Category Archives: Sharing

Back to Blogging

I find myself in Las Vegas at the Narcolepsy Network Annual Patient Conference, and I can only wonder why I have not been writing more. Unfortunately, I have drifted away from many of the activities that have helped me manage this condition best. Fortunately, I have moments like this conference to remind me of WHY I need to blog about narcolepsy and its impact on my life. In fact, I even got to attend a session here that featured one of my heroes, the author of REM Runner, THE BEST narcolepsy blog on the Internet. Her session was fantastic because it reminded me that this blog is, first and foremost, my space for coping with my condition. I remain thrilled that others have benefitted from my story, but more than anything, I need to write about my narcolepsy because the disease makes my life difficult.
The other excellent aspect of REM Runner’s session was the room was filled with other bloggers with narcolepsy (BWNs?). It is incredible to know that numerous people with this condition are helping to tell our collective story in cyberspace. And, getting to spend even 75 minutes in person with them is inspirational. Plus, it reminds me that I am not alone in my struggles.
On that note, the road has certainly been difficult for much of the past year. I continue to feel overwhelmed by my life, partly because I am constantly trying to do more than my body wants to allow me to do. And, I have also let some of my health regimen slide. My two goals for the remainder of 2011 are to make my health more of a priority and to begin regular exercise again. Those two items must be a priority for me. Prioritizing my own health will bring numerous rewards, not the least of which is finding some outlets, like this blog, for the constant frustrations that I am feeling. The exercise will be even more important, though, because my physical strength and endurance has fallen precipitously, making every day a little tougher than it should be. Nonetheless, I continue to feel fortunate for the many blessings that I have in my own life. Truth be told, I have a great job that attempts to accommodate my narcolepsy, an amazing wife who constantly supports me, and a wonderful daughter who is doing the best she can to understand my limitations.
Beyond all of that, I am also lucky that I have been able to attend the Narcolepsy Network Patient Conference every year since I found out about it. This year, it is being held in Las Vegas, and while certain aspects of the venue and the organization are grating on me, it is glorious to see old friends and to make new ones. I definitely feel like I am doing the best that I have ever done in terms of getting rest and not overtaxing myself. I also feel good that I am finding ways to contribute without driving myself into the ground. The reality is that I enjoy helping others, but so often give too much of myself away in the process. At least here, I genuinely believe that I am maintaining a good balance. Heck, I am not even beating myself up for blowing off multiple sessions so I can rest in my room.
Thus, as dark as things have seemed lately, I know I am glimpsing some light for the first time in a long time. And, I am certain that I will not be seven months until I post again.



Filed under Heroes, Narcolepsy, Narcolepsy Network, Sharing

Bite Size Blogging

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 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!


Filed under Blogging, Excitement, Narcolepsy, Narcolepsy Network, Relationships, Sharing

Jetting to Jacksonville

I awoke this morning in a huge hotel room. The national Narcolepsy Network patient conference begins today in Jacksonville, Florida; I arrived late last night (technically, early this morning). While I remain uneasy about being here, I must confess that my beautiful view of the Saint John’s River certainly makes me glad for the break from my daily grind. I also know that I will enjoy many aspects of the conference. Hopefully, I deepen some of the friendships with other PWNs that I began at last year’s conference. And, many new PWNs await me as well.

At the same time I could not help feeling loss and regret as I ate during my layover in Atlanta. More than anything, I want to help and connect with other PWNs. While this blog does that, my primary outlet for the past year has been the Narcolepsy Network forums. At least it was until mid-September. I deeply believe that the work of some dear friends in those forums is a huge reason for Narcolepsy Network’s recent upswing in membership. Certainly, the number of people using the forums exploded during the last year, but I also know that Narcolepsy Network saw tremendous growth in paid memberships during that time as well. Unfortunately, the people most responsible for making the forums a welcoming and safe place for PWNs will not be with at this conference, nor do they oversee the forums any longer. I remain utterly bewildered as to how the people running Narcolepsy Network could be so obtuse as to not understand the vital role that those forums and individuals have played in the organizations sudden expansion.

