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 inspite 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.

Slow Startup

Today is our last day in Tennessee. We will rise early tomorrow and hit the road. While I am not looking forward to two days in a car, I am looking forward to getting back home. I feel good that I still have two weeks before I am back at school. I have oodles of things to do - at home and for school, but I will continue to approach them at the pace that I can handle. Today definitely feels similar to that. My wife went on a driving loop last night by herself. She enjoyed it immensely, but came home even sicker than she was. Thus, I am the only one up this morning. Hopefully, we will still try to visit some of the craft shops today, but I love that we can have such a relaxed start to our "final day." Far too often, a day like this is treated frenetically, cramming in activities for each waking moment. Instead, we will take in what we can and simply appreciate the chance to spend time together.

I find myself grateful for the many opportunities to slow down my life and expectations. My brain continues to push me, but I am getting better at letting go. I am even able to appreciate the fleeting moments when I do achieve a level of balance. Those moments are not nearly as frequent as I would like, but the fact that success brings joy rather than regret is a huge improvement. For years, a moment of serenity would bring angst rather than relief. I would berate myself for my inability to "feel serene" more often - how screwed up is that? Thus, I am highly content to lounge this morning, at peace with my upbeat outlook.

That said, I do need to find a bit more structure to my days when I get back home. The start of school is still three weeks away, but I need to begin adapting my schedule and routine now, since I know that a radical shift will not sit well with my brain or physical health. I also need to find a physical routine. The hiking and rafting has been great, but my body hurts all over as a result. More than anything else, I need to strengthen my knees. They are hurting constantly these days. I must spend some time over the next three weeks to get them ready for standing frequently during the school day. If I don't, it will be a LONG year. I find juggling exercise, my family, my sanity, and my job one of the most frustrating aspects of narcolepsy. All of them take energy from me, but all of them are vitally necessary.

Wild (weird) Week

I am struggling to believe that I went aq week without posting. Sadly, that is in fact the reality, though. I found myself overwhelmed by meetings and events for most of the past week, and on Friday morning we departed on our trip. The strategic planning meetings on Monday and Tuesday were incredible, but they overwhelmed my body on Wednesday. I did still manage to get some housework and yard work done, though. Unfortunately, that effort coupled with more meetings and errands on Thursday left me FAR behind in my trip preparations. I stumbled out of our office on Thursday night around 11 PM, took one dose of Xyrem, and knew that I would need to get up as early as possible without a second one because I still had far too much to do. It was also the second night in a row with a solo dose.

I did manage to get up between 4:30 and 5 AM, but I still delayed our departure by nearly an hour and a half. Fortunately, my wife and daughter remained calm. I did do some driving (about an hour and a half in the middle of that leg), but it wiped me out. We also got stuck in ridiculous traffic around Chicago. Being the car so long and the fact that I was baking on my side of the car left me with a horrific headache. Fortunately, my wife and daughter still went and enjoyed the dunes on Lake Michigan. Unfortunately, I was unable to awaken for my second dose that night, thus it was three nights with only one dose of Xyrem. The trip from northern Indiana to Tennessee was even longer than Friday's drive. Again, my wife did a bulk of the driving, but I again took a 1.5 hour section in the middle. I was fading badly at the end, and we wound up snapping at each other, but reconciled over lunch. The worst part of the trip came at the end. After 550 miles of driving, we spent nearly two hours covering the final 30 miles because traffic into Pigeon Forge and Gatlinburg, TN is so awful. Again, I was shot and baking.

I did get an okay sleep last night, but am also frustrated because our resort only has ONE internet computer available for guests. At some of their other resorts, they at least make wifi available in the lobby of the clubhouse, but at this one they CHARGE for it! So, I am sitting in the parking lot of a McDonald's using my new Qwest WiFi (available through AT&T). Of course, it took forever to make the connection work right, so I am only going to get a couple of chances to write on my blog. Worse, I truly had hoped to do a little work while I was here. Hopefully, I will work something out. I certainly plan to enjoy our vacation, but this is the first long trip that we have taken with me trying to cope honestly with my narcolepsy. I functioned poorly today (at best). We are going hiking tomorrow and rafting on Tuesday. While I am excited about those activities, I am also worried that I will be unable to do much else. I know that will frustrate my wife and daughter. We will see what tomorrow brings, though. I need to run now. I need to get gas for our car and to get groceries.

