researcher. She is swept up in a thriller when someone sabotages the labs research. Much better than the film was spending time socially with other PWNs.

Interestingly enough, though, I feel like I am the one who needed a stronger reminder about the impending time shirt with the arrival of Daylight Savings Time. I had a tough time going to sleep on Saturday night. Sunday morning and evening were even worse. As a person with narcolepsy, I try to have a firmly established sleep routine. The shift of even an hour can radically alter that process. I still did not feel right today. I honestly think that I should start with my new sleep pattern the week before Daylight Savings Time. In fact I am likely going to do that for both the end of Daylight Savings Time and for next year's Sleep Awareness Week.

What shocks me in this realization is how dependent my schedule, and my life, is on routine. I have always known that I function better with structure, at least until my obsessive tendencies cause me to implode. But, the bottom line is that a set routine and pattern IS the best way to cope with my narcolepsy. I still need to be flexible enough to accept the waxing and waning of energy, but I know I need to find some semblance of structure in my standard day. That seems far-fetched given the chaotic nature of our household, but it is definitely an important goal that I must pursue.

Odd October

So often, I feel like time's relativity only increases in speed. Somehow, though, this past month has not only flown by with exponentially increasing acceleration, but also it has lasted an eon, or two. If that sounds completely paradoxical, imagine what it must feel like. Usually, I am wondering where the month went, but for the past week, I have had to remind myself that it is not yet November. While a portion of me does wonder where the past four weeks went, another section can seem to grasp that there is still one day left in this month - October. All of it seems complete bizarre.

Surreal as the month has been, I know that some of my confusion results directly from my narcolepsy. I find each day so exhausting that each one honestly can feel like a week. Yet, even with that, the memory issues that tend to accompany my sleepiness do make it seem like I have lost a day here, or a week there. Beyond the condition, though, the month has been bizarre due to the multitude of activities in my life.

I am trying to reduce the stresses in my life, but feel like I am losing that battle. My responsibilities to my daughter's school seem to be growing, as are my commitments to my various narcolepsy communities. Beyond that, my job is far more demanding from a physical standpoint this year. I am a great deal happier, but am also finding myself far more drained than I did last year (when I sat around and watched movies most days). Finally, the extensive renovations taking place at my home, coupled with the conferences that both my wife and I attended (one apiece), have made for a wildly rich and diverse month. I do find this sensation strange, but I love that for once, I do NOT feel like I lost every other day (or more).

Schedule Scrutiny

Scrutiny! That is the word. Another would be discipline. I am getting better at maintaining loose structure to my time, but I need to do even more. My focus can't become rigidity. At the same time, I have to be better about protecting my time for relaxation and exercise. I didn't do that last week because I wanted to help a colleague before school started. Now, though, I need to push myself to use my mornings to strengthen my knees, body and spirit.

I also need to enforce limits. Yesterday, I worked on our financial information. I spent hours when I should have done it in much smaller pieces over a series of days. While the bulk of the work is done, I know that I am more wiped out today as a result of my "determination." Fortunately, this round of insanity did not cost me the fun I had today with my wife and daughter at the Minnesota State Fair. Still, I got home and did not have anything left to do school work or housework. I have tomorrow, but I must work on enforcing my limits. I should do nothing for more than 2 hours. AND, I should rest for at least an hour after something like that. In fact, I should probably go to bed. Instead, I am going to my Men's Group.

Going to Men's Group was great, and my energy surged there. But, if I am serious about maintaining balance, I need to adhere to setting time limits and holding to them. Invariably, the week has gotten away from me. I started this on Sunday, but am finishing it on Thursday. I have managed to do some "scheduling" and help to it. I have also killed myself with correcting a couple of nights. The interesting thing, though, is that I have been more productive in my teaching and my correcting than I have been for years. I don't necessarily "feel" better, but I am able to stay focused even when I feel horrid.

I have also been good about taking time for myself. I did yoga on Tuesday. I have allowed myself periods of relaxation. I have even used some of my time during the school day for me. I have also used it to do correcting, but even that was a conscious decision, rather than one reached out of some sense of guilt or obligation. Of course, I want to be more disciplined than I have been, but I am trying to remember that this is a journey. One that I have a lifetime to complete. Changing patterns takes time. I am slowly remaking my world, but it will take a lifetime. That's okay! I need to enjoy the journey, while still opening myself to the lessons I must learn.

My goal for this next week is to be effective in my scheduling of time blocks for at least 3 days and hopefully 4. I will certainly keep folks posted.

Mindful Meditation

I still want yoga to become a habit, but I also know that I need other ways to relax myself. My psychiatrist showed me a fantastic breathing exercise that I can do in two to three minutes and certainly some of my yoga exercises can be done for a brief centering routine. Still, I know I need something more substantial. I also realized yesterday that I have it! The Benson-Henry Institute at Massachusetts General Hospital specializes in Mind Body Medicine. A few months ago, I bought 3 of their CDs. While I had listened to parts of them, I had not "used" them until yesterday. While waiting for my massage, I put on my iPod and enjoyed track one of Creating a New "Now" by Ann Webster. It is fantastic and helped me relax muscles that were in terrible knots (the massage ALSO helped).

