>How in the world is today September 30?!? I find it fascinating how time is relative. Moments in my day felt like they might last an eternity, but this month flew by in mere seconds. It is crazy. And, invariably, narcolepsy only exacerbates all of it. I woke up this morning feeling like I had been hit by a truck. I don’t know when or how I woke up, but somehow by the middle of my first period of teaching, I was frantically creating handouts for my students, as well as their websites for our new projects. It feels surreal at times.
When the school day ended, I managed to blank out that I had a doctor’s appointment. Fortunately, I still left the building with just enough time to get my daughter, bring her home and then return to my allergist’s office. I then dashed home, ate dinner and got things together for my daughter’s volleyball practice. The next thing I knew, I was home again, trying to get some work done before I climbed into bed for the night. The plan was to be in bed by 10 PM, because I need to get back into my routine. Sadly, it is now 10:30 PM, and I am still doing things. Why? I wish I knew. Another crazy narcolepsy quirk is that some of us tend to become MORE awake in the evening hours. Insane!
I am struggling to comprehend how October 1st is tomorrow. I have been teaching for over five weeks already. A piece of me still feels like it is summer, yet another can’t think of a time when I did not know my current students. Much of this is “normal” for a school year in general. I just know that my narcolepsy adds bizarre wrinkles to my reality. While I do not have the automatic behavior nearly as often as I did two years ago, I feel like I was close to that today. It scares me that even with a LOT of stimulant in my body that I can still have a day that gives me pause, especially when it comes to driving. I do think that I was safe today, but I was only a notch or two above my “no driving” threshold.
Clearly, I am still in a lull in terms of energy. I also believe that the stress of our first “real exam” in my courses has impacted me. I have a number of nervous students and parents, thus I am working harder. Finally, I know that I am distracted because I am excited for the conference this weekend. How could I not be? An entire weekend of hanging out with other people with narcolepsy? Seriously? It will be amazing. But, I need to stay present with today, not dream about two days from now. I must get my body into bed. NOW!
>I certainly understand that my narcolepsy ebbs and flows. Good days come and go. Bad days arrive and depart. Unfortunately, my current string of bad days seems to be settling in for the long haul. I go through spells when I struggle to find any level of focus. The last two weeks are a prime example. I can get through my days and even do some small tasks, but bringing my mental energy to bear on the things that I need to do proves to be nearly impossible. I work hard not to beat myself up when this happens, but I am approaching the end of my limits. Of course, getting angry and upset with myself will only cause me to spiral lower, so I need to find a way to pull out of this.
The largest concern is that I am not providing any assistance to my wife. I have done a little laundry and washed a few loads of dishes, but most days I have come home from work (or some other activity) and collapsed. Today, I got up early to meet with teaching team. We did get some planning done, but I don’t even feel like I contributed much there. When I got home, I did a little work, but felt dizzy the entire time. I have been sitting on my butt since Noon. I can barely even focus on doing things I enjoy, like corresponding with other people with narcolepsy or writing this blog entry.
Almost as upsetting as letting down my wife is the growing pile of school work that I MUST get corrected soon. I know that I can only do so much, but for the last week, I have done literally nothing. My plan when I finish this blog is to stretch and then start on some of my school work. But, I have little to no faith that I will get through much. I hope that I am wrong, but my brain simply will not click into gear. Moments like this are some of the hardest for me. I still find it hard to believe MYSELF when I realize that I can’t get work done. The words to describe it sound ridiculous – “my brain won’t work.” That sounds insane. And, if I struggle to believe it, how is the rest of the world supposed to react? It is no wonder that many people believe that people with narcolepsy are just horrible lazy. I know that is not the case, but hate that I partial feel that way myself. Seriously, my brain just can’t hold a thought! – Who says things like that?
As frustrating as this is, it does help to write about it. I don’t know if it will change things, but it makes me feel better. I also know that I need to sit for a time and breathe. Relaxing will make it easier to start. I will do what I can, and then I will go to my men’s group. That will also help. I just wish this particular down time would not be lasting more than a fortnight!
>Once more into the breech, dear friends, once more. Taking my sanity into my own hands, I ventured forth today, returning to the nightmare of Maple Grove’s shopping insanity. Wisely, I brought back up, another MOONS group member who lives in Saint Paul. The sky loomed ominously of my car during the entire trip, but I had no fear. My gas tank was full and my faith high. We arrived at the Elm Creek Blvd Starbucks, knowing full well that it was THE ONLY one on that stretch of road. Almost immediately, we spotted friendly faces. Turns out, MOONS was having a planning meeting!
The afternoon was fantastic. We certainly got sidetracked at times, but people with narcolepsy should be allowed some latitude. Plus, it was wonderful to have only a handful of us with Dr. Rogers. She is wonderfully intelligent, and I can easily see why her patients in the group adore her. Often, a topic would come up, and Dr. Rogers was more than willing to share what she knew about that particular medication or treatment. Even more rewarding, though, was the collegiality among the MOONS member there. We can all see the potential of the group, and it felt awesome to lift some of the organizing weight from the shoulders of Dr. Rogers and Charlie. Those two have bent over backwards to get everything going. Now, some of us can provide assistance to help the group become even better.
