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.

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.

Massive Mayhem

I truly love that even the transition into summer break takes days of adjustment. One would think that a guy with narcolepsy would find it thrilling to begin a month and a half of relaxing. If only it were that easy. As I continue to remind myself, ANY change in my daily routine throws me for a loop. I tend to be more tense and to snap at people more rapidly. While I am making the shift better this time, I still find it frustrating - and stupid. Sadly, I am sure that no matter how long I continue to "learn" about living with narcolepsy, the act of moving from one daily schedule to another will continue to be difficult for me.

The up side is that I did get up today and exercise. That alone is a huge step for me. Unfortunately, I know that I am still recovering from last week. Thus, the exercise sapped me for a couple of hours. After resting, though, I got some work done. I even decided to have some fun after that, but invariably that led to trouble. My daughter decided that she wanted to play with the Wii too. Things were going great, but then after we each did our "Wii Fitness" on Wii Sports - which is an individual activity - she simply started doing something else individually. When I questioned her, I got a rude retort. I have no doubt that my daughter thought that she was being funny, but when I challenged her on that comment, I got a second rude retort. Since I was tired and crabby, I snapped back and a lovely fight ensued. It then continued as my attempted to reconcile. And, adding a second layer to my disappointment in myself, my wife was still home and found herself embroiled in the disagreement.

My daughter and I were able to reconcile and apologize to each other, but I hate that I was unable to keep myself in check when my daughter acted like a normal pre-teen. While her behavior was not appropriate, I can't lash out at her. I did contain my frustration far better than I have in the past, but the reality is that I still reacted rashly and immaturely. As the parent, I need to give her the space to be angsty, and I need to be patient enough to let her settle down before re-engaging about the situation. I do know that I happened things "better," but I need to keep pushing myself on this. The narcolepsy definitely complicates the situation, but my relationship with my daughter is far too important to let this medical menace jeopardize it.

The other difficult item to accept today was the fact that I nearly fell asleep in a chair tonight. If that was happening at 10 PM, I would be okay with it, but I was dozing and drifting heavily at 6 PM. Now, I know that I had a productive (and stressful) day. I also know that transitional periods are tough for me. But, it remains horribly humbling that I spent most of my day sitting around, yet I can't stay awake past 6 PM even with 60 mg of amphetamine in my body. Seriously, you GOTTA love this condition - NOT! Obviously, I rallied. I even got a few other things done. Hopefully, July will hold more hope for a solid schedule, smoother transitions into my new days, and for more patience with my incredible and wonderful daughter.

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.

Wonders of Wii

I have loved video games my entire life. Growing up in the 70s and 80s, I experienced first hand the arrival of home video games. I also fall into the primary age group to have "lived" the hey-day of the video arcade. My summer before ninth grade, I spent hours nearly every day in the local arcade. While part of me regrets those lost hours, another still longs for the sheer joy of honing my skills at Galaga and Tempest.

Although I have own a couple of game systems as an adult (a Super Nintendo and a few "plug in" consoles that hold 5-20 games), my wife and I have purposely avoided purchasing any of the ever improving systems during the last 15 years. The primary reason truly is my inability to stay sane when I have a game system. Certainly, I chafe at the idea that I am incapable of remaining grounded when there is a game to "beat," but I also know that the decision has been a wise one.

Given my narcolepsy, I shudder to think the state I might be in today if we had purchased a Game Cube or an X-Box. Heck, I have even avoided computer-based games for the same reason. I have no doubt that Worlds of Warcraft would have stolen hours of sleep for weeks on end. In fact, I would be willing to bet that gaming easily might have masked the depth and extent of my excessive daytime sleepiness for at least four or five more years.

The irony is that I am writing this the day after I purchased a Wii system - with my wife's permission and approval. I might be a risk-taker at times, but I am not an idiot. While I do worry that we could eventually acquire a game or two that might tempt me into a few "all-nighters," I am more confident about my maturity and decision-making. The reality is that I know what happens when I push, and more often than not, I am unwilling to sacrifice the next two or three days simply to "enjoy" a little friviolity. Let's hope I am still saying that next month and next year.

We decided to get the Wii because I am struggling horribly to work exercise into my routine. I feel like I am finally beginning to learn how to balance home and work and me. That in itself is a massive accomplishment for me. But, I also know that I will be healthier, happier, and more complete if I can find even a modicum of fitness. Enter the Wii. My wife and I spent Saturday night with my sister and her husband. They have had a Wii for awhile, but this was our first couples "Wii night." Everyone had a blast playing a wide variety of games, but at the end of the evening I got a chance to try Wii Fit and the Balance Board. Not only did I find it fun, but I also realized that it could easily be a missing step in getting back into some type of exercise groove.

The beauty of Wii Fit is that I don't have to GO anywhere. My narcolepsy makes me so wiped out at times that the idea of driving to a gym, or even running to the lake a mile from our house, is simply not an option. I worry that I will exhaust myself. If I do that and then need to drive home, I risk my safety and that of others. If I do it and am now a mile from my house, I am foolish enough (and male enough) that I will still try to run home. Then, I will get sick. It happened repeatedly last summer with ultimate and with yardwork.

Instead of risking those things, I can now plug in my Wii and do some yoga and light conditioning work in front of my TV. It also "feels" like a game with vocal support from the etrainer. The Wii can't be my only exercise, but it is a perfect place to start. I would love to pretend that I am capable of pushing myself to establish a workout routine on my own, but I am not. I have nearly forty-one years of failure as evidence. I do best, in terms of fitness, when I am part of something. The Wii tracks my progress for me. And, the fat little Mii, that is ME, provides its own motivation. I know this is going to help me.

