I awoke this morning in a huge hotel room. The national Narcolepsy Network patient conference begins today in Jacksonville, Florida; I arrived late last night (technically, early this morning). While I remain uneasy about being here, I must confess that my beautiful view of the Saint John's River certainly makes me glad for the break from my daily grind. I also know that I will enjoy many aspects of the conference. Hopefully, I deepen some of the friendships with other PWNs that I began at last year's conference. And, many new PWNs await me as well.
At the same time I could not help feeling loss and regret as I ate during my layover in Atlanta. More than anything, I want to help and connect with other PWNs. While this blog does that, my primary outlet for the past year has been the Narcolepsy Network forums. At least it was until mid-September. I deeply believe that the work of some dear friends in those forums is a huge reason for Narcolepsy Network's recent upswing in membership. Certainly, the number of people using the forums exploded during the last year, but I also know that Narcolepsy Network saw tremendous growth in paid memberships during that time as well. Unfortunately, the people most responsible for making the forums a welcoming and safe place for PWNs will not be with at this conference, nor do they oversee the forums any longer. I remain utterly bewildered as to how the people running Narcolepsy Network could be so obtuse as to not understand the vital role that those forums and individuals have played in the organizations sudden expansion.
The crux of it all for me is that I see the internet as a PWN's most vital tool. Few of us are able to find doctors who truly understand our condition. Although many larger areas do have local support groups, most PWNs need far more connection than a few meetings a year can give. Those factors, added to the reality that many PWNs literally know no one who has their condition until they find a support group (if they can find one), mean that the internet is the one location that a PWN can interact with other PWNs on a consistent basis. Up until mid-September, I would have believe that such a reality was obvious to everyone associated with Narcolepsy Network. Now, though, I have serious doubts.
My experience at last year's national conference was incredible. Certainly, being some place where I knew that 300 other people truly "understood" narcolepsy was a primary component of my joy, but far more significant was meeting face-to-face with many of the people that I had meet online. I am guessing that I will have a similar reaction this year. But, what vexes me to no end is that I doubt that other PWNs will get to have that opportunity in years to come. Since things changed on the Narcolepsy Network forums, I do not see the same level of interaction and vitality there. In fact, it is strange to see that in August the forums were adding 20 new members within 2 to 3 days, but now it might take a week or more to add 20 people. My observation is not researched or vetted, but it definitely seems like the energy in the forums is diminishing.
Clearly, I would love to see my friends back running the Narcolepsy Network forums, but deeper than that I honestly saw those forums as a way to improve significantly life for other PWNs. So many of us struggle to interact with the world because our enery is so limited. But, going online takes far less effort, and one need not drive somewhere to do it. I left my position as a moderator on the forums because of the way my friends had been treated, but I also did it because I did not (and still do not) trust the decision-making of the current board when it comes to Narcolepsy Network's online presence. If they honestly had no idea how active and energetic their forums were, it is a sad reality. Certainly, many other online support groups for narcolepsy exist, but Narcolepsy Network's advantage was (and still is if someone can right the ship) that they are a federally recognized non-profit with a national convention. Adding a strong and lively online community to that would make them the best resource anywhere for people with narcolepsy. Now, I wonder what will happen.
Of course, I could be crazy. Narcolepsy Network might have thrived in the past year due to some other reason. Only time will tell. Also, the other support groups, particularly the Facebook Narcolepsy Support Group and a new site Bite Size Life, might adequately fill any void created by the changes at Narcolepsy Network's forums. Another definite possibility is a group in Second Life called Slumber Society. In the end, though, I need something for me. Selfishly (which I need to make a priority more often for myself), I need to find something that will give me the same fulfillment that my moderating on the Narcolepsy Network forums. Yes, I could "ask" to become a moderator for Narcolepsy Network again, but I will not work for the people currently "in charge" of the forums. As far as I am concerned, they haven't a clue about running a forum effectively. I also know that I can't afford to put in the energy that I did over the past year only to have it ripped away again. Thus, I find myself in limbo. I need to help other PWNs; it is something I do well. But, I also am struggling with my own energy so much that I do not have the time to figure out where to put my (currently non-existent) "narcolepsy support" energy. Time will eventually guide me in the correct direction, and I have learned enough to allow myself to trust the process. Unfortunately, that does not lighten my current mood, nor does it mitigate the hurt that I still feel from the events in September. Still, I know this chapter is just one more lesson that narcolepsy has for me to learn.
Showing posts with label Depression. Show all posts
Showing posts with label Depression. Show all posts
Friday, October 23, 2009
Tuesday, October 20, 2009
Regularly Random Routine
One thing I know helps me is a set routine. Unfortunately, I do not feel like that has happened since the previous school year ended. I have come to expect that my summers will be all over the place. Because I teach an intensive creative writing course and then we travel, summer tends to be an unending cascade of starts and stops. Since my profession allows me two and a half months of unpaid vacation, I usually handle the rudderless aspect of June, July, and August as well as I can. Usually, though, the arrival of September affords me the blessing of a fairly standard daily schedule. For some reason I have yet to find that rhythm this year.
Certainly, the crazy weekends that took place for my family in September exacerbated the situation, but it goes well beyond that. For the first time that I can remember, I had more of a pattern to my day in August than I do right now. Rather than getting easier, my days seem to be growing in complexity. I have no doubt that much of that is in my head and in my reaction to my narcolepsy. Nonetheless, my days feel much more fragmented. I am weathering them well, partly because I have come to accept the reality that I have a disability. Still, I find my anger and frustration rising to the surface far more often of late. I also know that my depression seems to be growing in strength lately. I also find it difficult to "be hopefully" while also "accepting my realities." As always life and narcolepsy seem to be a paradoxical and oxymoronic as the title of this post!
Certainly, the crazy weekends that took place for my family in September exacerbated the situation, but it goes well beyond that. For the first time that I can remember, I had more of a pattern to my day in August than I do right now. Rather than getting easier, my days seem to be growing in complexity. I have no doubt that much of that is in my head and in my reaction to my narcolepsy. Nonetheless, my days feel much more fragmented. I am weathering them well, partly because I have come to accept the reality that I have a disability. Still, I find my anger and frustration rising to the surface far more often of late. I also know that my depression seems to be growing in strength lately. I also find it difficult to "be hopefully" while also "accepting my realities." As always life and narcolepsy seem to be a paradoxical and oxymoronic as the title of this post!
Sunday, October 18, 2009
Tired and Troubled
Somehow, I have managed to let another month pass without posting. Writing about this crazy condition is vitally important to me, but the "basics" of my life have felt horribly overwhelming. I also think that either my narcolepsy is intensifying, or my amphetamine is diminishing in its impact. of course, there is actually no way to determine that. All I know is that I have continued to "cut back" what I do, and I still find it harder to do this lightened load - which I find horribly frustrating.
My school year is actually going well. I have been better about correcting and more prepared for my teaching. I am also doing a better job of limiting myself to my part-time hours, rather than spending excessive amounts of time at school (well outside of my contract time). That being said, the year has also been tremendously draining. Our teaching team was tremendously successful last year, but I think we are all feeling pressure to be "better." While I think we are doing that, we are putting stress on ourselves. We have also developed a new approach to homework. It works well for many of our students, but two groups are struggling. Our students with poor time management skills are not spacing out their work and turn in poorly done materials. On the other hand, our overachieving students have been trying to do two to three hours of homework each night. Our expectation is that student would spend two to three hours maximum per week. As a result, we faced a number of questions at conferences from parents and guardians. Thankfully, most of them accepted our explanation, but a few still felt like we should change what we are doing because their daughter or son was continuing to do two to three hours per night. I am empathetic, but fail to see how we are causing the problem.
The other thing contributing to my struggles is the bizarre course of events over the last two months in my house. Our September had more activities and events that I can ever remember us having. The worst weekend involved my wife getting me at school at 2:45 PM on a Friday. We spent the next three hours and thirteen minutes traveling to Duluth (a trip that should take about two hours). We arrived for a family wedding with two minutes to spare (literally). Then, we checked into the hotel and attended the reception. I then got up early the next morning to drive my daughter back to the Saint Paul for a voice lesson. It was her first lesson, and the directions given by the organization were flawed to say the least. We managed to arrive only two minutes late for the voice lesson, but the stress of it all buried me. My wife had stayed in Duluth. When she returned on Sunday, I was still recovering, but there was a tremendous amount of work that needed to be done. I pushed myself to do it, and I exploded at my family. Then, I got to school on Monday so exhausted that my team members sent me home. It has been rocky since then, but is finally beginning to level out.
