Yesterday, I had an incredible moment. The day had been exhausting. In fact, I was spent before I taught my first class of the day. Yet, I somehow found a tremendous reserve at the end of the day. I attended a meeting with other teachers of our grade nine interdisciplinary course. Beyond English, Religion and Social Studies, the course is tasked with introducing technology skills and concepts to our first year students. As technology has shifted, our skills list has not. The technology department wants to update the skills, but wanted to hear from the teachers what was currently being done and what different teams might want to do in the future. For me the technology component was only a portion of my enthusiasm. I taught a section of the course for three years, but that ended two years ago. Starting next fall, I will be working with two amazing teachers. I honestly can't wait for the course to start. My anticipation was the driving force behind the surge.
What stunned me about the entire meeting is that I could feel my energy growing. I have realized in the past month that my extroverted nature has always been one of my best "medications" for narcolepsy. I have even recognized how my current teaching load, and its lack of interactive moments, has been a portion of my struggle this past year. But, I should never have felt the rush that I did yesterday. I had nothing when I entered the meeting. I was so wired by the end that one of my team members, the two technology department members and I spent another 45 minutes talking about further ideas. Of course, the downside was that my energy crashed as I was driving home. I was a tad worried, but made it home safely. I even rallied to head out again for a set of errands. That hasn't happened for months. More than anything, it has given me hope.
I know that my current course load has been dragging me down, but I don't think I fully realized it until yesterday. Many things will go wrong next year. Plenty of stresses will arise. The technology elements we discussed yesterday will certainly create a slew of headaches at times. I have no delusions that my next school year will be paradise, yet I feel giddy whenever I think about it. My week has been crazy and stressful, but I awoke today a little lighter. I had more verve throughout the day. While nothing is ever easy with narcolepsy, I firmly believe that my life will get better next year. I will still be tired every moment of the day, but the chance to interact with my team teachers and my students every day will help counteract my excessive daytime sleepiness. It won't "cure" me, but it will be much more fun to be a teacher.
The two other lessons from yesterday are also vitally important to me. I must remember how important it is for me to reach out to others. I gain strength from engaging, not retreating. At the same time, I do need to recognize that constantly throwing myself into the fray will lead to me crashing so hard that I will endanger myself and others. I was caught off guard by my burst of energy and let it explode. As a result, I was caught off guard by the tremendous crash that followed and put myself at risk. Balance remains the key. I will find more life in my teaching next year, but I must still be wise enough to limit my output, particularly when I am feeling great. I desperately want summer to arrive, but I have never been more excited for the fall to start. As I have said before, no word fits life better than paradox!
Wednesday, April 30, 2008
Monday, April 28, 2008
Not a Good Day
I knew that today was going to be stressful. My daughter was sick yesterday, so I knew she might still be ill today. Last week, I missed a day of school and lost a DVD, resulting in my course schedule getting off track. Best of all, I had an appointment with a specialist, a dermatologist, and I rarely have "good" experiences with specialists. Hope springs eternal, though, so I woke thinking the day might be fine.
The first clue should have been waking up at 4:15 AM. I had no recollection of taking my second dose of medicine at 1 AM, but I must have since the vial was empty. I have slept through that dose quite a few times, but I have NEVER forgotten it whe nI have taken it. But being a bit groggy was only a small issue, or so I thought. The next clue was realizing at 5:45 AM that my daughter was not getting out of her bed, even with her horrid Roger Rabbit alarm blaring next to her head. My wife did get her "up," but our daughter promptly crashed into our bed. At 6:20, the bleary eyed eleven year old did get out of bed. She even made it into school clothes and ate breakfast, but when she returned to our bedroom at 6:45, I knew she was doomed. Between the congested nasal speech and the washed out eyes, my daughter sounded and looked horrid. I told her to get under the covers for 15 minutes; we would decide after she rested more. She immediately fell asleep. I made the call at 7:05 AM - no school for her! Of course, I still needed to go to my school...
My daughter did try to watch some television, but once again fell asleep. She eventually got back in bed and slept from 7:30 until 9:15. I edited my assignment sheets for my film study class, knowing that I only had 8 minutes in each class to explain the assignments, introduce Rear Window, and get the film started. Of course, now I would be doing it with my sick daughter in the room. As my frenzy increased, I kept remembering "one more thing" I had forgotten for my dermatology appointment. After the FIFTH one, I simply stopped to breathe for a few minutes. Somehow, I got together what I needed and got my assignments sheets set for school. I got my daughter awake, and I even remembered all of my bags for school. I was sure I had seen the worst of my day, until I got to school.
We arrived, and I had 15 minutes to make my copies. But, I had carried into school ALL of my meds (one of the many things I had remembered to pull together for the doctor). Unfortunately, some of my meds should NEVER be brought into a school. So, I ran them back to the car. I did manage to get the copies made, but had to rush to my classroom and quickly cut one of the handouts in half. In a mad whirlwind I passed out the sheets, introduced the film, explained the assignments and started the movie at the right time. Then, I had to get to work on the information I still needed for the doctor. While my next class was a tad calmer, the last one started even more chaotically than the first. I, again, got to the room just before the bell. I also had many students straggle in late. And, that class is my chatty one. Somehow, it all worked, but I still had a ton to do for the doctor. In fact I had so much that my plan to leave the building by 2 PM at the latest completely fell apart. I had hoped to arrive at the appointment early, in an effort to get my daughter home as soon as possible. Instead, we finally made it to the car at 2:50 - with the appointment looming at 3 PM.
We got into the office by 3; we might have even had a minute to spare. But, the line kept me from checking in until 3:10. I then sat for the next 35 minutes. I know how doctor's offices work. Sometimes everything clips along, other times everything bogs down. Unfortunately, it seemed that I was the only one on hold. MANY people who arrived after me got to see their dermatologists while I got to wait. Still, I had faith. Mine just took extra time with patients; she simply chose to be overly thorough.
The whole reason I was seeing a dermatologist was dyshidrotic eczema. It is this incredibly annoying condition which features tiny flat blisters on your hands (and sometimes your feet). They are hard to even notice, but they secrete a fluid that irritates the skin. It feels like having an allergic reaction to your own sweat. Weird, and a total pain. Mine started in January. I have been using a topical steroid cream on it, but you should only use that for a couple months. Plus, the cream usually clears it up. Obviously, I'm special. The other reason for the visit is that in the last month I have had an explosion of acne on my forehead and temples.
