I find it fascinating that this blog is constantly on my mind, that I regularly have the desire to post to it, that I know spending time writing it often brings me piece, and that I still manage (knowing fully well all of the above) to go months without adding anything to it. I must confess, though, that I am also pleased to be at a point where realizations like that do not cause me to beat myself up. The truth is that, with narcolepsy, my time and energy are limited. I am proud that I have spent much of the last year and a half working to prioritize my wife and daughter and my own well-being over anything else in my life. Of course, numerous rough spots have happened in that same period of time, but I am even better at working my way through those moments.
I am also finding it easier to be at peace with my narcolepsy and to make time for myself because I have made good choices in terms of my work environment. In January 2013, our little family hit a major crisis point, largely because I was bringing so much frustration and anger home from my job. I still loved being in the classroom, but the politics and lack of leadership was eating away at me on a daily basis. Fortunately, my wife realized that the time had come for me to leave that job (even though it meant we would now have to pay a significantly larger sum of money for our daughter’s education since she was getting reduced tuition because I was a teacher at the school). I finished out the school year, and I found a new job serving in non-classroom position at a grade school. Although I knew I would miss the daily interaction with the same set of students, the new job afforded me the chance to have a broader impact because I was supporting teachers as they worked to integrate technology into their classes. Plus, I still got the opportunity to work with students on a frequent basis. Unfortunately, Catholic grade schools function at the whim of the Pastor, and the Pastor at my new school was (and is) not a pleasant man or a good leader. To put it simply, he describes himself as a zealot with a great deal of pride. He managed to drive out the school’s principal by the end of December, and I had taken my new job specifically to work with her. I did try to work with other teachers to get the Archdiocese involved, and they did do a fact-finding investigation, but nothing came of it. I also started looking for another job, as soon as my friend resigned. Ironically, as bad as things got at the new job, they never seemed to feel worse than what I had been experiencing at my previous job. I have no doubt that they would have if I had stayed at that Catholic grade school, but my job search led me to an opening at a different Catholic grade school. I interviewed there and accepted a position which required me to start immediately. The idea of me resigning from something mid-year would have been unthinkable to me even 2 years ago, but I did not hesitate in this instance. Clearly, making the change to the new grade school would absolutely be the best thing for me and for my family. By the end of March, I was the technology coordinator at my new grade school, and I was a significantly happier man, even though I had an astronomical amount of work to do. Finding a healthier and more supportive work environment in both of my job changes in the past year definitely made it easier for me to function and to cope with my narcolepsy. In fact, both positions required me to work full time, even though I had only been working 70% time since my narcolepsy diagnosis, and the reality is that both of the Catholic grade schools needed far more than full-time work from me to get their technology up to speed. I not only managed to work full-time and to do all of the extra work, but I also have been able to be more present for both my wife and my daughter. Again, I know that is a direct result of pushing myself to make the right choices for me.
I certainly feel like I have a long way to go to take better care of myself, but I also feel confident that for the first time in years, I am on the correct path to living a more grounded, balanced life as a person with narcolepsy. My two goals for the remainder of this summer are to start posting to this blog and my “new” (started in the fall of 2013 yet without any additional posts) technology blog at least once per week — specifically because they are good outlets for me, and I want to re-establish finally some level of regular fitness routine because I know that I need to improve my physical health to make my mental and emotional health even stronger. I am also hoping that making those 2 goals public here will push me to follow through. And, anyone reading this blog will certainly get the opportunity to see how success I am.
Filed under Balance, Blogging, Education, Emotions, Exercise, Family, Gratitude, Healing, Honesty, Hope, Illness, My story, Narcolepsy, Technology, Wisdom
We are now on the road home (Interstate-35 South). Even though I have had this WordPress app on my Droid X since last summer, I am using it for only the second time. Some of that is the result of Bite Size Life disappearing from cyberspace, but it also a result of how easy it is to fall into old patterns in my life. I become heavily focused on daily survival during the school year, and that tendency has only increased during this current school year. I expend soooooo much every day at school, not only to make sure that my classes are functioning, but also to mitigate the negative impact of my one negative colleague. I have no doubt that the experience would drain anyone, but adding narcolepsy to the mix makes for a ridiculously stressful existence. And, it gets harder and harder to think outside of the box, in terms of finding healthier ways to balance my life. Even as I am typing this post, I am realizing that I could easily post an entry after a stressful day, or even during my 45 minute break between classes. On most days, I am helping students during those times, or I am trying to get something done for our class, but remembering that an outlet and escape sits on my hip. While I am a huge advocate of utilizing technology, I know that I remain a digital immigrant because it takes me months to integrate fully technical solutions into my life. And, my narcolepsy often benefits from using technology to make my life more efficient.
