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.
Showing posts with label Marriage. Show all posts
Showing posts with label Marriage. Show all posts
Sunday, August 9, 2009
Saturday, August 8, 2009
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.
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.
Friday, August 7, 2009
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.
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.
Slow Startup
Today is our last day in Tennessee. We will rise early tomorrow and hit the road. While I am not looking forward to two days in a car, I am looking forward to getting back home. I feel good that I still have two weeks before I am back at school. I have oodles of things to do - at home and for school, but I will continue to approach them at the pace that I can handle. Today definitely feels similar to that. My wife went on a driving loop last night by herself. She enjoyed it immensely, but came home even sicker than she was. Thus, I am the only one up this morning. Hopefully, we will still try to visit some of the craft shops today, but I love that we can have such a relaxed start to our "final day." Far too often, a day like this is treated frenetically, cramming in activities for each waking moment. Instead, we will take in what we can and simply appreciate the chance to spend time together.
I find myself grateful for the many opportunities to slow down my life and expectations. My brain continues to push me, but I am getting better at letting go. I am even able to appreciate the fleeting moments when I do achieve a level of balance. Those moments are not nearly as frequent as I would like, but the fact that success brings joy rather than regret is a huge improvement. For years, a moment of serenity would bring angst rather than relief. I would berate myself for my inability to "feel serene" more often - how screwed up is that? Thus, I am highly content to lounge this morning, at peace with my upbeat outlook.
That said, I do need to find a bit more structure to my days when I get back home. The start of school is still three weeks away, but I need to begin adapting my schedule and routine now, since I know that a radical shift will not sit well with my brain or physical health. I also need to find a physical routine. The hiking and rafting has been great, but my body hurts all over as a result. More than anything else, I need to strengthen my knees. They are hurting constantly these days. I must spend some time over the next three weeks to get them ready for standing frequently during the school day. If I don't, it will be a LONG year. I find juggling exercise, my family, my sanity, and my job one of the most frustrating aspects of narcolepsy. All of them take energy from me, but all of them are vitally necessary.
I find myself grateful for the many opportunities to slow down my life and expectations. My brain continues to push me, but I am getting better at letting go. I am even able to appreciate the fleeting moments when I do achieve a level of balance. Those moments are not nearly as frequent as I would like, but the fact that success brings joy rather than regret is a huge improvement. For years, a moment of serenity would bring angst rather than relief. I would berate myself for my inability to "feel serene" more often - how screwed up is that? Thus, I am highly content to lounge this morning, at peace with my upbeat outlook.
That said, I do need to find a bit more structure to my days when I get back home. The start of school is still three weeks away, but I need to begin adapting my schedule and routine now, since I know that a radical shift will not sit well with my brain or physical health. I also need to find a physical routine. The hiking and rafting has been great, but my body hurts all over as a result. More than anything else, I need to strengthen my knees. They are hurting constantly these days. I must spend some time over the next three weeks to get them ready for standing frequently during the school day. If I don't, it will be a LONG year. I find juggling exercise, my family, my sanity, and my job one of the most frustrating aspects of narcolepsy. All of them take energy from me, but all of them are vitally necessary.
Thursday, August 6, 2009
Internet Interruption
I love that I am constantly learning new things about myself. While a portion of that statement is facetious, I do like that I am open enough to recognize important factors about my mental and physical health. So, we are on vacation. Gatlinburg has been great, but my sinuses has not. I am also furious that my resort DOES offer an internet connection, but for a fee. I realized this after returning from McDonald's on Sunday. My rage only increased when I learned that the resort's internet is provided by Wayport. While Wayport has been around for a while, apparently the company is now owned by AT&T. The irony is that I am supposed to be able to connect to AT&T wifi because of my own internet connection at home. In fact, I used the Wayport connection at McDonald's! I finally caved in and paid for 24 hours on our room connection. I needed to do that.
My health woes have made for a long week, but it has also been hard because I don't do well when I have "unstructured" time. We have done some hiking, gone white water rafting, and visited the Aquarium of the Smokies. Those activities have been awesome. Unfortunately, those things drained me (because I have narcolepsy) and left me sitting around our townhouse at the resort. When I don't have ways to distract myself, I tend to get stuck in my own head. To avoid that I have watched a ridiculous amount of TV. I would have done far more productive things had I had an internet connection, but that was not possible. I also knew that trying to DO other things would be a disaster, since my limited excursions have left me wiped out. That might be the most frustrating aspect of this. This trip is the first long one that we have taken since I have begun to figure out how to live effectively with my narcolepsy. Unfortunately, I was not prepared for it. The lack of the internet connection, coupled with how much two LONG days in the car took out of me, has made it difficult for me to be upbeat. I also know that I am bring down the moods of my wife and my daughter. We are having fun, but my limited participation certainly impacts them.
I am now in hour 30 of a killer sinus headache too. It improves at times, but on the whole, the dull and constant pain in my left temple is getting old (to say the least). I skipped the hike this morning in hopes that I would feel better, but it made no difference. I am also afraid that I will get worse when we spend two days in the car driving home. Hopefully, tomorrow will be a good day. We plan to visit some of the shops on the craft circle - an eight mile loop of various artisans. It should be a blast, but all of us are under the weather. We certainly will not push ourselves, but it is definitely a burden on my wife. She clearly has a cold, but is trying to pick up my slack. I am doing my best to stay positive and engage with my wife and daughter, but there is only so much that my body can give. I will attempt to keep smiling and give everything that I can!
My health woes have made for a long week, but it has also been hard because I don't do well when I have "unstructured" time. We have done some hiking, gone white water rafting, and visited the Aquarium of the Smokies. Those activities have been awesome. Unfortunately, those things drained me (because I have narcolepsy) and left me sitting around our townhouse at the resort. When I don't have ways to distract myself, I tend to get stuck in my own head. To avoid that I have watched a ridiculous amount of TV. I would have done far more productive things had I had an internet connection, but that was not possible. I also knew that trying to DO other things would be a disaster, since my limited excursions have left me wiped out. That might be the most frustrating aspect of this. This trip is the first long one that we have taken since I have begun to figure out how to live effectively with my narcolepsy. Unfortunately, I was not prepared for it. The lack of the internet connection, coupled with how much two LONG days in the car took out of me, has made it difficult for me to be upbeat. I also know that I am bring down the moods of my wife and my daughter. We are having fun, but my limited participation certainly impacts them.