So, I finally get called into the doctor at 3:45. The nurse quickly confirms why I am there. She focuses on the acne, but I remind her about the dyshidrosis. The doctor enters within minutes. She too focuses on the acne. She also discusses my feet and their sweating. Now, I did tell her and the nurse that I initially seemed to have the dyshidrosis on both my hands and my feet, but the hands were the worst part. Finally, she looked at my hands. She commented that they didn't look too bad considering I hadn't used the steroid cream for a week. In the end she wrote three prescriptions - 2 for the acne and 1 for my feet. For the dyshidrosis, she told me to use the steroid cream "since there is not much that can be done for it and it tends to be chronic." Now, I had expected that, but I had hoped for a bit more exploration as to WHY this was happening. I even prompted her by asking if the stimulants could be amplifying the dyshidrosis. She had no idea, but thought the possibility was intriguing. My daughter and I were back in the car by 3:56.
So, I sat in a doctor's office for 45 minutes, after spending a majority of my day compiling information for the appointment, to see the nurse and the doctor for approximately 10-15 minutes. Now, I know that even specialists are on the clock these days, but this was ridiculous. I developed dyshidrosis at the age of 39 and a half, and after almost 4 months of treating it, I still have active issues with it. I also have suddenly developed significant acne. Shouldn't we explore that a bit? Did she even have time to glance at any of the information or history that I provided? I doubt it. She kindly told me to call her if things did not get better. I certainly will. Perhaps, I am completely crazy. Maybe, things will get better within a month or two. I hope so, but I doubt it.
I know this is not her fault. I am sure that she is a great doctor. Sadly, we only see the brokenness in the system when we are stuck in it. How could the dermatologist have any idea how bizarre my last seven years have been? How could she know that I have been positive on a mono spot test four times, with two of those coinciding with skin issues? Was much of it in the material I gave her? Yes. Could she have possibly have read it all? Never. She wouldn't have had time to read it all even if I had given it to her a week ago. Why? She is likely scheduled to see 5-6 patients every hour. I don't "fit" into any box. Actually, I fit PERFECTLY into the dyshidrotic eczema box, but since no one knows how or why that condition develops, it is one more place to treat the systems - just like narcolepsy, and irritable bowel syndrome, and my type of chronic sinusitis. Maybe I am crazy, or maybe I am making myself sick.
All I know is that I am tired of going to doctors. I will still go, but I am far less vested in what any doctor has to say. That is good. A year ago, I think an appointment like today would have put me into a funk for days. Today, I am simply angry. I know that my dermatologist did the best she could; it is just that her best (or likely anyone's) was pathetic, but that is a result of medicine functioning as a business rather than as a vocation. She needs to see those 5-6 patients every hour so she can receive an appropriate salary, and the practice can still be profitable.
I am so glad to know that my acupuncture helps with the dyshidrosis too. I also know that I am the one who will make the biggest difference in any change in my physical and mental state. I can't control my narcolepsy, or my dyshidrotic eczema, or any of my other goofy medical conditions. What I can do is continue to work for balance. I will continue to have days like this one. Rather than rail against them, I can accept them and know that tomorrow will come with its challenges and joys. There is always another moment, another chance.
The first clue should have been waking up at 4:15 AM. I had no recollection of taking my second dose of medicine at 1 AM, but I must have since the vial was empty. I have slept through that dose quite a few times, but I have NEVER forgotten it whe nI have taken it. But being a bit groggy was only a small issue, or so I thought. The next clue was realizing at 5:45 AM that my daughter was not getting out of her bed, even with her horrid Roger Rabbit alarm blaring next to her head. My wife did get her "up," but our daughter promptly crashed into our bed. At 6:20, the bleary eyed eleven year old did get out of bed. She even made it into school clothes and ate breakfast, but when she returned to our bedroom at 6:45, I knew she was doomed. Between the congested nasal speech and the washed out eyes, my daughter sounded and looked horrid. I told her to get under the covers for 15 minutes; we would decide after she rested more. She immediately fell asleep. I made the call at 7:05 AM - no school for her! Of course, I still needed to go to my school...
My daughter did try to watch some television, but once again fell asleep. She eventually got back in bed and slept from 7:30 until 9:15. I edited my assignment sheets for my film study class, knowing that I only had 8 minutes in each class to explain the assignments, introduce Rear Window, and get the film started. Of course, now I would be doing it with my sick daughter in the room. As my frenzy increased, I kept remembering "one more thing" I had forgotten for my dermatology appointment. After the FIFTH one, I simply stopped to breathe for a few minutes. Somehow, I got together what I needed and got my assignments sheets set for school. I got my daughter awake, and I even remembered all of my bags for school. I was sure I had seen the worst of my day, until I got to school.
We arrived, and I had 15 minutes to make my copies. But, I had carried into school ALL of my meds (one of the many things I had remembered to pull together for the doctor). Unfortunately, some of my meds should NEVER be brought into a school. So, I ran them back to the car. I did manage to get the copies made, but had to rush to my classroom and quickly cut one of the handouts in half. In a mad whirlwind I passed out the sheets, introduced the film, explained the assignments and started the movie at the right time. Then, I had to get to work on the information I still needed for the doctor. While my next class was a tad calmer, the last one started even more chaotically than the first. I, again, got to the room just before the bell. I also had many students straggle in late. And, that class is my chatty one. Somehow, it all worked, but I still had a ton to do for the doctor. In fact I had so much that my plan to leave the building by 2 PM at the latest completely fell apart. I had hoped to arrive at the appointment early, in an effort to get my daughter home as soon as possible. Instead, we finally made it to the car at 2:50 - with the appointment looming at 3 PM.
We got into the office by 3; we might have even had a minute to spare. But, the line kept me from checking in until 3:10. I then sat for the next 35 minutes. I know how doctor's offices work. Sometimes everything clips along, other times everything bogs down. Unfortunately, it seemed that I was the only one on hold. MANY people who arrived after me got to see their dermatologists while I got to wait. Still, I had faith. Mine just took extra time with patients; she simply chose to be overly thorough.
