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 Loss. Show all posts
Showing posts with label Loss. 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!
Monday, October 19, 2009
Excessive Exhaustion
Although I seem to be handling my struggles better, I find it infuriating that my narcolepsy seems worse than ever. I know that my condition moves in cycles, and I am clearly in a down turn at this time. Still, getting up in the morning is more difficult, and my evening peter out far sooner than they did last year. I am scared that narcolepsy is progressive. I realize that my amphetamine dose is likely less effective, but I also doubt that the drug's impact has curtailed to the extent that I am once again experiencing fogginess in my thinking and the possibility of micro-naps. Even today, my drive home from school felt much closer to the automatic behavior rides I remember from my pre-diagnosis days.
Adding to my concern is that I am at a loss as to where I should turn medically. Since my sleep doctor did not even both to come into the room during my last visit, I doubt he will be much help. While he definitely understands the basics of narcolepsy, he is a pulmonary doctor whose true focus is obstructive sleep apnea. What I need is a neurologist who is well versed in sleep. Sadly, such physicians are few and far between. The "premier" group in the Minneapolis and Saint Paul area apparently has a narrow view of narcolepsy. If you are not text book, then you do NOT have narcolepsy. Since I am functioning less well on my current medicinal routine, I highly doubt that "losing" my diagnosis would do me much good. I boggles my mind that I am NOT going to a doctor because I am afraid that the doctor might tell me I do not have narcolepsy. I KNOW that I have narcolepsy, but the fact that I personally have talked to people who have been to this group worries me enough that I am not going to take the risk.
In many ways my current situation underscores the ridiculous reality that far too many PWNs face - we have a disease that does not "fit" in the contemporary structure of medicine. Most specials focus on a specific body system, but sleep medicine covers an enormous range. Obstructive sleep apnea alone involves the throat, the lungs, the brain, and even the heart and other organs when untreated. So, one can find sleep doctors who are ENTs, pulmonary specialists, neurologists, and even cardiovascular physicians. And, the essential mechanism of OSA is fairly well understood. Narcolepsy on the other hand is an autoimmune disease in which an environmental trigger has caused a genetic predisposition to activate, resulting in the body attacking small cells in the hypothalamus. Thus, those same sleep doctors who treat OSA periodically get PWNs as patients. But, few of them understand narcolepsy (which is still in its infancy in terms of medical insight). The situation only worsens when one realizes that the limited number of PWNs and the extreme nature of our drugs (class II stimulants and sleep aides like sodium oxybate) provide little to no financial incentive for any doctor considering sleep as a primary area of interest. The one small ray of hope is that the recent discovers about narcolepsy may spark significant interest among immunologists - now that it is clear that narcolepsy is an autoimmune disease.
None of that rambling helps my overly sleepy state, however. I remain proud of myself for accepting my situation and for pushing ahead with the best attitude that I can muster. Nonetheless, I abhor that mowing my small lawn today completely did me in. That comes on the heels of a Saturday and Sunday that saw me accomplish little because I was drained from talking to my wife and from confronting another parent. All of that happened on Saturday, but I needed all of Sunday to recover. In fact, I would argue that some of my current lethargy is also linked to my mental and emotional exertion on Saturday. While I know that I am doing the best that I can, the rational side of my brain is screaming about how pathetic the reality is. Yet, I have no choice, but to breath and to accept my disability.
I am looking forward to the Narcolepsy Network conference this weekend. While my relationship with the organization feels shaky at this time, I am thrilled to be going somewhere where my "norm" IS the "norm." Sitting in a room, or even having a casual conversation with a fellow PWN, is tremendously empowering. It reminds me that I am not insane. It also underscores for me that this disease is awful, and yet it is also manageable. Granted, I need to keep working to accept my limits, but I can be productive even with narcolepsy impeding me much of the time.