I feel blessed to have a wife who supports me so much that she is willing to change her mind about getting a Wii. I also am proud that I bought the Wii last night and have already used it twice to "workout." That is two more workouts than I have done in months. Pretty good for less than 24 hours. Still, it is not lost on me that while I am starting strong, I have done that before to taper to nothing within days. I believe this will be different, though. I need this and the exercise will take the place of some of my other recreation. Building up my strength slowly will also prevent my system from crashing. That is also a good thing (and a chance from the past).

Battling the Blues

Vacations and breaks are good and bad for me. I definitely needed to rest and relax, which this time off is allowing (at least in a small way). The problem, though, is that I continue to feel compelled to do things. When I have free time, my brain continues to race with everything that is un-done. That might sound odd, or even insane, to some, but it is the best way that I can describe what happens inside my head. When I have time to think, the tapes in my head regurgitate each task that I have yet to accomplish. Often, the resulting effect is stressed out paralysis - which does little to relieve the overwhelming anxiety. Needless to say, I know that these irrational thoughts are one of the largest burdens that I will face as my life moves forward.

A portion of this self-defeating trait must be genetic because I know that my mother, my grandmother, my aunt, and my great-grandmother all have (or had) the same types of tendencies. Clearly, it is also learned behavior. Watching all of those women in my life push themselves certainly rubbed off on me. My father also never stops moving, although I remain convinced that his behavior is also a way to cope with undiagnosed sleep issues (quite possibly narcolepsy). The third element, though, is me. I do know ways to cope with these messages, but I tend to let them drift to the wayside as I get busier (and more tired) during the school year. The best way for me to cope with this proclivity for irrational delusions about my work load is yoga and meditation. Closing following those two techniques is exercise. When I am stronger and more balanced mentally, emotionally, and physically, I am better able to fend off and ride out the onslaught of "missed opportunities" that can crash over me when I try to have down time.

Unfortunately, I do let yoga and exercise disappear when I am pressed for time and energy. Both do make me stronger and improve my endurance, but they require time and physical strength too. Rarely do I prioritize my need for them over my wife and daughter, or my job. In this on-going journey of narcolepsy, I need to press my personal agenda. If I do not, it will hurt me, my family, my colleagues, and my students. The reality is that things that make me more complete need to be at the top of my list, rather than in the "if I have time..." category. The truth is that I will NEVER have time for that category.

I find it ironic that even now I am writing this blog post to keep the negative messages at bay. Already this morning I have conceived of more work to do than I could hope to finish in a week. But, because I am run down and still recovering, the messages flood my brain - clean the fish tank, clean the kitchen, clean the office, sort the mail, organize the pictures, re-organize the computer files, get the books moved at school, write up the MLA formatting rules, vacuum the house, change the cat litter, do the laundry, pack for the trip, get the money entered, finish the taxes, and those are just the things that I need to do "today." Typing that list scares me because part of me truly believes that I should do ALL of that today. Then, another voice reminds me that I can't do it because of my narcolepsy and because I am weak. I know that all of that is irrational, but when I am this tired, I struggle to fully accept the irrationality of those ideas. Thus, they feed my depression and anxiety further.

In the end, I simply must embrace this portion of my journey. Playing ultimate (and my long walk on Monday) reminded me that exercise does help me. Slowly, I will find a way to work yoga and exercise back into my routine. Poco a poco, I will make the changes that I can, both to live a more balanced life and to recognize that I can be a person with narcolepsy and still have joy and contentment. Likely, the path will extend to the end of my time, but at least I know I am moving in the proper direction, even if it is one slow, small step at a time.

Lazy Lounging

After a fantastic, but frenetic weekend, I find myself enjoying a relaxed day with friends. My wife flew home yesterday (and I miss her terribly), but I am staying through Tuesday with some of of my college friends. We had a wonderful dinner last night and play a super cool game - The Settlers of Catan. It is sold in the U.S. by Mayfair Games, and I was impressed looking at some of their other offerings too. Likely, one or more of their products will be appearing in my own home soon.

This morning, I slept in for the first time in weeks. My body still is quite angry about the beating that I gave it on Friday and Saturday, but it was also good for me to learn that I can still do some physical things. I am not obsessing over the possibilities (which is good), but I do have some new motivation to find an exercise routine. It was tremendously humbling to realize how much endurance and strength I have lost in the last few years, but I went into the weekend knowing that such epiphanies awaited me. Rather than feeling depressed about what I couldn't do, I am pleased with what I could do. I still made some good plays. I even ran with a person or two who is likely half my age and NOT a person with narcolepsy. So, that has to count for something. I even scored a goal, threw a score, made some defensive plays, and had at least one impressive catch. That truly is impressive for a 40-year old man with narcolepsy who has done virtually no physical exercise (other than lots of walking as a teacher and yard work at home) for over 8 months.

Another positive from the weekend is that I wisely decided not to play yesterday. We had at least one game guaranteed on Sunday. It turns out that the team we played was super spirited too. While it would have been a blast to play a few more points, I know that today would have been vastly worse if I had played. When I awoke on Sunday morning, I knew that I had nothing. I find it difficult to describe the sensation, but essentially I knew that my "tank" was empty - even the reserve supply that exists for fight or flight. Once my amphetamine kicked in, I was functional and could have played. But, the exertion would have made me even more washed out today. Narcolepsy tends to manifest differently for so many people. I am sure that when I push as hard as I did this weekend - mentally and socially, I use up energy that is supposed to go elsewhere in my body. Last year, I got sick the few times that I pushed through the way that I felt yesterday. Thankfully, I am getting better at listening to my own body.