The whole reason I was seeing a dermatologist was dyshidrotic eczema. It is this incredibly annoying condition which features tiny flat blisters on your hands (and sometimes your feet). They are hard to even notice, but they secrete a fluid that irritates the skin. It feels like having an allergic reaction to your own sweat. Weird, and a total pain. Mine started in January. I have been using a topical steroid cream on it, but you should only use that for a couple months. Plus, the cream usually clears it up. Obviously, I'm special. The other reason for the visit is that in the last month I have had an explosion of acne on my forehead and temples.
So, I finally get called into the doctor at 3:45. The nurse quickly confirms why I am there. She focuses on the acne, but I remind her about the dyshidrosis. The doctor enters within minutes. She too focuses on the acne. She also discusses my feet and their sweating. Now, I did tell her and the nurse that I initially seemed to have the dyshidrosis on both my hands and my feet, but the hands were the worst part. Finally, she looked at my hands. She commented that they didn't look too bad considering I hadn't used the steroid cream for a week. In the end she wrote three prescriptions - 2 for the acne and 1 for my feet. For the dyshidrosis, she told me to use the steroid cream "since there is not much that can be done for it and it tends to be chronic." Now, I had expected that, but I had hoped for a bit more exploration as to WHY this was happening. I even prompted her by asking if the stimulants could be amplifying the dyshidrosis. She had no idea, but thought the possibility was intriguing. My daughter and I were back in the car by 3:56.
So, I sat in a doctor's office for 45 minutes, after spending a majority of my day compiling information for the appointment, to see the nurse and the doctor for approximately 10-15 minutes. Now, I know that even specialists are on the clock these days, but this was ridiculous. I developed dyshidrosis at the age of 39 and a half, and after almost 4 months of treating it, I still have active issues with it. I also have suddenly developed significant acne. Shouldn't we explore that a bit? Did she even have time to glance at any of the information or history that I provided? I doubt it. She kindly told me to call her if things did not get better. I certainly will. Perhaps, I am completely crazy. Maybe, things will get better within a month or two. I hope so, but I doubt it.
I know this is not her fault. I am sure that she is a great doctor. Sadly, we only see the brokenness in the system when we are stuck in it. How could the dermatologist have any idea how bizarre my last seven years have been? How could she know that I have been positive on a mono spot test four times, with two of those coinciding with skin issues? Was much of it in the material I gave her? Yes. Could she have possibly have read it all? Never. She wouldn't have had time to read it all even if I had given it to her a week ago. Why? She is likely scheduled to see 5-6 patients every hour. I don't "fit" into any box. Actually, I fit PERFECTLY into the dyshidrotic eczema box, but since no one knows how or why that condition develops, it is one more place to treat the systems - just like narcolepsy, and irritable bowel syndrome, and my type of chronic sinusitis. Maybe I am crazy, or maybe I am making myself sick.
All I know is that I am tired of going to doctors. I will still go, but I am far less vested in what any doctor has to say. That is good. A year ago, I think an appointment like today would have put me into a funk for days. Today, I am simply angry. I know that my dermatologist did the best she could; it is just that her best (or likely anyone's) was pathetic, but that is a result of medicine functioning as a business rather than as a vocation. She needs to see those 5-6 patients every hour so she can receive an appropriate salary, and the practice can still be profitable.
I am so glad to know that my acupuncture helps with the dyshidrosis too. I also know that I am the one who will make the biggest difference in any change in my physical and mental state. I can't control my narcolepsy, or my dyshidrotic eczema, or any of my other goofy medical conditions. What I can do is continue to work for balance. I will continue to have days like this one. Rather than rail against them, I can accept them and know that tomorrow will come with its challenges and joys. There is always another moment, another chance.
Sunday, April 27, 2008
Confusion
I often wonder how life can seem starkly clear one moment and murkily obscure the next. I had a clear vision yesterday. I knew exactly what I wanted to do - get my prescriptions, do some grocery shopping, clean the office, exercise my knee, correct some papers, go to church, relax in the evening. Somehow, the whole thing imploded. I did what was vital - got pill and food. I did what I needed most - went to church and prayed. Everything else disappeared into the miasma of my mind. I know I still expect too much, but I wish I could find the middle ground. Trying to run multiple errands is always a disaster. I need to recognize that. Yet, I hate the idea of making repeated trips in my car; that's wasteful and foolish, unless you have narcolepsy.
Today has not gone much better. I accomplished a few things around the house, but I feel compelled to do more. And, I can't. I took my daughter and her friend to the spring musical. It was wonderful, but it drained me. Sitting in a theater, watching students I love perform (some for the last time), devoured vast quantities of what I had to give today. It didn't help that my daughter is sick. She needed comfort from me, and I couldn't do it. We did go get another mouse after the show. That lifted her spirits some, but I also expended what remained of my reserve. I had planned to stop and get food for us on the way home, but decided against it. I feared that one more stop would endanger my ability to drive safely. How ridiculous is that? Washing dishes, going to a musical, buying a mouse, and dropping off a friend sapped me dry. I honestly questioned how safe I would be driving if I did one more thing. Clearly, we got home without a problem, but I barely managed two or three sentences of conversation with my wife.
Narcolepsy is insidious. It lurks on the fringe, slowly stalking you. Half the time, it wears you down with stress. You worry about when the pull will get pulled to the extent that you near get to enjoy what energy you have. The other half is worse, at least for me. At those times, narcolepsy moves cat-like in a blinding blur, leveling you. I actually feel like someone cut my power cord. In the face of that, how in the world am I supposed to figure out my limits? The proper answer is, "take life one day, or even one moment, at a time." Sounds good, but rings far more hollow in practice. I find my condition difficult to believe, how could I expect someone else to grasp it? I don't like to be pessimistic about my condition, and I desperately try to avoid holding a pity party for myself. Still, the frequency of inconsistency in this narcoleptic nightmare is truly maddening. I would love even a three day stretch in which each day vaguely resembled the other two.