Adding to my concern is that I am at a loss as to where I should turn medically. Since my sleep doctor did not even both to come into the room during my last visit, I doubt he will be much help. While he definitely understands the basics of narcolepsy, he is a pulmonary doctor whose true focus is obstructive sleep apnea. What I need is a neurologist who is well versed in sleep. Sadly, such physicians are few and far between. The "premier" group in the Minneapolis and Saint Paul area apparently has a narrow view of narcolepsy. If you are not text book, then you do NOT have narcolepsy. Since I am functioning less well on my current medicinal routine, I highly doubt that "losing" my diagnosis would do me much good. I boggles my mind that I am NOT going to a doctor because I am afraid that the doctor might tell me I do not have narcolepsy. I KNOW that I have narcolepsy, but the fact that I personally have talked to people who have been to this group worries me enough that I am not going to take the risk.
In many ways my current situation underscores the ridiculous reality that far too many PWNs face - we have a disease that does not "fit" in the contemporary structure of medicine. Most specials focus on a specific body system, but sleep medicine covers an enormous range. Obstructive sleep apnea alone involves the throat, the lungs, the brain, and even the heart and other organs when untreated. So, one can find sleep doctors who are ENTs, pulmonary specialists, neurologists, and even cardiovascular physicians. And, the essential mechanism of OSA is fairly well understood. Narcolepsy on the other hand is an autoimmune disease in which an environmental trigger has caused a genetic predisposition to activate, resulting in the body attacking small cells in the hypothalamus. Thus, those same sleep doctors who treat OSA periodically get PWNs as patients. But, few of them understand narcolepsy (which is still in its infancy in terms of medical insight). The situation only worsens when one realizes that the limited number of PWNs and the extreme nature of our drugs (class II stimulants and sleep aides like sodium oxybate) provide little to no financial incentive for any doctor considering sleep as a primary area of interest. The one small ray of hope is that the recent discovers about narcolepsy may spark significant interest among immunologists - now that it is clear that narcolepsy is an autoimmune disease.
None of that rambling helps my overly sleepy state, however. I remain proud of myself for accepting my situation and for pushing ahead with the best attitude that I can muster. Nonetheless, I abhor that mowing my small lawn today completely did me in. That comes on the heels of a Saturday and Sunday that saw me accomplish little because I was drained from talking to my wife and from confronting another parent. All of that happened on Saturday, but I needed all of Sunday to recover. In fact, I would argue that some of my current lethargy is also linked to my mental and emotional exertion on Saturday. While I know that I am doing the best that I can, the rational side of my brain is screaming about how pathetic the reality is. Yet, I have no choice, but to breath and to accept my disability.
I am looking forward to the Narcolepsy Network conference this weekend. While my relationship with the organization feels shaky at this time, I am thrilled to be going somewhere where my "norm" IS the "norm." Sitting in a room, or even having a casual conversation with a fellow PWN, is tremendously empowering. It reminds me that I am not insane. It also underscores for me that this disease is awful, and yet it is also manageable. Granted, I need to keep working to accept my limits, but I can be productive even with narcolepsy impeding me much of the time.
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.
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!
Tuesday, June 30, 2009
Massive Mayhem
I truly love that even the transition into summer break takes days of adjustment. One would think that a guy with narcolepsy would find it thrilling to begin a month and a half of relaxing. If only it were that easy. As I continue to remind myself, ANY change in my daily routine throws me for a loop. I tend to be more tense and to snap at people more rapidly. While I am making the shift better this time, I still find it frustrating - and stupid. Sadly, I am sure that no matter how long I continue to "learn" about living with narcolepsy, the act of moving from one daily schedule to another will continue to be difficult for me.
The up side is that I did get up today and exercise. That alone is a huge step for me. Unfortunately, I know that I am still recovering from last week. Thus, the exercise sapped me for a couple of hours. After resting, though, I got some work done. I even decided to have some fun after that, but invariably that led to trouble. My daughter decided that she wanted to play with the Wii too. Things were going great, but then after we each did our "Wii Fitness" on Wii Sports - which is an individual activity - she simply started doing something else individually. When I questioned her, I got a rude retort. I have no doubt that my daughter thought that she was being funny, but when I challenged her on that comment, I got a second rude retort. Since I was tired and crabby, I snapped back and a lovely fight ensued. It then continued as my attempted to reconcile. And, adding a second layer to my disappointment in myself, my wife was still home and found herself embroiled in the disagreement.