In the midst of all of that, my relationship with Narcolepsy Network turned markedly sour. They let their web master go and cut those of us who were moderators from access to the primary tool that we used to help moderate the site. When I emailed to express my disappointment in the entire situation, I received two emails. One was heartfelt and personal, explaining that I was a valued resource. The other was a generic message to all of the current moderators, saying essentially the same thing. Unfortunately for Narcolepsy Network, they thought the first version of the generic message to me did not work, and thus they forwarded the template. Because of that I learned that they had sent the same message to two moderators who had done nothing for over six months. Both of those individuals had been alienated by the inaction and the rude comments of board members. I then wrote an even more terse email questioning how they could "value" my work when they clearly had no idea what moderators were active and which were not. The sad reality is that many of the board members STILL have not gone to the forums, even after the things that took place. As a result of it all, I have done little online posting - at Narcolepsy Network or on Facebook. I am even struggling to do work for my local support group (which I essentially help to run). I just hate the idea of spending hours working on things, only to have some uninformed baord member swoop in and yank it away. Much of my frustration with the Narcolepsy Network centers on a new website that the web master was developing. He had is essentially ready to go live last November, but the board would never approve it. I personally spent well over 20 to 30 hours writing and editing content for the site, but never heard anything from the board, particularly the ones who were supposed to be overseeing the site. The even more irritating part is that while the new site was constantly being labeled as "un-ready," the current Narcolepsy Network site was live and contained far more errors and inaccuracies than the "un-ready" site. Because the web master is my friend, I stuck with the process, hoping that we would eventually be given approval. Instead, they fired him. Certainly, there may be legitimate reasons for what they did, although I have serious doubts. Even more unbelievable is that after hearing nothing about my work for the site, or about the quality of my writing, I received praise from three board members and a couple of employees of Narcolepsy Network.
I still want to "help" others with narcolepsy, but my own struggles are making it hard. I am heading to the national convention for Narcolepsy Network at the end of this week. I do plan to touch base with one member of the board to see if I can learn more about everything that happened. At the same time I remain unimpressed by the things I continue to see from Narcolepsy Network. For instance, even though I have clearly stated that I am not "helping" them at this time, I am STILL receiving emails from the people planning the conference. Today's series of emails was wonderfully ironic. Since all of the forum moderators "resigned" (after we were cut off), the board is hoping to find "motivated moderators" for the forums. Someone came up with the line, "We want MM for NN" - with "MM" refering to "motivated moderators." Since my initials ARE MM, I was sorely tempted to respond to the email, "You had MM, but chose to get rid of him," but felt like it would be sour grapes. In the end, it drives me crazy that the one national organization for people with narcolepsy seems to be clueless when it comes to growing the organization and to helping the vast number of PWNs who are searching for a lifeline while they are online.
My school year is actually going well. I have been better about correcting and more prepared for my teaching. I am also doing a better job of limiting myself to my part-time hours, rather than spending excessive amounts of time at school (well outside of my contract time). That being said, the year has also been tremendously draining. Our teaching team was tremendously successful last year, but I think we are all feeling pressure to be "better." While I think we are doing that, we are putting stress on ourselves. We have also developed a new approach to homework. It works well for many of our students, but two groups are struggling. Our students with poor time management skills are not spacing out their work and turn in poorly done materials. On the other hand, our overachieving students have been trying to do two to three hours of homework each night. Our expectation is that student would spend two to three hours maximum per week. As a result, we faced a number of questions at conferences from parents and guardians. Thankfully, most of them accepted our explanation, but a few still felt like we should change what we are doing because their daughter or son was continuing to do two to three hours per night. I am empathetic, but fail to see how we are causing the problem.
The other thing contributing to my struggles is the bizarre course of events over the last two months in my house. Our September had more activities and events that I can ever remember us having. The worst weekend involved my wife getting me at school at 2:45 PM on a Friday. We spent the next three hours and thirteen minutes traveling to Duluth (a trip that should take about two hours). We arrived for a family wedding with two minutes to spare (literally). Then, we checked into the hotel and attended the reception. I then got up early the next morning to drive my daughter back to the Saint Paul for a voice lesson. It was her first lesson, and the directions given by the organization were flawed to say the least. We managed to arrive only two minutes late for the voice lesson, but the stress of it all buried me. My wife had stayed in Duluth. When she returned on Sunday, I was still recovering, but there was a tremendous amount of work that needed to be done. I pushed myself to do it, and I exploded at my family. Then, I got to school on Monday so exhausted that my team members sent me home. It has been rocky since then, but is finally beginning to level out.
In the midst of all of that, my relationship with Narcolepsy Network turned markedly sour. They let their web master go and cut those of us who were moderators from access to the primary tool that we used to help moderate the site. When I emailed to express my disappointment in the entire situation, I received two emails. One was heartfelt and personal, explaining that I was a valued resource. The other was a generic message to all of the current moderators, saying essentially the same thing. Unfortunately for Narcolepsy Network, they thought the first version of the generic message to me did not work, and thus they forwarded the template. Because of that I learned that they had sent the same message to two moderators who had done nothing for over six months. Both of those individuals had been alienated by the inaction and the rude comments of board members. I then wrote an even more terse email questioning how they could "value" my work when they clearly had no idea what moderators were active and which were not. The sad reality is that many of the board members STILL have not gone to the forums, even after the things that took place. As a result of it all, I have done little online posting - at Narcolepsy Network or on Facebook. I am even struggling to do work for my local support group (which I essentially help to run). I just hate the idea of spending hours working on things, only to have some uninformed baord member swoop in and yank it away. Much of my frustration with the Narcolepsy Network centers on a new website that the web master was developing. He had is essentially ready to go live last November, but the board would never approve it. I personally spent well over 20 to 30 hours writing and editing content for the site, but never heard anything from the board, particularly the ones who were supposed to be overseeing the site. The even more irritating part is that while the new site was constantly being labeled as "un-ready," the current Narcolepsy Network site was live and contained far more errors and inaccuracies than the "un-ready" site. Because the web master is my friend, I stuck with the process, hoping that we would eventually be given approval. Instead, they fired him. Certainly, there may be legitimate reasons for what they did, although I have serious doubts. Even more unbelievable is that after hearing nothing about my work for the site, or about the quality of my writing, I received praise from three board members and a couple of employees of Narcolepsy Network.
I still want to "help" others with narcolepsy, but my own struggles are making it hard. I am heading to the national convention for Narcolepsy Network at the end of this week. I do plan to touch base with one member of the board to see if I can learn more about everything that happened. At the same time I remain unimpressed by the things I continue to see from Narcolepsy Network. For instance, even though I have clearly stated that I am not "helping" them at this time, I am STILL receiving emails from the people planning the conference. Today's series of emails was wonderfully ironic. Since all of the forum moderators "resigned" (after we were cut off), the board is hoping to find "motivated moderators" for the forums. Someone came up with the line, "We want MM for NN" - with "MM" refering to "motivated moderators." Since my initials ARE MM, I was sorely tempted to respond to the email, "You had MM, but chose to get rid of him," but felt like it would be sour grapes. In the end, it drives me crazy that the one national organization for people with narcolepsy seems to be clueless when it comes to growing the organization and to helping the vast number of PWNs who are searching for a lifeline while they are online.
Sunday, August 2, 2009
Wild (weird) Week
I am struggling to believe that I went aq week without posting. Sadly, that is in fact the reality, though. I found myself overwhelmed by meetings and events for most of the past week, and on Friday morning we departed on our trip. The strategic planning meetings on Monday and Tuesday were incredible, but they overwhelmed my body on Wednesday. I did still manage to get some housework and yard work done, though. Unfortunately, that effort coupled with more meetings and errands on Thursday left me FAR behind in my trip preparations. I stumbled out of our office on Thursday night around 11 PM, took one dose of Xyrem, and knew that I would need to get up as early as possible without a second one because I still had far too much to do. It was also the second night in a row with a solo dose.
I did manage to get up between 4:30 and 5 AM, but I still delayed our departure by nearly an hour and a half. Fortunately, my wife and daughter remained calm. I did do some driving (about an hour and a half in the middle of that leg), but it wiped me out. We also got stuck in ridiculous traffic around Chicago. Being the car so long and the fact that I was baking on my side of the car left me with a horrific headache. Fortunately, my wife and daughter still went and enjoyed the dunes on Lake Michigan. Unfortunately, I was unable to awaken for my second dose that night, thus it was three nights with only one dose of Xyrem. The trip from northern Indiana to Tennessee was even longer than Friday's drive. Again, my wife did a bulk of the driving, but I again took a 1.5 hour section in the middle. I was fading badly at the end, and we wound up snapping at each other, but reconciled over lunch. The worst part of the trip came at the end. After 550 miles of driving, we spent nearly two hours covering the final 30 miles because traffic into Pigeon Forge and Gatlinburg, TN is so awful. Again, I was shot and baking.