I am now in hour 30 of a killer sinus headache too. It improves at times, but on the whole, the dull and constant pain in my left temple is getting old (to say the least). I skipped the hike this morning in hopes that I would feel better, but it made no difference. I am also afraid that I will get worse when we spend two days in the car driving home. Hopefully, tomorrow will be a good day. We plan to visit some of the shops on the craft circle - an eight mile loop of various artisans. It should be a blast, but all of us are under the weather. We certainly will not push ourselves, but it is definitely a burden on my wife. She clearly has a cold, but is trying to pick up my slack. I am doing my best to stay positive and engage with my wife and daughter, but there is only so much that my body can give. I will attempt to keep smiling and give everything that I can!
Sunday, July 26, 2009
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.
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.
Saturday, July 25, 2009
Sluggish, but Sane
I chose not to push myself at all today. While I desperately want to be more productive, I knew after yesterday that I would be a fool to drive myself today. Thus, I got up slowly and thoroughly enjoyed the long "talk time" with my wife. It amazes me each week how wonderful it is just to spend time in honest conversation with her. I also know that those exchanges are a huge part of why my love for her deepens every day. After we finished, I attempted the crossword and finished the sudoku in the StarTribune. Then, I played some Animal Crossing, which is rapidly becoming my favorite mindless past time.
My wife asked me today how I can enjoy it because there is no "objective" to the game. But, I think that is what I like about it. Before my narcolepsy became intolerable, I enjoyed fishing. What was good about it for me is that I could sit and do nothing, but not get stressed out. Ordinarily, lounging causes me immense amounts of stress because my brain wants me to do things. In fact, it uses quiet times to inundate me with a myriad of unfinished tasks, but fishing WAS something. I could be focused on the process of casting and retrieving, blocking out the normal litany from my mind. Animal Crossing definitely fills a similar role, partly because I spend a decent amount of my time in the game fishing. I will need to be careful of my time with this one, but it is a good way for me to use my downtime in a restful way.
I did manage to help clean our kitchen. I even put away a few of the piles from our dining room table. Hopefully, I will have a bit more energy tomorrow. The most important aspect of the day, though, is that I am at peace with what I did and what I left undone. Much of my stress earlier this week centered on what I have not finished yet for this coming school year. The reality is that I still have time to get things done, and I am a part of an amazing team. We made significant strides on Thursday and Friday. I am willing to guess we will have even more success on this coming Thursday. I need to remember that I have already been more efficient this summer than I have been at any point in my teaching career. I still want to do more, and I will. But, I deserve congratulations for the work I have done thus far. Plus, it will do me no good to make myself sick well before the school year begins. Summer has to be about me regaining energy so I can be effective during the school year. I truly do not know what tomorrow will bring, but I will do my best to get one or two things done, and I will make sure that I continue to take the breaks that my body needs to rebuild my reserves.
My wife asked me today how I can enjoy it because there is no "objective" to the game. But, I think that is what I like about it. Before my narcolepsy became intolerable, I enjoyed fishing. What was good about it for me is that I could sit and do nothing, but not get stressed out. Ordinarily, lounging causes me immense amounts of stress because my brain wants me to do things. In fact, it uses quiet times to inundate me with a myriad of unfinished tasks, but fishing WAS something. I could be focused on the process of casting and retrieving, blocking out the normal litany from my mind. Animal Crossing definitely fills a similar role, partly because I spend a decent amount of my time in the game fishing. I will need to be careful of my time with this one, but it is a good way for me to use my downtime in a restful way.
I did manage to help clean our kitchen. I even put away a few of the piles from our dining room table. Hopefully, I will have a bit more energy tomorrow. The most important aspect of the day, though, is that I am at peace with what I did and what I left undone. Much of my stress earlier this week centered on what I have not finished yet for this coming school year. The reality is that I still have time to get things done, and I am a part of an amazing team. We made significant strides on Thursday and Friday. I am willing to guess we will have even more success on this coming Thursday. I need to remember that I have already been more efficient this summer than I have been at any point in my teaching career. I still want to do more, and I will. But, I deserve congratulations for the work I have done thus far. Plus, it will do me no good to make myself sick well before the school year begins. Summer has to be about me regaining energy so I can be effective during the school year. I truly do not know what tomorrow will bring, but I will do my best to get one or two things done, and I will make sure that I continue to take the breaks that my body needs to rebuild my reserves.
Sunday, July 19, 2009
Slow Sunday
Everyone got up late in our house today. As always, I was the first one up - Xyrem in a midnight and 3 AM means I am awake at 8-8:30 am. Today was no different. Of course, the physical exertion of cleaning up last night and the emotional strain of watching my daughter left me completely washed out. My wife finally arose around 10:45, and we got my daughter up at 11:15. I have no doubt that the stress of the play drained both of them. While my daughter loved the entire experience, she expended ridiculous amounts of energy, especially in the last seven days. As Alice, she was literally on the stage every moment of the play, and she gave to the audience for the full 95-100 minutes both nights. For my poor wife, the drain can primarily from insane nervous energy. I have seen my wife stressed about her own presentations, but that is nothing compared to her fretting over our daughter's performance. Since our daughter has definitely been bitten by the performance bug, I am hoping that my wife's anxiety will start to settle down.
Once we got up, we did nothing. I don't think any of us had much motivation today. We did decide to check out Harry Potter and the Half-Blood Prince. We loved the film, but even that trip to the film depleted the minimal energy that any of us had. I got home and felt like collapsing. Thankfully, my wife was able to let go of her own concerns about getting work done. I definitely would have found it more difficult to shut down tonight had my wife tried to push herself to do more work, partly because she has done a bulk of the work that was required from parents for the play. I sincerely hope that I can get back into a better groove in this coming week. I certainly have done a decent job, but I want to find a healthier balance in my work efforts and my exercising.