My daughter and I were able to reconcile and apologize to each other, but I hate that I was unable to keep myself in check when my daughter acted like a normal pre-teen. While her behavior was not appropriate, I can't lash out at her. I did contain my frustration far better than I have in the past, but the reality is that I still reacted rashly and immaturely. As the parent, I need to give her the space to be angsty, and I need to be patient enough to let her settle down before re-engaging about the situation. I do know that I happened things "better," but I need to keep pushing myself on this. The narcolepsy definitely complicates the situation, but my relationship with my daughter is far too important to let this medical menace jeopardize it.
The other difficult item to accept today was the fact that I nearly fell asleep in a chair tonight. If that was happening at 10 PM, I would be okay with it, but I was dozing and drifting heavily at 6 PM. Now, I know that I had a productive (and stressful) day. I also know that transitional periods are tough for me. But, it remains horribly humbling that I spent most of my day sitting around, yet I can't stay awake past 6 PM even with 60 mg of amphetamine in my body. Seriously, you GOTTA love this condition - NOT! Obviously, I rallied. I even got a few other things done. Hopefully, July will hold more hope for a solid schedule, smoother transitions into my new days, and for more patience with my incredible and wonderful daughter.
The up side is that I did get up today and exercise. That alone is a huge step for me. Unfortunately, I know that I am still recovering from last week. Thus, the exercise sapped me for a couple of hours. After resting, though, I got some work done. I even decided to have some fun after that, but invariably that led to trouble. My daughter decided that she wanted to play with the Wii too. Things were going great, but then after we each did our "Wii Fitness" on Wii Sports - which is an individual activity - she simply started doing something else individually. When I questioned her, I got a rude retort. I have no doubt that my daughter thought that she was being funny, but when I challenged her on that comment, I got a second rude retort. Since I was tired and crabby, I snapped back and a lovely fight ensued. It then continued as my attempted to reconcile. And, adding a second layer to my disappointment in myself, my wife was still home and found herself embroiled in the disagreement.
My daughter and I were able to reconcile and apologize to each other, but I hate that I was unable to keep myself in check when my daughter acted like a normal pre-teen. While her behavior was not appropriate, I can't lash out at her. I did contain my frustration far better than I have in the past, but the reality is that I still reacted rashly and immaturely. As the parent, I need to give her the space to be angsty, and I need to be patient enough to let her settle down before re-engaging about the situation. I do know that I happened things "better," but I need to keep pushing myself on this. The narcolepsy definitely complicates the situation, but my relationship with my daughter is far too important to let this medical menace jeopardize it.
The other difficult item to accept today was the fact that I nearly fell asleep in a chair tonight. If that was happening at 10 PM, I would be okay with it, but I was dozing and drifting heavily at 6 PM. Now, I know that I had a productive (and stressful) day. I also know that transitional periods are tough for me. But, it remains horribly humbling that I spent most of my day sitting around, yet I can't stay awake past 6 PM even with 60 mg of amphetamine in my body. Seriously, you GOTTA love this condition - NOT! Obviously, I rallied. I even got a few other things done. Hopefully, July will hold more hope for a solid schedule, smoother transitions into my new days, and for more patience with my incredible and wonderful daughter.
Sunday, June 21, 2009
Sunday Struggles
Today is Father's Day, and yet the only real emotion I have managed is frustrated anger. We went to a Minnesota Twins game last night to see an old friend. The game was good, except that the Twins lost, but we got home late. Because I had food at the game past 8 p.m., I stayed up until 11:15. When I finally took my Xyrem and went to bed, I was overly warm. My wife and I were intimate for a time, but things just were not right. Plus, the Xyrem can make me more than a little goofy. I did finally fall asleep. I even managed to take my second dose last night, although I once again slept through my alarm.