I did get an okay sleep last night, but am also frustrated because our resort only has ONE internet computer available for guests. At some of their other resorts, they at least make wifi available in the lobby of the clubhouse, but at this one they CHARGE for it! So, I am sitting in the parking lot of a McDonald's using my new Qwest WiFi (available through AT&T). Of course, it took forever to make the connection work right, so I am only going to get a couple of chances to write on my blog. Worse, I truly had hoped to do a little work while I was here. Hopefully, I will work something out. I certainly plan to enjoy our vacation, but this is the first long trip that we have taken with me trying to cope honestly with my narcolepsy. I functioned poorly today (at best). We are going hiking tomorrow and rafting on Tuesday. While I am excited about those activities, I am also worried that I will be unable to do much else. I know that will frustrate my wife and daughter. We will see what tomorrow brings, though. I need to run now. I need to get gas for our car and to get groceries.
I did manage to get up between 4:30 and 5 AM, but I still delayed our departure by nearly an hour and a half. Fortunately, my wife and daughter remained calm. I did do some driving (about an hour and a half in the middle of that leg), but it wiped me out. We also got stuck in ridiculous traffic around Chicago. Being the car so long and the fact that I was baking on my side of the car left me with a horrific headache. Fortunately, my wife and daughter still went and enjoyed the dunes on Lake Michigan. Unfortunately, I was unable to awaken for my second dose that night, thus it was three nights with only one dose of Xyrem. The trip from northern Indiana to Tennessee was even longer than Friday's drive. Again, my wife did a bulk of the driving, but I again took a 1.5 hour section in the middle. I was fading badly at the end, and we wound up snapping at each other, but reconciled over lunch. The worst part of the trip came at the end. After 550 miles of driving, we spent nearly two hours covering the final 30 miles because traffic into Pigeon Forge and Gatlinburg, TN is so awful. Again, I was shot and baking.
I did get an okay sleep last night, but am also frustrated because our resort only has ONE internet computer available for guests. At some of their other resorts, they at least make wifi available in the lobby of the clubhouse, but at this one they CHARGE for it! So, I am sitting in the parking lot of a McDonald's using my new Qwest WiFi (available through AT&T). Of course, it took forever to make the connection work right, so I am only going to get a couple of chances to write on my blog. Worse, I truly had hoped to do a little work while I was here. Hopefully, I will work something out. I certainly plan to enjoy our vacation, but this is the first long trip that we have taken with me trying to cope honestly with my narcolepsy. I functioned poorly today (at best). We are going hiking tomorrow and rafting on Tuesday. While I am excited about those activities, I am also worried that I will be unable to do much else. I know that will frustrate my wife and daughter. We will see what tomorrow brings, though. I need to run now. I need to get gas for our car and to get groceries.
Thursday, July 23, 2009
Doctor Downer (and difficult decision)
Seven weeks ago, I got a letter from my sleep doctor's office. Bluntly, it told me I better get in to see him, or they would stop filling my prescriptions. I called immediately, and today was the earliest appointment available. Given the tone of the letter, I checked if an appointment today would suffice. The individual assured me that things would be fine, as long as I had this appointment on the books. And, she was right. I got my July prescriptions in the mail, and my Xyrem was renewed without any hassle. Now, I have been wondering what my doctor would say, since I was basically 5 months late in coming into my appointment. Also, given my current state of mind, I was not completely sure what I would hope to discuss with him. I am handling things well, but I certainly would be open to exploring a different med, or looking at how my days tend to ebb and flow.
Invariably, I was ten minutes late to my appointment. A nice physician's assistant brought me back and did the initial intake. I told her that things were about as good as I thought they could be. I did not go into significant detail because I figured that I would have to say things twice. My BP was a tad high 130/90, and my weight still remains far too high. Their scale had me at 198, and I was 195 at home this morning (wearing fewer items of clothing). I did mention that I might want to discuss a different med, but also noted that NuVigil might not be the right direction since I had a terrible time with Provigil. I mentioned the relative success of my two medication holidays. She then left the room to let my doctor know that I was ready.
She then returned less than 5 minutes later. My sleep doctor felt that "as long as things are working, we should not switch meds." He also told her that unless I "needed" to see him, I was free to go. Now, I debated briefly about asking to stay so I could at least see him, but quickly decided that there would be little purpose in doing that. After all, I was still unsure as to what I hoped to discuss with him, and I was late for the appointment. So, I gathered my things and took my leave of the office. In the ultimate irony, the physician's assistant ask ME when I was supposed to return. I informed her that I had stretched my previous six month check-in by five months. I then said six months might make sense. And, as happened the LAST time I was in that office, the receptionist informed me that they do not schedule February appointments now. I need to call in November.
Of course, my PWN brain managed to put off that previous November phone call until I got the stern letter. I also was a tad flabbergasted that after the nature of that correspondence, I was not even SEEN by my doctor. I am sure that the physician's assistant is a sharp young woman, but she is not a specialist licensed to practice sleep medicine. It also does not help my mood that I did have time when she left the room to flip through the clinic's latest newsletter. While they "might" have cover Dr. Mignot's ground-breaking discovery in their Spring newsletter, the Summer one that was in the room had NOTHING about narcolepsy in it. It had lots on obstructive sleep apnea and lots on restless leg syndrome, but nothing about this wacko disease of mine. Of course, the clinic only employs pulmonary doctors, so I should not expect much. Except I do! If a clinic is supposed to treat narcolepsy, shouldn't they know something about it? Now, my doctor is a good guy, and he does know a decent amount about narcolepsy, but I think today is strong indication that I need to find a new doctor/clinic. Unfortunately, there are not other options, at least not good ones. Most other places in the Twin Cities are also pulmonary clinics. The one that is not tends to have a ridiculously narrow view of narcolepsy, meaning that they might actually tell me that I do NOT have narcolepsy. The added complication is that if I go somewhere else, they might be worse and could possible change my drugs in ways that make it impossible for me to work.
Sadly, I don't feel like I have any good choices here. I can stay where I am, continue to figure out on my own (and with my many PWN friends) how to handle this condition, and ensure that I can at least receive drugs that seem to work for me. The downside is that I might not EVER talk to my "doctor" again. And, if I do "need" to see him, will he honestly have genuine suggestions for me? Of course, leaving presents the possibility of finding a great doctor who can help me better understand myself and my disease, but that does not feel likely. In fact, I am honestly more worried that my current options (other than my actual clinic and doctor) would likely do more harm than good. The idea of having to re-tell my story (or even to be re-tested) while possibly being disparaged because my diagnosis is narcolepsy without cataplexy (or possibly mild/abnormal cataplexy which the guidelines still call "without cataplexy"). In fact, if that happened, it might be far more disrupting than just the mental stress. I might lose the meds I have, and if I can't work, I would also likely lose the small chance that I would have of a disability situation (if I don't have "narcolepsy," I have some condition of unknown etiology which would mean in legal terms that people think I am lazy).
Fortunately, I am not freaking out over this, but I do need to ponder a next step. I am not sure where to start. I know that there is an excellent neurologist in Saint Cloud, but have been remiss to try to see him because I doubt that insurance will cover it. And, I have no idea of how I would prove to my insurance company that I can't get proper care in the Twin Cities when many other PWNs "do." I actually know that they don't, but we are such a small population that it is easy to make blanket statements, particularly for large companies. Perhaps I am most frustrated by the fact that this brief stop in my doctor's office has added yet one more level of stress to my already growing anxiety of late. I truly do not have the time or the energy to commit to the process of searching for a new doctor. I also know that I hate the idea of "popping" into this office once or twice a year to simply pretend that my doctor checked on me.
Invariably, I was ten minutes late to my appointment. A nice physician's assistant brought me back and did the initial intake. I told her that things were about as good as I thought they could be. I did not go into significant detail because I figured that I would have to say things twice. My BP was a tad high 130/90, and my weight still remains far too high. Their scale had me at 198, and I was 195 at home this morning (wearing fewer items of clothing). I did mention that I might want to discuss a different med, but also noted that NuVigil might not be the right direction since I had a terrible time with Provigil. I mentioned the relative success of my two medication holidays. She then left the room to let my doctor know that I was ready.
She then returned less than 5 minutes later. My sleep doctor felt that "as long as things are working, we should not switch meds." He also told her that unless I "needed" to see him, I was free to go. Now, I debated briefly about asking to stay so I could at least see him, but quickly decided that there would be little purpose in doing that. After all, I was still unsure as to what I hoped to discuss with him, and I was late for the appointment. So, I gathered my things and took my leave of the office. In the ultimate irony, the physician's assistant ask ME when I was supposed to return. I informed her that I had stretched my previous six month check-in by five months. I then said six months might make sense. And, as happened the LAST time I was in that office, the receptionist informed me that they do not schedule February appointments now. I need to call in November.