Although today was incredibly low key, it is wonderful to realize that we were able to have a day like this as a family. Far too often, we have isolated on days like this one. Or, one or two of us will be frenetic, while someone else shuts down. Rather than begrudging each other, we celebrated our fatigue together. As the PWN in the family, I truly appreciate that. As I have said many times, my wife and my daughter are the two people who I still worry about disappointing. Thus, days like today can be dangerous for me. Instead, today was heavenly.
Once we got up, we did nothing. I don't think any of us had much motivation today. We did decide to check out Harry Potter and the Half-Blood Prince. We loved the film, but even that trip to the film depleted the minimal energy that any of us had. I got home and felt like collapsing. Thankfully, my wife was able to let go of her own concerns about getting work done. I definitely would have found it more difficult to shut down tonight had my wife tried to push herself to do more work, partly because she has done a bulk of the work that was required from parents for the play. I sincerely hope that I can get back into a better groove in this coming week. I certainly have done a decent job, but I want to find a healthier balance in my work efforts and my exercising.
Although today was incredibly low key, it is wonderful to realize that we were able to have a day like this as a family. Far too often, we have isolated on days like this one. Or, one or two of us will be frenetic, while someone else shuts down. Rather than begrudging each other, we celebrated our fatigue together. As the PWN in the family, I truly appreciate that. As I have said many times, my wife and my daughter are the two people who I still worry about disappointing. Thus, days like today can be dangerous for me. Instead, today was heavenly.
Friday, July 17, 2009
Paying Penance
In the cosmic ebb and flow of my life, I knew a day like today was coming soon. Last night, for the third night in a row, I did not make it to my bed until "today" (meaning post-midnight). While it is summer, and I do not have looming deadlines, I can ill afford to get wildly off my regular schedule. The transition back would take me one to two weeks at least. That said, I am then faced with getting up after only one dose of Xyrem. That prospect is also rotten because I eventually get overly run down and cranky. I finally decided last night that I would actually do my second dose of Xyrem at 4 AM and would then be way off my regular routine.
Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter's play, I figured I'd better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so "off" that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.
Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).
Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school - Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter's personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.
But, even "knowing" that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an "actor's movie" with all of the behind the scenes silliness, but also it is a great reminder that "it all works out in the end." As Henslowe says, we don't know why or how - it's a mystery. I think it is important for my daugher to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play - the music director is a tad flaky. When the first "complete" run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.
My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don't think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today - oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.
Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter's play, I figured I'd better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so "off" that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.
Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).
Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school - Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter's personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.
But, even "knowing" that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an "actor's movie" with all of the behind the scenes silliness, but also it is a great reminder that "it all works out in the end." As Henslowe says, we don't know why or how - it's a mystery. I think it is important for my daugher to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play - the music director is a tad flaky. When the first "complete" run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.
My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don't think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today - oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.
Wednesday, July 15, 2009
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.
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.
Monday, July 13, 2009
Birthday of Beauty
Today is my wife's birthday. Hopefully, I have done enough (and will continue to do enough) to let her know how much I adore her. One of my greatest frustrations with narcolepsy is that it often keeps me from doting on my wife to the levels that she deserves. She is truly amazing. Beyond putting up with me, my wife manages to excel at an incredibly difficult job, to provide tremendous care to our daughter, and to maintain our household at levels that dazzle me.
I do hope that other people have been able to marry (or to be partners) with their best friend. My wife is an amazing blessing to me. She supported me throughout the awful journey that eventually led to my diagnosis, and she continued to keep my spirits up when I struggled to find the right meds. But, beyond those things, my wife provides me (and our daughter and the world) positive energy on a daily basis. She is quick to laugh and has a glorious sense of humor. She can even been childishly silly, which I love because I can too!
Yet, her magnificent intelligent regularly awes the doctors in the Department of Medicine at the University of Minnesota. My wife edits articles and grant proposals, particularly high level NIH grants. And, she is exceptional at what she does. Every physician, or other professor, who works with her raves about her talent as a writer and editor. My wife even has two published books. While multiple authors worked on the books, my wife did a vast majority of the "final" writing. The first book explored how to create a research productive department, while the second delves into effective mentoring.
The most amazing thing, though, is that my wife's great talent has nothing to do with her brilliance. Simply put, my wife is the kindest, sweetest, and most earnest person I have ever known. She goes out of her way to help others. She is also loyal to a fault. In fact, she is so loyal that she will choose honesty over self-preservation. She calls out injustice and dishonesty even when she knows that it may cost her social status. My wife exudes grace and class.
In the end, though, my wife is a person who deserves far more than the world gives her. I wish that my narcolepsy did not make it so difficult for me. I would love to shower her with gifts and affection. She deserves to be placed upon a pedestal. While I know I can't give her much, I will hold her tonight and whisper sweetly in her ear. One thing I know, simply letting my wife know how much she is appreciated will mean the world to her because she is a saint!
I do hope that other people have been able to marry (or to be partners) with their best friend. My wife is an amazing blessing to me. She supported me throughout the awful journey that eventually led to my diagnosis, and she continued to keep my spirits up when I struggled to find the right meds. But, beyond those things, my wife provides me (and our daughter and the world) positive energy on a daily basis. She is quick to laugh and has a glorious sense of humor. She can even been childishly silly, which I love because I can too!
Yet, her magnificent intelligent regularly awes the doctors in the Department of Medicine at the University of Minnesota. My wife edits articles and grant proposals, particularly high level NIH grants. And, she is exceptional at what she does. Every physician, or other professor, who works with her raves about her talent as a writer and editor. My wife even has two published books. While multiple authors worked on the books, my wife did a vast majority of the "final" writing. The first book explored how to create a research productive department, while the second delves into effective mentoring.
The most amazing thing, though, is that my wife's great talent has nothing to do with her brilliance. Simply put, my wife is the kindest, sweetest, and most earnest person I have ever known. She goes out of her way to help others. She is also loyal to a fault. In fact, she is so loyal that she will choose honesty over self-preservation. She calls out injustice and dishonesty even when she knows that it may cost her social status. My wife exudes grace and class.