When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.
My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.
Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.
Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.
Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.
Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).
I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.
When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.
My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.
Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.
Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.
Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.
Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).
I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.
Tuesday, May 5, 2009
Flailing Frustration
Knowing that I have narcolepsy, I work diligently to have realistic expectations for myself. Certainly, I continue to overestimate (grossly) what I can accomplish - in a day, in a week, in a month. That said, though, I have gotten significantly better both in my estimation and in my acceptance of what I can accomplish. Nevertheless, I continue to have difficult and aggravating experiences focused on my inability to do even simple tasks.
Over the past weekend, I desperately wanted to clean our home office - finally. It has been a major goal for months. I will get close, but never quite finish the job. Even with the exhausting week that I experience at the end of April, I made some progress on Saturday. Sunday proved to be a whole other matter, though. I awoke with a tremendous headache which only got worse. I did try to continue my efforts in the office, but would find myself aimlessly drifting from one thought to another. Rather than being able to clean a small section, I struggled to form even basic thoughts.
Eventually, I found the pain subsiding. But, I was not content to clean one or two more things. Instead, I worked to restring one of our cellular shades. I quickly figured out what I needed to do, but the process itself was tedious and nerve-wracking. When I finally finished, and had (stall HAVE) the shade working, I went to see if my wife wanted to look at it. Turns out that it was 1 AM. I had completely missed my first Xyrem dose - oops. I am proud that I got the cellular blind ready for us, but I know that the price I paid for that was likely too high. I functioned decently on Monday and today, but I also know that I was not entirely comfortable with my focus. My judgment and cognition go out the window when I am overly run down. I just wish that I could be lucid when I WANT to be, but that is no longer reality.
Thus, I must continue to work on acceptance and balance. Those things will come with time. I am stunned at how well I do on most days, but that does not mean that I have to like that reality.
Over the past weekend, I desperately wanted to clean our home office - finally. It has been a major goal for months. I will get close, but never quite finish the job. Even with the exhausting week that I experience at the end of April, I made some progress on Saturday. Sunday proved to be a whole other matter, though. I awoke with a tremendous headache which only got worse. I did try to continue my efforts in the office, but would find myself aimlessly drifting from one thought to another. Rather than being able to clean a small section, I struggled to form even basic thoughts.
Eventually, I found the pain subsiding. But, I was not content to clean one or two more things. Instead, I worked to restring one of our cellular shades. I quickly figured out what I needed to do, but the process itself was tedious and nerve-wracking. When I finally finished, and had (stall HAVE) the shade working, I went to see if my wife wanted to look at it. Turns out that it was 1 AM. I had completely missed my first Xyrem dose - oops. I am proud that I got the cellular blind ready for us, but I know that the price I paid for that was likely too high. I functioned decently on Monday and today, but I also know that I was not entirely comfortable with my focus. My judgment and cognition go out the window when I am overly run down. I just wish that I could be lucid when I WANT to be, but that is no longer reality.
Thus, I must continue to work on acceptance and balance. Those things will come with time. I am stunned at how well I do on most days, but that does not mean that I have to like that reality.
Friday, May 1, 2009
May Magic
Yet again, time has had its way with me. My calendar seems to jump entire weeks at a time. Thus, May has arrived and my brain is still in the middle of April. The frenetic pace of school has not lessened, rather it has picked up. Today, I managed to finish putting comments on numerous papers, to copy our quiz, to help plan the day, to re-write the same quiz, and to connect with a number of students. The added "bonus" is that I did all of that during a day that was shortened for various reasons. We also had conferences yesterday, and my daughter had to go to the ER the night before. So, I slept little on Wednesday, talked to parents for hours on Thursday, and eked every ounce out of my body on Friday. While I am grateful that I can handle a day like that, I also know that I will be worthless for much of this weekend.