Again, this post is a perfect example of my point. Usually, I would be drifting in and out of the music and conversations in the car. Instead, I feel good that I am using a few minutes to process life with narcolepsy. The more I can allow myself the chance to step back from my day, the better I am able to cope with this disease. I remember how important it is to breathe. I remember that my fatigue and sleepiness is normal and okay. I remember that I am far more than this disease, my job, my frustrations. If nothing else, taking the long view helps me to embrace the moments of joy that do come into everyday. I think that is a pretty good result from recognizing that I can blog from my smartphone.
Filed under Balance, Blessings, Blogging, Driving, Family, Frustration, Gratitude, Hope, Insights, Joy, Narcolepsy, Travel
My parents are in town, so my wife, my daughter, my parents, my sister, my daughter’s friend, and I all made a trip up to Duluth to see other family members. Technically, we made two trips because everyone except my parents and me headed north on Friday. My parents drove me up Saturday. The weekend has been fun, but as always travel is exhausting for me. I am more than a little worried about the impact of driving up on Saturday, seeing lots of relatives, and then driving home on Sunday at midday. Given my stress level from the past week at my job, my time this weekend might have been “best” spent collapsed on a couch in Saint Paul. Because the intensity level in my classroom will only increase in the coming week, I will no doubt pay for pushing my body on the weekend too. I certainly am feeling far more tired today than I have on many other recent Sundays. And, we still need to get in the car for the trip beck home. I will do my best to stay low key today, but there is much to be done in the house too. It has been great to get away, but I hate that life with narcolepsy makes even a weekend trip overwhelming. The other piece that makes a weekend like this tough is that no one in my family fully “gets it.” My wife does have the best level of understanding, but even she had a list of chores I needed to do before leaving for Duluth on Saturday morning. My complete lack of energy on Friday meant that I needed to work like mad on Saturday before my parents arrived. I did a good job of cleaning, but was sweating profusely by the time I finished. For my parents and my Duluth relatives there are always a lot of questions, which I appreciate because it shows that they all care, but narcolepsy rarely makes “sense” to anyone other than other people who live with the condition. I need to get ready to head home now, and tension levels are rising in the hotel room, so ending this post is definitely in my best interest regardless of how tired I am.
I awoke today and felt horrid , so I stretched my spring break by a day by using a sick day. I am still not sure how I will be feeling tomorrow, but I do hope that I can get to school. While I did spend the day resting, I was also able to get the grading done that I needed to finish. My focus was mediocre at best, but that likely worked to my students’ advantage. Nonetheless, it is a welcome relief to have the grading done. It drives me crazy that even working part-time is a massive strain on me and that I needed a “day off” even though I had the entire preceding week as vacation. Narcolepsy has many twists and turns, but the constant fatigue can truly drive one nuts at times. One upbeat item from the day is that I do not feel guilty that I stayed home from work. While I know that I would have completed the grading even without the staying home, I certainly did a better job because I was not trying to juggle events at school while I was working my way through things. Plus, I definitely have something crazy happening in my body these days. It could still be recovery from pushing myself to complete the previous trimester, but it could also be a sinus infection or some part of my body going haywire from my various ailments. I simply like that I have reached a point that using a sick day does not cause me overwhelming remorse. The reality is that I have a chronic illness (or two), and thus I need to use my sick days periodically because my body pays a price for me constantly engaging with my students, my family, and my life. The next step will be for me to come to terms with the resentment that I still harbor because I cannot “do” everything that I want to do. Even with my day today, I found myself getting upset that I did not get more done. Even though I did more correcting than I have done in weeks, I was frustrated with myself for not accomplishing more. Somehow, I think I will be walking on this particular path for quite some time, but I do hope that I will eventually find some peace around things that I have “lost” due to my medical condition. I also love that I written two posts in two days. That too is a small victory for me.
