Category Archives: Humility

Fatiguing Fight

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

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

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

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



Filed under Balance, Depression, Driving, Exhaustion, Frustration, Gratitude, Honesty, Humility, Insights, Narcolepsy

Xyrem Zaniness (although it is an "X" and a "Z" the sounds alliterate)

>One of the best (and weirdest) drugs for most people with narcolepsy is Xyrem (zi-rem). We take the drug at night to allow us a much more restful sleep. It seems odd that a person with narcolepsy would need a drug to sleep well, but the reality is that we are chronically sleepy because we rarely get deep (stage 3, formerly stage 3/4) sleep. What the Xyrem does is knock us out for a short period of time 3-5 hours tops. Thus, most people with narcolepsy take Xyrem in two doses, meaning that we literally wake up in the middle of the night to take a medicine to help us sleep better. If that seems insane, you are getting a good idea of how bizarre this condition is. It is also important to note that Xyrem does not work well for all PWNs. In fact, some PWNs have horrid reactions to Xyrem. Also, others find it far more effective to take their Xyrem in three doses. The reason that Xyrem is “better” for many, though, is that its short acting nature does not add to the normal sleepiness that PWNs experience, unlike most sleeping pills.

I am a two dose PWN. Usually, the Xyrem works decently, but I definitely still need my stimulant to function during the day. But, I am far more balanced and significantly healthier because of the Xyrem. That said, Xyrem does not always work for me. Some nights, I am actually able to “fight” the Xyrem, particularly if I have been active later in the evening or if I am anxious about something for work and am trying to complete it. The result of that is my wife (and a handful of others) have gotten to see what I would be like if I drank (I am a no alcohol guy, even before my narcolepsy). While I have outlasted an entire first dose of Xyrem once or twice, more often I wind up sitting in bed trying to finish something, but unable to even form a thought. Eventually, I stumble around for a bit and then go to sleep. Even worse, I apparently am a happy drunk, which would be cute for my wife were it not Midnight.

The other problem, though, is that I am also periodically go through phases when the Xyrem hits my more heavily than it does at other times. On those nights, I struggle to make it to the bathroom in the middle of the night to urinate and then to get back into bed. Once, I am positive that I stood in our hallway for 30 or 40 minutes because I was incapable of walking the final five feet to our bedroom. Often, my wife will wake up during these episodes because I am swearing at myself (rather humorously) in the bathroom, essentially trying to convince myself to get back into bed. On those nights, she comes to rescue me by taking my hand and leading me to the bed. A few days ago, she did that and then had to deal with the giddy, silly routine. She was thrilled.

So, last night, I had one of my worst Xyrem nights ever. I had no intention of fighting the Xyrem. I knew that I was overtired and need to get to bed. Unfortunately, I thought I could get my iPod hooked up to our computer first and have it charged for the morning. I did get the iPod connected, but must have faded soon after that. It was 10:30 PM when I was hooking up the iPod, but I did not get back to our bedroom until Midnight. Somehow, it took me an hour and a half to cover 15-20 feet. Actually, I think I fell asleep in chair in our office. Then, I got up at some point in the night – I think it was round 1:30 AM. I struggled mightily to stay steady in the bathroom. Eventually, I sat down on the edge of our tub, but then I nearly fell into the tub. I decided that the safest thing would be to sit on the floor. I am fairly sure that I then slept for the next two hour on our bathroom floor. When I finally got back in bed around 4 AM, I felt horrid. I did manage to exercise and do yoga this morning, but I definitely felt off. The situation did not completely sink in until I had my monthly massage this afternoon. I neck and shoulders were horribly tense. In fact, my incredibly strong massage therapist had to use some metal tool on my neck in spots because the muscles would not release. She and I had a good laugh when I told here about my two hours on the floor. She then advised me not to do that again.

I certainly have no intention of making a regular habit of last night’s performance, but I also know that anything can happen. While I am chagrined about my little adventure, I am also proud of myself because I am laughing about it. In the past, I am sure that I would have been too ashamed of the situation. The reality, though, is that Xyrem nights like last night are just one more piece of the crazy tapestry that is life with narcolepsy.