In the end, though, my wife is a person who deserves far more than the world gives her. I wish that my narcolepsy did not make it so difficult for me. I would love to shower her with gifts and affection. She deserves to be placed upon a pedestal. While I know I can't give her much, I will hold her tonight and whisper sweetly in her ear. One thing I know, simply letting my wife know how much she is appreciated will mean the world to her because she is a saint!
Sunday, July 12, 2009
Stretched, Stressed, Stunned
I keep thinking that I might have a calm, low-key day. I continue to be wrong. Although yesterday was fantastic, it was also draining. As a result, I awoke exhausted and completely discombobulated. I spent the first part of the morning simply getting my bearings. Eventually, though, I remembered that my lawn needed mowing - desperately. Thus, I shook out the last of my cobwebs and tried to get some blood flowing.
I do continue to question my own sanity because it used to take me thirty minutes to mow my lawn. Now that I own a push-reel mower and a lawn sweeper, it takes significantly longer. The added bonus today was that I had not mowed for nearly two weeks. My grass was frighteningly long, particularly in our front yard. When all was said and done, it took me two hours to finish the lawn, and I know that a few spots could have used more passes with the mower. The physical effort drained me, but I remain committed to doing this. I feel good about helping the environment, and an unforeseen benefit is the fact that I am getting better at letting go of some perfectionist tendencies. The reality is that I will NEVER cut every blade of grass, even if I were using a power mower. Beyond the energy drain, though, the extend time I spent on the lawn meant that I needed to get ready immediately for my MOONS-MN planning meeting.
The MOONS-MN planning meeting went extremely well, but it served as a constant reminder of my many undone tasks. We have a social gathering planned for next Saturday, July 18, which will be a fun "snack potluck." We are hoping that the afternoon provides our members with the chance to talk and to interact with one another in a casual and informal way. We also got our September 12 meeting planned. It might the most productive planning meeting that we have ever had. But, that efficiency did not diminish the gnawing sense of anxiety in the back of my brain. I just need to remember that I will keep doing my best and accept what I cannot complete and celebrate what I can.
In many ways, the toughest part of my day was yet to come. As I was on my way home, my wife called. Thankfully, I was not driving because she definitely needed to talk to me. We were on the phone together for the entire twenty minutes that it took to get me home. Then, we talked for another hour upon my arrival. My wife had an extremely difficult interaction with another parent today. It is even more frustrating because this person was essentially attacking our daughter. While some of what this individual said might be true, the reality is that this person was only looking at the situation from one point of view, not taking any of the possibilities for our daughter into account. Even more remarkable, the other person dismissed comments from my wife about some of the struggles that our daughter has experienced. By the time I got home, my wife was seething. By the time our conversation ended, I had worked my own way through seething and was simply sad and disappointed. I think the great misfortune in all of this is that as a result of one parent being overly aggressive and overly involved, two children may lose a friendship. Hopefully, that will not be the case.
I have no doubt that tomorrow will arrive with its own challenges. I hope that narcolepsy will allow me the energy I need to keep working my way back to an even keel. If not, I will do what I can, take a breath, and work to let go of all of my challenges and disappointments.
I do continue to question my own sanity because it used to take me thirty minutes to mow my lawn. Now that I own a push-reel mower and a lawn sweeper, it takes significantly longer. The added bonus today was that I had not mowed for nearly two weeks. My grass was frighteningly long, particularly in our front yard. When all was said and done, it took me two hours to finish the lawn, and I know that a few spots could have used more passes with the mower. The physical effort drained me, but I remain committed to doing this. I feel good about helping the environment, and an unforeseen benefit is the fact that I am getting better at letting go of some perfectionist tendencies. The reality is that I will NEVER cut every blade of grass, even if I were using a power mower. Beyond the energy drain, though, the extend time I spent on the lawn meant that I needed to get ready immediately for my MOONS-MN planning meeting.
The MOONS-MN planning meeting went extremely well, but it served as a constant reminder of my many undone tasks. We have a social gathering planned for next Saturday, July 18, which will be a fun "snack potluck." We are hoping that the afternoon provides our members with the chance to talk and to interact with one another in a casual and informal way. We also got our September 12 meeting planned. It might the most productive planning meeting that we have ever had. But, that efficiency did not diminish the gnawing sense of anxiety in the back of my brain. I just need to remember that I will keep doing my best and accept what I cannot complete and celebrate what I can.
In many ways, the toughest part of my day was yet to come. As I was on my way home, my wife called. Thankfully, I was not driving because she definitely needed to talk to me. We were on the phone together for the entire twenty minutes that it took to get me home. Then, we talked for another hour upon my arrival. My wife had an extremely difficult interaction with another parent today. It is even more frustrating because this person was essentially attacking our daughter. While some of what this individual said might be true, the reality is that this person was only looking at the situation from one point of view, not taking any of the possibilities for our daughter into account. Even more remarkable, the other person dismissed comments from my wife about some of the struggles that our daughter has experienced. By the time I got home, my wife was seething. By the time our conversation ended, I had worked my own way through seething and was simply sad and disappointed. I think the great misfortune in all of this is that as a result of one parent being overly aggressive and overly involved, two children may lose a friendship. Hopefully, that will not be the case.
I have no doubt that tomorrow will arrive with its own challenges. I hope that narcolepsy will allow me the energy I need to keep working my way back to an even keel. If not, I will do what I can, take a breath, and work to let go of all of my challenges and disappointments.
Monday, July 6, 2009
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.
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.
Sunday, July 5, 2009
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!
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!
Saturday, July 4, 2009
Fun & Free Flowing Fourth
Happy Fourth of July! Today was a good day in a number of ways. Even though I have oodles of things to do, I found a way to let go of those concerns and allowed myself to enjoy the day. Even better, I was productive this morning and completed the evaluations for the students in my summer class. Then, my wife and I had a fantastic time exploring the Trader Joe's that just opened in Saint Paul. We have had various items from Joe's in the past, but this was our first foray into an actual store. We were in a hurry, but were certainly impressed. I would have liked to see a few more gluten-free items, and Joe's will not replace my co-op, but the store does have many impressive items. I remain perplexed as to how they can offer organic and fair trade items at such low prices, but I intend to give them the benefit of the doubt, although I do plan to do some research just to make sure.