Filed under Blogging, Education, Emotions, Exhaustion, Frustration, Illness, Insights, Loss, Narcolepsy, Sinuses, Wisdom
Apparently, today is moving day! As I mentioned in my previous post, Bite Size Life is a promising, new location on the web for narcolepsy support. I have been intending for sometime to get my blog transferred there, but the stars refused to align. Suddenly, as so often happens in my life, everything came together within an hour of my previous post. Thus, Narcoleptic Knights can now be found at www.narcolepticknights.bitesizelife.com. Hopefully, I am bright enough that I can continue to have the posts I write there, show up here too. The good news is that ALL of my Blogger posts are already on the bitesizelife. com site! Hooray! I do hope that this change does not cause major problems, but I am excited for a new adventure. Also, I am more determined than ever to provide some live blogging from the Narcolepsy Network conference. Cheers!
Somehow, I managed to write nothing in my blog for over a month. While the vacation did require some post-trip recovery, a number of other things contributed to my disappearance. First and foremost, the lovely world of Wii sucked me into it. My daughter’s purchase of Animal Crossing has definitely been a curse and a blessing. I love the game and have been quite successful, but WOW does it suck up time. Beyond that, I have been attempting to get back into some type of rhythm because I have already experienced two weeks of teaching. Certainly, doing my best to prep for the start of school also ate up time. Our strategic planning process was fascinating this summer, but taxed me beyond belief. More than anything, I have had a difficult time maintaining a consistent level of energy. On that note, I must get into bed. I actually had three nights in a row at the end of last week when I took only one dose of Xyrem. Such situations will not get me back into a regular routine anytime soon.
Before I go, though, I need to acknowledge two things. One, I have had a difficult and trying weekend due to moronic decisions made by the board of Narcolepsy Network. I will be attending their national conference in October, but sadly my relationship with them is likely ending. I have no doubt that I will blog about that soon. More importantly, I made a new friend on Facebook today. She actually knew me from Narcolepsy Network’s forums, but we had never exchanged direct messages before. She shared some wonderful compliments with me, particularly that my blog had helped her when she was initially diagnosed. Although I had been working up the energy to get back to my writing, that interaction spurred me to post this. I love how PWNs can do so much for each other in such simple ways.
>My excitement went through the roof today. I learned of yet another blogger with narcolepsy. Narcogirl write Confessions of a Narcoleptic. Similar to the other blogs that have come on my radar lately, she approaches her blogging in the fashion that I do. She is using the blog as a place to record her thoughts and her experiences with narcolepsy. When I first started writing mine, I was so disheartened that I only found a few other people writing about their narcolepsy. I certainly love the forums I have found on Facebook and at the Narcolepsy Network site, but I adore the chance to read the more personal reflections that tend to populate narcolepsy blog posts.
I now have fourteen other blogs listed in my “Other Narcolepsy Blogs” blog roll. Not all of them are updated frequently (in fact some have not had a post in a year or two), but it is cool that the list is growing rather than shrinking. The fact that I have added six blogs within the last three weeks is even more incredible. And, a few of those new blogs do post at least once or twice a month. Narcogirl has started off at an impressive pace. As one who has gone through feast and famine in my own writing (one month with 19 posts, another with 3), I think it is great that anyone with narcolepsy takes a few moments here and there to post at all.
I truly see these others bloggers as gifts. The chance to write about my own experiences is phenomenally rewarding in and of itself, but few things benefit me more than the chance to learn another PWNs story. While no PWN has the same story or symptoms or medications, we can all relate to the insane experiences that others have with this crazy disease. Thus, finding other blogs help me to remember that I am not insane. I also love that other PWNs are willing to discuss their condition in a public setting. I hate the idea that I need to hide my condition. I certainly do not “like” my narcolepsy, but it impacts who I am. I don’t want people to feel sorry for me, but I also do not want to deny that I am sleepy most of the time. It IS part of me.
I defintely hope that my list of other narcolepsy blogs continues to grow. I also hope that as more PWNs lift their voices and share their stories that we will all benefit from the expanding awareness that more blogs will bring. Please consider reading some of the blogs listed in my narcolepsy blog roll. It will be worth your time.