Of course, my PWN brain managed to put off that previous November phone call until I got the stern letter. I also was a tad flabbergasted that after the nature of that correspondence, I was not even SEEN by my doctor. I am sure that the physician's assistant is a sharp young woman, but she is not a specialist licensed to practice sleep medicine. It also does not help my mood that I did have time when she left the room to flip through the clinic's latest newsletter. While they "might" have cover Dr. Mignot's ground-breaking discovery in their Spring newsletter, the Summer one that was in the room had NOTHING about narcolepsy in it. It had lots on obstructive sleep apnea and lots on restless leg syndrome, but nothing about this wacko disease of mine. Of course, the clinic only employs pulmonary doctors, so I should not expect much. Except I do! If a clinic is supposed to treat narcolepsy, shouldn't they know something about it? Now, my doctor is a good guy, and he does know a decent amount about narcolepsy, but I think today is strong indication that I need to find a new doctor/clinic. Unfortunately, there are not other options, at least not good ones. Most other places in the Twin Cities are also pulmonary clinics. The one that is not tends to have a ridiculously narrow view of narcolepsy, meaning that they might actually tell me that I do NOT have narcolepsy. The added complication is that if I go somewhere else, they might be worse and could possible change my drugs in ways that make it impossible for me to work.
Sadly, I don't feel like I have any good choices here. I can stay where I am, continue to figure out on my own (and with my many PWN friends) how to handle this condition, and ensure that I can at least receive drugs that seem to work for me. The downside is that I might not EVER talk to my "doctor" again. And, if I do "need" to see him, will he honestly have genuine suggestions for me? Of course, leaving presents the possibility of finding a great doctor who can help me better understand myself and my disease, but that does not feel likely. In fact, I am honestly more worried that my current options (other than my actual clinic and doctor) would likely do more harm than good. The idea of having to re-tell my story (or even to be re-tested) while possibly being disparaged because my diagnosis is narcolepsy without cataplexy (or possibly mild/abnormal cataplexy which the guidelines still call "without cataplexy"). In fact, if that happened, it might be far more disrupting than just the mental stress. I might lose the meds I have, and if I can't work, I would also likely lose the small chance that I would have of a disability situation (if I don't have "narcolepsy," I have some condition of unknown etiology which would mean in legal terms that people think I am lazy).
Fortunately, I am not freaking out over this, but I do need to ponder a next step. I am not sure where to start. I know that there is an excellent neurologist in Saint Cloud, but have been remiss to try to see him because I doubt that insurance will cover it. And, I have no idea of how I would prove to my insurance company that I can't get proper care in the Twin Cities when many other PWNs "do." I actually know that they don't, but we are such a small population that it is easy to make blanket statements, particularly for large companies. Perhaps I am most frustrated by the fact that this brief stop in my doctor's office has added yet one more level of stress to my already growing anxiety of late. I truly do not have the time or the energy to commit to the process of searching for a new doctor. I also know that I hate the idea of "popping" into this office once or twice a year to simply pretend that my doctor checked on me.
Wednesday, July 22, 2009
Meandering Moodiness
While today was slightly better than yesterday, I have yet to find any traction this week. That said, I did enjoy my day. My daughter and I continued to enjoy her new Wii game. Animal Crossing is ridiculously silly. You essentially fish, catch bugs, run errands for your neighbors, and dig up fossils. At the same time, it is hilarious. I must admit that the best part is spending time with my daughter. Although we did manage to limit the Wii time, it was still past noon when we "finished." We then went to lunch and took in a movie together. I do believe that things went well, but I still worry that I am not connecting with her enough.
I did manage to do one thing for my wife today. I got groceries, which we desperately needed. At the driving in the afternoon, I was a tad worried about driving again, but I rested for an hour before going shopping. Still, the trip to the store finished me for the night. I was able to let go of my anxiety over the things that I have not even started yet for my meeting in the morning. I think I can get a couple things done when I wake up, but I doubt I will have it all finished. Hopefully, my colleagues will understand and forgive me. I also have an appointment with my sleep doctor tomorrow. I need to pull together some questions for him. The appointment should go fine, but I also wish I had a firmer grasp on my current mental state. I am not sure how well my meds are working, but worry about trying to ask for anonther stimulant. We will see.
This needs to be short tonight because I need to get to sleep. I am painfully aware that my own inability to re-establish any sense of a schedule has been reeking havoc with my entire state of being - mentally, physically, emotionally. The good news is that I still have a week and a half of July. Then, I will get three weeks of August before school starts. That is a tremendous amount of time, but I must start moving in a better direction.
I did manage to do one thing for my wife today. I got groceries, which we desperately needed. At the driving in the afternoon, I was a tad worried about driving again, but I rested for an hour before going shopping. Still, the trip to the store finished me for the night. I was able to let go of my anxiety over the things that I have not even started yet for my meeting in the morning. I think I can get a couple things done when I wake up, but I doubt I will have it all finished. Hopefully, my colleagues will understand and forgive me. I also have an appointment with my sleep doctor tomorrow. I need to pull together some questions for him. The appointment should go fine, but I also wish I had a firmer grasp on my current mental state. I am not sure how well my meds are working, but worry about trying to ask for anonther stimulant. We will see.
This needs to be short tonight because I need to get to sleep. I am painfully aware that my own inability to re-establish any sense of a schedule has been reeking havoc with my entire state of being - mentally, physically, emotionally. The good news is that I still have a week and a half of July. Then, I will get three weeks of August before school starts. That is a tremendous amount of time, but I must start moving in a better direction.
Tuesday, July 21, 2009
Deepening Depression
Today was hard. I had an okay day, but I truly felt paralyzed when it came to doing any work. There is so much on my plate, and I have no idea where to begin. Confusing the situation is the sensation that I have not done much just for me recently. Many of my actions have "helped" me and others, but I occasionally have this burgeoning sensation of selfishness. I feel like I need to take a few days and just do things for me - read books that I want to read, watch movies that I want to watch, and let everything else go. Unfortunately, such an option is as unrealistic as my desire to clean the entire house in a day. One, I cannot afford for me to take those days because I need to help my wife and I need to get ready for the school year. Two, even if I COULD take the days, my brain would not let me. I would still not be able to focus even if I was doing things just for me. Instead, I would question whether that "me time" was warranted. If that sounds crazy, I can assure you, it also feels crazy.
I know that my continued sleepiness is a major factor in my indecision. When I am this rundown, I do not do well with decision-making. Also contributing to my consternation today was the cool and rainy nature of the day. The atmospheric pressure was literally weighing on my mind. Sadly, tomorrow may be more of the same. I also MUST do a better job of putting some structure to my day. Without any, I meander all of the place. It is imperative that I make a daily schedule a habit for myself. By doing so, I will be able to manage my day and my sanity with far greater balance.
Of course, all of these thoughts must be framed within the reality of my narcolepsy. No matter how good I get at setting a schedule, or accepting the weather, or handling difficult days, in the end, I will always feel tired even with my medication, even with the best night of sleep that I can get. That is the hard truth. I also know that I will invariably encounter "off days" because of the nature of narcolepsy. It is impossible to believe that I will be able to accept the constant sleepiness that I will have every day for the rest of my life. Eventually, my frustrations will build to the point that I need to rail against my disease for a time. I do hope that I will spread out those rotten days at wider and wider intervals, but I must accept that they will never go away. I hate that, but it is my life.
To end on an upbeat note, I did have fun playing a new game on our Wii today. My daughter bought Animal Crossing: City Folk. The game is super cute, and she and I both have a character in the town. While I must be careful (because this type of adventure game could consume me), I loved playing and watching the game with her. It was a silly and light-hearted moment for the two of us. I am sure we will play a little tomorrow too, but we are also going to have an adventure. Hopefully, that excurision will provide some fun for the two of us AND some structure for me.
I know that my continued sleepiness is a major factor in my indecision. When I am this rundown, I do not do well with decision-making. Also contributing to my consternation today was the cool and rainy nature of the day. The atmospheric pressure was literally weighing on my mind. Sadly, tomorrow may be more of the same. I also MUST do a better job of putting some structure to my day. Without any, I meander all of the place. It is imperative that I make a daily schedule a habit for myself. By doing so, I will be able to manage my day and my sanity with far greater balance.
Of course, all of these thoughts must be framed within the reality of my narcolepsy. No matter how good I get at setting a schedule, or accepting the weather, or handling difficult days, in the end, I will always feel tired even with my medication, even with the best night of sleep that I can get. That is the hard truth. I also know that I will invariably encounter "off days" because of the nature of narcolepsy. It is impossible to believe that I will be able to accept the constant sleepiness that I will have every day for the rest of my life. Eventually, my frustrations will build to the point that I need to rail against my disease for a time. I do hope that I will spread out those rotten days at wider and wider intervals, but I must accept that they will never go away. I hate that, but it is my life.
To end on an upbeat note, I did have fun playing a new game on our Wii today. My daughter bought Animal Crossing: City Folk. The game is super cute, and she and I both have a character in the town. While I must be careful (because this type of adventure game could consume me), I loved playing and watching the game with her. It was a silly and light-hearted moment for the two of us. I am sure we will play a little tomorrow too, but we are also going to have an adventure. Hopefully, that excurision will provide some fun for the two of us AND some structure for me.
