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.

Travel Tension

On the whole, today has been great, but as was the case on the way down to Tennessee, narcolepsy did choose some choice moments to rear its ugly head. In an attempt to create a smooth departure this morning, we all packed last night. Ironically, that effort paid off for us (those things usually backfire in some way). We were on the road by 6:25 AM - a significant improvement from a week ago Friday (when our 6 AM departure turned into 8 AM). My wife was on edge as we left, but I knew that she was definitely sick still, and her angst quickly passed.

The problem, though, was that due to my wife's illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.

Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.

When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to "help" me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.

I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.

Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane - in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.

Craft Craze

I had an excellent time today going to look at crafters. Unfortunately, my wife was too ill to join us, so my daughter and I ventured out alone. We needed to exchange a shirt at the aquarium first, which was also an excuse for my daughter to get an awesome funnel cake (it looked like a pound of powdered sugar!). Then, we headed east for the eight mile artisan loop. Since it was hot, we knew that we could not go to many places, but we did check out a few shops.

The woodwork and art that we found blew my mind. I am glad that we made the trip because I will now push harder to make it a priority the next time that we come here. Gatlinburg has amazing talent in this eight mile loop. We did make a few purchases, but I was tempted to get far more. Wisely, I realized that my wife would need to okay the larger purchases. It simply means that we need to return here again.

The best part of the day, though, was simply getting out. My sinuses definitely seemed to be better today. I felt good being more alert and having the chance to connect with my daughter. I continue to worry that narcolepsy will prevent me from knowing as well as I might. Gratefully, days like today remind me that I can find windows. I am excited to head home, but feel like I had a great vacation inspite of my medical woes. We have already packed most of our stuff, allowing us to plan for a 6 AM departure. I hope that I can be ready since I was the delay on both days of our driving down here. Tomorrow is definitely the "longer" day, but we should hit our worst stretch (Pigeon Forge - 5 miles in one hour) before anyone else is actually awake. We will stay in northern Indiana again, but booked a hotel slightly closer to Chicago. I like that I am ending this trip on an upbeat note. That has not been my previous experience very often.

Wild (weird) Week

I am struggling to believe that I went aq week without posting. Sadly, that is in fact the reality, though. I found myself overwhelmed by meetings and events for most of the past week, and on Friday morning we departed on our trip. The strategic planning meetings on Monday and Tuesday were incredible, but they overwhelmed my body on Wednesday. I did still manage to get some housework and yard work done, though. Unfortunately, that effort coupled with more meetings and errands on Thursday left me FAR behind in my trip preparations. I stumbled out of our office on Thursday night around 11 PM, took one dose of Xyrem, and knew that I would need to get up as early as possible without a second one because I still had far too much to do. It was also the second night in a row with a solo dose.

I did manage to get up between 4:30 and 5 AM, but I still delayed our departure by nearly an hour and a half. Fortunately, my wife and daughter remained calm. I did do some driving (about an hour and a half in the middle of that leg), but it wiped me out. We also got stuck in ridiculous traffic around Chicago. Being the car so long and the fact that I was baking on my side of the car left me with a horrific headache. Fortunately, my wife and daughter still went and enjoyed the dunes on Lake Michigan. Unfortunately, I was unable to awaken for my second dose that night, thus it was three nights with only one dose of Xyrem. The trip from northern Indiana to Tennessee was even longer than Friday's drive. Again, my wife did a bulk of the driving, but I again took a 1.5 hour section in the middle. I was fading badly at the end, and we wound up snapping at each other, but reconciled over lunch. The worst part of the trip came at the end. After 550 miles of driving, we spent nearly two hours covering the final 30 miles because traffic into Pigeon Forge and Gatlinburg, TN is so awful. Again, I was shot and baking.

I did get an okay sleep last night, but am also frustrated because our resort only has ONE internet computer available for guests. At some of their other resorts, they at least make wifi available in the lobby of the clubhouse, but at this one they CHARGE for it! So, I am sitting in the parking lot of a McDonald's using my new Qwest WiFi (available through AT&T). Of course, it took forever to make the connection work right, so I am only going to get a couple of chances to write on my blog. Worse, I truly had hoped to do a little work while I was here. Hopefully, I will work something out. I certainly plan to enjoy our vacation, but this is the first long trip that we have taken with me trying to cope honestly with my narcolepsy. I functioned poorly today (at best). We are going hiking tomorrow and rafting on Tuesday. While I am excited about those activities, I am also worried that I will be unable to do much else. I know that will frustrate my wife and daughter. We will see what tomorrow brings, though. I need to run now. I need to get gas for our car and to get groceries.

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.