I doubt I am going to get that, at least anytime soon. Part of the problem is that our home life is tumultuous. All three of us have a variety of commitments and activities. My wife is working constantly these days. She is incredible at what she does, but that also puts her in high demand. My daughter's world is not overly complex, but she is involved in a number of activities and extra school work comes with a few of them. While my schedule is the least demanding, it is also the most transient. Amid special school schedules, doctor visits, physical therapy and my own quirks, I rarely do the same thing at the same time any day of the week - even when I have no responsibilities for my wife or daughter. The next level complicating matters is my anxiety. I remain convinced that I have obligations to everyone I meet. Cognitively, I realize how foolish that is. Unfortunately, that drive (and the resultant shame/anxiety) comes from depth within my core. It is NOT rational, and that is the problem. If those emotions had any grounding in rational thought, I would have figured all of this out ages ago. Finally, the entire experience continues to cause me to react like I am here. When I have a day like today, I ponder it for hours, looking for the solution that will prevent the next one. The problem is that my overthinking IS the issue. I live in my brain far too much. I would get much further, and farther, if I would just "be" with days like today.
Letting the day come to me sounds frightening, but it a change I must embrace. The confusion and chaos I fear is the perfect counterweight to my analytical mind. I just need to accept that. While such an idea flies in the face of everything I have believed, I know in my heart that I must open myself to it. Growth comes through risk. I continue to describe the road ahead as long. Today, it looks infinite. All I need to do, though, is take one step, then follow it with another. I find such strength - frightening as this path seems to be - knowing that many other narcoleptics walk it with me. And, each of us has an army of friends supporting the trip, every inch of it.
Today has not gone much better. I accomplished a few things around the house, but I feel compelled to do more. And, I can't. I took my daughter and her friend to the spring musical. It was wonderful, but it drained me. Sitting in a theater, watching students I love perform (some for the last time), devoured vast quantities of what I had to give today. It didn't help that my daughter is sick. She needed comfort from me, and I couldn't do it. We did go get another mouse after the show. That lifted her spirits some, but I also expended what remained of my reserve. I had planned to stop and get food for us on the way home, but decided against it. I feared that one more stop would endanger my ability to drive safely. How ridiculous is that? Washing dishes, going to a musical, buying a mouse, and dropping off a friend sapped me dry. I honestly questioned how safe I would be driving if I did one more thing. Clearly, we got home without a problem, but I barely managed two or three sentences of conversation with my wife.
Narcolepsy is insidious. It lurks on the fringe, slowly stalking you. Half the time, it wears you down with stress. You worry about when the pull will get pulled to the extent that you near get to enjoy what energy you have. The other half is worse, at least for me. At those times, narcolepsy moves cat-like in a blinding blur, leveling you. I actually feel like someone cut my power cord. In the face of that, how in the world am I supposed to figure out my limits? The proper answer is, "take life one day, or even one moment, at a time." Sounds good, but rings far more hollow in practice. I find my condition difficult to believe, how could I expect someone else to grasp it? I don't like to be pessimistic about my condition, and I desperately try to avoid holding a pity party for myself. Still, the frequency of inconsistency in this narcoleptic nightmare is truly maddening. I would love even a three day stretch in which each day vaguely resembled the other two.
I doubt I am going to get that, at least anytime soon. Part of the problem is that our home life is tumultuous. All three of us have a variety of commitments and activities. My wife is working constantly these days. She is incredible at what she does, but that also puts her in high demand. My daughter's world is not overly complex, but she is involved in a number of activities and extra school work comes with a few of them. While my schedule is the least demanding, it is also the most transient. Amid special school schedules, doctor visits, physical therapy and my own quirks, I rarely do the same thing at the same time any day of the week - even when I have no responsibilities for my wife or daughter. The next level complicating matters is my anxiety. I remain convinced that I have obligations to everyone I meet. Cognitively, I realize how foolish that is. Unfortunately, that drive (and the resultant shame/anxiety) comes from depth within my core. It is NOT rational, and that is the problem. If those emotions had any grounding in rational thought, I would have figured all of this out ages ago. Finally, the entire experience continues to cause me to react like I am here. When I have a day like today, I ponder it for hours, looking for the solution that will prevent the next one. The problem is that my overthinking IS the issue. I live in my brain far too much. I would get much further, and farther, if I would just "be" with days like today.
Letting the day come to me sounds frightening, but it a change I must embrace. The confusion and chaos I fear is the perfect counterweight to my analytical mind. I just need to accept that. While such an idea flies in the face of everything I have believed, I know in my heart that I must open myself to it. Growth comes through risk. I continue to describe the road ahead as long. Today, it looks infinite. All I need to do, though, is take one step, then follow it with another. I find such strength - frightening as this path seems to be - knowing that many other narcoleptics walk it with me. And, each of us has an army of friends supporting the trip, every inch of it.
Saturday, April 26, 2008
Fitness
I have finished one week of physical therapy on my knee, and it is definitely starting to feel better. Of course, I think I still have a long way to go, but it nice to know that I will get back on track physically too. At the same time I have realized this past week that my fitness level is one more casualty (and weapon) in my struggle with narcolepsy.
As I tried to come to terms with all of my medication woes, I certainly could not find the additional energy to run on a treadmill or ride my bike on a trainer. Most days, I was happy to simply make it through the day, spend some time with my wife and daughter, and maybe get something done for my students. Exercising felt like a luxury I couldn't afford. The constant weight loss I was experiencing from the stimulants even made me nervous. What would happen to my weight if I did start to exercise? Of course, I now know that not pursuing physical exertion in any form not only caused major problems in my knees, but also sapped much of the natural stamina that I have always had. Some of that energy also leached away showing movies every day, instead of working with my students, but my muscular deterioration was the primary culprit.
Beyond getting into a routine for regaining endurance, I also need to remember that my stimulants do much more than simply keep me awake. My heart works hard enough that my primary doctor had to give me a beta-blocker to prevent hypertension. Even more obvious is the condition of my knees. When the physical therapist did his initial exam, he told me that loss of strength was a secondary cause of the problems. The number one issue is how tight my muscles are. I have always had rigid muscles (which could also be a part of the narcolepsy), but these higher doses of stimulants are wreaking havoc on my muscles. I often feel muscles, particularly in my legs, contracting rapidly for no good reason. Long ago, I stopped drinking caffeine because I realized that it was causing lots of problems, especially in my back. Basically, the caffeine was causing a ton of muscle spasms. I now know that the amount of caffeine I was drinking, which seemed to have no effect (gotta love undiagnosed narcolepsy), was sending my muscles into overdrive. When my physical therapist told me that my tight muscles were the major factor in my knee pain, I eventually made the connection to my caffeine abstinence. If caffeine did that long ago, of course stimulants would do this now - and much worse!