Filed under Confusion, Exhaustion, Family, Healing, Honesty, Humility, Humor, Insights, Marriage, Medication, Narcolepsy, Xyrem

Foolish and Frustrating Fourth

>What a difference a day makes! I knew that I would pay a price for staying yesterday (and for not worrying about the energy that I was expending), but I had no idea that level, extent, or immediacy that the payback would affect my entire family. Narcolepsy reared its ugly head and brought along some other friends as soon as my day began today. We all got up slowly because we had gotten home so late. At the same time, I knew that my wife desperately wanted to get us all to Church – we have missed Mass far too often of late. Even though my body had NO interesting in getting going, I was determined to get moving so we could get to Mass.

Our daughter was far less enthusiastic about the prospect of Mass, but she did hope into the shower after my wife’s quick shower. Unfortunately, my daughter stayed in the shower until minutes before our agreed upon departure time. My wife, who was rightfully cranky given our late night and the horrid traffic on the way home, let us both know that she was frustrated that we were likely not leaving at the agreed upon time. Hoping to mitigate the situation, I decided to forgo a shower (since there was NO way I could take one and have us leave on time), but I also resented that fact and that my daughter was not being respectful of the time or my wife. Nonetheless, we were ready to go at 9:35 AM which had been the agreement. Unfortunately, I could hear my daughter and my wife still exchanging comments before I even left the house. Since I was already frustrated and upset, their fighting only exacerbated my own angst, but I knew that my wife needed me to stay “upbeat” so I stuffed those emotions too.

My daughter continued to push my wife, even after my wife said the discussion was over. As a result, we had gone now more that a quarter of a mile and were sitting at a stop light. My wife then chose to mutter more negative and general comments under her breathe. I, of course, heard them. I had already been fighting the urge to scold my daughter for her behavior, and the reality is that I had not wanted to go to church in the first place. In fact, I was struggling to understand how we could be on our way to church when we were clearly being extremely UNchristian to each other. Finally, my fury over the fact that we had stayed late because of my daughter (which she had already forgotten) boiled over. Rather than blow up in the car (and make things worse), I got out of the car and said that I was going home. Of course, that action only served to make things worse, particularly for my wife, who was already feeling unsupported and disrespected. By the time I had gone a block and a half, my wife had turned around and had returned to get me. Her tone and behavior told me that she was not going to let me walk home, so I got back in the car.

We were then silent all the way to Mass. My nerves were a tad frayed because my wife’s driving was a bit aggressive, but I was also furious because I did not want to be there and because my daughter’s behavior had been at the core of much of this, yet she was oblivious to that (as she should be at age twelve). As my wife shut off the car, she asked us to go into the church without her. I said, “No.” She then told me she needed the time, and I still declined because, “I am only here because you want me here.” The statement was true, but was not fair to my wife. I also realized later that a deeper concern was also behind the response. I was worried both about what my wife might do (she was horribly upset) and what I might say to my daughter.

I have struggled a great deal in the last few years with how to talk to my daughter, particularly when it involves my narcolepsy. She has actually told me, twice, that I use my narcolepsy as an excuse. She, of course, has NO idea how hurtful that comment is, but my mind reels at what might have happened had I gone towards church with my daughter, but without my wife. If I had tried to talk to our daughter about how her behavior (and ours) had led to the fight, particularly the fact that we had stayed so late because our daughter was bent out of shape when we tried to leave at a reasonable time, I know that she would have lashed out at me. Given where I was at, I have no doubt that awful things would have ensued.