The finally irony of today is that it is gray and rainy in Maryland. Rainy stopped literally minutes before our first game on Friday. We then got three perfect days for ultimate. Well, they were a tad windy, but the sun and warmth were glorious. Now, when the tourney is over and most of my friends have gone home, the weather is gloomy and colder. But, that is also a great reason to lay low and rest. I don't feel like I should be running around to "see the sights" in D.C. with weather like this, but had the sunshine of the weekend continued, I definitely would have felt some level of guilt. Thankfully, I can simply enjoy the presence of my good friends. I will also get a chance to see some other friends this evening. I must admit that this is a great way to spend my spring break.

Sunny Saturday

While my body is exhausted, I have had a wonderful day. Today was day two of the annual WAFC Fools Fest. We still have not won any games, but we staged a remarkable comeback in our final game. We were down 8 to 1 at the end of the first half, but only lost the game 14 to 10. I even played a couple of key points in the game. We also had a glorious time just being together.

One of the things I love most about ultimate is that so many excellent people play the game. One of our pick-ups is an incredible player and person who goes by School. He plays regularly with some of our Drew Alums, but he fits the team perfectly. While I connected with him yesterday, I had a stellar conversation with him today. It is moments like that which I will miss the most, talking to a quality person while also have a grand time chasing plastic.

The good thing is that I can still play ultimate periodically. Perhaps a pick up game here and there coupled with a few more Fools Fests will tide me over. At the same time, I know that coming to this tournament only underscores why I can't continue to play club ultimate. My narcolepsy does not directly impact me on the field, but the lack of exercise time is a secondary factor. Without the chance to work regular exercise into my limited schedule, I know that my body can take no more than the handful of points that I am playing. That said, I am likely even trying to do too much as it is. In our first game, I played two points in the first half. During the second one, the disc turned over many times. By the end of the point, I struggled to walk off the field. It took me about an hour to recover from that one point. Talk about humbling!

Still, I know that I did the best I could today. I also know that some of my sideline cheering helped others to play with more fire and energy. I do hope that I can find a modest exercise routine, but I also know that the process of establishing it will come with time. Narcolepsy can be so frustrating, but it continues to help me to appreciate patience and grace on a daily basis.

Exhausted excitement

I am rapidly approaching the one year anniversary of this blog. One key event reminding me of that reality is the annual WAFC (Washington Area Frisbee Club) Fools Fest. Today was the first day of the tournament. One year ago, although I knew that things might be getting better at my job, I felt tremendous stress from my narcolepsy. I also did not play in the tournament because my knee felt like a disaster. I honestly believed that knee surgery was in my future.

Fortunately, some physical therapy significantly improved my knee, and I eventually found MOONS-Minnesota and the Narcolepsy Network. But, immediately after last year's Fools Fest, I began exploring Facebook and MySpace, finding my first sources of narcolepsy support. Then, I began this blog, and my life has improved significantly.

Many of the things have brightened for me in the last year, but others have dimmed. One of the most difficult "losses" is the reality that I cannot play ultimate frisbee again for my competitive club team. The time and energy required is more than I can afford to expend. While I know that my decision is absolutely correct, I continue to feel the emptiness that it leaves.

Thus, this year's Fools Fest has been on my mind as this event has approached. I had desperately hoped that I could play some this year, but my complete lack of exercise has had me worried. Today, the day of reckoning, finally arrived. Yesterday, my wife and I had a much longer travel experience than we had planned. Our plane had engine problems, forcing us to arrive hours later than we had planned. We did get sleep, but it was the fourth or fifth day in a row that I only got in one Xyrem dose.

When play started, we only had a handful of men. I played 3-4 points in the first half and nearly collapsed. Fortunately, we picked up a few more men, but I also recovered and continued to play. While I am sore tonight and only played 4-5 points per game, I am overjoyed that I played fairly well today. I threw for a score and managed to score a goal. It was wonderful to discover that I still have decent ability. I do not have nearly the stamina that I once did, but I held my own on the field. We will see what tomorrow brings, but it is refreshing to know that I can still enjoy this fantastic game, even if it is in limited doses.

Yin Yang Year

Happy New Year! It occurred to me today, as I drove around Saint Paul (and the Twin Cities) like a mad man, that I should spend some time reflecting on this past year. It is breathtaking to realize that one year ago I could feel hope slipping away yet again. In fact, as I entered January of 2008, I was sure that the stimulant I was on was not strong enough. Then, when I tried amphetamine for the first time, I was convinced the wheels had completely come off of the wagon. My hands began "sweating," and I found myself in a complete spiral. Somehow, I held things together, but I also missed my most school in January and February. The dyshidrotic eczema was driving me nuts, and I seriously thought that I might need to quit teaching. I also remained completely exhausted.

Even when I got my hands under control, I had a swollen testicle again and felt horribly run down. Still, the worst was yet to come. As February ended and March began, I found myself at a low water mark. I hated going to work and knew that my classes were toxic to me. I had started on my amphetamine, but my knees were in extreme pain. My weight was barely hovering at 150 pounds. And, with the start of the third trimester, I found myself completely lost. My schedule and pattern at school had changed and it took me three weeks to get my bearings. All of it had me beside myself. Then, we went to D.C. for the Fools Fest, and the worm turned.

Initially, I was convinced it was the end of the world. I could barely walk up the hill to the fields. I didn't even go to the fields on the second day. It was wonderful to see my friends from college, but I was depressed beyond belief. It looked like narcolepsy, or my body, or something was going to take ultimate from me too. Yet, as I returned from D.C., I seemed to have a little more hope. Perhaps it was seeing our friends, or maybe it was my deepest self getting fed up, or perhaps it was the arrival of spring, but I came home with a small fire in my belly.