Unfortunately, I don't think abstaining from stimulants will do me any good. Unless I am willing to give up working, exercising, any interactions with my child, possibly my marriage, etc. I simply need to find a way to live with them, as I am doing with all aspects of this condition. I do know that as my knees continue to improve, I will re-start yoga. Certainly the greatest benefit will be mental and emotional balance, but it will also do wonders for my tight muscles. I felt the "best" in the past seven years during the six months that yoga was a regular part of my routine. What I was unprepared for then, was the fact that even with the yoga I am going to feel extremely run down. In 2005, I wanted to be "better," meaning like I was before everything got weird. Of course now, I am beginning to realize that my idea of before is delusional (and was then too). I am in a good place to accept both what yoga will give me and what it won't. More peace of mind and good stretching and breathing are an awesome trade-off for 20-30 minutes most days.
I guess that is the biggest piece of the fitness puzzle for me - time. As with so many things in my life, I become too focused on what TIME (that mythical, omniscient entity) will allow me to accomplish. Exercise in some form and yoga can't be beholden to TIME, or even time in lowercase. It simply must be. Living with narcolepsy is just like living with anything - I am forced to make choices. I can't control how my narcolepsy will make me feel on any given day, but I can control how I respond to those moods and that constant sleepiness. It is not about conquering the disease. I can't. But, I can find places of peace within the crazy chaos. And, I can learn to take great joy in those moments. I need to exercise and to stretch. Such simple steps are going to be the key to finding balance in this awful, bizarre state.
As I tried to come to terms with all of my medication woes, I certainly could not find the additional energy to run on a treadmill or ride my bike on a trainer. Most days, I was happy to simply make it through the day, spend some time with my wife and daughter, and maybe get something done for my students. Exercising felt like a luxury I couldn't afford. The constant weight loss I was experiencing from the stimulants even made me nervous. What would happen to my weight if I did start to exercise? Of course, I now know that not pursuing physical exertion in any form not only caused major problems in my knees, but also sapped much of the natural stamina that I have always had. Some of that energy also leached away showing movies every day, instead of working with my students, but my muscular deterioration was the primary culprit.
Beyond getting into a routine for regaining endurance, I also need to remember that my stimulants do much more than simply keep me awake. My heart works hard enough that my primary doctor had to give me a beta-blocker to prevent hypertension. Even more obvious is the condition of my knees. When the physical therapist did his initial exam, he told me that loss of strength was a secondary cause of the problems. The number one issue is how tight my muscles are. I have always had rigid muscles (which could also be a part of the narcolepsy), but these higher doses of stimulants are wreaking havoc on my muscles. I often feel muscles, particularly in my legs, contracting rapidly for no good reason. Long ago, I stopped drinking caffeine because I realized that it was causing lots of problems, especially in my back. Basically, the caffeine was causing a ton of muscle spasms. I now know that the amount of caffeine I was drinking, which seemed to have no effect (gotta love undiagnosed narcolepsy), was sending my muscles into overdrive. When my physical therapist told me that my tight muscles were the major factor in my knee pain, I eventually made the connection to my caffeine abstinence. If caffeine did that long ago, of course stimulants would do this now - and much worse!
Unfortunately, I don't think abstaining from stimulants will do me any good. Unless I am willing to give up working, exercising, any interactions with my child, possibly my marriage, etc. I simply need to find a way to live with them, as I am doing with all aspects of this condition. I do know that as my knees continue to improve, I will re-start yoga. Certainly the greatest benefit will be mental and emotional balance, but it will also do wonders for my tight muscles. I felt the "best" in the past seven years during the six months that yoga was a regular part of my routine. What I was unprepared for then, was the fact that even with the yoga I am going to feel extremely run down. In 2005, I wanted to be "better," meaning like I was before everything got weird. Of course now, I am beginning to realize that my idea of before is delusional (and was then too). I am in a good place to accept both what yoga will give me and what it won't. More peace of mind and good stretching and breathing are an awesome trade-off for 20-30 minutes most days.
I guess that is the biggest piece of the fitness puzzle for me - time. As with so many things in my life, I become too focused on what TIME (that mythical, omniscient entity) will allow me to accomplish. Exercise in some form and yoga can't be beholden to TIME, or even time in lowercase. It simply must be. Living with narcolepsy is just like living with anything - I am forced to make choices. I can't control how my narcolepsy will make me feel on any given day, but I can control how I respond to those moods and that constant sleepiness. It is not about conquering the disease. I can't. But, I can find places of peace within the crazy chaos. And, I can learn to take great joy in those moments. I need to exercise and to stretch. Such simple steps are going to be the key to finding balance in this awful, bizarre state.
Wednesday, April 23, 2008
Gratitude
I feel blessed. While the comment sounds bizarre (even to me - the guy who wrote it) given that I have narcolepsy, it is true. I know that much more is happening in my life than just dealing with this sleep disorder. Plus, as I have noted before, the narcolepsy has caused a great deal of good, even as I have lost certain aspects of my life. The uncanny thing, though, is that in the last two weeks I have had tremendous moments that have reminded me how lucky I am.
By writing this blog and connecting to other narcoleptics on Facebook and MySpace, I have grown more comfortable. I have also helped others. Two former students and I realized that we share narcolepsy as a condition. Just that simple acknowledgment has meant the world to me. I hope I have had a similar impact on them. The idea that I "know" other narcoleptics - not "know of," but will meet them and talk to them and share experiences with them - blows my mind. I would argue that people in any condition relate best to others in the same condition. I also know that only another narcoleptic can fully appreciate the wacko nature of this disease.
My good fortune runs well beyond finding those two. On Facebook and MySpace, I have found comfort in the stories of others. Reading a forum post about medication issues makes my heart leap. I see the tales that others tell, and possibly tell my own, but for each of us we can feel "normal" in our frustration that nothing ever works quite as well or as long as we had initially hoped. The gift is in the acceptance. No one doubts your story or questions your approach. We each know that even the craziest stories must be true because ours feel just as strange. I also marvel at the earnest and heartfelt compassion that exists in every response. Each narcoleptic knows the isolation and fear that our condition brings, particularly when a narcoleptic does not have others to connect with on a daily basis.
