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.

Sleepy Sunday

The day was definitely low key at my house today. My daughter had a friend here over night, and the two of them had fun creating a movie on my MacBook Pro. They also played air hockey, goofed around, and enjoyed the Wii. My wife spent most of the day resting, but is getting to some of the chores now. She is definitely feeling some pressure because we are leaving on vacation this Thursday. Thus, we need to get the house cleaned and have a number of ducks in a row before we hop in the car. Not only is she thinking about the work at home, but also she needs to get a number of things done at her office. Plus, her husband with narcolepsy is not a big help in crunch times - oops!

I spent the day puttering, but I did get some things done. I washed some dishes and finally cleaned off our dining room table. I am still hoping to get a couple more things done before I head to bed. More than anything, though, I used the day to recharge a bit. I tried to let go of my worries, appreciating the things that I did get done. Hopefully, my lack of fretting will continue throughout the week, allowing me to maintain my energy and to accomplish a few more tasks in the process. I definitely need for that to happen, but sometimes my body and my narcolepsy make their own plans. It does not help that I have two six hour meetings on Monday and Tuesday up at school. In the end, though, things will be what they are, and we will still leave on our vacation regardless. Life is funny that way.

Partial Productivity

The last day or so have gone decently for me. While I do still feel adrift, I am having spurts of success when it comes to knocking one or two things off my ever-growing list. Beyond the finances, I filed somethings in our office, and I managed to get some tasks done for MOONS-MN. Most importantly, I got invitations out to others for the MOONS-MN gathering this coming Saturday, July 18. I definitely hope that a few people can make it. We are trying to have a few gatherings that are more social in nature because we know that many people want to have MOONS be more of a support group.

The best part about getting the emails and the U.S. Mail sent is that I will not feel any guilt or shame now, regardless of the turn out on Saturday. Had I been unable to accomplish those tasks, though, I am sure that I would have blamed myself for any failures (real or imagined) that might have happened. I definitely wish at times that I did not have this overdeveloped sense of responsibility. The reality is that I can only do so much, and I am honestly putting forth my best effort. I also feel good that I am making progress in helping get MOONS more organized - many hands truly do make light work.

One goal that I do have for today is to put closer to one thing around my house. I am not sure yet whether that will be our office (or at least the clutter on the desks - since there is MORE to do than I can accomplish in a day) or cleaning the kitchen completely. I feel like I am slowly wrapping my head around the idea of chipping slowly away at my many tasks. That is just one more piece of the lifelong journey that living with narcolepsy gives to me. I also know that I will need to spend some time this afternoon resting. My sleep last night was limited. Although I intentionally worked late, I still managed to fall asleep (post-Xyrem) in our office. Fortunately, my wife rescued me and brought me to the bed for a couple hours of decent sleep.

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.