The first piece of good news was that my knees were okay. I needed physical therapy, but I had been convinced something was torn. Then, I found Facebook and started this blog. Suddenly, I was discussing my narcolepsy and connecting with others. At school, I finally recognized how toxic my course load was and owned it. I came to terms that I would be unhappy for the rest of the year, and that made things lighter. I also turned my focus to the new course that promised to be much better for the 2008-2009 school year (and it has been). Finally, I began, for the first time in my life, to accept that I am a finite person. I can't be all things to all people. I must be content to do what my body allows.

As the school year ended, I finally got to a MOONS meeting. I signed up for the Narcolepsy Network. I got excited that MITY was approaching. At the same time, I had to confront again and again my tendency to overestimate how much strength I had. Ultimate remained frustrating, and I never did find a way to get back in shape. Eventually, I had to step away from ultimate. I still don't know if I will be able to play competitively again, but am much more at peace with that. I also had many dark days when I turned all of my ire inward. But in processing those moments, I found more and more ways to forgive myself.

These last few months have been incredible. While there is still so much that I must learn about myself, about narcolepsy, about how to find peace, I know that I am on the right path. The most important lesson I have learned in the past year is that I can't control a vast majority of my world, but I can control my reaction to the world around me. I need to roll with the realities of my life. I need to breathe. I need to take each day, one moment at a time. Hopefully, as good as the end of 2008 has been, it is only the beginning. The more content I am, the more I am able to embrace the world.

Health Habits

It is frighteningly obvious to me that I need to modify what I am doing in my life, particularly when it comes to eating and exercising. When my stimulants were stripping weight out of me, I began eating huge bowls of ice cream simply to prevent weight loss. Of course, when I started taking heart meds (because my stimulants sent my BP sky high), my metabolism also seemed to slow. I don't eat as much ice cream now, but I still eat some. I definitely need to stop doing that. My weight has steadily risen throughout the summer and fall. I can't afford to get any heavier.

I also need to get back into a much better groove when it comes to my diet. I am not eating a lot of gluten, but I have some at least three or four days a week. Beyond knowing that the gluten makes my digestion worse, I am also sure that it exacerbates my sinus issues. I need to buy healthier food and stop using junk food for comfort. I am hoping that by naming this, I will own my commitment to myself.

Beyond the food issues, I need to begin working out. While exercise will certainly help with my weight, even more importantly I will begin gain back some physcial strength. My knees have begun to hurt again. I am also sure that some of my fatigue is a result of my lack of any kind of endurance. My regiment will need to start slowly. I clearly do not want to overexert myself. I remember all too well how sick I got this summer when I pushed to hard. Still, by building muscular strength, I am certain I will gain mental and emotional fortitude. As always, my concern remains time. I hate that each day seems to only provide me limited windows of energy. Yet, that is the reality. Getting healthy is the best thing for me, thus is must become my highest priority. It does not mean that I won't do other things, but it does mean that I have to stop waiting for some free time. There is no free time! If I intend to get in shape, I must give up other things, or simply know that I will not put much energy into my other activities.

My goal is to work out three times between now and next Friday. I also will minimize sweets and go the entire week without eating gluten. I think the goals are realistic, but we will see what my reporting brings next Friday.

Feverish Frustration

I was supposed to go to the zoo today. I was supposed to enjoy the day with my wife, my daughter and my sister-in-law. Instead, I spent it on the couch, under a blanket, with my temperature slightly elevated. Even more annoying is that I am positive that today's health woe is directly connected to pushing too hard yesterday. I have been doing a good job of balancing things for the past week, but I went too far yesterday.

Since the weekend juggling a house guest, school prep, housework and mental health has been flowing well. We have had a great time going places with my wife's sister. I continue to grow in respect for my teaching team and in excitement for the coming school year. My yoga and exercise have not fit, but I have been breathing and have remained calm. I even have managed to get big and little projects done in the house. Best of all, though, I have done all of this while still taking care of my physical health.

Unfortunately, I started on another big project yesterday. We are hoping to have some major work done on our house and garage. As a result of that, we needed to remove a decent sized tree (10 years old or so) from behind our garage. I thought it would fairly simple, but I was definitely wrong. I took one look at the tree and realized that I needed to get onto the roof to remove branches. While I was up there, my saw died, but I got the branches off.

I was exhausted and wisely went inside to rest and to have lunch. I had already had a four hour meeting that morning, and we were hosting a family cook out that night. I sat for an hour. Then, I made a horrid mistake. I assumed that I could quickly finish the tree. Since I had a second battery pack and only the trunk to cut down, I figured the cutting would go quickly. Invariably, the trunk was thicker than I thought, the wood was young and hard to cut, and the battery died quickly. I also became fixated on finishing. I pushed through because I was worried (irrationally) that I would leave the job unfinished. Fearing that weeks from now my wife and I would be fighting about the tree truck, I got the hatchet from our garage. I also know that my "estimations" can often be WAY off. I truly believed that I could chop the remaining tree down fast.

The actual process tool much longer - on the order of a half hour. I flailed away at the trunk. The blisters that developed on my right hand still hurt today. In fact the one that popped while I worked made me nervous at first. I thought it might be infected, but I was wrong (thankfully). I did get the tree down, but my whole body was shaking. Somehow, I settled down and had a good evening. My wife did most of the work when our guests arrived, but I even did some cooking and cleaning.

What drives me insane, though, is that I didn't sleep well. Then, I woke this morning and knew that I was sick again. I felt lousy, just like I did last week after trying to play ultimate. I understand that I need to be careful with my exercise and exertion, but it drives me nuts that one bad decision can derail me for at least a day. I am worried that it might even be more than one day. It took me three to four days to "recover" from ultimate. I also know I felt WAY worse yesterday than I did last Wednesday. I will cope with whatever tomorrow brings, but my mood will be dismal if I feel this sick or worse. We are supposed to go see the Star Wars exhibit at the Science Museum of Minnesota. I want to do that with my family, AND I REALLY want to see the exhibit. I just can't understand how my body can be this frail. It's crazy, absolutely crazy.