But even those joyous moments pale in the full light of my greatest reward. I am surrounded by people who lift my spirits. My wife and daughter make each day better than the day before. Regardless of how severe my EDS (excessive daytime sleepiness) might be, they shower me with love and acceptance. Just yesterday, my daughter made sure that I got to watch her perform her solo in front of a judge at a solo and ensemble festival. She played her trombone marvelously. I would have missed it because I didn't have the energy to figure out if I could watch or not. She made sure that I was there. As for my wife, I think she should have tossed out my sleepy butt years ago. Instead, she loves me more, narcolepsy and all. But, I get love in every aspect of my life. I am well supported at school. My colleagues do their best to understand and support me. I am fortunate enough to share a room with one of my best friends, who has faced (and continues to face) significant medical issues of his own. Even my students recognize how important it is to offer me the support they can. Just today, while watching Annie Hall, each of my classes look at me and laughed with me when Annie tells Alvy about her relative with narcolepsy who died after getting his union turkey. It was sweet.
The final place that I feel like incredible these days, even when I have a horrid headache and awful fatigue (today), is here. This blog remains a place for me to reflect for me, but I am stunned that people in four different countries have read pieces of it. I am honored that nearly 30 people would have taken the time to read what I have written. I know that some of you are family, and some of you are friends, and some of you might never meet me face-to-face. I am grateful for all of you and touched that you would spend even a few minutes with me. I hope the time is well spent and that you get something from the effort. I first realized how much knowing you are all out there meant when I read an anonymous comment a few days ago. The person posted that this blog was helping the poster understand a best friend's narcolepsy. As much as the poster was thanking me, I felt that I got the true gift. We all touch others daily, often having no idea of our impact. That poster let me see that, if nothing else, my narcolepsy helped me give in a way I never could have without it. And that, more than anything, is why I am blessed with this crazy condition.
By writing this blog and connecting to other narcoleptics on Facebook and MySpace, I have grown more comfortable. I have also helped others. Two former students and I realized that we share narcolepsy as a condition. Just that simple acknowledgment has meant the world to me. I hope I have had a similar impact on them. The idea that I "know" other narcoleptics - not "know of," but will meet them and talk to them and share experiences with them - blows my mind. I would argue that people in any condition relate best to others in the same condition. I also know that only another narcoleptic can fully appreciate the wacko nature of this disease.
My good fortune runs well beyond finding those two. On Facebook and MySpace, I have found comfort in the stories of others. Reading a forum post about medication issues makes my heart leap. I see the tales that others tell, and possibly tell my own, but for each of us we can feel "normal" in our frustration that nothing ever works quite as well or as long as we had initially hoped. The gift is in the acceptance. No one doubts your story or questions your approach. We each know that even the craziest stories must be true because ours feel just as strange. I also marvel at the earnest and heartfelt compassion that exists in every response. Each narcoleptic knows the isolation and fear that our condition brings, particularly when a narcoleptic does not have others to connect with on a daily basis.
But even those joyous moments pale in the full light of my greatest reward. I am surrounded by people who lift my spirits. My wife and daughter make each day better than the day before. Regardless of how severe my EDS (excessive daytime sleepiness) might be, they shower me with love and acceptance. Just yesterday, my daughter made sure that I got to watch her perform her solo in front of a judge at a solo and ensemble festival. She played her trombone marvelously. I would have missed it because I didn't have the energy to figure out if I could watch or not. She made sure that I was there. As for my wife, I think she should have tossed out my sleepy butt years ago. Instead, she loves me more, narcolepsy and all. But, I get love in every aspect of my life. I am well supported at school. My colleagues do their best to understand and support me. I am fortunate enough to share a room with one of my best friends, who has faced (and continues to face) significant medical issues of his own. Even my students recognize how important it is to offer me the support they can. Just today, while watching Annie Hall, each of my classes look at me and laughed with me when Annie tells Alvy about her relative with narcolepsy who died after getting his union turkey. It was sweet.
The final place that I feel like incredible these days, even when I have a horrid headache and awful fatigue (today), is here. This blog remains a place for me to reflect for me, but I am stunned that people in four different countries have read pieces of it. I am honored that nearly 30 people would have taken the time to read what I have written. I know that some of you are family, and some of you are friends, and some of you might never meet me face-to-face. I am grateful for all of you and touched that you would spend even a few minutes with me. I hope the time is well spent and that you get something from the effort. I first realized how much knowing you are all out there meant when I read an anonymous comment a few days ago. The person posted that this blog was helping the poster understand a best friend's narcolepsy. As much as the poster was thanking me, I felt that I got the true gift. We all touch others daily, often having no idea of our impact. That poster let me see that, if nothing else, my narcolepsy helped me give in a way I never could have without it. And that, more than anything, is why I am blessed with this crazy condition.
Tuesday, April 22, 2008
Parenting
I adore my daughter. She fills the world with laughter, music, joy, angst, passion, art and love. Daily, I find myself fascinated by the verve she exhibits. At the same time I constantly worry about the impact of my narcolepsy on her. Obviously, our home life is not "normal," but whose is there days? Still, her dad is regularly exhausted. Today, she performed at a solo and ensemble festival for band. I picked her up at school and then drove her home to change. After a few minutes, we were back in the car racing to get to the festival. We arrived in plenty of time, and she warmed up. Her piece was beautiful, genuinely impressing the judge. My daughter was (and still is) walking on air after that. The entire experience created an outstanding evening, except that I was spent by the time we got home. It drives me nuts that I can't be more present for her in general, but after her incredible evening, I wanted to be bouncing off the walls for her. I couldn't. We did have a good night. I just hope she knows that I love her.
My other worry, though, is that daughter will also develop narcolepsy. She already has some of the same healthy issues that I had as a child. There is no way to recognize narcolepsy in those things - sinus issues, sore throats, long lasting colds. At the same time, I know that many of those things still plague me today. I also know that she does dose off at times. She plays hard, like me, then crashes hard, like me. I don't want to force testing on her. I also don't want to "suggest" to her that she has narcolepsy, which is a real possibility with any child. But, I don't want her to spend years living with an undiagnosed condition as I did.