Fortunately, Mass was wonderful, as it so often is. Both my wife and I noted that the opening song was all about forgiveness. We did have a long conversation when we got home. At one level, all is forgiven, but the tenor of the conversation also impacted me in another way. Clearly, I hurt my wife today, and she hurt me. We also need to do a better job of helping our daughter understand our expectations of her and of her comments to us. But, we have been trying to do that. My wife and I both know that we need to do “more,” but neither of us knows where we will find that “more.” Certainly, we will work through our fights and forgive each other and our daughter. That does not change the reality that sitting in the middle of all of this is the narcolepsy. My wife DOES do more of the housework and planning. She is already tapped out by full-time work, ful-time parenting, and full-time partnering. I, too, am doing my best, but I have a chronic condition that limits my abilities. If I put too much into my work, everything else suffers. If I neglect myself, everything else suffers. If I dote on my wife or daughter, everything else suffers. Such is the nature of a chronic condition.

The deepest lesson out of today is to continue to let go. I control little of what happens in my life. Bad days come, sometimes sooner, sometimes later. I knew that having fun yesterday would exact a cost, but I was unprepared to face it when it arrived because I didn’t think it would come like this. I need to be more honest with myself and my wife. I should have voiced my concerns about church the moment we got up. Even better though, I should have helped my wife figure out what might or might not happen if we stayed late yesterday. Better still, would have been for all three of us to agree to a plan well before the Fourth of July ever arrived. By doing that, we would have all had clear understandings of how the day would play out. What I con’t do is let a day like today cause me to only worry about what might come. I also need to keep pushing myself to enjoy the moment. I think my realization of that is progress in and of itself. I have no doubt that if something like this would have happened even a year ago that I would have sworn that I would never stay out past ten PM. That is, of course, unreasonable and irrational, but it tends to be my baseline reaction to “mistakes.” I have made numerous mistakes in the last two days. I need to own them, ask for forgiveness, forgive myself, and appreciate the good things that happened in between my errors. I am not “feeling” that yet, but at least I “know” that it is a far more appropriate response. Hopefully, I will continue to learn as my journey continues with my narcolepsy in tow.

Today, though, that attitude is hard to maintain. I am wiped out in general, and then I got way off my current sleep schedule and spent tremendous amounts of energy wrestling with my thoughts and emotions today. Things will get better, but I feel like I am once again muddling through a Sunday, barely doing anything productive, and wondering how I will find a decent groove to be healthy and mildly productive in my life while not grossly upsetting my wife and daughter on a frequent basis. I deeply dislikes days like this!

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Filed under Depression, Emotions, Exhaustion, Faith, Family, Fear, Frustration, Honesty, Humility, Loss, Marriage, Narcolepsy, Parenting, Rage, Sharing, Stupidity, Wisdom

>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.

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Filed under Exercise, Exhaustion, Family, Frustration, Honesty, Humility, Illness, Loss, Marriage, Narcolepsy, Parenting, Relationships

>Whacky Wednesday

>As much as I am getting used to time racing forward, I still find myself stunned when the opposite happens. Days when I feel like I live a week in a few short hours completely unnerve me. Today definitely fell into that category. At school today, we held a “founders” celebration for the two religious orders that started our school. I also felt like I was constantly on the go during the entire day, conversing with a colleague during my first prep, planning three things at once during our team session, attempting to organize ideas and thoughts during my second prep, processing racism and its impact with students throughout the day, assisting a few students during their homeroom time, reviewing the work of my independent study student during my lunch, and finally delving into more ideas and angst in our other class. Then, I went to lead my daughter’s Poetry Club. I finished out the day by running a number of errands.

I honestly struggle to accept that our “founders” breakfast was THIS morning. Invariably, I was (and am) exhausted. And, the craziest part is that, even though I accomplished a vast number of things today, part of my brain truly believes that I should have done more. I have so many stray “unfinished” tasks, but it would be impossible to accomplish them. Not just in one day, but in a lifetime. I must work to accept that reality – my brain will never be “satisfied.” It is simply the truth of my situation. Hopefully, my awareness, and ensuing actions, will keep the madness and anxiety at bay.

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Filed under Balance, Exhaustion, Honesty, Humility, Narcolepsy, Wisdom

>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.

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Filed under Exhaustion, Frustration, Gratitude, Healing, Honesty, Humility, Narcolepsy

>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.

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Filed under Confusion, Exhaustion, Family, Frustration, Humility, Narcolepsy, Scheduling, Travel