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.

Ultimate Undoing

After wrestling with my thoughts for a week, I finally decided today to pull the plug on my ultimate season. I wrote to my captains earlier in the week, asking if I could come to some practices, but not play in tournaments. That felt cowardly and empty, though. I also felt that I was unfairly laying my problem at their feet. So, I wrote them again today and my team. I know this is the right decision, but it is still hard to accept.

In the end I came to terms with my current physical reality. I am in decent shape physically and mentally, but the demands that I would put on my body, even at an occasionally ultimate practice, are too taxing. I would love to pretend that I would make good decisions at the practice, but I know that I would not. Because I have lived with narcolepsy for so long and have learned ways to draw on energy that should be doing other things - like keeping my immune system functional - I would play fine at practice. I would then pay for that effort over the next week, or more. My summer cold continues to linger. I am willing to guess that my trip to the ENT in a few weeks will show more inflammation and possibly a sinus infection.

Those consequences are unacceptable. Part of being smart about my life is knowing when I have to step away, even from things that I love. I do hope that I will be able to slowly build my physical strength and endurance back to a point that I can practice and play ultimate at the competitive level. But, I am not there currently and I need to be honest with myself. I have a good schedule for my teaching and the right course (I think). I am also starting to grasp how I can be present for my wife and daughter and still be effective in the classroom. Doing that, while living with narcolepsy, is a massive accomplishment. Not playing ultimate, while disappointing, is a small price to pay to stay on track with those other priorities.

The other reality is that, while I have managed to re-start my yoga, I am still not exercising regularly on my own. One reason is that I am still recovering from playing ultimate a week and a half ago. Trying to go to practice out of some warped sense of loyalty or irrational belief that I have to be there for "me" only serves to undermine the very wellness that I am trying to build. I am much better off finding 30 minutes here and there to do some basic exercising that will allow me to survive the school year and to diminish the sense of fatigue that I have each day.

Ironically, I thought of Santiago from The Alchemist as I wrote both of my emails. I too am leaving behind things that I love to embark on a scary new journey. I do believe that ultimate is part of my Personal Legend, but I also know that things may happen on this quest that never allow me to return to playing this game that I adore. Yet, had I tried to "stay" and play, I would wind up miserable. Choosing this path affords me the chance to return in the future more whole and balanced. If I am able to walk this route, I will enjoy ultimate that much more, rather than becoming bitter by pushing now and failing horribly. I need to continue to practice the patience of Santiago. Like the young shepherd, I must learn to read the signs of the world, opening myself to the universal language without words. I know that I am right in understanding that all the omens told me it was time for a break from disc. It hurts, but the weight of the world lifted when I sent those emails today.

Swell Start

A day proves nothing, but I need to acknowledge that I managed to do some yoga, exercise a little, work, enjoy my daughter, and even start periodic breathing exercises. Things need to become habitual, but it is a good start. Some of those things took place with a horrid headache. While I am not thrilled that my head hurts, I am pleased that I did not let it derail things.

I performed the yoga this morning, after feeding the cats. I only did the "warm-up," but I did it! I also could feel it helping. We will see how things move forward, but I am hopeful. I practice Kundalini Yoga (there is an online course which is supposed to be free) which focuses on spine energy and breathing. When I did it regularly in the spring and summer of 2005, it helped me tremendously, especially when I was doing it and receiving acupuncture treatments. I am hopeful I will see some similar results by restarting it (and I am once again seeing an acupuncturist too!). One of the greatest benefits is that Kundalini helps with the endocrine system and balancing the brain hemispherically.

My exercise came in an unexpected way. My daughter asked me a couple of days ago if we could go to the local tennis court and the hit ball a little. She has not shown an interest in tennis before, but I was certainly game. It turns out that she is pretty good, especially for her first day. I ran more than I had planned, but we both had fun. I need to find a pattern for my strengthening exercises too, yet how can I not celebrate having a great afternoon with my daughter. I had considered trying to "bow out" because my headache was so intense before we left, but I had promised her that we would do it. I also know that the temperatures in Saint Paul will only climb over the next few days. If I "had" to do it, I figured today was the best bet. We will see if her interest continues. Still, I must remember that doing physical things with my daughter will certainly help me to build physical strength.

The final element of the day is that I managed to do all of this, while finding time to do a little work and to rest. The challenge remains for me to be "content" with what I accomplish versus frustrated by what I left "undone." That is where I need to keep using this blog and self talk and my friends and family. All of those things constantly remind me that I am a good person. Opening myself to that will continue to make me whole. I also must remember that one (or two or one hundred) "bad" days don't mean that I have failed. They are simply less.

Physically Failing

I wish I knew how to surf. If I did, I could honestly say, "narcolepsy is like riding a big wave - you know you are going to crash eventually, it just depends on how much it will hurt this time." Sadly, I don't surf so I have no idea how accurate that statement is. Still, I feel like the wave won BIG time this weekend. I have gotten some stuff done, but I was supposed to be cheering on my ultimate team and playing a few points. Instead, I awoke yesterday with a summer cold in full bloom. My wife and daughter both had it, but there was about a week lag between theirs clearing up and mine. I made the right choice and stayed home, but I hate missing the tournament.