Parenting is never easy. I want to make wise decisions and do what is best for my daughter. I also know that I suffer from depression and anxiety, and my anxiety is often about things far more trivial than my daughter. Thus, I need to be careful when it comes to my daughter. My instinct is to be ridiculously overprotective, but I must trust that with patience and careful observation, my wife and I will notice if there are real issues to address medically. I love my daughter, but I also can't let my issues become hers simply because I project them on her. I love that my quirks can make even something as difficult as parenting even more taxing!
My other worry, though, is that daughter will also develop narcolepsy. She already has some of the same healthy issues that I had as a child. There is no way to recognize narcolepsy in those things - sinus issues, sore throats, long lasting colds. At the same time, I know that many of those things still plague me today. I also know that she does dose off at times. She plays hard, like me, then crashes hard, like me. I don't want to force testing on her. I also don't want to "suggest" to her that she has narcolepsy, which is a real possibility with any child. But, I don't want her to spend years living with an undiagnosed condition as I did.
Parenting is never easy. I want to make wise decisions and do what is best for my daughter. I also know that I suffer from depression and anxiety, and my anxiety is often about things far more trivial than my daughter. Thus, I need to be careful when it comes to my daughter. My instinct is to be ridiculously overprotective, but I must trust that with patience and careful observation, my wife and I will notice if there are real issues to address medically. I love my daughter, but I also can't let my issues become hers simply because I project them on her. I love that my quirks can make even something as difficult as parenting even more taxing!
Monday, April 21, 2008
Rhythm
I love poetry. When words dance and twist in powerful verse, I find rapture. What's more, the verse can be as simple as a haiku (which aren't so simple) or as complex as Shakespeare's plays (which are poetic even when they are not). I find poetry magical regardless of rhyme or rhythm or meter or structure. That being said, I do enjoy well done rhythm. Forced, or overdone, rhythms and meters can kill a poem, but broken patterns are the worst. In a poem, when the author establishes a particular cadence and maintains it for a time, the reader expects it to continue. If it ends or suddenly shifts, the reader is thrown, or at least I am. Drives me nuts! Now, poems do exist that make major changes, but the overall rhythm does still exist. A great example is Poe's The Raven. The meter shifts and slides throughout the piece, but one eventually realizes that the pattern is far larger than a few lines. The rhythm is repeated as an entire stanza at a time. Dazzling!
I raise the issue and Poe's poem, because I am searching for the pattern in my life's poem. I am sure I would feel something similar without the narcolepsy, but I often feel like my poet is radically shifting the cadence of my song. Many times, the rhythm shifts from week to week - sometimes, within a week. Given my reaction to written poems, you can imagine how well I cope with such massive alterations within my daily life. We all have bio-rhythms. I firmly believe that, but I also know that mine swing wildly. For an entire week, I felt fuzzy and out of focus. Now, I have no energy - none. Some of that is beginning the knee and back exercises. Some is not knowing my limits. But, how can I feel so unfocused one week and then be so tired the next. Not that much is different.
I cling to the hope that this current "Mike poem" is being composed by someone like Poe. Maybe, the rhythm is bigger than I can see right now. I might need to see weeks or even months before I grasp the full range that things will run. Granted, The Raven, while a masterpiece, is not a super cheerful poem. Still, I think there is wisdom in the comparison. The speaker in that poem is also facing loss. He, of course, longs for Lenore and eventually finds (or causes) his own captivity by the raven in the poem. I have also "lost," but I think I understand that what I have lost is not something I can (or even want to) regain. I simply want to find a rhythm, a pattern of normalcy. I guess my "raven" will be demanding that it resemble some clear cut schedule - "Mike will feel fuzzy for 7 days. That week will be followed by extreme fatigue week. Fortunately, good energy fortnight is in the hole." That is completely unrealistic, but it IS what I want.
I know my body moved through cycles before. It will continue to do that. I hope I have enough insight to recognize those highs and lows. If I don't, this journey will be LONG and not in any good way. When my energy drops, I need to accept it. When I suddenly have a burst, I should appreciate my good fortune, instead of demanding more and longer stretches of strength. All of that is easy to write and hard to live. Yet, I know that typing it all has given me a little more peace. Narcolepsy is rotten, and it makes dealing with even trivial concerns toxic at times. When do most of us tend to overreact? When we are run down and tired. Narcoleptics are always run down and tired, and sometimes, it gets worse. Remembering and recognizing that might be one of the best "rhythms" that I can find in this epic poem that is my life.
I raise the issue and Poe's poem, because I am searching for the pattern in my life's poem. I am sure I would feel something similar without the narcolepsy, but I often feel like my poet is radically shifting the cadence of my song. Many times, the rhythm shifts from week to week - sometimes, within a week. Given my reaction to written poems, you can imagine how well I cope with such massive alterations within my daily life. We all have bio-rhythms. I firmly believe that, but I also know that mine swing wildly. For an entire week, I felt fuzzy and out of focus. Now, I have no energy - none. Some of that is beginning the knee and back exercises. Some is not knowing my limits. But, how can I feel so unfocused one week and then be so tired the next. Not that much is different.
I cling to the hope that this current "Mike poem" is being composed by someone like Poe. Maybe, the rhythm is bigger than I can see right now. I might need to see weeks or even months before I grasp the full range that things will run. Granted, The Raven, while a masterpiece, is not a super cheerful poem. Still, I think there is wisdom in the comparison. The speaker in that poem is also facing loss. He, of course, longs for Lenore and eventually finds (or causes) his own captivity by the raven in the poem. I have also "lost," but I think I understand that what I have lost is not something I can (or even want to) regain. I simply want to find a rhythm, a pattern of normalcy. I guess my "raven" will be demanding that it resemble some clear cut schedule - "Mike will feel fuzzy for 7 days. That week will be followed by extreme fatigue week. Fortunately, good energy fortnight is in the hole." That is completely unrealistic, but it IS what I want.
I know my body moved through cycles before. It will continue to do that. I hope I have enough insight to recognize those highs and lows. If I don't, this journey will be LONG and not in any good way. When my energy drops, I need to accept it. When I suddenly have a burst, I should appreciate my good fortune, instead of demanding more and longer stretches of strength. All of that is easy to write and hard to live. Yet, I know that typing it all has given me a little more peace. Narcolepsy is rotten, and it makes dealing with even trivial concerns toxic at times. When do most of us tend to overreact? When we are run down and tired. Narcoleptics are always run down and tired, and sometimes, it gets worse. Remembering and recognizing that might be one of the best "rhythms" that I can find in this epic poem that is my life.