The crux of it all for me is that I see the internet as a PWN’s most vital tool. Few of us are able to find doctors who truly understand our condition. Although many larger areas do have local support groups, most PWNs need far more connection than a few meetings a year can give. Those factors, added to the reality that many PWNs literally know no one who has their condition until they find a support group (if they can find one), mean that the internet is the one location that a PWN can interact with other PWNs on a consistent basis. Up until mid-September, I would have believe that such a reality was obvious to everyone associated with Narcolepsy Network. Now, though, I have serious doubts.

My experience at last year’s national conference was incredible. Certainly, being some place where I knew that 300 other people truly “understood” narcolepsy was a primary component of my joy, but far more significant was meeting face-to-face with many of the people that I had meet online. I am guessing that I will have a similar reaction this year. But, what vexes me to no end is that I doubt that other PWNs will get to have that opportunity in years to come. Since things changed on the Narcolepsy Network forums, I do not see the same level of interaction and vitality there. In fact, it is strange to see that in August the forums were adding 20 new members within 2 to 3 days, but now it might take a week or more to add 20 people. My observation is not researched or vetted, but it definitely seems like the energy in the forums is diminishing.

Clearly, I would love to see my friends back running the Narcolepsy Network forums, but deeper than that I honestly saw those forums as a way to improve significantly life for other PWNs. So many of us struggle to interact with the world because our enery is so limited. But, going online takes far less effort, and one need not drive somewhere to do it. I left my position as a moderator on the forums because of the way my friends had been treated, but I also did it because I did not (and still do not) trust the decision-making of the current board when it comes to Narcolepsy Network’s online presence. If they honestly had no idea how active and energetic their forums were, it is a sad reality. Certainly, many other online support groups for narcolepsy exist, but Narcolepsy Network’s advantage was (and still is if someone can right the ship) that they are a federally recognized non-profit with a national convention. Adding a strong and lively online community to that would make them the best resource anywhere for people with narcolepsy. Now, I wonder what will happen.

Of course, I could be crazy. Narcolepsy Network might have thrived in the past year due to some other reason. Only time will tell. Also, the other support groups, particularly the Facebook Narcolepsy Support Group and a new site Bite Size Life, might adequately fill any void created by the changes at Narcolepsy Network’s forums. Another definite possibility is a group in Second Life called Slumber Society. In the end, though, I need something for me. Selfishly (which I need to make a priority more often for myself), I need to find something that will give me the same fulfillment that my moderating on the Narcolepsy Network forums. Yes, I could “ask” to become a moderator for Narcolepsy Network again, but I will not work for the people currently “in charge” of the forums. As far as I am concerned, they haven’t a clue about running a forum effectively. I also know that I can’t afford to put in the energy that I did over the past year only to have it ripped away again. Thus, I find myself in limbo. I need to help other PWNs; it is something I do well. But, I also am struggling with my own energy so much that I do not have the time to figure out where to put my (currently non-existent) “narcolepsy support” energy. Time will eventually guide me in the correct direction, and I have learned enough to allow myself to trust the process. Unfortunately, that does not lighten my current mood, nor does it mitigate the hurt that I still feel from the events in September. Still, I know this chapter is just one more lesson that narcolepsy has for me to learn.


Filed under Depression, Education, Emotions, Exhaustion, Faith, Frustration, Honesty, Loss, Narcolepsy, Narcolepsy Network, Relationships, Sharing, Support

Happy Homecoming

We had a fantastic day on the road today. We experienced little heavy traffic, avoided any and all foul weather, and got from Hammond, IN to Saint Paul in LESS than eight hours. That includes two pit stops (one of which was also a re-fueling stop) and an hour long lunch at the Norske Nook in Osseo, WI. My wife did a bulk of the driving, but I also took a shift. While it taxed me, I handled the situations and my mood better than I did yesterday.