I also know that part of me "getting" sick was trying to do more than I should when I practiced on Wednesday. I am "out of shape" and run down. Now, I can certainly still play ultimate decently even in this condition, but it comes at a price. The longer I live with knowledge of my narcolepsy, the more I realize how "good" I became at pushing myself well beyond my physical limits. I am sure that parts of my other health woes stem from me using up energy that should have gone to my immune system and digestion. Even now, as I have been generally healthier since starting narcolepsy treatment, I can feel my health slip when I do too much. The four weeks of full time teaching in a five week period was a terrible decision, but so is playing ultimate at full speed (or as full as I can go) when I am still recovering from that teaching.

I definitely need to do some thinking during this next week. Is it wise for me to try to practice two days a week right now? I definitely MUST start an exercise routine since my back and knees are not doing well and my weight keeps creeping up now that I am on blood pressure meds. But, are two to three hour intense practices a good decision? Beyond that, does it make sense to try to go to all day tournaments when I can't honestly function well in my own home for an entire day? The hard part in this is that I LOVE this team I am on. I love spending time with them and I do contribute in tangible ways. I need what my team gives me, but does that outweigh the potential negatives to my physical health? I just don't know.

I think I need to email my captains to see what they think. I also need to discuss it with my wife. She is incredible at helping me gain perspective. I, sadly, am terrible at limits. I need to block out my day so I have set periods for exercise and yoga. Without those, I shouldn't be thinking about doing anything physical (or much else for that matter). My endurance is WAY down. Part of that is the narcolepsy, but part of it too is simply atrophying due to not balancing my schedule and activities. I need to be stronger just so I can teach part-time effectively and still be present at home.

Even as I wrote that, it hurts. I know that the right thing is to see if I can still come to some practices, but plan to not play in tournaments. I am trying not to wallow in the idea that ultimate is one more thing that narcolepsy has cost me. I don't want to "quit," but I do think it is unrealistic of me to expect that I will be in any kind of condition to play well and consistently for extended periods right now. I just don't have that level of fitness. AND, I am not disciplined enough to control myself at a practice or tournament. I WILL play when I shouldn't - I always have. And, as a result, I will make myself ill. I still will have the conversations with people, but I need to be good to me. Hopefully, making a decision like this will also motivate me to create the space for exercise and yoga.

The final rotten thing about this weekend is that I haven't done much at home either. It is one thing to miss the tournament if I am being productive at home. It is another thing to know that much of the crap looming in my mind is still there, AND I am not having fun cheering on my teammates. But, pushing now will mean prolonged health issues. I just need to keep taking one step at a time. I can't finish everything at once - ever! There will always be work and there will always be more to do. I need to rest and get healthy. That way, I can exercise wisely and begin to build strength.

Therapy Thoughts

I had a great session of therapy this morning. One of the best moments came when I realized how often I allow the external to dictate my mood. I have known that for years, but the stunning realization was that I rarely, if ever, actively seek to make situations work for me. When things begin to go wrong, I simply push ahead and cope. Rather than stepping back and factoring my own well-being into the equation, I prioritize everything else ahead of myself. In fact, I doubt I even consider what the impact of the situation might eventually be on me.

The "aha" came as my therapist and I were discussing my meltdown in the car a week ago Saturday (my lovely moment in Maple Grove - aka Hell). At any point, I could have stopped my car, gotten out, and let off steam by walking around. I didn't though. I just kept pushing forward, sinking lower and lower into my frustration. In hindsight, it seems so obvious to take care of myself, but I lose sight of me in those moments (actually, I do that in most moments).

Even more fascinating is that I was already in a desperate place when I left the house on that Saturday. I had had a rotten morning and was late. While I tried to remain calm in the car, I was horribly on edge. Arriving at the meeting to find no one there, certainly added to negative spiral. In all of that, though, I never once thought about doing something for me - other than my ineffective (at that moment) self-talk. What I need to do is find a set of options that I can use when everything starts to crumble, particularly at the outset - rather than during the nervous breakdown in the parking lot of some putrid strip mall, during Sidewalk Spending Spree Special!

I also know that much of my angst and anxiety in those moments comes from trying to control the uncontrollable. The Serenity Prayer definitely needs to become a primary resource in my toolbox. But, the reality is that using a guided mediation or doing yoga for 10-15 minutes or even reading something like Thich Nhat Hanh will help me let go in amazingly tangible ways. I also can make phone calls, but I definitely think that active engagement internally is something that I need to explore. My therapist offered the thought that I might rely on my extroverted nature too much to "help" my mood. I think she is right. Using meditative techniques to provide internal ballast will give me greater strength when things continue to go wrong externally. My Maple Grove moment even provides an example of that. After I finally escaped from the parking lot, I called my wife - the greatest source of support in my life. Hearing her voice bought me tremendous peace...until I realized that the gas option I thought I could use would not work. That might have been the most dangerous moment for me. Things seemed to be getting better, but another disappointment drained every ounce of hope from me.

I know that many dark days remain ahead, but I am intruiged and excited about this new insight. I already wanted to start doing yoga again - I know I need it. Now, though, I have even more incentive (always a good thing with me). I need to restart yoga and regularize my day to practice balance with mediations and breathing exercises. The goal is to find a schedule structure for the day - one that lets me stay on an even keel while helping in the house AND taking care of myself. I believe more than ever that I can get there.

Annoyance of Adulthood

Generally, I love being a "grown up." My wife and I have a good income, and we own our home. My age allows me to have a level of authority. Store clerks rarely look askance at my presence in their stores, unlike my younger days when they thought I might be a troublemaker or shoplifter. Certainly, I enjoy the privilege of enfranchisement, and although I don't drink, I like that I can purchase a bottle of wine for my wife or a friend. I even like that being an adult makes me less concerned about the anti-depressants that I take. The bad thing, though, is the feelings of responsibility that seem to accompany this stage of life.