Even though the next meeting is not until November 15, I am already excited. This group, along with the online resources that I have found, has been vital to my own acceptance of my narcolepsy. I feel such joy getting to know other people with narcolepsy. It is glorious. I feel blessed that I can have a chance to help others in the same way that I have been aided. I also know that my joy as stems from the reality that I will see some of my MOONS friends in less than a week. Milwaukee approaches rapidly, and I can not wait. We will theoretically have another MOONS planning meeting there because we will be doing some MOONS work at the hotel – making web site changes, working on the database, planning a group presentation for the next meeting. I love it!
I knew that today would be significantly better than my last trip to the madness of Maple Grove, but once again I am stunned by how incredible MOONS has left me. It truly is magical to be with a group of people who implicitly understand the bizarre frustrations of this disease. Nothing can compare to it. And to think, in less than a week, I will not be with a few other PWNs like I was today, or even the 30-40 PWNs that are at MOONS meetings. In Milwaukee, I will be with over 100 other people with narcolepsy. That boggles my mind!
Filed under Blessings, Emotions, Excitement, Gratitude, Heroes, Hope, MOONS, Narcolepsy, Relationships, Sharing, Support
>Few things are wilder in my life than the vagaries of narcolepsy. As I said yesterday, I am sure that I am still paying the price for my two weeks of insanity. Still, I had been feeling that I was handling things decently, given the “crash” I was experiencing. Then I got up today, or perhaps more accurately, I struggled upright today. One would assume that after crashing for five days, my energy would begin to improve. Sadly, one would be frighteningly wrong, at least she or he would be this week.
Somehow, resting and doing little last night made my MORE tired today. My head hurt for much of the day, and I felt rushed and overwhelmed. It didn’t help that I kept taking small hits all day – computer mix ups, school assignments not quite ready, students struggling on exams, appointments happening “sooner” than I could arrive, problems arising that I felt the need to address. I was more than spent by the time I got my daughter at 4:30 PM. That is when the day truly started to sour. She felt neglected yesterday in the aftermath of her team’s big win, mostly by me. And, no matter what I did or didn’t do, her perspective is the one that matters in that situation. I tried to discuss it with her on the way home, but might have made the situation worse. We then had more tense moments at home.
My wife’s arrival seemed to exacerbate the situation more. I had already used up even my deepest reserves, and she too felt dismissed by me. We managed to talk through some of the issues, but I still need to fight off my own internal attempts to shame and blame myself. My wife has had a long and busy week, and I am definitely struggling with my disease more than I have in the previous few weeks. Toss in our wonderful, but pre-teen daughter, and the season is ripe for a colossal disaster. Thankfully, we all managed to avert such a tragedy, but the potential always seems to simmer below the surface.
It makes me laugh that the ebb and flow of my condition never comes at opportune times. I think narcolepsy wants to keep me humble. My students are on retreat tomorrow. It will be good to have a day that is still “work,” but one which I can use to relax and meet with my team to plan out our next few weeks. The pace of the western world is relentless. I wish that was not the case, but I also know that I can only control my own actions. Thus, I will continue to work on accepting only one or two responsibilities. I just need to learn how to say, “No” on a regular basis.
>My goal daily is to live my life in a state of mindfulness. Given the nature of narcolepsy, I work to accept the world as it comes to me, rather than dwelling on missed opportunities or obsessing about impending events. Since I am naturally a worrier and second guesser, the goal is definitely a stretch goal for me. Even so, I am thrilled to report that I have been far more successful, thus far, at living in the moment than I ever believed that I could be. Many moments still fall into my old patterns, but far more do not. I get chills every time I recognize that grounded in the present. The current week has been a perfect example.
I know that I am “off” this week. That said, though, I have made it to work each day and been able to dialogue honestly with my peers and my students. Even cooler is that I have been attentive to my daughter even with a mountain of correcting looming over my head. On Monday I took her to her volleyball game. Our directions were wrong, but we still managed to be the first to arrive. Eventually, the entire team made it. The girls beat the other team soundly, but more importantly, I had a glorious night with my daughter. Last night, we were off to volleyball practice. Some girls missed practice so the coaches and I played against the girls. It totally wiped me out (and I am still feeling the effects today), but during the scrimmage and on the way home, my daughter and I simply chatted. My work load had increased that day, but I didn’t care. My daughter was at the center of my world. Finally, we had our last volleyball game (until next week) today. As had been the case all week, my correcting pile grew, but I was far more interested in watching my daughter’s game. They did drop the first game, but came back to win the second 27-25. The intensity was phenomenal, and the lead changed at least 14 times during the game. Finally, the girls overwhelmed the other team in the third match. My favorite highlight came on the last point of the game. My daughter’s team actually passed the ball so three people touched it. Cooler still was the head’s up move by one of my daughter’s teammates. This young woman played the ball off of the net and got it over. As the ball dropped to win the match, all of us (kids and parents) clapped and cheered. The best part remained that I focused my energy on my daughter instead of the multitude of unfinished assignments in my school bag.