Sleepy Sunday

The day was definitely low key at my house today. My daughter had a friend here over night, and the two of them had fun creating a movie on my MacBook Pro. They also played air hockey, goofed around, and enjoyed the Wii. My wife spent most of the day resting, but is getting to some of the chores now. She is definitely feeling some pressure because we are leaving on vacation this Thursday. Thus, we need to get the house cleaned and have a number of ducks in a row before we hop in the car. Not only is she thinking about the work at home, but also she needs to get a number of things done at her office. Plus, her husband with narcolepsy is not a big help in crunch times - oops!

I spent the day puttering, but I did get some things done. I washed some dishes and finally cleaned off our dining room table. I am still hoping to get a couple more things done before I head to bed. More than anything, though, I used the day to recharge a bit. I tried to let go of my worries, appreciating the things that I did get done. Hopefully, my lack of fretting will continue throughout the week, allowing me to maintain my energy and to accomplish a few more tasks in the process. I definitely need for that to happen, but sometimes my body and my narcolepsy make their own plans. It does not help that I have two six hour meetings on Monday and Tuesday up at school. In the end, though, things will be what they are, and we will still leave on our vacation regardless. Life is funny that way.

Sluggish, but Sane

I chose not to push myself at all today. While I desperately want to be more productive, I knew after yesterday that I would be a fool to drive myself today. Thus, I got up slowly and thoroughly enjoyed the long "talk time" with my wife. It amazes me each week how wonderful it is just to spend time in honest conversation with her. I also know that those exchanges are a huge part of why my love for her deepens every day. After we finished, I attempted the crossword and finished the sudoku in the StarTribune. Then, I played some Animal Crossing, which is rapidly becoming my favorite mindless past time.

My wife asked me today how I can enjoy it because there is no "objective" to the game. But, I think that is what I like about it. Before my narcolepsy became intolerable, I enjoyed fishing. What was good about it for me is that I could sit and do nothing, but not get stressed out. Ordinarily, lounging causes me immense amounts of stress because my brain wants me to do things. In fact, it uses quiet times to inundate me with a myriad of unfinished tasks, but fishing WAS something. I could be focused on the process of casting and retrieving, blocking out the normal litany from my mind. Animal Crossing definitely fills a similar role, partly because I spend a decent amount of my time in the game fishing. I will need to be careful of my time with this one, but it is a good way for me to use my downtime in a restful way.

I did manage to help clean our kitchen. I even put away a few of the piles from our dining room table. Hopefully, I will have a bit more energy tomorrow. The most important aspect of the day, though, is that I am at peace with what I did and what I left undone. Much of my stress earlier this week centered on what I have not finished yet for this coming school year. The reality is that I still have time to get things done, and I am a part of an amazing team. We made significant strides on Thursday and Friday. I am willing to guess we will have even more success on this coming Thursday. I need to remember that I have already been more efficient this summer than I have been at any point in my teaching career. I still want to do more, and I will. But, I deserve congratulations for the work I have done thus far. Plus, it will do me no good to make myself sick well before the school year begins. Summer has to be about me regaining energy so I can be effective during the school year. I truly do not know what tomorrow will bring, but I will do my best to get one or two things done, and I will make sure that I continue to take the breaks that my body needs to rebuild my reserves.

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).

Meandering Moodiness

While today was slightly better than yesterday, I have yet to find any traction this week. That said, I did enjoy my day. My daughter and I continued to enjoy her new Wii game. Animal Crossing is ridiculously silly. You essentially fish, catch bugs, run errands for your neighbors, and dig up fossils. At the same time, it is hilarious. I must admit that the best part is spending time with my daughter. Although we did manage to limit the Wii time, it was still past noon when we "finished." We then went to lunch and took in a movie together. I do believe that things went well, but I still worry that I am not connecting with her enough.