Monday, July 20, 2009
Trouble Tracking
Today has been odd. I know that I got things done, but I just don't feel like I did much. I had trouble getting going this morning. Some of that is residue from this weekend - I know that Mondays are hard when I have pushed during the weekend (and that definitely happened between the anxiety and the excitement of the play plus the physical exertion of striking the set). I also know that some of my discomfort today is connected to the numerous things that I feel looming in my life. Whether it is work for school or the multitude of house projects, there is much to do and the time is slowly dwindling. The hardest part is knowing that I probably can't get to everything that I would like to do. Well, that and the fact that I want to finish everything within a day. I do find it funny that my baseline is still, "I should be able to do that by the end of the day." At least I know it is ridiculous, but I still experience some emotional push back from my subconscious.
I did manage to take care of a few things for school today. Mostly, I got our writing curriculum books to two of my three colleagues. Hopefully, I will take care of the third person before the end of the week. I also did a little shopping for myself, and I had a great conversation with a couple of friends. While those interactions were unplanned, there were wonderfully refreshing. I just wish that I wouldn't do my mental calculus after them (I just spent 30 minutes talking to that person, which means I can only get to this now...). Just one more aspect of my anxiety and my narcolepsy having a little party in my brain. More than anything, today is reminding me that I need to set schedules for my days like this. As nice as it is that my daughter does not have rehearsal every afternoon, that event forced a small amount of scheduling into my days. Now, things are too open, and I run the risk of that paralyzing me. Hopefully, tomorrow will feel more productive. I also have some time tonight that I can use to my advantage.
Finally, I need to mention that I did advocate for myself today. My wife just scheduled her conference for October. While we knew that her annual medical writers conference is in direct conflict of my Narcolepsy Network, we have already planned that we are both going to attend our conferences. However, when she mentioned signing up for hers, I then asked if we could get things in order for my conference. I definitely hope that we can do that soon. While it is not much, knowing that I have a flight to Jacksonville and a hotel room will take some pressure off of the many things on my mind. Silly, yes, but real.
I did manage to take care of a few things for school today. Mostly, I got our writing curriculum books to two of my three colleagues. Hopefully, I will take care of the third person before the end of the week. I also did a little shopping for myself, and I had a great conversation with a couple of friends. While those interactions were unplanned, there were wonderfully refreshing. I just wish that I wouldn't do my mental calculus after them (I just spent 30 minutes talking to that person, which means I can only get to this now...). Just one more aspect of my anxiety and my narcolepsy having a little party in my brain. More than anything, today is reminding me that I need to set schedules for my days like this. As nice as it is that my daughter does not have rehearsal every afternoon, that event forced a small amount of scheduling into my days. Now, things are too open, and I run the risk of that paralyzing me. Hopefully, tomorrow will feel more productive. I also have some time tonight that I can use to my advantage.
Finally, I need to mention that I did advocate for myself today. My wife just scheduled her conference for October. While we knew that her annual medical writers conference is in direct conflict of my Narcolepsy Network, we have already planned that we are both going to attend our conferences. However, when she mentioned signing up for hers, I then asked if we could get things in order for my conference. I definitely hope that we can do that soon. While it is not much, knowing that I have a flight to Jacksonville and a hotel room will take some pressure off of the many things on my mind. Silly, yes, but real.
Tuesday, July 14, 2009
Fading Focus
Summer is always a curve and a blessing for me. I LOVE that I actually have "free time" because I need it to recover from the frenetic pace of my school year. At the same time, I hate it because I am terrible with unstructured time. I have been doing better this summer, but I have struggled for the last two days. My problem is that I lack the self-discipline (or perhaps the energy) to create a modest schedule of tasks for the day. During the school year, I am forced to create some level of schedule because my work fills specific sections of my day. When summer truly arrives for me, though, I have such open swaths of time that I regularly fail to pre-plan what I will be doing on any given day.
I also get terribly gun shy of planning out specific days. I know that I overestimate my energy and abilities, meaning that if I plan out a series of days, I will likely be "behind" from the moment I set my schedule. At the same time, when I allow myself to "see where the day will take me," I find myself accomplishing next to nothing. Because so many things are a "top priority," I am often paralyzed by my own brain. Worse, my inaction causes me to begin berating myself, which makes my more tired, and I become even more inefficient.
As I said, I am getting better at managing these things. In reality, my learning style (concrete random) and my personality type (ENFP) do not lend themselves well to carefully planned out schedules. In fact, they are deadly for me because my "random" nature means that I will eventually fail, and the "concrete" aspect of my brain will condemn me for that failure. Thus, I need broad plans, and I must accept any step towards the completion of those plans as progress. For instance, our finances needed to get up to date. In the past I would have tried to get it completed in one day. Although I did manage to do that from time to time (by locking myself in our office for 8-10 hours), more often, I would get to a semi-acceptable point and then would leave the finances unfinished - possibly missing a bill. This time, I chipped away at the finances over a four day window. I not only got caught up, but I also managed to enter information for my wife, and I figured out some of the stranger issues in our investment numbers. I even got paperwork filed today.
Unfortunately, even successes like that do not completely sink in for me. I consciously know that I did a good job, but I don't truly feel it. Instead, the hypercritical portion of my brain berates me for taking so long. It also reminds me that the office is still a disaster, and the investment numbers are still not fixed. And, pushing those thoughts away (or should I say hearing them and then dismissing them as irrational) takes tremendous amounts of energy, leaving even more run down. As a result, I then spend a few days, like today and yesterday, wallowing a bit and trying to get into some sort of groove with my daily routine.
The other two challenges of summer tie into that last issue. This time off often results in a different series of events every day. I have clearly learned that I am at my best when I can get into a pattern and am able to follow that every day. Sadly, I am convinced that it will be years until such a thing is possible during the summer for me. My wife's job, my daughter's activities, my doctor appointments, and my work issues mean that summer will remain a hodge podge of starts and stops in each and every day. Summer also means a great deal of isolation. While I do get to spend time with my daughter, many of my days involve long stretches of time when I am alone. Although I have come to appreciate some quiet time when I am isolated, the reality is that I am an extreme extrovert. Thus, being by myself drains me. Sometimes, that alone can totally wipe me out. On the other hand, I can be having the worst excessive daytime sleepiness, but come to life as soon as I step in front of a group of people.
As in so many other things, I must be patient as I move forward living with narcolepsy. This condition is insanely bizarre. I can feel almost normal one day and horribly tired the next. Worse, so much of my day (each day) depends on my sleep, yet I have NO control over that. Even when I have been in a great pattern of going to sleep and waking at the same time each day, one thousand and one tiny little things can positively and negatively influence my rest. Thus, I must take a deep breath, do the best I can, and not fret about the highs and lows. I just need to ground myself in the present and stay with each moment.
I also get terribly gun shy of planning out specific days. I know that I overestimate my energy and abilities, meaning that if I plan out a series of days, I will likely be "behind" from the moment I set my schedule. At the same time, when I allow myself to "see where the day will take me," I find myself accomplishing next to nothing. Because so many things are a "top priority," I am often paralyzed by my own brain. Worse, my inaction causes me to begin berating myself, which makes my more tired, and I become even more inefficient.
As I said, I am getting better at managing these things. In reality, my learning style (concrete random) and my personality type (ENFP) do not lend themselves well to carefully planned out schedules. In fact, they are deadly for me because my "random" nature means that I will eventually fail, and the "concrete" aspect of my brain will condemn me for that failure. Thus, I need broad plans, and I must accept any step towards the completion of those plans as progress. For instance, our finances needed to get up to date. In the past I would have tried to get it completed in one day. Although I did manage to do that from time to time (by locking myself in our office for 8-10 hours), more often, I would get to a semi-acceptable point and then would leave the finances unfinished - possibly missing a bill. This time, I chipped away at the finances over a four day window. I not only got caught up, but I also managed to enter information for my wife, and I figured out some of the stranger issues in our investment numbers. I even got paperwork filed today.
Unfortunately, even successes like that do not completely sink in for me. I consciously know that I did a good job, but I don't truly feel it. Instead, the hypercritical portion of my brain berates me for taking so long. It also reminds me that the office is still a disaster, and the investment numbers are still not fixed. And, pushing those thoughts away (or should I say hearing them and then dismissing them as irrational) takes tremendous amounts of energy, leaving even more run down. As a result, I then spend a few days, like today and yesterday, wallowing a bit and trying to get into some sort of groove with my daily routine.