I also realize that I am getting more and more run down as the end of the school year approaches. I find it fascinating that I am beginning to know myself and my body well enough that I can recognize when I am pushing too hard. Unfortunately, I am still too stubborn to do much about that. I know that I will continue to push when I should stop - like I did today. I "survived," but that came at a price. The lingering congestion and illness that I seem to still have will worsen. There is no question in my mind about that. I also know that I will do my best to exploit the boost I get from the improving weather.
While temperatures did dip during the past week, the averages are now consistently in the 60+ range. That is glorious. I have come to abhor winter. The warmth coupled with the ever growing daylight definitely lift my spirits. Of course, that too has a down side. More light means that I am tempted to push myself even more. Even the idea of May gets me pumped. More daylight and milder days portend summer's arrival. Summer means a time to re-charge and MITY. Yet, my extroverted, crazy brain transforms those good vibes into an insane drive to complete everything before the school year ends. While the idea is lovely, the reality is that I should NEVER listen to grand ideas like that. My body can't handle them, but my stupid brain never seems to remember that. Hopefully, I am gaining enough wisdom that I will intervene on my own behalf. Nonetheless, I am thrilled that I am entering the final month of school, even if it means that I somehow lost the latter half of April.
I also realize that I am getting more and more run down as the end of the school year approaches. I find it fascinating that I am beginning to know myself and my body well enough that I can recognize when I am pushing too hard. Unfortunately, I am still too stubborn to do much about that. I know that I will continue to push when I should stop - like I did today. I "survived," but that came at a price. The lingering congestion and illness that I seem to still have will worsen. There is no question in my mind about that. I also know that I will do my best to exploit the boost I get from the improving weather.
While temperatures did dip during the past week, the averages are now consistently in the 60+ range. That is glorious. I have come to abhor winter. The warmth coupled with the ever growing daylight definitely lift my spirits. Of course, that too has a down side. More light means that I am tempted to push myself even more. Even the idea of May gets me pumped. More daylight and milder days portend summer's arrival. Summer means a time to re-charge and MITY. Yet, my extroverted, crazy brain transforms those good vibes into an insane drive to complete everything before the school year ends. While the idea is lovely, the reality is that I should NEVER listen to grand ideas like that. My body can't handle them, but my stupid brain never seems to remember that. Hopefully, I am gaining enough wisdom that I will intervene on my own behalf. Nonetheless, I am thrilled that I am entering the final month of school, even if it means that I somehow lost the latter half of April.
Sunday, September 7, 2008
Depressing Dangers
I find it fascinating how a weekend can spin on a dime. Yesterday was fantastic, while today is not. My day has been alright. I actually held to some scheduled times that I set for myself (which is progress), but my mid-afternoon and evening fell apart. In some ways I got swept up in "drama," as my students would call it. Of course, the reality of the situations is far more than that. One of the ugliest aspects of narcolepsy is the depression that it can cause.
In recent days a friend (one of many I have met in online narcolepsy support groups) has written a few things that have me deeply concerned. She is definitely depressed. The disease alone can do that. Imagine the reality of it. Narcolepsy doesn't allow you to sleep well (often even if you are one a medication to help you sleep). As a result you spend your entire day exhaust (often even if you take some type of stimulant). Beyond feeling exhausted, you might have cataplexy and lose control of certain muscles at times (making you feel clumsy and awkward), but even if you don't have cataplexy, the fatigue drags at you. You can't do everything that think think you should. Others wonder why you aren't getting your work done. Many narcoleptics are called lazy by their colleagues and family. They are told to get more sleep or to drink some coffee. In many ways the disease is a nightmare. Narcoleptics look and (generally) act like able-bodied persons, but they actually have a debilitating disease. One that forces them to perform far below what they (and others) think should be the case. How could that cause depression?!?
My friend, though, has even more going on in her life. She recently moved in an attempt to get her life back on track. The move has left her in a new place with few friends. Worst of all, she is among the millions of U.S. citizens without health insurance. She is running out of narcolepsy meds and can't see a doctor. Needless to say, I am worried.