I did manage to do one thing for my wife today. I got groceries, which we desperately needed. At the driving in the afternoon, I was a tad worried about driving again, but I rested for an hour before going shopping. Still, the trip to the store finished me for the night. I was able to let go of my anxiety over the things that I have not even started yet for my meeting in the morning. I think I can get a couple things done when I wake up, but I doubt I will have it all finished. Hopefully, my colleagues will understand and forgive me. I also have an appointment with my sleep doctor tomorrow. I need to pull together some questions for him. The appointment should go fine, but I also wish I had a firmer grasp on my current mental state. I am not sure how well my meds are working, but worry about trying to ask for anonther stimulant. We will see.

This needs to be short tonight because I need to get to sleep. I am painfully aware that my own inability to re-establish any sense of a schedule has been reeking havoc with my entire state of being - mentally, physically, emotionally. The good news is that I still have a week and a half of July. Then, I will get three weeks of August before school starts. That is a tremendous amount of time, but I must start moving in a better direction.

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.

Slow Sunday

Everyone got up late in our house today. As always, I was the first one up - Xyrem in a midnight and 3 AM means I am awake at 8-8:30 am. Today was no different. Of course, the physical exertion of cleaning up last night and the emotional strain of watching my daughter left me completely washed out. My wife finally arose around 10:45, and we got my daughter up at 11:15. I have no doubt that the stress of the play drained both of them. While my daughter loved the entire experience, she expended ridiculous amounts of energy, especially in the last seven days. As Alice, she was literally on the stage every moment of the play, and she gave to the audience for the full 95-100 minutes both nights. For my poor wife, the drain can primarily from insane nervous energy. I have seen my wife stressed about her own presentations, but that is nothing compared to her fretting over our daughter's performance. Since our daughter has definitely been bitten by the performance bug, I am hoping that my wife's anxiety will start to settle down.

Once we got up, we did nothing. I don't think any of us had much motivation today. We did decide to check out Harry Potter and the Half-Blood Prince. We loved the film, but even that trip to the film depleted the minimal energy that any of us had. I got home and felt like collapsing. Thankfully, my wife was able to let go of her own concerns about getting work done. I definitely would have found it more difficult to shut down tonight had my wife tried to push herself to do more work, partly because she has done a bulk of the work that was required from parents for the play. I sincerely hope that I can get back into a better groove in this coming week. I certainly have done a decent job, but I want to find a healthier balance in my work efforts and my exercising.

Although today was incredibly low key, it is wonderful to realize that we were able to have a day like this as a family. Far too often, we have isolated on days like this one. Or, one or two of us will be frenetic, while someone else shuts down. Rather than begrudging each other, we celebrated our fatigue together. As the PWN in the family, I truly appreciate that. As I have said many times, my wife and my daughter are the two people who I still worry about disappointing. Thus, days like today can be dangerous for me. Instead, today was heavenly.

Paying Penance

In the cosmic ebb and flow of my life, I knew a day like today was coming soon. Last night, for the third night in a row, I did not make it to my bed until "today" (meaning post-midnight). While it is summer, and I do not have looming deadlines, I can ill afford to get wildly off my regular schedule. The transition back would take me one to two weeks at least. That said, I am then faced with getting up after only one dose of Xyrem. That prospect is also rotten because I eventually get overly run down and cranky. I finally decided last night that I would actually do my second dose of Xyrem at 4 AM and would then be way off my regular routine.

Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter's play, I figured I'd better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so "off" that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.

Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).

Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school - Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter's personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.

But, even "knowing" that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an "actor's movie" with all of the behind the scenes silliness, but also it is a great reminder that "it all works out in the end." As Henslowe says, we don't know why or how - it's a mystery. I think it is important for my daugher to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play - the music director is a tad flaky. When the first "complete" run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.

My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don't think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today - oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.

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.

Partial Productivity

The last day or so have gone decently for me. While I do still feel adrift, I am having spurts of success when it comes to knocking one or two things off my ever-growing list. Beyond the finances, I filed somethings in our office, and I managed to get some tasks done for MOONS-MN. Most importantly, I got invitations out to others for the MOONS-MN gathering this coming Saturday, July 18. I definitely hope that a few people can make it. We are trying to have a few gatherings that are more social in nature because we know that many people want to have MOONS be more of a support group.