Anyway, after making some fun purchases at Trader Joe's we headed to the lake home of a friend's mom. Our daughter was already there. We then spent the afternoon relaxing, eating, chatting, and laughing with family friends. We even got to play in a bizarre family kickball game. The entire thing was a hoot. My daughter did have some tense moments, and my poor wife had to fight fireworks traffic (and ridiculously poor planning by the Blaine Police Department), but on the whole it was a great day for all of us. Even the late return time did not get me down because I got to see fireworks for the first time in years. I have no doubt that I will pay for a midnight bedtime for a day or two, but it is important to have fun from time to time.
The realities of narcolepsy make so many days difficult, but today was a sweet gift. I certainly was sleepy throughout the day, but the whole purpose of the day was simply to relax. Thus, it was perfectly fine to be sleepy. I am proud of myself for being present with the fun and low-key aspect of the entire day, rather than obsessing over the numerous things that I was not accomplishing. I do think that I am getting better at living with this disease. That idea might be the most freeing thought that I have had on this fantastic Fourth.
Anyway, after making some fun purchases at Trader Joe's we headed to the lake home of a friend's mom. Our daughter was already there. We then spent the afternoon relaxing, eating, chatting, and laughing with family friends. We even got to play in a bizarre family kickball game. The entire thing was a hoot. My daughter did have some tense moments, and my poor wife had to fight fireworks traffic (and ridiculously poor planning by the Blaine Police Department), but on the whole it was a great day for all of us. Even the late return time did not get me down because I got to see fireworks for the first time in years. I have no doubt that I will pay for a midnight bedtime for a day or two, but it is important to have fun from time to time.
The realities of narcolepsy make so many days difficult, but today was a sweet gift. I certainly was sleepy throughout the day, but the whole purpose of the day was simply to relax. Thus, it was perfectly fine to be sleepy. I am proud of myself for being present with the fun and low-key aspect of the entire day, rather than obsessing over the numerous things that I was not accomplishing. I do think that I am getting better at living with this disease. That idea might be the most freeing thought that I have had on this fantastic Fourth.
Friday, July 3, 2009
Delightful Date
Occasionally, my wife and I find time to go on a date. Sadly, such an event is frighteningly rare. We did manage to go on a date today, though. It was wonderful! My only frustration is that going out to lunch and seeing a movie wiped me out. Hopefully, we can still have some snuggling and romance tonight. Nonetheless, the chance to let everything else go and to get away with each other was glorious.
Our daughter headed off to a friend's lake cabin today. Thus, we have the house to ourselves. I made the date suggestion last night when we knew that we would be childless for most of today. My wife jumped at the idea immediately. We even handled the dining choice well. Initially, I tried to wrack my brain for some place fun to eat near the theater, but narcolepsy does quite a number on memory and decision-making. As a result, we decided to drive toward the theater and then explore for a place to eat. The town preceding the movie theater is North Saint Paul. We eventually discovered downtown in North Saint Paul. That alone might have been worth the trip. Even though the city is technically an "inner ring suburb," the place felt like the main drag of any out state town in Minnesota. It was wonderful!
We decided to eat at Cindy Jean's. There were a few other choices, but the Legion Hall looked iffy and the bars were not the scene we wanted today. Cindy Jean's was a riot. It has three tables and funky decor. There is a huge flat screen TV and a Wii. In fact, Cindy Jean's apparently hosts regular Wii tournaments. The sandwiches were fantastic, and we thoroughly enjoyed the fun meal that we had there. We did feel bad for the other couple eating there. They had no cash, and Cindy Jean's does not take plastic. Thus, the poor guy went looking for a cash machine. It sounded like he had to pay a bank to cash his check. And, he was gone for 20 minutes.
We then headed for the theater. We saw Sam Mendes' new film Away We Go. It stars Maya Rudolph and John Krasinski, and it is fantastic. My wife had seen some reviews that had raved about the film. It is beautifully shot, and the main characters definitely reminded us of each other. Krasinski and Rudolph work well together, and their characters make an odd, but well-matched couple (which is part of the reason we both identified with them - my wife is definitely the yin to my yang). As much as I enjoyed the film, I think the best part might have been reflecting on the film with my wife as we drove home. Nothing is more thrilling to me than getting a chance to be with my amazing wife.
Perhaps what made this day most special is that Monday (June 29) was our 18th anniversary. We did not have time to celebrate in any meaningful way. We definitely acknowledged the event, but having this sweet and simple date today was a perfect celebration for us (and of us). I adore my wife. She is the rock of our family. She is also the most wonderful, intelligent, gorgeous, exciting, sexy, sweet, gentle, driven, and gifted woman that I have ever met. I am blessed to be her husband. I know that I would not be handling my narcolepsy nearly as well without her constant love and support. Thankfully, our relationship goes stronger and deeper with each passing moment and every passing day.
Our daughter headed off to a friend's lake cabin today. Thus, we have the house to ourselves. I made the date suggestion last night when we knew that we would be childless for most of today. My wife jumped at the idea immediately. We even handled the dining choice well. Initially, I tried to wrack my brain for some place fun to eat near the theater, but narcolepsy does quite a number on memory and decision-making. As a result, we decided to drive toward the theater and then explore for a place to eat. The town preceding the movie theater is North Saint Paul. We eventually discovered downtown in North Saint Paul. That alone might have been worth the trip. Even though the city is technically an "inner ring suburb," the place felt like the main drag of any out state town in Minnesota. It was wonderful!
We decided to eat at Cindy Jean's. There were a few other choices, but the Legion Hall looked iffy and the bars were not the scene we wanted today. Cindy Jean's was a riot. It has three tables and funky decor. There is a huge flat screen TV and a Wii. In fact, Cindy Jean's apparently hosts regular Wii tournaments. The sandwiches were fantastic, and we thoroughly enjoyed the fun meal that we had there. We did feel bad for the other couple eating there. They had no cash, and Cindy Jean's does not take plastic. Thus, the poor guy went looking for a cash machine. It sounded like he had to pay a bank to cash his check. And, he was gone for 20 minutes.