Both my narcolepsy and my age continue to cause me to recognize more limits in my life. The latest came yesterday. I am in the midst of teaching my second class at MITY - The Enemy Gate is Down: The Stories of Ender, Bean & You. The class focuses on the Ender and Bean series of books from Orson Scott Card. I adore the books and LOVE teaching the class. The problem is that I simply don't have the energy to go all day any more. Even more frustrating is that I also need to start planning for my course at my school. Thus, my team has had two meetings already this week. We have a third tonight. I am thrilled and excited to work with them. I know it will be fantastic. I even find these summer meetings incredible. But, between MITY and the evening meetings, I went from 7:30 AM to 9+ PM the first two nights this week. THEN, I worked more on my MITY course. That will be my schedule again tonight.

I know now that teaching this Session B course was a mistake. Again, I love doing it, but I physically can't. Making the decision to only do Session A next year is the "right" one, but I hate it. I get so much out of working in this program, but it is irresponsible of me to do it because as much as I enjoy the work, I know the course could be better and that I am dropping the ball on everything at home and that I have no energy for anything but the course and that I will need a week or two (maybe more to recover). While some of those issues impact others (mostly my wife and daughter), I am more concerned about how much they impact me. Yes, I do wish that I could still function well enough to appreciate the joy of MITY, but I don't. The negative emotions are definitely outweighing the positive.

The bigger (and more immediate) "grown up" negative, though, has been my lack of ultimate. The sport has always been a vital part of my "balance," especially in the summer. Unfortunately, both my Session A and Session B courses and the narcolepsy have prevented me from making any practices for a month. I had hoped the slower pace of my second class would let me get to practice this week, but I realized Wednesday morning that if I did go to practice that night, it would mean FOUR days in a row (counting today) that I would be in high gear from 7:30 AM to 9+ PM. That is not just foolish - it is bordering on dangerous. I dragged my body out of bed this morning even without the physical exercise. My knees have also regressed in the last month because I have been putting literally 95% of my energy into my MITY courses. What little is left, I have tried to give to my wife and daughter. I honestly have no time or strength to do the PT exercises that I learned. Thus, practicing for ultimate becomes dangerous at another level.

All of this lead me to the highly responsible decision to not go to Wednesday practice, and I already told the captains that I would miss next Wednesday too. But, it makes me so sad. I NEED to have ultimate and my team in my life. They are a vital component of my sanity, but my "adultness" knows that at least this year, my commitments must take precedence. I agreed to teach this second class, thus I MUST be here every day. And, I MUST be prepared for it. Also, I MUST meet with my team for the next school year. That is not an option. We all have crazy summers, and the times this week were in the handful of dates that we could meet. There is NO WAY that I am willing to sacrifice that needed time.

So, some of my frustration is a result of things out of my control. Another piece is the result of my own inability to prioritize myself over the needs of others - that is neither good nor bad, it just is. I just wish it didn't hurt so much having to chose between so many things that I care about. One of the worst elements of narcolepsy is that I not only fear that I will have to give up other important things to me, but also that I already have had to give up vital pieces of myself and am well aware that my fear is actually my reality. I have to accept that. In fact, as I wrestled with missing more practice yesterday, the thought again crept into my head that I might have to give up ultimate, at least from a competitive club perspective. Honestly, how can I justify 1 or 2 three hour practices each week and three to five full weekends of time commitment throughout the summer and fall when I can barely do my part-time job and be present for my wife and daughter? I truly don't know. Am I being selfish? Or foolish? Or smart? Is what I get from playing with my team enough to counteract what it costs me in energy and emotional stability when I feel guilty for not doing more for my family?

Being an adult is a good thing, but it comes with a heavy price. So often as a child, I could afford to have my self-interests guide everything I did. I can't do that now. I am married and have a daughter and love my job and have a chronic illness. All of that means that I must prioritize and choose and eliminate. What is important to me? What do I need? Some days, those questions are easy, but often they are extremely hard. And, this awful condition means that I get to keep trying to cutting away at who and what I am. That is the reality. As much as my meds "help," they do not and cannot "cure" this. They make me functional in a limited way. I can still summon tremendous energy in limited windows of time. I can still be an excellent teacher because I feed off others as an extrovert, but pushing well beyond my boundaries costs me. Thus, the burden rests with me to decide what I should and should not do. It can't be any other way, but I also do not have to like it. And, I don't.

Missing Mother Nature

My wife, daughter and I are in northwestern Minnesota, staying with some wonderful friends. Today's plan was to head to Itasca State Park and do some biking. We could not have picked a better day! The sun was beautiful, the temperature stayed in a wonderful range, and the whole group had a fantastic time. Our friends have two boys, one a year older than our daughter and one a year younger. They all get along well, and today all of them held their own biking for close to six miles. Add to that the decent hills we all had to climb at times, and I admit that they impressed me. We made a great stop for lunch at Douglas Lodge, a beautiful historical site in the park. I HIGHLY recommend the Wild Rice Salad - it was delicious. We then biked the nearly six miles back, let the kids swim and even watch the children (and my wife) build a wonderful sand castle.

The entire day has served as a reminder to me that I need to get outside more. So often, I cut myself off from everything as a result of the narcolepsy. Fearing that I will push too hard or that I will wear myself out quickly, I avoid doing "extra" things. I LOVE hiking and biking through beautiful parks, yet I rarely do that any more. Certainly, some of that is the result of making other choices, which I often enjoy, but I do turn down plenty of chances simply because I am afraid. I definitely know that I don't like explaining how the narcolepsy tires me. I also dislike the feeling that I am a burden to others because I get so wiped out. Rather than risk those things, I often look for ways to back out (or simply decline the invitation in the first place).