The best part about getting the emails and the U.S. Mail sent is that I will not feel any guilt or shame now, regardless of the turn out on Saturday. Had I been unable to accomplish those tasks, though, I am sure that I would have blamed myself for any failures (real or imagined) that might have happened. I definitely wish at times that I did not have this overdeveloped sense of responsibility. The reality is that I can only do so much, and I am honestly putting forth my best effort. I also feel good that I am making progress in helping get MOONS more organized - many hands truly do make light work.

One goal that I do have for today is to put closer to one thing around my house. I am not sure yet whether that will be our office (or at least the clutter on the desks - since there is MORE to do than I can accomplish in a day) or cleaning the kitchen completely. I feel like I am slowly wrapping my head around the idea of chipping slowly away at my many tasks. That is just one more piece of the lifelong journey that living with narcolepsy gives to me. I also know that I will need to spend some time this afternoon resting. My sleep last night was limited. Although I intentionally worked late, I still managed to fall asleep (post-Xyrem) in our office. Fortunately, my wife rescued me and brought me to the bed for a couple hours of decent sleep.

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.

Groggy Gray Grumpies

I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered - I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that "work" resulted in me being even more wiped out AND the following:

• House is messier today than it was on Monday
• Lawn is still not mowed
• I need to make two phone calls - one to set up yet another meeting
• Our office is still not cleaned
• Our finances are not yet up to date
• Oodles of things need to get done for my job
• Oodles of things need to get done for MOONS-MN
• Oodles of things need to get done for our house - window stain, door paint, room touch up, blinds hung
• My wife is depressed, and more from me would help
• My daughter needs us to run errands and help packing for an overnight

I often find the hardest thing about narcolepsy is letting go of the shame and guilt that a list like this one can foster. I KNOW that I did a decent job this week, but it scares the hell out of me that my progress during the week resulted in everything getting further behind. I would love to pretend that I will just "work harder," but that is not possible. In fact, pushing too hard is what got me to this morning when I awoke feeling like I had been run over. It is a strange, sad cycle. And, if I am not careful, I can let it eat me alive. My baseline has always been an all or nothing approach. I throw myself into things, or I completely surrender. Unfortunately, that approach has never worked out super well. And, when it gets right down to it, it won't in this moment either. I will NOT get that list above done today, tomorrow, next week, or possibly even next year. I also will NOT give up my wife, my daughter, my house, my job, my health, or my sanity.

My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don't). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight - pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least "get it" when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.

Fatiguing Fight

The thought hit me today that I expend tremendous energy battling my narcolepsy each day. Motivating myself to get up, pushing myself to exercise, forcing myself to bear down on a specific task, and stretching myself to be attentive to others (particularly my wife and daughter) are all doubly draining elements of my day. I truly want to do all of those things, but they not only take energy by their very nature, but also a second (actually initial) level of energy must also be exerted simply to overcome my inertia. Truth be total, my body and brain often seem to think that they would be most happy if I never left my bed.

Such a development would invariably be a disaster. I know my anxiety and depression well enough to know that even a couple of days of "nothing" would send me over the edge. My gray matter is constantly processing, thus with no outside stimuli, it would start to create its own. Having had a few other times in my life when my mind turned inward for "entertainment," I would like to avoid that FOREVER. Apparently, that big bundle of nerve cells in my cranium does fully get that it needs the rest of the body to keep functioning, since it has pushed the rest of me dangerously close to wanting to do something drastic. Fortunately, I am far more able to intervene when I can feel the irrationality starting.

None of that changes the situation, though, that narcolepsy not only makes my sleepy, but also it exhausts me because I have to push through it to "get going." I am sure it is the reason that I am an extrovert. I almost always dread starting - my day, my next project, a book, a conversation - anything. But, once I am engaged, I tend to gain energy for the interactions, even when it is something inanimate like a book. That is good because I think I would pass out if I did not draw energy from those activities. Of course, the catch for me is that when the stimulus is gone, my energy drops to much lower levels. My awareness to this reality has been heighten this week because I have been on the go a lot. I have had meetings and conversations for much of the past three days. When those have finished, though, I am always in a location that requires me to drive home (or to my next meeting). Certainly, I have felt tired other times when I have driven, but the fatigue this week has felt much more severe. It does not help that the burgeoning traffic in Saint Paul and numerous construction projects have made this the worst summer for traffic that I have ever seen.