I drove from just across the Wisconsin and Illinois border until the first Dells exit. It turned out to be more than we had planned on me driving, but part of that was how frazzled I was at the end. Most of the stretch was good, but traffic got boggy around Madison (which frustrated me again). I also struggled with the argument that my wife and daughter had around the same time. My daughter is amazing, but she is also twelve (soon to be thirteen). She has a HUGE heart, but is prone to defensiveness whenever she is forced to confront uncomfortable issues. My wife was suggesting that our daughter start practicing her trombone soon. That did not go over well, and the ensuing conflict resulted in our daughter (once again) being disrespectful to my wife. I did not explode, but I wanted to do so. I fumed about it, though, which made my wife nervous. To her credit, she gave me space (and encouraged our daughter to do the same). My wife also confronted our daughter about the disrespectful language – in a calm and appropriate way. While I did wind up pushing 20 miles farther than I had initially planned (due to a cruddy set of circumstances – poor lane changing and an unhelpful exit configuration), we all stayed grounded.

Other than that one moment, the rest of the trip was fairly low key. All three of us were thrilled to get home, but also had a blast on vacation. I truly can’t remember another trip that ended this well. My wife and I both got some work done tonight, and we created a rough plan for the week. She needs to get a presentation planned, so she is likely going into her office tomorrow even though she took the day “off.” I am hoping to get one or two small things done around the house, but I am making a conscious effort to keep Monday and Tuesday light because I know I need to recover from the trip, particularly the realities of spending two long days in the car. Our daughter was scheming plans for herself three days ago. She even went to a friend’s house tonight. I am looking forward to spend a least two or three days with her during the next two weeks. It should be fun to “goof off” with her even as I get myself into school mode.

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Filed under Blessings, Driving, Family, Friends, Gratitude, Honesty, Hope, Humor, Joy, Marriage, Narcolepsy, Parenting, Sharing, Travel

Trouble Tracking

Today has been odd. I know that I got things done, but I just don’t feel like I did much. I had trouble getting going this morning. Some of that is residue from this weekend – I know that Mondays are hard when I have pushed during the weekend (and that definitely happened between the anxiety and the excitement of the play plus the physical exertion of striking the set). I also know that some of my discomfort today is connected to the numerous things that I feel looming in my life. Whether it is work for school or the multitude of house projects, there is much to do and the time is slowly dwindling. The hardest part is knowing that I probably can’t get to everything that I would like to do. Well, that and the fact that I want to finish everything within a day. I do find it funny that my baseline is still, “I should be able to do that by the end of the day.” At least I know it is ridiculous, but I still experience some emotional push back from my subconscious.

I did manage to take care of a few things for school today. Mostly, I got our writing curriculum books to two of my three colleagues. Hopefully, I will take care of the third person before the end of the week. I also did a little shopping for myself, and I had a great conversation with a couple of friends. While those interactions were unplanned, there were wonderfully refreshing. I just wish that I wouldn’t do my mental calculus after them (I just spent 30 minutes talking to that person, which means I can only get to this now…). Just one more aspect of my anxiety and my narcolepsy having a little party in my brain. More than anything, today is reminding me that I need to set schedules for my days like this. As nice as it is that my daughter does not have rehearsal every afternoon, that event forced a small amount of scheduling into my days. Now, things are too open, and I run the risk of that paralyzing me. Hopefully, tomorrow will feel more productive. I also have some time tonight that I can use to my advantage.

Finally, I need to mention that I did advocate for myself today. My wife just scheduled her conference for October. While we knew that her annual medical writers conference is in direct conflict of my Narcolepsy Network, we have already planned that we are both going to attend our conferences. However, when she mentioned signing up for hers, I then asked if we could get things in order for my conference. I definitely hope that we can do that soon. While it is not much, knowing that I have a flight to Jacksonville and a hotel room will take some pressure off of the many things on my mind. Silly, yes, but real.

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Filed under Depression, Emotions, Exhaustion, Family, Frustration, Honesty, Narcolepsy, Narcolepsy Network, Sharing, Travel

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

>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!

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Filed under Blessings, Excitement, Friends, Gratitude, Heroes, MOONS, Narcolepsy, Narcolepsy Network, Sharing, Support