In fact, I almost did it today. Some small part of me wanted to just stay at our friends' home while everyone else went biking. Fortunately, that voice was tiny. What was not minuscule was the voice screaming at me when something went wrong with my bike upon our arrival at the park. The stem of my rear tire ripped out. Worse, it was likely my fault. My wife was trying to inflate the tire and I am positive I told her the wrong way to do it. Nonetheless, my entire rear tire was flat and beyond repair. My immediate reaction was to bail on the ride. I honestly told everyone to go. Our friends then let us know that there was a bike rental and repair place at the next stop on the park drive. I did convince everyone to get started and told them that I would deal with the tire and go from there.

Yes, part of me still wanted to scrap the whole thing, but I mustered my courage and drove to the bike place. It was even closer than they thought. I still felt horribly sheepish, because I needed help (yes, I know that is foolish, but I am who I am). As I turned to look for a parking spot, I noticed that everyone else was waiting at the bike shop. I was furious, mostly because I was already dealing with it, but also because I still didn't want to be a burden. I eventually found parking and figured they had headed out. As I carried my bike toward the shop, I saw my daughter and wife and nearly melted down. I figured they had decided to wait for me and sent our friends ahead. The pressure of the entire situation came close to consuming me.

My interaction with my wife was more than tense and all due to me. It turns out the husband, when he realized that the bike shop was so close, figured he could get back to fix the tire before I left the other lot. I tried to apologize to my wife, but we both needed time (I did approach her a few more times throughout the day and all is well). The husband soon returned from his jaunt to the other lot. While my ego and energy were in tatters, I did accept the help. He fixed it in a matter of minutes. Then, we all set off for our excellent day.

While I certainly wish that none of the problems had happened, I am also grateful that they did. I need to learn how to accept help. I need to let others do things for me. Beyond that, I must recognize that sending everyone else ahead without me is not being brave and thoughtful. It is being selfish and cowardly. My family and our friends would have been worried about me and certainly would have missed me the entire time. By letting our friend help me, I allowed this excellent day to happen. If I had been wise enough to do it immediately, my wife and I would not have need me to apologize repeatedly. I do hope that old dogs can learn new tricks because I honestly want to do that. The best thing in all of this is that I not only opened myself to help, I remained open to enjoying the day. Certainly, I am tired and the narcolepsy crept in a times during the ride and the lunch, but I would have deeply regreted missing this day.

Schedule Struggles

I wonder if my amazement for the ins and outs of narcolepsy will always remain this high. Regularly, I lose track of time. I have written about it before - a few times. So, how can I be stunned when it is suddenly 3 PM and I am late for acupuncture. I entered our home office at Noon. I was putting financial information into the computer. I plodded along and even chatted occasionally with my daughter when she entered. Then, while getting something off the printer, I noticed that the computer had the time at 2:56. Honestly, my reaction was disbelief.

I made it to acupuncture and got treated and even got out close to the time I would have if I had been on time - much of that has to do with the wonders of my acupuncturist and the high quality of service at Langford Chiropractic. I even manage to stop berating myself in the car since I clearly am not in control when it comes to the passing of time. But, I am unnerved that the loss of those three hours shocked me. It shouldn't, but it did. Just one more piece of the coping puzzle. I wouldn't be me if I didn't have such unrealistic expectations, and while I might not like that such delusions stick around, I need to embrace them, just as I do my narcolepsy - yippee!

The other element that made the car ride tough was the flood of other items that had also been on the "to do" list today. Again, I handled it better than I have, realizing that the three hours did get much needed things done, but the other issues still ate at me because they are important too. One clear message in all of the chaos, though, is the need for me (with help) to create a rough schedule for my day. It was a goal at the start of the summer and remains one, MITY makes life hard, and today was honestly the first low key day I have had since school let out. Still, I know myself well enough that I will let the entire summer drift away unless I ask for help in making this framework idea a priority.

I need time for the following: yoga, exercise, family, work, housework, my wife, and relaxation. Even as I type it, I get tense because I am already trying to count the minutes and hours in my head. Invariably, my conclusion is that I don't have enough room for all of it. But, I need to find the way to balance those things in the time that I do have. Clearly, I need to prioritize the list too - which things should be daily, which can alternate, which are truly flexible, which must be rigid habits. Off the top of my head, the dailies are my wife, family, yoga, and work. Even within that, only my wife and daughter are non-negotiable. Interestingly enough, they tend to be the two on the list that DO get cut short right now.

As for everything else, I struggle with the ideas of how much, too much and when. That is another reason that I need outside input. Getting others to help me construct the structure is important, but equally vital is having outsiders who will assist me in adhering to the schedule. I also must acknowledge that one of my most compulsive tendencies is an over awareness of time. When I write in this blog, "that the computer had the time at 2:56," it is not necessarily for dramatic or creative effect. My brain grabs on to the exact time and locks it away. It then watches the car clock every inch of the way and frets at every red light. How cool is anxiety, huh? And, my brain does that on 20 mg of fluoxetin. Yeah, it's fun! Again, it is a piece of me and I must integrate it. But, it makes creating a "loose" schedule dangerous for me. Because I can become obsessive about time, I run the risk of having this helpful tool mutate into a destructive one. That is another reason for the outside assistance. Perspective is a great thing.

Getting a schedule into practice is the second goal I am setting tonight. I have another round of MITY starting next Monday, so I will allow myself until July 21 to get all of the pieces in place, but I also need to build it a bit at a time - or I will fail. I also know that I need to spend more time writing about time. Clearly, I have something happening there that needs to be brought into the light. In the end, though, these are all just steps and none of them will be the magic fix. Each thing I do is within the breadth and width of my narcolepsy. I am certainly more than my condition, but I am subject to its whims - even if I do get my schedule groove on.