I am not worried that I will fall asleep behind the wheel, but I am struck that each of my interactions have taken so much out of me. That happens at other times too, but I notice it less because I usually am not doing something as demanding as the driving that has followed each meeting or conversation this week. I definitely see it as another item about my narcolepsy that I need to tuck into my every growing file. I am also thrilled that this is my reaction rather than mentally beating myself up over something that is completely out of my control. Narcolepsy is something that I cannot "beat," but I also know that this is not about winning. It is about living and appreciating what I do have - every second of it.

Awesome Acupuncture

Although I am still feeling the effects of my bathroom sleeping experience, I am in a significantly better mental and physical state today. While my massage yesterday is definitely a piece of the improvement, another HUGE aspect is that I had acupuncture today. I tend to look forward to my acupuncture anyway (I see my acupuncturist every two weeks), but today was phenomenal.

Two weeks ago, Sarah (my acupuncturist at Langford Chiropractic) used cups on me for the first time. Essentially, she created a vacuum seal in a cluster of places on my back. It made me feel significantly better. I was sincerely hoping that she might want to use those again today, particularly because the cups did wonders for the tension in my upper back. While I might get cups in two weeks, Sarah decided to stick (pun intended) with acupuncture today. She did "shake up" my treatment, though. She also had to wait to use electrical stimulation on the needles until half-way through my session (she had another patient "hooked up" when I started my treatment).

The different needle placement certainly grabbed my body's attention. She placed a four or five needles down the center of my torso. She also insert needles in my right ear and in a few spots on my legs and hands. Even before Sarah hooked up the electricity, I could feel energy moving in my body. While I often experience that to a small degree, today was radically different. I had not felt this level of energy movement for years. The moment that truly stunned me is that when Sarah did bring the electrical equipment into the room, I thought she hooked me up with it "on." As soon as she connected the electrodes to the needles in my left leg, I could feel the electricity jumping between them and through my leg. But, Sarah had NOT turned on the electricity yet. The energy I was feeling was the natural energy of my body.

I am positive that much of the reason for this heightened success is that I have been doing yoga frequently with my Wii Fit. When I had this experience before during acupuncture (in 2005), I was doing daily yoga. Thus, the fact that I had such a similar experience in 2009 at the first acupuncture session after I have begun to get into a yoga routine again seems like much more than coincidence. Even though the yoga on Wii Fit is simply a series of poses, probably chosen more for the stretching, it is clear to me that I am much more in tune with my body. The excitement of this experience has me looking forward to doing even more yoga and working my way back to doing Kundalini Yoga once again (as well as the Wii Fit). Although I know that I need the Western drug that help to offset the conditions of my narcolepsy, I am thrilled that I continue to use non-Western techniques to manage the disease. Acupuncture is an important part of my routine. It truly makes a major difference in the quality of my life.

Fun & Free Flowing Fourth

Happy Fourth of July! Today was a good day in a number of ways. Even though I have oodles of things to do, I found a way to let go of those concerns and allowed myself to enjoy the day. Even better, I was productive this morning and completed the evaluations for the students in my summer class. Then, my wife and I had a fantastic time exploring the Trader Joe's that just opened in Saint Paul. We have had various items from Joe's in the past, but this was our first foray into an actual store. We were in a hurry, but were certainly impressed. I would have liked to see a few more gluten-free items, and Joe's will not replace my co-op, but the store does have many impressive items. I remain perplexed as to how they can offer organic and fair trade items at such low prices, but I intend to give them the benefit of the doubt, although I do plan to do some research just to make sure.

Anyway, after making some fun purchases at Trader Joe's we headed to the lake home of a friend's mom. Our daughter was already there. We then spent the afternoon relaxing, eating, chatting, and laughing with family friends. We even got to play in a bizarre family kickball game. The entire thing was a hoot. My daughter did have some tense moments, and my poor wife had to fight fireworks traffic (and ridiculously poor planning by the Blaine Police Department), but on the whole it was a great day for all of us. Even the late return time did not get me down because I got to see fireworks for the first time in years. I have no doubt that I will pay for a midnight bedtime for a day or two, but it is important to have fun from time to time.