The other two challenges of summer tie into that last issue. This time off often results in a different series of events every day. I have clearly learned that I am at my best when I can get into a pattern and am able to follow that every day. Sadly, I am convinced that it will be years until such a thing is possible during the summer for me. My wife's job, my daughter's activities, my doctor appointments, and my work issues mean that summer will remain a hodge podge of starts and stops in each and every day. Summer also means a great deal of isolation. While I do get to spend time with my daughter, many of my days involve long stretches of time when I am alone. Although I have come to appreciate some quiet time when I am isolated, the reality is that I am an extreme extrovert. Thus, being by myself drains me. Sometimes, that alone can totally wipe me out. On the other hand, I can be having the worst excessive daytime sleepiness, but come to life as soon as I step in front of a group of people.
As in so many other things, I must be patient as I move forward living with narcolepsy. This condition is insanely bizarre. I can feel almost normal one day and horribly tired the next. Worse, so much of my day (each day) depends on my sleep, yet I have NO control over that. Even when I have been in a great pattern of going to sleep and waking at the same time each day, one thousand and one tiny little things can positively and negatively influence my rest. Thus, I must take a deep breath, do the best I can, and not fret about the highs and lows. I just need to ground myself in the present and stay with each moment.
Friday, July 10, 2009
Groggy Gray Grumpies
I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered - I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that "work" resulted in me being even more wiped out AND the following:
My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don't). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight - pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least "get it" when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.
- House is messier today than it was on Monday
- Lawn is still not mowed
- I need to make two phone calls - one to set up yet another meeting
- Our office is still not cleaned
- Our finances are not yet up to date
- Oodles of things need to get done for my job
- Oodles of things need to get done for MOONS-MN
- Oodles of things need to get done for our house - window stain, door paint, room touch up, blinds hung
- My wife is depressed, and more from me would help
- My daughter needs us to run errands and help packing for an overnight
My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don't). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight - pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least "get it" when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.
Thursday, July 9, 2009
Fatiguing Fight
The thought hit me today that I expend tremendous energy battling my narcolepsy each day. Motivating myself to get up, pushing myself to exercise, forcing myself to bear down on a specific task, and stretching myself to be attentive to others (particularly my wife and daughter) are all doubly draining elements of my day. I truly want to do all of those things, but they not only take energy by their very nature, but also a second (actually initial) level of energy must also be exerted simply to overcome my inertia. Truth be total, my body and brain often seem to think that they would be most happy if I never left my bed.
Such a development would invariably be a disaster. I know my anxiety and depression well enough to know that even a couple of days of "nothing" would send me over the edge. My gray matter is constantly processing, thus with no outside stimuli, it would start to create its own. Having had a few other times in my life when my mind turned inward for "entertainment," I would like to avoid that FOREVER. Apparently, that big bundle of nerve cells in my cranium does fully get that it needs the rest of the body to keep functioning, since it has pushed the rest of me dangerously close to wanting to do something drastic. Fortunately, I am far more able to intervene when I can feel the irrationality starting.
None of that changes the situation, though, that narcolepsy not only makes my sleepy, but also it exhausts me because I have to push through it to "get going." I am sure it is the reason that I am an extrovert. I almost always dread starting - my day, my next project, a book, a conversation - anything. But, once I am engaged, I tend to gain energy for the interactions, even when it is something inanimate like a book. That is good because I think I would pass out if I did not draw energy from those activities. Of course, the catch for me is that when the stimulus is gone, my energy drops to much lower levels. My awareness to this reality has been heighten this week because I have been on the go a lot. I have had meetings and conversations for much of the past three days. When those have finished, though, I am always in a location that requires me to drive home (or to my next meeting). Certainly, I have felt tired other times when I have driven, but the fatigue this week has felt much more severe. It does not help that the burgeoning traffic in Saint Paul and numerous construction projects have made this the worst summer for traffic that I have ever seen.
I am not worried that I will fall asleep behind the wheel, but I am struck that each of my interactions have taken so much out of me. That happens at other times too, but I notice it less because I usually am not doing something as demanding as the driving that has followed each meeting or conversation this week. I definitely see it as another item about my narcolepsy that I need to tuck into my every growing file. I am also thrilled that this is my reaction rather than mentally beating myself up over something that is completely out of my control. Narcolepsy is something that I cannot "beat," but I also know that this is not about winning. It is about living and appreciating what I do have - every second of it.
Such a development would invariably be a disaster. I know my anxiety and depression well enough to know that even a couple of days of "nothing" would send me over the edge. My gray matter is constantly processing, thus with no outside stimuli, it would start to create its own. Having had a few other times in my life when my mind turned inward for "entertainment," I would like to avoid that FOREVER. Apparently, that big bundle of nerve cells in my cranium does fully get that it needs the rest of the body to keep functioning, since it has pushed the rest of me dangerously close to wanting to do something drastic. Fortunately, I am far more able to intervene when I can feel the irrationality starting.
None of that changes the situation, though, that narcolepsy not only makes my sleepy, but also it exhausts me because I have to push through it to "get going." I am sure it is the reason that I am an extrovert. I almost always dread starting - my day, my next project, a book, a conversation - anything. But, once I am engaged, I tend to gain energy for the interactions, even when it is something inanimate like a book. That is good because I think I would pass out if I did not draw energy from those activities. Of course, the catch for me is that when the stimulus is gone, my energy drops to much lower levels. My awareness to this reality has been heighten this week because I have been on the go a lot. I have had meetings and conversations for much of the past three days. When those have finished, though, I am always in a location that requires me to drive home (or to my next meeting). Certainly, I have felt tired other times when I have driven, but the fatigue this week has felt much more severe. It does not help that the burgeoning traffic in Saint Paul and numerous construction projects have made this the worst summer for traffic that I have ever seen.
I am not worried that I will fall asleep behind the wheel, but I am struck that each of my interactions have taken so much out of me. That happens at other times too, but I notice it less because I usually am not doing something as demanding as the driving that has followed each meeting or conversation this week. I definitely see it as another item about my narcolepsy that I need to tuck into my every growing file. I am also thrilled that this is my reaction rather than mentally beating myself up over something that is completely out of my control. Narcolepsy is something that I cannot "beat," but I also know that this is not about winning. It is about living and appreciating what I do have - every second of it.
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!
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.
Thursday, May 28, 2009
Sad and Surreal
Somehow, it is still May. Although I have not written for weeks, it feels like it has been a year. While I know that I have managed life, work, home, and health reasonably well, I am frustrated that I have not found time for me. I need to blog. I need to exercise. I need to practice yoga. Thankfully, summer is literally around the corner. My primary personal goal is to set clear patterns for those three things for me.
Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.
Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.
We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.
When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.
Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.
Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.
Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.
We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.
When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.
Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.
Friday, April 10, 2009
Friday Fury
I long for the day that I will be "ready" for a day. My sister, my daughter, my brother-in-law, and I were scheduled to leave at Noon today. We are spending Easter weekend in Duluth, hoping to see my grandmother and my mother (who is in town to help care for her). Even though we had a plan, I wound up derailing it for a time. Everything was fine, but it bothered me that my inability to get things done, or to garner any energy, forced others to wait. The true "problem" began on Thursday.
Invariably, I ran myself ragged yesterday. I did enjoy my abbreviated massage, and the chiropractor helped. After that, though, I headed to the University of Minnesota. My wife and I had a fun (but dorky) date. We met at her office to attend Grand Rounds. Dr. Mike Osterholm was speaking about influenza pandemics. It was incredible, but going to that meant that other things did not get done. I did rest at home for a time, but then I had to get my daughter. After that, I tried to do some cleaning around the house. Things look worse now, but my wife seemed to think that it was progress. After working for an hour and a half, I had to head to my daughter's school for a three-hour meeting. I got home at 10:30 PM. Needless to say, I had no energy for any more cleaning, or for packing.
Then, when I woke up this morning, I spent an hour and a half getting work done for the previous night's meeting. I did do some additional organizing of computer files (and dumping of files to clean out my laptop), but I was not ready to leave until nearly 1 PM. Again, it was not a huge problem, but I feel such internal pressure in those situations. I abhor inconveniencing others. Fortunately, I held things together. We arrived in Duluth around 3:30 PM, which was actually perfect. I just hope that I can let myself relax over the next few days. I remain vulnerable to my internal messages about doing more and unachieving.
These are the narcolepsy moments that I truly dread. I am doing "fun" things, but the energy required for them also drains me. The balance of living with this condition is often maddening. I am grateful that my wife and daughter remain understanding. I need to keep working on giving myself more of a break when I am in the midst of energy struggles like I am having this week. The one other tough part, though, is that my wife is out of town from tomorrow until next Saturday. Thus, I will get home on Sunday with professional work that needs to be done, volunteer work that needs to be done, and housework that needs to be done. I will face all of that as a solo parent and as a run down person with narcolepsy. It will be fine, and I will get done what I can, how I can, but I need to remember that I am doing a decent job, even if things turn out mediocre at best. In the end, I need to remember to breathe, while I handle each thing one step at a time.