One of her posts, though, caused another narcoleptic a great deal of stress. This second woman saw my friend's post, and it cut this woman to the core. My friend's post in my eyes is a cry for help, but due to events and stress in this other narcoleptic's life, she saw it as counterproductive and giving up. Much angst ensued, including two other friends getting involved and responding with posts. In the end I wound up trading a number of messages directly to the narcoleptic woman who got so upset at my friend's message. It still bothers her, but I think she simply appreciated being able to tell someone her story.
In all of the consternation, I kept reminding myself how fragile all of this is. Narcolepsy truly is an insane condition. I take drugs to help me sleep at night and others to help me stay awake during the day. That is wrong! It is a complete paradox. Even more amazing is the fact that so many narcoleptics fight like mad to continue to function. A good friend offered the thought to me that we narcoleptics have to have this condition. If we didn't, we would wind up taking over the world. It sounds funny - until you meet other narcoleptics and realize how hard we all drive ourselves (and yet still feel inferior).
While all of this has been happening around my friend's post, I also had the chance to read up on the life of this amazing sixteen year old, narcoleptic girl in Singapore. This young woman realized that something was wrong with her health, disregarded every message that she got that it was in her head, researched like mad on the Internet, read about narcolepsy, dialogued with a number of us online, made her own appointments with a sleep doctor, and eventually got diagnosed. She also managed to do this within a month or so. Yet, in the face of this, her parents still think that she is lazy. She is in trouble at school because she is not performing well academically (they allow her no excuses), and she thinks she is letting people down. How sad is that? For any sixteen year old to be that resourceful is amazing, but add in the fact that she has narcolepsy, and she should be receiving medals not insults.
I wish there was some way to explain to people that narcolepsy is incredibly hard. Even as I learn to live with it, I daily fight my own messages that I "should" be doing more. The fact of the matter is that without medication my brain function would be comparable to a non-narcoletic who had not slept for 72 hours. With medication it is better than that, but I am still wiped out most of the time. AND, my narcolepsy is not nearly as severe as others. It saddens me so that many of the narcoleptics that I know face scorn from the people closest to them - parents, siblings, friends. How is that just? I hope that all of the people who are on my mind tonight - my depressed friend, the upset woman who is my new friend, the two others who engaged in the dialogue, the young woman in Singapore - are all able to find some peace and strength in their lives. I am blessed to have the family and friends that I do. I am also fortunate to have a local support group that is growing stronger. Plus, I get to go to a national convention for narcoleptics in less than a month, or at least I think I do. Amid the other stressors today, I learned that my account on the Narcoleptic Network Online Community is not working. When I couldn't log in, I tried to use the help functions, only to be told that "no member has that information." So, I either did something very wrong, or it is some computer glitch. I sent off a couple of requests for help, but have heard nothing yet. Invariably, I am already blaming myself, and a part of my brain is convinced that I have gotten myself thrown out of the group before I ever got to go to the convention. While the thinking is completely irrational, it starts to sound pretty accurate as the depression creeps in. Let's hope that I am totally wrong and am able to access my account again soon.
In recent days a friend (one of many I have met in online narcolepsy support groups) has written a few things that have me deeply concerned. She is definitely depressed. The disease alone can do that. Imagine the reality of it. Narcolepsy doesn't allow you to sleep well (often even if you are one a medication to help you sleep). As a result you spend your entire day exhaust (often even if you take some type of stimulant). Beyond feeling exhausted, you might have cataplexy and lose control of certain muscles at times (making you feel clumsy and awkward), but even if you don't have cataplexy, the fatigue drags at you. You can't do everything that think think you should. Others wonder why you aren't getting your work done. Many narcoleptics are called lazy by their colleagues and family. They are told to get more sleep or to drink some coffee. In many ways the disease is a nightmare. Narcoleptics look and (generally) act like able-bodied persons, but they actually have a debilitating disease. One that forces them to perform far below what they (and others) think should be the case. How could that cause depression?!?