Even more exciting, though, was that it finally dawned on me that my teaching schedule for this next year has two perfect windows built into it that will allow me to meditate with Dr. Webster's CD or the others. I can do it DAILY if I want. Best of all, my internal reaction to that insight was joy, rather the guilt I likely would have felt even a year ago. My contract requires me to have a prep and four class periods. These windows are not a part of that. I will certainly choose to use them at times to do work for my school, but the key word there is "choose." That time is mine, and using it in whatever way is best for me - mentally, physically, emotionally - will be glorious. In the past, I know I would have forbidden myself from even considering using a time period like that for meditation. Now, I am looking forward to doing that. It is in moments like these that I think, "maybe I can overcome my hang ups." Of course, I know that the journey to do that will only take my lifetime.

Being aware of what is going on within me and living in the present are my two biggest goals for this next school year. By using these windows in my school day wisely (for correcting AND fulfillment), I will make it much more likely that my "schedule" blocks will work and be effective. All of this simply continues to build my enthusiasm for the coming school year. Hooray!

Living Life

One of my primary goals for the next year is to live honestly and openly in the present. I spend so much time worrying about "what's next" that I often miss "what's now." I know that doing my yoga, meditations and breathing exercises will help, but I want to keep my mind firmly grounded in the moment. One of the more ironic aspects of this is that my MITY co-teacher and I have been discussing "mindfulness" with our students for the past two years. As a result I am far better know than I have ever been in the past, but I still create waves of anxiety for myself whenever any "event" is approaching. The definition of "event" can range from stepping back from ultimate to presenting something to a large group, from basic correcting and lesson planning to taking my daughter to play tennis. If that sounds broad (and slightly insane), I would agree.

I know that I am far too focused on "perfection." I tend to want everything to be a masterpiece. That is neither wise, nor possible. I also "know" that and then find myself obsessing over my foolish tendency, which is even more unrewarding. I have gotten better about letting go of my perfectionism, but I also trap myself by trying to "calculate" the time commitment I will need to "finish" any particular event. Rather than simply starting and doing what I can do, I mentally wrestle with the theoretical and complete little to nothing (which often leads to more self-deprecation). I hope to avoid that trap by planning on specific periods of time, rather than thinking about the "end" of my work.

Setting a schedule has always been dangerous for me because (in an effort to "get it right") I tend to become rigid in my schedule. I do fine for a while, but nothing ever goes exactly as planned. Thus, the schedule derails and I give up - why do it if I can do it "properly"? (I am such a black and white thinker!) What I am hoping I can do over the rest of the summer and during this coming school year is to plan blocks of time, rather than specific activities. By carving out the blocks, I can vary my activities. I can also have a set period for me, a set period for my family, a set period for school work, a set period for exercise and yoga.

I know that I need basic structure to my day. Without it, I tend to get "lost" in the onslaught of potential activities. During the school year, I do better because "have to" aspects of my job tend to keep me more focused. Right now, though, I struggle because 10 things need to get done and I can't prioritize them well. I want to set up this schedule so I can quantify times to address some things. Accomplishing them will certainly help my general mood. That, in turn, will bring me more energy. Of course, energy is the root of most of this worry (both rational and irrational). As I have said before, in the past I could simply plow through everything in my path. Now, though, I know that is not realistic, not is it healthy. Thus, I get scared about putting too much of myself into anything, often leaving me cut off from everything.

The idea of this schedule does have balance at the core. By ensuring time for exercise, me and rest, I am creating something much better than "do your school work first, then get to what your family needs, and then in the left over time take care of Mike." Usually, that plan would last for a few weeks. I would initially get the school work and some family things done, but as the school stuff began to pile up, the household items would also disappear. Finally, since I rarely did anything honestly good for me, the entire system would collapse, and I would fritter away tons of time mindlessly watching television (until panic would set in an I would blaze through a number of things - half-assed - wiping out any energy reserves I might have left). I know that being more dedicated to daily time for me will serve everything in my life much more wisely.

Another major reality that I must confront, though, is my desire to "over-correct" everything that I get from my students. I always want to fix everything in a piece of writing. That is not possible (I love writing entries like this - can you spot the theme of your life, Mike? Um, is it constantly trying to do everything when that is neither logical nor physically possible? YES!). Instead, I need to focus narrowly on specific skills, and then I need to hold my students accountable for maintaining those skills. I feel like that is possible during this next school year, and that has me excited. Not only do I have two excellent colleagues to assist me in holding to that, but also we are meeting and planning so much that I will have many things ready before the school year begins. By knowing the skills we want to see in a specific assignment, it will be much easier for me to keep those in mind, rather than trying to "teach" about every writing flaw on every page.

I think it is wonderfully humorous that my post on "living in the moment" has been dominated by thinking about the coming school year. The reality is that I need to ponder these things right now so I can devote the rest of this summer to establishing these healthier patterns. By teaching myself now how to live in the present, the year will be much better. By balancing school planning with exercise and yoga, by recognizing my need for personal time with the need to connect with my family, I will accomplish much more than trying to do it all in each moment of each day. I feel good about setting these boundaries now. I want to be mindful and present in each thing I do. That intentionality will serve me well in every aspect of my life. Doing that will allow me to make my narcolepsy live with me, rather than the converse that I have felt for much of this past year. A friend pointed out my "error" the other day, and I definitely like the inversion significantly more. Now, I will make it a reality.