We then headed for the theater. We saw Sam Mendes' new film Away We Go. It stars Maya Rudolph and John Krasinski, and it is fantastic. My wife had seen some reviews that had raved about the film. It is beautifully shot, and the main characters definitely reminded us of each other. Krasinski and Rudolph work well together, and their characters make an odd, but well-matched couple (which is part of the reason we both identified with them - my wife is definitely the yin to my yang). As much as I enjoyed the film, I think the best part might have been reflecting on the film with my wife as we drove home. Nothing is more thrilling to me than getting a chance to be with my amazing wife.
Perhaps what made this day most special is that Monday (June 29) was our 18th anniversary. We did not have time to celebrate in any meaningful way. We definitely acknowledged the event, but having this sweet and simple date today was a perfect celebration for us (and of us). I adore my wife. She is the rock of our family. She is also the most wonderful, intelligent, gorgeous, exciting, sexy, sweet, gentle, driven, and gifted woman that I have ever met. I am blessed to be her husband. I know that I would not be handling my narcolepsy nearly as well without her constant love and support. Thankfully, our relationship goes stronger and deeper with each passing moment and every passing day.
Wednesday, July 1, 2009
Money Madness (or Maddening Money)
Although I rarely discuss it here, money tends to be one of my largest sources of stress. I am almost ashamed to admit it, but money tends to have little meaning to me. That might be an okay situation if I were a single guy without a chronic illness, but I am a married man, a dad, and a person with narcolepsy. As a result, I definitely need to be conscious of my spending. I also need to provide assistance to my amazing wife. While she is certainly a better (and wiser) money manager than I, the reality of our lives is that much of the tracking of our spending has fallen to me. I am good at the "organizational" aspect of that, but I become quickly overwhelmed when it comes to the decision-making aspect of the finances.
Fortunately, I have only had a small number of complete errors when it has come to our money. We are also blessed in that I am able to supplement my wife's income because I can still work part-time. At the same time, keeping track of our bills and our expenses has gotten more and more difficult for me. To function in such a capacity, I need to be extremely focused. Unfortunately, I expend extensive energy to be that person. Thus, I am either neglectful of my other "duties" - being a husband, being a dad, being a teacher, and taking care of me - or I miss a bill payment here and there. Because of my commitment to living in the moment, the latter has happen more frequently than the former. While that is good, I think, it also sending my wife through the roof (and does not do much for my shame based thinking). We are attempting to shift much of the bill paying back to her, but she has so much else to do that it has been difficult.
The larger reason that this is on my mind, though, is the time and energy that I have used over the past two days. We need to change our "primary" credit card due to the merger of Northwest Airlines and Delta. For years we have used a Worldperks credit card to pay for many things. Our reasoning has been simple. We fly four or five times a year and using that card has gotten us at least one free (or reduced) ticket each year. Since we live in Minnesota, Northwest was our primary (perhaps only) option for the variety of flight times that we often needed. Now, Delta will be that airline. They only want one credit card option and like American Express. While I could care less which card it is that I am using, it is driving me insane to remember/discover all of the places that we have set up our current card as the payment option.
If I don't do this, we will either need to activiate the "new" card from our current bank simply to be safe. Then, any charges will go into a "new flex points" account for travel on any airline, but the AmEx card will get most of the charges, so we will never use the "flex points." Obviously, this is a minor issue in a world which is seeing a global recession, Iranian oppression, and numerous human rights violations. At the same time, it is driving my tiny brain into the ground. I have changed most of our pre-set card situations - I think. Still, one site would not allow me access, and another would not let me remove the defunct card. I added a new one, but the old one is loved too much perhaps. I bet it won't be so popular if I accidentally charge something to that card.
Even having gotten most of these updated, I am nervous about what I might have missed. The reality is that my narcolepsy undermines both my memory and my self-confidence. And, in the event I do miss some payment, I will get to wrestle with that guilt too. Hooray. Hopefully, I can let this junk go. The most important thing is that I am making progress on it. I also need to remember that we are extremely lucky to have a steady and solid income. As frustrating as these financials worries are (and narcolepsy is), we are truly blessed and want for nothing.
Fortunately, I have only had a small number of complete errors when it has come to our money. We are also blessed in that I am able to supplement my wife's income because I can still work part-time. At the same time, keeping track of our bills and our expenses has gotten more and more difficult for me. To function in such a capacity, I need to be extremely focused. Unfortunately, I expend extensive energy to be that person. Thus, I am either neglectful of my other "duties" - being a husband, being a dad, being a teacher, and taking care of me - or I miss a bill payment here and there. Because of my commitment to living in the moment, the latter has happen more frequently than the former. While that is good, I think, it also sending my wife through the roof (and does not do much for my shame based thinking). We are attempting to shift much of the bill paying back to her, but she has so much else to do that it has been difficult.
The larger reason that this is on my mind, though, is the time and energy that I have used over the past two days. We need to change our "primary" credit card due to the merger of Northwest Airlines and Delta. For years we have used a Worldperks credit card to pay for many things. Our reasoning has been simple. We fly four or five times a year and using that card has gotten us at least one free (or reduced) ticket each year. Since we live in Minnesota, Northwest was our primary (perhaps only) option for the variety of flight times that we often needed. Now, Delta will be that airline. They only want one credit card option and like American Express. While I could care less which card it is that I am using, it is driving me insane to remember/discover all of the places that we have set up our current card as the payment option.
If I don't do this, we will either need to activiate the "new" card from our current bank simply to be safe. Then, any charges will go into a "new flex points" account for travel on any airline, but the AmEx card will get most of the charges, so we will never use the "flex points." Obviously, this is a minor issue in a world which is seeing a global recession, Iranian oppression, and numerous human rights violations. At the same time, it is driving my tiny brain into the ground. I have changed most of our pre-set card situations - I think. Still, one site would not allow me access, and another would not let me remove the defunct card. I added a new one, but the old one is loved too much perhaps. I bet it won't be so popular if I accidentally charge something to that card.
Even having gotten most of these updated, I am nervous about what I might have missed. The reality is that my narcolepsy undermines both my memory and my self-confidence. And, in the event I do miss some payment, I will get to wrestle with that guilt too. Hooray. Hopefully, I can let this junk go. The most important thing is that I am making progress on it. I also need to remember that we are extremely lucky to have a steady and solid income. As frustrating as these financials worries are (and narcolepsy is), we are truly blessed and want for nothing.