The realities of narcolepsy make so many days difficult, but today was a sweet gift. I certainly was sleepy throughout the day, but the whole purpose of the day was simply to relax. Thus, it was perfectly fine to be sleepy. I am proud of myself for being present with the fun and low-key aspect of the entire day, rather than obsessing over the numerous things that I was not accomplishing. I do think that I am getting better at living with this disease. That idea might be the most freeing thought that I have had on this fantastic Fourth.

Funny Fallout

I always find it strange when I know that I am managing my narcolepsy better. The condition is so bizarre that it almost seems unwise to make such a claim, yet moments like today are plain and obvious. Thus, I must acknowledge the reality of life and my condition. As I knew, my decision to sleep a fractional amount between Thursday night and Friday morning overwhelmed me today. I spent the entire day lolling around my house. I did manage to get a small amount of work done, but the majority of my time involved working on a crossword, watching some DVDs, and exercising with our Wii. I have no doubt the exercising also added to my exhaustion.

Although I am pleased that I got some work done in the midst of my exhaustion, I am more excited that I did not feel guilty about the "undone" work. I found myself able to accept and to find comfort in that reality. I have time, plenty of it, for those other tasks. In reality, I have weeks to get to them. I don't want this initial list to take weeks, or even days, but in the past I would have tortured myself for not doing them today - immediately. Thus, I am content with knowing I have time.

The other element of the day that was exciting is that I had chosen to not "exercise" during the second week of MITY. The reality is that I did get some exercise simply from my "active" teaching style, but I did not work out. I love, though, that I prioritized my health over cleaning our office or putting away books. I have no idea if I will be able to hold onto that attitude, but it feels like a step in the correct direction. Hopefully, I will find a way to make working out a habit so I can carry it into my school year, but I also love that I am not worrying about that either. Needless to say, my exhaustion remains, but I am thrilled that I am letting go and learning to relax.

Wiped & washed out

I survived. In fact, I thrilled to a large extent. MITY wrapped up wonderfully. In many ways, my co-teacher and I were more on top of things this year than we have ever been. I truly believe that our class gave a tremendous reading. Each student delivered her or his best reading at the actual event. Plus, the book this year, while slightly smaller, seems to have better quality than ever before. I know that a piece of that is that I did more and better editing this year. Now, my brain constantly reminds me about the multitude of pieces that I did not provide feedback, but I definitely feel like I did the best that I could.

Perhaps the highlight of the session, though, came on our final day. I chose (and that is the truth) to stay awake as long as I could to get as much work as I could done. I eventually had to get into bed, and I did sleep for two hours. I knew that I was making a choice and that I would likely lose the weekend as a result of that choice, but I felt that it was worth it. As a result, we not only had the supplement (we make a book of the students work, abd then create a final "supplement" that has fun memories and a few more pieces by them held together with only a staple) ready, but we also had the 3 CD-ROMs (photos that I took, the book and supplement files, etc) burned, and I love the poem that I wrote for the class (that is not always the case). I also managed to be present for our students and truly enjoyed the final day of MITY this year.

Typically, I am a wreck for the final two to three days. I worry that we won't get the book together, then I worry about the reading, and then I obsess about what I have done and what I have not done for the last day. This year, we were ahead of the curve each step of the way. We dropped the book off earlier than we ever have, although I am still waiting to get it turned in on a Wednesday rather than a Thursday. The reading came together beautifully, and I know our final day was as good as it can get - the day will always be bittersweet because we all have to say good-bye. Perhaps, the final element that made this "closure" so complete for me is that my co-teacher and I had the room cleaned, the computers returned, and our keys turned in before 4:30 PM. Much of that had to do with the assistance that we recieved from our students, but it was breath-taking nonetheless.