Invariably, I ran myself ragged yesterday. I did enjoy my abbreviated massage, and the chiropractor helped. After that, though, I headed to the University of Minnesota. My wife and I had a fun (but dorky) date. We met at her office to attend Grand Rounds. Dr. Mike Osterholm was speaking about influenza pandemics. It was incredible, but going to that meant that other things did not get done. I did rest at home for a time, but then I had to get my daughter. After that, I tried to do some cleaning around the house. Things look worse now, but my wife seemed to think that it was progress. After working for an hour and a half, I had to head to my daughter's school for a three-hour meeting. I got home at 10:30 PM. Needless to say, I had no energy for any more cleaning, or for packing.
Then, when I woke up this morning, I spent an hour and a half getting work done for the previous night's meeting. I did do some additional organizing of computer files (and dumping of files to clean out my laptop), but I was not ready to leave until nearly 1 PM. Again, it was not a huge problem, but I feel such internal pressure in those situations. I abhor inconveniencing others. Fortunately, I held things together. We arrived in Duluth around 3:30 PM, which was actually perfect. I just hope that I can let myself relax over the next few days. I remain vulnerable to my internal messages about doing more and unachieving.
These are the narcolepsy moments that I truly dread. I am doing "fun" things, but the energy required for them also drains me. The balance of living with this condition is often maddening. I am grateful that my wife and daughter remain understanding. I need to keep working on giving myself more of a break when I am in the midst of energy struggles like I am having this week. The one other tough part, though, is that my wife is out of town from tomorrow until next Saturday. Thus, I will get home on Sunday with professional work that needs to be done, volunteer work that needs to be done, and housework that needs to be done. I will face all of that as a solo parent and as a run down person with narcolepsy. It will be fine, and I will get done what I can, how I can, but I need to remember that I am doing a decent job, even if things turn out mediocre at best. In the end, I need to remember to breathe, while I handle each thing one step at a time.
Thursday, April 9, 2009
Battling the Blues
Vacations and breaks are good and bad for me. I definitely needed to rest and relax, which this time off is allowing (at least in a small way). The problem, though, is that I continue to feel compelled to do things. When I have free time, my brain continues to race with everything that is un-done. That might sound odd, or even insane, to some, but it is the best way that I can describe what happens inside my head. When I have time to think, the tapes in my head regurgitate each task that I have yet to accomplish. Often, the resulting effect is stressed out paralysis - which does little to relieve the overwhelming anxiety. Needless to say, I know that these irrational thoughts are one of the largest burdens that I will face as my life moves forward.
A portion of this self-defeating trait must be genetic because I know that my mother, my grandmother, my aunt, and my great-grandmother all have (or had) the same types of tendencies. Clearly, it is also learned behavior. Watching all of those women in my life push themselves certainly rubbed off on me. My father also never stops moving, although I remain convinced that his behavior is also a way to cope with undiagnosed sleep issues (quite possibly narcolepsy). The third element, though, is me. I do know ways to cope with these messages, but I tend to let them drift to the wayside as I get busier (and more tired) during the school year. The best way for me to cope with this proclivity for irrational delusions about my work load is yoga and meditation. Closing following those two techniques is exercise. When I am stronger and more balanced mentally, emotionally, and physically, I am better able to fend off and ride out the onslaught of "missed opportunities" that can crash over me when I try to have down time.
Unfortunately, I do let yoga and exercise disappear when I am pressed for time and energy. Both do make me stronger and improve my endurance, but they require time and physical strength too. Rarely do I prioritize my need for them over my wife and daughter, or my job. In this on-going journey of narcolepsy, I need to press my personal agenda. If I do not, it will hurt me, my family, my colleagues, and my students. The reality is that things that make me more complete need to be at the top of my list, rather than in the "if I have time..." category. The truth is that I will NEVER have time for that category.
I find it ironic that even now I am writing this blog post to keep the negative messages at bay. Already this morning I have conceived of more work to do than I could hope to finish in a week. But, because I am run down and still recovering, the messages flood my brain - clean the fish tank, clean the kitchen, clean the office, sort the mail, organize the pictures, re-organize the computer files, get the books moved at school, write up the MLA formatting rules, vacuum the house, change the cat litter, do the laundry, pack for the trip, get the money entered, finish the taxes, and those are just the things that I need to do "today." Typing that list scares me because part of me truly believes that I should do ALL of that today. Then, another voice reminds me that I can't do it because of my narcolepsy and because I am weak. I know that all of that is irrational, but when I am this tired, I struggle to fully accept the irrationality of those ideas. Thus, they feed my depression and anxiety further.
In the end, I simply must embrace this portion of my journey. Playing ultimate (and my long walk on Monday) reminded me that exercise does help me. Slowly, I will find a way to work yoga and exercise back into my routine. Poco a poco, I will make the changes that I can, both to live a more balanced life and to recognize that I can be a person with narcolepsy and still have joy and contentment. Likely, the path will extend to the end of my time, but at least I know I am moving in the proper direction, even if it is one slow, small step at a time.
A portion of this self-defeating trait must be genetic because I know that my mother, my grandmother, my aunt, and my great-grandmother all have (or had) the same types of tendencies. Clearly, it is also learned behavior. Watching all of those women in my life push themselves certainly rubbed off on me. My father also never stops moving, although I remain convinced that his behavior is also a way to cope with undiagnosed sleep issues (quite possibly narcolepsy). The third element, though, is me. I do know ways to cope with these messages, but I tend to let them drift to the wayside as I get busier (and more tired) during the school year. The best way for me to cope with this proclivity for irrational delusions about my work load is yoga and meditation. Closing following those two techniques is exercise. When I am stronger and more balanced mentally, emotionally, and physically, I am better able to fend off and ride out the onslaught of "missed opportunities" that can crash over me when I try to have down time.
Unfortunately, I do let yoga and exercise disappear when I am pressed for time and energy. Both do make me stronger and improve my endurance, but they require time and physical strength too. Rarely do I prioritize my need for them over my wife and daughter, or my job. In this on-going journey of narcolepsy, I need to press my personal agenda. If I do not, it will hurt me, my family, my colleagues, and my students. The reality is that things that make me more complete need to be at the top of my list, rather than in the "if I have time..." category. The truth is that I will NEVER have time for that category.
I find it ironic that even now I am writing this blog post to keep the negative messages at bay. Already this morning I have conceived of more work to do than I could hope to finish in a week. But, because I am run down and still recovering, the messages flood my brain - clean the fish tank, clean the kitchen, clean the office, sort the mail, organize the pictures, re-organize the computer files, get the books moved at school, write up the MLA formatting rules, vacuum the house, change the cat litter, do the laundry, pack for the trip, get the money entered, finish the taxes, and those are just the things that I need to do "today." Typing that list scares me because part of me truly believes that I should do ALL of that today. Then, another voice reminds me that I can't do it because of my narcolepsy and because I am weak. I know that all of that is irrational, but when I am this tired, I struggle to fully accept the irrationality of those ideas. Thus, they feed my depression and anxiety further.
In the end, I simply must embrace this portion of my journey. Playing ultimate (and my long walk on Monday) reminded me that exercise does help me. Slowly, I will find a way to work yoga and exercise back into my routine. Poco a poco, I will make the changes that I can, both to live a more balanced life and to recognize that I can be a person with narcolepsy and still have joy and contentment. Likely, the path will extend to the end of my time, but at least I know I am moving in the proper direction, even if it is one slow, small step at a time.
Wednesday, March 25, 2009
Midnight Madness
Once again, I am up far later than a PWN should be. Oops! Life continues to surge at a break neck pace, yet I am surviving. My daughter had a horrid cold at the beginning of last week, and I promptly caught it. I came home early from school last Wednesday and immediately got worse. Somehow, I managed to limp through Thursday and Friday, not only getting to school, but also teaching decently. It was stunning to realize that I could feel as bad as I did, but still get to work and perform adequately. I must admit that I felt a bit of pride in being able to do that. Of course, I also questioned my sanity, particularly on Friday when my morning dose of cold medication did not play nicely with my stimulant. The chest pains and racing heart had me a little worried, but I got through it.
This week has been better from a health perspective, but today was difficult personally and professionally. We have been discussing a change to our cell phone policy and our iPod/mp3 player policy for the past two years. March 24 was finally the day of our "listening session" to hear faculty feedback. Needless to say, no one tends to be more biting in their criticism than disgruntled teachers. I facilitated two sessions and felt pummled by the negative feelings of many of my colleagues. I can understand resistence to the ideas proposed, but many people went well beyond that and vented about "technology" in general. It hurt because our committee has put so much time and energy into our work, but also because I personally believe that integrating more technology into the schoolwide curriculum is vital to helping our students prepare for the future that awaits them. To have a number of colleagues disparage that idea saddened me. It also made me question whether my school is the right place for my daughter, or for me.