Tuesday, June 30, 2009
Massive Mayhem
I truly love that even the transition into summer break takes days of adjustment. One would think that a guy with narcolepsy would find it thrilling to begin a month and a half of relaxing. If only it were that easy. As I continue to remind myself, ANY change in my daily routine throws me for a loop. I tend to be more tense and to snap at people more rapidly. While I am making the shift better this time, I still find it frustrating - and stupid. Sadly, I am sure that no matter how long I continue to "learn" about living with narcolepsy, the act of moving from one daily schedule to another will continue to be difficult for me.
The up side is that I did get up today and exercise. That alone is a huge step for me. Unfortunately, I know that I am still recovering from last week. Thus, the exercise sapped me for a couple of hours. After resting, though, I got some work done. I even decided to have some fun after that, but invariably that led to trouble. My daughter decided that she wanted to play with the Wii too. Things were going great, but then after we each did our "Wii Fitness" on Wii Sports - which is an individual activity - she simply started doing something else individually. When I questioned her, I got a rude retort. I have no doubt that my daughter thought that she was being funny, but when I challenged her on that comment, I got a second rude retort. Since I was tired and crabby, I snapped back and a lovely fight ensued. It then continued as my attempted to reconcile. And, adding a second layer to my disappointment in myself, my wife was still home and found herself embroiled in the disagreement.
My daughter and I were able to reconcile and apologize to each other, but I hate that I was unable to keep myself in check when my daughter acted like a normal pre-teen. While her behavior was not appropriate, I can't lash out at her. I did contain my frustration far better than I have in the past, but the reality is that I still reacted rashly and immaturely. As the parent, I need to give her the space to be angsty, and I need to be patient enough to let her settle down before re-engaging about the situation. I do know that I happened things "better," but I need to keep pushing myself on this. The narcolepsy definitely complicates the situation, but my relationship with my daughter is far too important to let this medical menace jeopardize it.
The other difficult item to accept today was the fact that I nearly fell asleep in a chair tonight. If that was happening at 10 PM, I would be okay with it, but I was dozing and drifting heavily at 6 PM. Now, I know that I had a productive (and stressful) day. I also know that transitional periods are tough for me. But, it remains horribly humbling that I spent most of my day sitting around, yet I can't stay awake past 6 PM even with 60 mg of amphetamine in my body. Seriously, you GOTTA love this condition - NOT! Obviously, I rallied. I even got a few other things done. Hopefully, July will hold more hope for a solid schedule, smoother transitions into my new days, and for more patience with my incredible and wonderful daughter.
The up side is that I did get up today and exercise. That alone is a huge step for me. Unfortunately, I know that I am still recovering from last week. Thus, the exercise sapped me for a couple of hours. After resting, though, I got some work done. I even decided to have some fun after that, but invariably that led to trouble. My daughter decided that she wanted to play with the Wii too. Things were going great, but then after we each did our "Wii Fitness" on Wii Sports - which is an individual activity - she simply started doing something else individually. When I questioned her, I got a rude retort. I have no doubt that my daughter thought that she was being funny, but when I challenged her on that comment, I got a second rude retort. Since I was tired and crabby, I snapped back and a lovely fight ensued. It then continued as my attempted to reconcile. And, adding a second layer to my disappointment in myself, my wife was still home and found herself embroiled in the disagreement.
My daughter and I were able to reconcile and apologize to each other, but I hate that I was unable to keep myself in check when my daughter acted like a normal pre-teen. While her behavior was not appropriate, I can't lash out at her. I did contain my frustration far better than I have in the past, but the reality is that I still reacted rashly and immaturely. As the parent, I need to give her the space to be angsty, and I need to be patient enough to let her settle down before re-engaging about the situation. I do know that I happened things "better," but I need to keep pushing myself on this. The narcolepsy definitely complicates the situation, but my relationship with my daughter is far too important to let this medical menace jeopardize it.
The other difficult item to accept today was the fact that I nearly fell asleep in a chair tonight. If that was happening at 10 PM, I would be okay with it, but I was dozing and drifting heavily at 6 PM. Now, I know that I had a productive (and stressful) day. I also know that transitional periods are tough for me. But, it remains horribly humbling that I spent most of my day sitting around, yet I can't stay awake past 6 PM even with 60 mg of amphetamine in my body. Seriously, you GOTTA love this condition - NOT! Obviously, I rallied. I even got a few other things done. Hopefully, July will hold more hope for a solid schedule, smoother transitions into my new days, and for more patience with my incredible and wonderful daughter.
Sunday, June 21, 2009
Sunday Struggles
Today is Father's Day, and yet the only real emotion I have managed is frustrated anger. We went to a Minnesota Twins game last night to see an old friend. The game was good, except that the Twins lost, but we got home late. Because I had food at the game past 8 p.m., I stayed up until 11:15. When I finally took my Xyrem and went to bed, I was overly warm. My wife and I were intimate for a time, but things just were not right. Plus, the Xyrem can make me more than a little goofy. I did finally fall asleep. I even managed to take my second dose last night, although I once again slept through my alarm.
When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.
My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.
Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.
Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.
Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.
Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).
I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.
When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.
My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.
Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.
Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.
Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.
Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).
I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.
Tuesday, June 16, 2009
Wonders of Wii
I have loved video games my entire life. Growing up in the 70s and 80s, I experienced first hand the arrival of home video games. I also fall into the primary age group to have "lived" the hey-day of the video arcade. My summer before ninth grade, I spent hours nearly every day in the local arcade. While part of me regrets those lost hours, another still longs for the sheer joy of honing my skills at Galaga and Tempest.
Although I have own a couple of game systems as an adult (a Super Nintendo and a few "plug in" consoles that hold 5-20 games), my wife and I have purposely avoided purchasing any of the ever improving systems during the last 15 years. The primary reason truly is my inability to stay sane when I have a game system. Certainly, I chafe at the idea that I am incapable of remaining grounded when there is a game to "beat," but I also know that the decision has been a wise one.
