Wrung out, but Writing

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

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

Fabulous Friends

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

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

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

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

Wild (wonderful) Week

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

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

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

Searching for Sleep

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

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

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

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

Running Ragged

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

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

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

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

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

Nasal Nightmare

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

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

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

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

Stunning Start

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

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

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

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

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

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

Suddenly Sunny

I awoke this morning with a bit more spring in my step. I am still exhausted, and I need to work on balance, but the world seems brighter today. It doesn't hurt that the sun is out in Duluth today, but the bigger reason is that once again fellow people with narcolepsy have lifted my spirits. Last night, we went to see my mother and my grandmother. It was good to spend time with them, but everyone is also struggling. My grandmother's health has both of them concerned and on edge. Thus, my stress level was higher when we returned to the hotel around 9 PM. Fortunately, I remember that a friend of mine that I met through the Narcolepsy Network had planned to chat with me on Yahoo Messenger. Sure enough, she was there, but soon others joined us.

The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.

Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.

Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.

Friday Fury

I long for the day that I will be "ready" for a day. My sister, my daughter, my brother-in-law, and I were scheduled to leave at Noon today. We are spending Easter weekend in Duluth, hoping to see my grandmother and my mother (who is in town to help care for her). Even though we had a plan, I wound up derailing it for a time. Everything was fine, but it bothered me that my inability to get things done, or to garner any energy, forced others to wait. The true "problem" began on Thursday.

Invariably, I ran myself ragged yesterday. I did enjoy my abbreviated massage, and the chiropractor helped. After that, though, I headed to the University of Minnesota. My wife and I had a fun (but dorky) date. We met at her office to attend Grand Rounds. Dr. Mike Osterholm was speaking about influenza pandemics. It was incredible, but going to that meant that other things did not get done. I did rest at home for a time, but then I had to get my daughter. After that, I tried to do some cleaning around the house. Things look worse now, but my wife seemed to think that it was progress. After working for an hour and a half, I had to head to my daughter's school for a three-hour meeting. I got home at 10:30 PM. Needless to say, I had no energy for any more cleaning, or for packing.

Then, when I woke up this morning, I spent an hour and a half getting work done for the previous night's meeting. I did do some additional organizing of computer files (and dumping of files to clean out my laptop), but I was not ready to leave until nearly 1 PM. Again, it was not a huge problem, but I feel such internal pressure in those situations. I abhor inconveniencing others. Fortunately, I held things together. We arrived in Duluth around 3:30 PM, which was actually perfect. I just hope that I can let myself relax over the next few days. I remain vulnerable to my internal messages about doing more and unachieving.

These are the narcolepsy moments that I truly dread. I am doing "fun" things, but the energy required for them also drains me. The balance of living with this condition is often maddening. I am grateful that my wife and daughter remain understanding. I need to keep working on giving myself more of a break when I am in the midst of energy struggles like I am having this week. The one other tough part, though, is that my wife is out of town from tomorrow until next Saturday. Thus, I will get home on Sunday with professional work that needs to be done, volunteer work that needs to be done, and housework that needs to be done. I will face all of that as a solo parent and as a run down person with narcolepsy. It will be fine, and I will get done what I can, how I can, but I need to remember that I am doing a decent job, even if things turn out mediocre at best. In the end, I need to remember to breathe, while I handle each thing one step at a time.

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.

Washed out Wednesday

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

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

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

Tuesday Travel

I head home today. I always find it fascinating that no matter how much I enjoy traveling, heading home is also exciting. Even though I was with my wife all weekend, I missed being with her the last two days. I also have missed my wonderful daughter. Knowing that I will see them both later today excites me to no end! I also enjoy the "process" of traveling.

While being at the whim of a transportation company can drive many people up a wall, I actually enjoy it. I know that some of that is my acceptance of narcolepsy. In the same way that I can't control the way my body responds on any given day, I also have no power over the functioning (or non-functioning) of a plane or train or bus. As a result, I am able to let go and simply accept what comes. It has taken a long time to reach that place. I used to be furious when trying to go somewhere if things went awry. But, it is one benefit of chronic illness - I daily have to face "things" not going the way I want them too. If I tried to fight every one of them, I would be insane by now.

Even yesterday was a great example. A dear friend and I planned to meet for dinner. Since I am in Maryland and can avail myself of decent public transportation, I took the Metro red line to meet him. I knew the trip would take 45 minutes, but that was fine. I was not inconveniencing the friends putting me up, and I could enjoy the ride. The Metro went well, and I arrived in White Flint with time to spare. The troubles began when I walked out of the Metro station. I seem to have a knack for always guessing the wrong way to go. I was meeting my friend at the White Flint Mall, but walked in the opposite direction. When I eventually arrived back at my starting point, I again chose poorly, but did manage to find the mall while working my way back to the start once again. In total I walked for an hour, probably covered at least 3 miles, wasted most of the energy that I had, and was a half-hour late in meeting my friend. While I was definitely frustrated, I did keep both my self-loathing and my ire at the lack of signage in check. I even found a book for which I had been searching. Even better, I bought it at Barnes & Noble rather than the Border's in the White Flint Mall. I do like Border's, but they had irritated me of late because they did not have this book when they promised that they would. Had I not done all of that walking, I might purchased the book at Border's instead (which would have bothered me), or worse, I might not have found it at all because maybe the White Flint Mall Border's also would have let me down.

I proceeded to have a fun night with my friend. He then drove me back to the place I am staying. That was good both because we got a chance to talk even more and because I don't know if I would have been alert enough on the Metro to get off at the correct stop on the way back. Gotta love narcolepsy, huh? Bottom line, I know that I need to appreciate the blessings and gifts that do come my way, even as I accept the hiccups and disruptions that accompany the good. Nothing is perfect, nor will anything ever be. But, I have so many blessings, and for that I am grateful. My constant sleepiness will be a bane for the rest of my life. I can't change that, but by accepting it (like the delays that may happen as I travel home today) my life will be a much saner and much better experience.

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.