My friend, though, has even more going on in her life. She recently moved in an attempt to get her life back on track. The move has left her in a new place with few friends. Worst of all, she is among the millions of U.S. citizens without health insurance. She is running out of narcolepsy meds and can't see a doctor. Needless to say, I am worried.
One of her posts, though, caused another narcoleptic a great deal of stress. This second woman saw my friend's post, and it cut this woman to the core. My friend's post in my eyes is a cry for help, but due to events and stress in this other narcoleptic's life, she saw it as counterproductive and giving up. Much angst ensued, including two other friends getting involved and responding with posts. In the end I wound up trading a number of messages directly to the narcoleptic woman who got so upset at my friend's message. It still bothers her, but I think she simply appreciated being able to tell someone her story.
In all of the consternation, I kept reminding myself how fragile all of this is. Narcolepsy truly is an insane condition. I take drugs to help me sleep at night and others to help me stay awake during the day. That is wrong! It is a complete paradox. Even more amazing is the fact that so many narcoleptics fight like mad to continue to function. A good friend offered the thought to me that we narcoleptics have to have this condition. If we didn't, we would wind up taking over the world. It sounds funny - until you meet other narcoleptics and realize how hard we all drive ourselves (and yet still feel inferior).
While all of this has been happening around my friend's post, I also had the chance to read up on the life of this amazing sixteen year old, narcoleptic girl in Singapore. This young woman realized that something was wrong with her health, disregarded every message that she got that it was in her head, researched like mad on the Internet, read about narcolepsy, dialogued with a number of us online, made her own appointments with a sleep doctor, and eventually got diagnosed. She also managed to do this within a month or so. Yet, in the face of this, her parents still think that she is lazy. She is in trouble at school because she is not performing well academically (they allow her no excuses), and she thinks she is letting people down. How sad is that? For any sixteen year old to be that resourceful is amazing, but add in the fact that she has narcolepsy, and she should be receiving medals not insults.
I wish there was some way to explain to people that narcolepsy is incredibly hard. Even as I learn to live with it, I daily fight my own messages that I "should" be doing more. The fact of the matter is that without medication my brain function would be comparable to a non-narcoletic who had not slept for 72 hours. With medication it is better than that, but I am still wiped out most of the time. AND, my narcolepsy is not nearly as severe as others. It saddens me so that many of the narcoleptics that I know face scorn from the people closest to them - parents, siblings, friends. How is that just? I hope that all of the people who are on my mind tonight - my depressed friend, the upset woman who is my new friend, the two others who engaged in the dialogue, the young woman in Singapore - are all able to find some peace and strength in their lives. I am blessed to have the family and friends that I do. I am also fortunate to have a local support group that is growing stronger. Plus, I get to go to a national convention for narcoleptics in less than a month, or at least I think I do. Amid the other stressors today, I learned that my account on the Narcoleptic Network Online Community is not working. When I couldn't log in, I tried to use the help functions, only to be told that "no member has that information." So, I either did something very wrong, or it is some computer glitch. I sent off a couple of requests for help, but have heard nothing yet. Invariably, I am already blaming myself, and a part of my brain is convinced that I have gotten myself thrown out of the group before I ever got to go to the convention. While the thinking is completely irrational, it starts to sound pretty accurate as the depression creeps in. Let's hope that I am totally wrong and am able to access my account again soon.
Monday, June 23, 2008
Learning Lessons, Living Life
I am limited. I can't do nearly what I think I can, and that is okay. I need to make HUGE signs with that message on it. Then I need to post them - in my office, in my car (although not on the windshield), in my classroom, in my heart. Accepting the reality of narcolepsy remains one of my largest struggles. Today, I did more correcting than I can ever remember doing in a single day of MITY. More impressively, I did that after waking up completely exhausted. Major victory, right? Apparently it is everywhere but my brain.
By the end of class today, my sixth full day in a row (a new record since the diagnosis), all I could recognize was that I was further behind in terms of comments than when I had started the day. How could that be possible after my most productive day ever? Twenty-seven brilliant teens don't just chill in week two. They write more! Somehow, I thought I could come home and get more work done. I didn't, at least not right away. I did edit a fee more things tonight. But, now it is technically tomorrow (Tuesday). I will sleep soon, hoping to get more done during class. Still, the reality is that I can't do this - not the way I want to do it.