I have no delusions that every week will go this well. I also know that my daughter might say something else about the last three days. But, as far as I can tell, I have had one of my best string of days, in terms of my ability to remain mindful. The reality is that I can’t control the past or the future, but I can learn to appreciate, enjoy and respect the joy and wonder happening in each second throughout the world around me. Doing that can only strengthen my relationship with my daughter and my wife. In fact the person who gets the most out of doing this is I.
Filed under Blessings, Family, Gratitude, Honesty, Hope, Humility, Insights, Joy, Narcolepsy, Parenting, Relationships, Wisdom
>Daily, I thank God for the blessings in my life. I need to do that so I don’t dwell on the frustrations of my narcolepsy. So much has been given to me that is denied to others (people with narcolepsy and those without it). I have an amazing wife, a wonderful daughter, dear friends, a good job and lots of support. Too often, those simple basics are withheld from others. In the many online narcolepsy forums that I visit, it saddens me when I learn of yet another person with narcolepsy who is neglected by family members, or worse chastened by them for being “lazy.” Because of my insane drive that pushed my body well beyond its limits for years, I rarely am confronted about my “lack of energy.” Even when I am, it is with a tone of grief, rather than one of disdain. Just today, another colleague asked if I would ever be able to return to full-time teaching. She looked genuinely sad when I said I would not. Even people who support me just can’t fathom that this condition doesn’t “get better.” I will always be TIRED; that is my reality.
My medications do mitigate the fatigue, but nothing can make it go away. My school year has been going significantly better than I can every remember. Thus, my mood is up, and I have a spring in my step. Those who don’t fully understand my condition immediately assume that I must be “feeling better.” While I am enjoying my job far more than I have in the last few years, I do NOT feel better. I am simply more at peace with feeling rotten. And, that situation is okay. I have a full life. As I stated above, my blessings are overflowing. I just need to get use to the look of pity in peer’s eyes when they learn that my narcolepsy is not lessening.
I also need to diminish the guilt I periodically feel when I read or hear the stories of other people with narcolepsy. No two people can ever honestly compare pain, and I do believe that God gives us no more than we can handle. That said, I get so sad when I see what others must endure at the hands of the disease that we share. So many have it far worse than I do – at least it seems that way to me. But, my guilt helps no one. Instead, I try to think of ways that I can be present for them. Often, that is a message or a kind word. Other times, words fail me, leading me to prayer. There is such power in connecting with other people with narcolepsy.
One more great thrill from the last few weeks has been my interactions with other people on the various narcolepsy forums. I know my heart beat quickens when I think of the national conference is only days away. I will be incredible. The weirdest part is knowing that the speakers will be incredible, but I just want to talk to other people with narcolepsy in a face-to-face setting.
I am sincerely grateful for this journey, every step of it. I want to embrace everything that is this world, including my health (highs and lows). Living and loving and laughing are the core priorities of my life. I look forward to seeing how it all turns out in the end.
>I do find it mildly amusing that I am still caught off guard when I crash. Even though the last two weeks have been insane, I actually wondering at times today why I was so tired. Seriously! I got upset with my inactivity around Noon today and began to get angry. I hadn’t done anything physical or mental, so I decided to castigate myself. My self-interrogation began with the stern question, “How can you be this tired?” Fortunately, saner parts of my mind prevailed at that moment. In the awkward pause that followed, I began to laugh. Why am I tired? Well, it could the psychotic hours that I have kept over the past two weeks.
The great thing is that, in my moment of realization, everything fell into place for the day. I was still exhausted and unproductive, but I found peace within it. Having that insight allowed me to be okay with the physical and emotional state of my body. I have had an unnerving two weeks. I pushed far harder than I should, and I even survived intact. I earned the right to collapse. I even rallied later in the day and had a wonderful evening with my daughter.
We went to an amazing show at my school. Every year the drama department hosts a 24-hour “Create-A-Play.” Students write, direct and perform short plays, all within a 24-hour period. The shows were wonderful, and my daughter loved them. She thoroughly enjoys performing and creating herself, so I could see the joy in her eyes as we watched my students. When we got home, I even managed to clean up the kitchen.
Every day, I feel like I take one more step down the path to understanding how to live with narcolepsy. I don’t think I will ever figure out every twist and turn along the way, but it does seem that the journey is a tad easier than it has been. Maybe the biggest accomplishment of the past year has been my ability to acknowledge my own needs and to accept them honestly. Even a few months ago, I would have wracked myself with guilt on a day like today (actually yesterday now). Rather than abuse myself, though, I owned the state of existence that I was in. Somewhere in there, I am sure that I got a bit wiser.