This week has been better from a health perspective, but today was difficult personally and professionally. We have been discussing a change to our cell phone policy and our iPod/mp3 player policy for the past two years. March 24 was finally the day of our "listening session" to hear faculty feedback. Needless to say, no one tends to be more biting in their criticism than disgruntled teachers. I facilitated two sessions and felt pummled by the negative feelings of many of my colleagues. I can understand resistence to the ideas proposed, but many people went well beyond that and vented about "technology" in general. It hurt because our committee has put so much time and energy into our work, but also because I personally believe that integrating more technology into the schoolwide curriculum is vital to helping our students prepare for the future that awaits them. To have a number of colleagues disparage that idea saddened me. It also made me question whether my school is the right place for my daughter, or for me.
Thursday, February 26, 2009
Blogging Block
Somehow, another month has nearly passed me by. I am hoping to write a post or two before February also ends. I know that I need to do this, but my daily existence seems to have other plans. We will see what the next three days bring. While February generally stinks, this year seems to be spectacularly chaotic. The good news is that I continue to give myself permission to "underachieve." Unfortunately, that grows more difficult with each passing day. Our trimester ends next Friday, and the few days off will help me, but I daily find it tougher to shut down the negative voices in my head. I am well aware that I am doing the best I can, yet my constantly ebbing energy hampers me from opening myself to forgiveness.
I also find it ridiculous that I have two posts for the second month in a row. Even worse, both February posts were written WELL after my bedtime. I need to sleep, but also wanted to get something else posted before March. I need to get back into some level of routine. Perhaps, March will enter like a lamb for me. Still, I don't plan to hold my breath.
I also find it ridiculous that I have two posts for the second month in a row. Even worse, both February posts were written WELL after my bedtime. I need to sleep, but also wanted to get something else posted before March. I need to get back into some level of routine. Perhaps, March will enter like a lamb for me. Still, I don't plan to hold my breath.
Sunday, January 11, 2009
Ebbing Energy
New year, old issue. I spent the entire week reminding myself that "re-starting" is terribly hard for me. I don't regret anything from my break, but having two weeks "off" from my normal schedule was devastating to my ability to function at school and at home. My daughter was sick on Monday, so I missed the first day back. I still got up and tried to work, but I did not exert the energy that I would have at school. The rest of the week, I limped through school and crawled through my evenings. I got the bare minimum done each night, and I still have a ton to correct that I had hoped to finish over the break. Finally, I spent the entire day yesterday attempting to find some enthusiasm and verve. Didn't work. I made a small amount of progress today, but the correcting remains untouched.
My frustration in all of this is that I continue to experience the same things over and over, AND I let them get to me each time. My angst around the current fatigue is not nearly as bad as it has been in the past, but I am still upset. I am also struggling to get work done, work that must be finished soon (hopefully some of it tonight). Even as I type these words, I have more "unresolved" tasks flooding my head. I am realizing that I will be lucky to get comments on even a handful of papers. But, that will be better than nothing.
I must continue to accept what I am given and let go of what escapes me. One paper corrected is one less that I will need to do tomorrow. Plus, I made a difference for at least two students last week with the extra help that I provided them at school. Ironically, I participated in a Gallup survey today. The phone call was humorous because I felt like I was all over the place with my responses. I am definitely in a healthy income bracket and know that I live a good life, but I am also unhealthy and depressed - both because of my chronic condition and because of my anxiety. At the same time, I had to remember when I got off of the phone that I am incredibly lucky to live the life that I have. We have a beautiful house and savings. Both my wife and I are blessed to have jobs that we love, and our daughter receives an excellent education at her school. So, even though narcolepsy makes my life far from simple, I am blessed to have so much. It does not change the agitation that I often feel from my low energy, but it does help to ground me in my daily living.
My frustration in all of this is that I continue to experience the same things over and over, AND I let them get to me each time. My angst around the current fatigue is not nearly as bad as it has been in the past, but I am still upset. I am also struggling to get work done, work that must be finished soon (hopefully some of it tonight). Even as I type these words, I have more "unresolved" tasks flooding my head. I am realizing that I will be lucky to get comments on even a handful of papers. But, that will be better than nothing.
I must continue to accept what I am given and let go of what escapes me. One paper corrected is one less that I will need to do tomorrow. Plus, I made a difference for at least two students last week with the extra help that I provided them at school. Ironically, I participated in a Gallup survey today. The phone call was humorous because I felt like I was all over the place with my responses. I am definitely in a healthy income bracket and know that I live a good life, but I am also unhealthy and depressed - both because of my chronic condition and because of my anxiety. At the same time, I had to remember when I got off of the phone that I am incredibly lucky to live the life that I have. We have a beautiful house and savings. Both my wife and I are blessed to have jobs that we love, and our daughter receives an excellent education at her school. So, even though narcolepsy makes my life far from simple, I am blessed to have so much. It does not change the agitation that I often feel from my low energy, but it does help to ground me in my daily living.
Sunday, January 4, 2009
Exhausted Evening(s)
I know that narcolepsy tends to move in waves for me, but the last few days have been hard. I have had a decent start to 2009, but I also realize that my energy is frighteningly low. On New Year's Day, I met with my teaching team. We got a ton done in 2.5 hours. It was also wonderful to see them, but by the time I got home, I was spent. Some of my mood is a natural reaction to the end of a break. I NEVER get done what I hope to get done. Even as I work to accept my limitations, I continue to assume (wrongly) that I will be far more productive than is possible for me. I also tend to lose sight of how hard "daily life" can be. I went shopping on January 2. Spending my Christmas gift cards undid me. Three stores and a handful of decisions sapped what little reserve that I had. Even going on a date with my wife yesterday was draining. We had a wondrous evening and enjoyed viewing Valkyrie, but we got home at 8:30 PM and I faded. Today is my last day of break. I got some work done for school, but I am struggling to focus for even 15 minutes at a time.
While I understand that days and weeks like this are possible, it is still hard to stomach it. I desperately want to be productive. I work hard to celebrate the things that I do get done. Yesterday, my wife and I planned out our budget for 2009. It took time, but we did great work. I also have done a bunch of research on cell phones and the new plan we will like select within the week. Those efforts definitely make a difference in our home. And, the school work I did today is a great thing, but I want to be able to do more. I want to feel like I am making progress. Sadly, I don't. My expectations remain unrealistic, but I also seem to have times when I don't let in the joy.
A piece of this is connected to having my parents here. It is hard for me to be comfortable in my own home when we have guests. The fact that it is my own parents makes me even more uneasy. I wish I knew why I felt like this when we have guests. Perhaps, I just find it hard to relax completely when others are around. I know that I worry too much about what others think of me. Beyond all of this, though, my stomach is a mess. I am experiencing far more reflux than I ever have. I have not been good about what I have been eating, but this seems to go well beyond that. I also know that I am out of the drug that I take for reflux. I would guess that something is happening there too. All I know is that the amount of acid in my stomach seems insane. I feel bloated, but I also feel like my throat is on fire at times.
As much as I wish I had another week of break, it will be good to go back to school tomorrow. I need that to help me have routine. Breaks and unstructured time are always bad for me. Having to go to my job provides an easy way to organize my day. At the same time, I know I need to figure out better strategies to rest myself and to renew my energy. I have done good things during this vacation. I need to hold onto those memories. I also need to ground myself in the moment, even when the moment doesn't feel quite right.
While I understand that days and weeks like this are possible, it is still hard to stomach it. I desperately want to be productive. I work hard to celebrate the things that I do get done. Yesterday, my wife and I planned out our budget for 2009. It took time, but we did great work. I also have done a bunch of research on cell phones and the new plan we will like select within the week. Those efforts definitely make a difference in our home. And, the school work I did today is a great thing, but I want to be able to do more. I want to feel like I am making progress. Sadly, I don't. My expectations remain unrealistic, but I also seem to have times when I don't let in the joy.
A piece of this is connected to having my parents here. It is hard for me to be comfortable in my own home when we have guests. The fact that it is my own parents makes me even more uneasy. I wish I knew why I felt like this when we have guests. Perhaps, I just find it hard to relax completely when others are around. I know that I worry too much about what others think of me. Beyond all of this, though, my stomach is a mess. I am experiencing far more reflux than I ever have. I have not been good about what I have been eating, but this seems to go well beyond that. I also know that I am out of the drug that I take for reflux. I would guess that something is happening there too. All I know is that the amount of acid in my stomach seems insane. I feel bloated, but I also feel like my throat is on fire at times.
As much as I wish I had another week of break, it will be good to go back to school tomorrow. I need that to help me have routine. Breaks and unstructured time are always bad for me. Having to go to my job provides an easy way to organize my day. At the same time, I know I need to figure out better strategies to rest myself and to renew my energy. I have done good things during this vacation. I need to hold onto those memories. I also need to ground myself in the moment, even when the moment doesn't feel quite right.
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