Fortunately, I am well aware that I am giving what I can. I also know that our students are having a wonderful time in class. I need to internalize that more, so I berate myself less. Sadly, such things are easily said, but far from easily done. Coming to terms with all of this will be the journey of my life - it is the reason for this blog. I may not like it, but I can never change it. Thus, I look for the joy and ride out the pain.
I do need to make wiser decisions, though. It finally struck me this morning that trying to team-teach a full time class for two weeks is a massive strain on me, but trying to do another one solo (even for six students) is insane! I will do a good job and survive Session B, but something miraculous will have to take place for me to do it again next year. As much as I love MITY, I need to think about things in broader terms. My year long teaching exhausts me. MITY recharges me in some ways, but it also pushes me even harder - especially our Session A class. I don't want to let down co-teacher, but even more so I can stand the idea of disappointing these amazing young women and men. It was hard to articulate, even to myself today, but this is likely my final year for Session B. While that makes me sad, I know it is right.
This disease is hard. It continues to challenge every aspect of my life. Forcing me to examine my priorities, narcolepsy also helps me to sort through the chaos of reality. Rarely have I had to make definitive choices in my life. That has put me in an elite minority of privileged people for years. That is no longer the case, but it means that my true character has a chance to shine. I can rise to the occasion by doing what my body allows, or I can become bitter and petulant railing against a condition that I can't control. I definitely hope for the former, but know that the latter is also possible. I firmly believe that God gives us no more than we can handle, but I often wonder if I am wise enough to let God help me find the strength for this. Fortunately, I keep getting better at looking for help. Let's hope that trend continues.
By the end of class today, my sixth full day in a row (a new record since the diagnosis), all I could recognize was that I was further behind in terms of comments than when I had started the day. How could that be possible after my most productive day ever? Twenty-seven brilliant teens don't just chill in week two. They write more! Somehow, I thought I could come home and get more work done. I didn't, at least not right away. I did edit a fee more things tonight. But, now it is technically tomorrow (Tuesday). I will sleep soon, hoping to get more done during class. Still, the reality is that I can't do this - not the way I want to do it.
Fortunately, I am well aware that I am giving what I can. I also know that our students are having a wonderful time in class. I need to internalize that more, so I berate myself less. Sadly, such things are easily said, but far from easily done. Coming to terms with all of this will be the journey of my life - it is the reason for this blog. I may not like it, but I can never change it. Thus, I look for the joy and ride out the pain.
I do need to make wiser decisions, though. It finally struck me this morning that trying to team-teach a full time class for two weeks is a massive strain on me, but trying to do another one solo (even for six students) is insane! I will do a good job and survive Session B, but something miraculous will have to take place for me to do it again next year. As much as I love MITY, I need to think about things in broader terms. My year long teaching exhausts me. MITY recharges me in some ways, but it also pushes me even harder - especially our Session A class. I don't want to let down co-teacher, but even more so I can stand the idea of disappointing these amazing young women and men. It was hard to articulate, even to myself today, but this is likely my final year for Session B. While that makes me sad, I know it is right.
This disease is hard. It continues to challenge every aspect of my life. Forcing me to examine my priorities, narcolepsy also helps me to sort through the chaos of reality. Rarely have I had to make definitive choices in my life. That has put me in an elite minority of privileged people for years. That is no longer the case, but it means that my true character has a chance to shine. I can rise to the occasion by doing what my body allows, or I can become bitter and petulant railing against a condition that I can't control. I definitely hope for the former, but know that the latter is also possible. I firmly believe that God gives us no more than we can handle, but I often wonder if I am wise enough to let God help me find the strength for this. Fortunately, I keep getting better at looking for help. Let's hope that trend continues.
Subscribe to:
Posts (Atom)
Posts