I also think I am pleased with the way that MITY went this year because I see it as one more sign of the strides I am making in handling my narcolepsy. Of course I was tired and pushed too hard at times. I need to get a better grasp of what I can and cannot expect of myself during the middle weekend of MITY. I also need to remember that the transition from "regular" school to MITY will always be bumpy because it is a shift in my daily schedule - and my body does not "do" that well. But, I am clearly starting to let go of the things that I cannot control. I am allowing myself to release - over editing, over "undone" work, over insane expectations. The journey is long, but each day is another step. Which raises my final point of pride. It was at MITY a few years ago that I first began to recognize honestly my inability to live in the moment. Although I certainly am still four days ahead, or two years in the past, in any given moment, more and more I am grounding myself in the events unfolding before my eyes. The results could not be clearer. My days are richer, even when they are limited by my narcolepsy. I can't get everything done that I "want to," but I am accomplishing more each day than I ever did when my narcolepsy was "hidden." I regularly avoid direct self-praise, but I need to admit that even I am impressed by my improved efficiency.

Museum Musings

I am sitting in the cafe at the Minneapolis Institute of Arts. Correction, I am being paid to sit in the cafe at the Minneapolis Institute of Arts. I am here with the students in my Minnesota Institute for Talent Youth students. My co-teacher and I have brought our students here each year for the past four. Usually, I am pacing the galleries, looking for our students to photograph them, and worrying that I am “not doing enough.” I do periodically take a few minutes stop to look at a piece of art, but so often in the past I have felt like I MUST be the “teacher” while I am here.

I know I am slowly coming to terms with myself and my narcolepsy when my immediate thought this year was, “hey, I can use the time at the MIA to unwind a bit.” Not only that, but also I felt no guilt in that thought. Thus, MITY is paying my to chill this afternoon. Even better, I definitely feel like I am earning that pay. My co-teacher and I spent time on campus and here framing the experience. We are getting the students into a different environment to provide new stimuli to inspire their work. And, quite honestly, whether I am sitting here, or if I were pacing the galleries, I would not be helping my students write. In fact, one could argue that my hover easily could do more harm than good.

Even as I typed that, I realized that one of my students just wandered past. The young women and men that I get to teach a MITY amaze me. Often, they have been treated with ridicule and disdain because their intellects frighten even their teachers. Thus, most of them have no idea how to feel supported, or welcomed, or appreciated. Also, because they tend to “get it,” at least intellectually, the wonderful young women and men do not know how to be kids. By letting them roam, we are giving them the gift of trust and respect. They certainly do not need me to watch their every move, nor do they need one more adult who makes them feel uncomfortable. I have no doubt that the approach which my co-teacher and I take in the classroom (by treating our students as brilliant and thoughtful young adults) is a huge piece of the success we have had over the years. I am grateful that I am beginning to find ways to bring that same attitude to our field trip.

It is just one more way that narcolepsy has proved to be a blessing, rather than a burden. The reality during the previous two trips to the MIA is that I HAD to rest for long periods. I felt guilty doing it – “I can't let MITY pay me to rest” – but it happened nonetheless. Bottom line, though, is that I will be far more effective tomorrow because I took this time to relax today. So much of managing my narcolepsy is letting go. I tire rapidly and stress increases the energy drain. By being hyperconscious at a museum, I exhaust myself and do a disservice to my students. Thus, I am allowing myself to appreciate the stillness today. Hopefully, I will continue to embrace the gifts and the frustrations that narcolepsy brings me on a daily basis.

On a tangential, but loosely related, note, my Wii experience continues to be productive. I have now found myself on at least two occasions dripping with sweat while grinning and laughing. I am clearly getting exercise (and finding genuine strength building in my legs), but I am also having fun. Both of those are vitally important to me living with my narcolepsy. My physical endurance has fallen precipitously over the past two years. It is the awful reality that time for exercise has remained a distant priority as I have been forced to choose where and when I exert myself. At the same time, I have pulled away from many of the things that do make me laugh. My ultimate team was a major highlight of my life, mostly for the joy and camaraderie that it brought me. Sadly, the declining nature of my physical condition stripped the fun out of ultimate. While part of the pleasure I take from using the Wii is laughing at how stupid my Mii looks at times, I am also spending far more time interacting with my daughter. I had dearly hoped that the Wii would be a bonding element for our little family. Things are definitely developing that way. Finally, even if the exercise and fun were not happening as well as they are, I am overjoyed that I am using the Wii to reconnect with yoga. Primarily the “yoga” material on Wii is poses, but those alone are helping me reconnect to my body in a deeper and more spiritual way.