Given my narcolepsy, I shudder to think the state I might be in today if we had purchased a Game Cube or an X-Box. Heck, I have even avoided computer-based games for the same reason. I have no doubt that Worlds of Warcraft would have stolen hours of sleep for weeks on end. In fact, I would be willing to bet that gaming easily might have masked the depth and extent of my excessive daytime sleepiness for at least four or five more years.
The irony is that I am writing this the day after I purchased a Wii system - with my wife's permission and approval. I might be a risk-taker at times, but I am not an idiot. While I do worry that we could eventually acquire a game or two that might tempt me into a few "all-nighters," I am more confident about my maturity and decision-making. The reality is that I know what happens when I push, and more often than not, I am unwilling to sacrifice the next two or three days simply to "enjoy" a little friviolity. Let's hope I am still saying that next month and next year.
We decided to get the Wii because I am struggling horribly to work exercise into my routine. I feel like I am finally beginning to learn how to balance home and work and me. That in itself is a massive accomplishment for me. But, I also know that I will be healthier, happier, and more complete if I can find even a modicum of fitness. Enter the Wii. My wife and I spent Saturday night with my sister and her husband. They have had a Wii for awhile, but this was our first couples "Wii night." Everyone had a blast playing a wide variety of games, but at the end of the evening I got a chance to try Wii Fit and the Balance Board. Not only did I find it fun, but I also realized that it could easily be a missing step in getting back into some type of exercise groove.
The beauty of Wii Fit is that I don't have to GO anywhere. My narcolepsy makes me so wiped out at times that the idea of driving to a gym, or even running to the lake a mile from our house, is simply not an option. I worry that I will exhaust myself. If I do that and then need to drive home, I risk my safety and that of others. If I do it and am now a mile from my house, I am foolish enough (and male enough) that I will still try to run home. Then, I will get sick. It happened repeatedly last summer with ultimate and with yardwork.
Instead of risking those things, I can now plug in my Wii and do some yoga and light conditioning work in front of my TV. It also "feels" like a game with vocal support from the etrainer. The Wii can't be my only exercise, but it is a perfect place to start. I would love to pretend that I am capable of pushing myself to establish a workout routine on my own, but I am not. I have nearly forty-one years of failure as evidence. I do best, in terms of fitness, when I am part of something. The Wii tracks my progress for me. And, the fat little Mii, that is ME, provides its own motivation. I know this is going to help me.
I feel blessed to have a wife who supports me so much that she is willing to change her mind about getting a Wii. I also am proud that I bought the Wii last night and have already used it twice to "workout." That is two more workouts than I have done in months. Pretty good for less than 24 hours. Still, it is not lost on me that while I am starting strong, I have done that before to taper to nothing within days. I believe this will be different, though. I need this and the exercise will take the place of some of my other recreation. Building up my strength slowly will also prevent my system from crashing. That is also a good thing (and a chance from the past).
Although I have own a couple of game systems as an adult (a Super Nintendo and a few "plug in" consoles that hold 5-20 games), my wife and I have purposely avoided purchasing any of the ever improving systems during the last 15 years. The primary reason truly is my inability to stay sane when I have a game system. Certainly, I chafe at the idea that I am incapable of remaining grounded when there is a game to "beat," but I also know that the decision has been a wise one.
Given my narcolepsy, I shudder to think the state I might be in today if we had purchased a Game Cube or an X-Box. Heck, I have even avoided computer-based games for the same reason. I have no doubt that Worlds of Warcraft would have stolen hours of sleep for weeks on end. In fact, I would be willing to bet that gaming easily might have masked the depth and extent of my excessive daytime sleepiness for at least four or five more years.
The irony is that I am writing this the day after I purchased a Wii system - with my wife's permission and approval. I might be a risk-taker at times, but I am not an idiot. While I do worry that we could eventually acquire a game or two that might tempt me into a few "all-nighters," I am more confident about my maturity and decision-making. The reality is that I know what happens when I push, and more often than not, I am unwilling to sacrifice the next two or three days simply to "enjoy" a little friviolity. Let's hope I am still saying that next month and next year.
We decided to get the Wii because I am struggling horribly to work exercise into my routine. I feel like I am finally beginning to learn how to balance home and work and me. That in itself is a massive accomplishment for me. But, I also know that I will be healthier, happier, and more complete if I can find even a modicum of fitness. Enter the Wii. My wife and I spent Saturday night with my sister and her husband. They have had a Wii for awhile, but this was our first couples "Wii night." Everyone had a blast playing a wide variety of games, but at the end of the evening I got a chance to try Wii Fit and the Balance Board. Not only did I find it fun, but I also realized that it could easily be a missing step in getting back into some type of exercise groove.
The beauty of Wii Fit is that I don't have to GO anywhere. My narcolepsy makes me so wiped out at times that the idea of driving to a gym, or even running to the lake a mile from our house, is simply not an option. I worry that I will exhaust myself. If I do that and then need to drive home, I risk my safety and that of others. If I do it and am now a mile from my house, I am foolish enough (and male enough) that I will still try to run home. Then, I will get sick. It happened repeatedly last summer with ultimate and with yardwork.
Instead of risking those things, I can now plug in my Wii and do some yoga and light conditioning work in front of my TV. It also "feels" like a game with vocal support from the etrainer. The Wii can't be my only exercise, but it is a perfect place to start. I would love to pretend that I am capable of pushing myself to establish a workout routine on my own, but I am not. I have nearly forty-one years of failure as evidence. I do best, in terms of fitness, when I am part of something. The Wii tracks my progress for me. And, the fat little Mii, that is ME, provides its own motivation. I know this is going to help me.
I feel blessed to have a wife who supports me so much that she is willing to change her mind about getting a Wii. I also am proud that I bought the Wii last night and have already used it twice to "workout." That is two more workouts than I have done in months. Pretty good for less than 24 hours. Still, it is not lost on me that while I am starting strong, I have done that before to taper to nothing within days. I believe this will be different, though. I need this and the exercise will take the place of some of my other recreation. Building up my strength slowly will also prevent my system from crashing. That is also a good thing (and a chance from the past).
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