Sunday, April 20, 2008
Curve Balls
Maybe it was a result of watching the Twins win today, but curve balls are on my mind. I have been working hard to "discover my limits." Unfortunately, I once again seem to have tried too much, too soon. Certainly, I have been feeling off for a week, but today I felt even worse. I am doing my knee exercises and attempting to get work done in the house and for school. That seems like so little to ask. I wasn't even deluding myself into thinking I would get EVERYTHING done (well, maybe I thought it for a moment or two). What seems completely unfair is that after expending what seems like a reasonable amount of energy, I have a fever!
The fever is not high - 99.5, but I tend to temp (or at least I did before stimulants) around 97. I had a lovely dance with the flu in February and ran a similar fever for about four days. Now, I sweat through at least two shirts most nights these days, but I am close to changing my shirt BEFORE I even go to bed. The thing that has upset me the most tonight, however, is that this wrinkle kept me from my men's group. While this blog is helping me a great deal, and I am beginning to make connections with other narcoleptics, my men's group has been one of the major stabilizing forces in my life for the last fifteen years. I missed two weeks ago, so now it will have been five weeks by the next time I get to the group. The connection I have made with these guys is vital to staying in check.
I realize, that whatever is going on in my body tonight, I have no control over it. Still, I find it maddening that even when I work to do "the right things," I am forced to deal with unforeseen annoyances out of left field. Sorry about the excessive baseball allusions, but it was a great game. Seriously - Morneau drove home the winning run with two on and two out in the bottom of the tenth.
I know that taking care of me means listening to my body and accepting when fevers flair. It also does me no good to rail against the injustice of it all. A pity party will not get me to men's group and certainly will do me no good mentally or emotionally. That being said, moments like these are the ones that make narcolepsy, and my entire health journey, mind blowingly aggravating. I am sure some sleep will help, except I don't sleep well. Darn!
The fever is not high - 99.5, but I tend to temp (or at least I did before stimulants) around 97. I had a lovely dance with the flu in February and ran a similar fever for about four days. Now, I sweat through at least two shirts most nights these days, but I am close to changing my shirt BEFORE I even go to bed. The thing that has upset me the most tonight, however, is that this wrinkle kept me from my men's group. While this blog is helping me a great deal, and I am beginning to make connections with other narcoleptics, my men's group has been one of the major stabilizing forces in my life for the last fifteen years. I missed two weeks ago, so now it will have been five weeks by the next time I get to the group. The connection I have made with these guys is vital to staying in check.
I realize, that whatever is going on in my body tonight, I have no control over it. Still, I find it maddening that even when I work to do "the right things," I am forced to deal with unforeseen annoyances out of left field. Sorry about the excessive baseball allusions, but it was a great game. Seriously - Morneau drove home the winning run with two on and two out in the bottom of the tenth.
I know that taking care of me means listening to my body and accepting when fevers flair. It also does me no good to rail against the injustice of it all. A pity party will not get me to men's group and certainly will do me no good mentally or emotionally. That being said, moments like these are the ones that make narcolepsy, and my entire health journey, mind blowingly aggravating. I am sure some sleep will help, except I don't sleep well. Darn!
Saturday, April 19, 2008
Paradox
I have felt for years that paradox is the perfect word for capturing the essence of life. That insight only grows stronger as I continue to accept my condition. I am awestruck that the best way for me to gain "focus" is by relaxing and letting go. It stuns me that one of my greatest strengths, the ability to lead with authority and levity, is also a huge flaw. I often alienate people who find me overconfident. Or worse, I silence great ideas because I speak with such conviction that others don't want to challenge my approach. The longer I live, the more paradox confronts me on a daily (or even hourly) basis. With that, you would think I might realize the paradoxical nature of narcolepsy as soon as I was diagnosed.
I did not. My recent foray into reflection has helped me to see that this disease might be the biggest paradox yet. Simply at the surface, this condition is perfect in its nonsensical duality. Narcoleptics don't sleep well, resulting in extreme fatigue during the day. How freaky is that! Why is narcolepsy hard? Imagine this conversation.
Friend: Why are you tired?
Narcoleptic: I don't sleep well.
Friend: Why not?
Narcoleptic: I have narcolepsy.
Friend: Where you can fall asleep during the day?
Narcoleptic: Yes.
Friend: Then, you should get more sleep at night.
Narcoleptic: I can't. I don't sleep well.
Friend: Why not?
The insanity is that a narcoleptic NEVER sleeps well - night, day, naps, ever. I don't know how well I sleep these days, and I take a drug to knock me out at night. I don't expect others to "get" it because I barely do. Doctors certainly have no idea about the "why." Still, how funny is it that a person who is constantly sleepy does not sleep well? That is paradox.
For me, though, the paradox of this disease runs much deeper. I have spent my life in a constant state of fear. In my first therapy session with my current psychologist, she asked me to list my "worries." Literally, fifteen things came out of my mouth in a ten second burst. Her eyes grew huge before she composed herself. My immediate thought was, "that's not normal?" Apparently, it's not. People regularly remark that I seem so much calmer than I did when I was younger. Some of that is the result of years of therapy, formally and informally. But, it is also the narcolepsy. One of the biggest ironies (and in my mind, paradoxes) is that I think my narcolepsy has been at the core of many of my fears, but I would never have realized that without the condition slowing me down.
My whole life, I have earnestly believed the axiom that "ideal hands are the devil's plaything." In college I actually budgeted my time in 15 minute intervals, and I tried to stick to that schedule. Even now, I worry daily that I am not doing enough. The reality, of course, is that I am doing what I can, when I can. That is all any of us ever do. How worrying would ever assist me in getting more done is a complete mystery, and yet I fret all the time. Again, the weird situation is that without this narcolepsy, I would still be trying to push myself beyond any limit that I might see. And, I do think that the natural slowing of my body as the narcolepsy progressed is exactly what made me push harder. Some sub-conscious element of my brain recognized that my health was beginning to wane. Thus, I threw myself time and again into overdrive. I refused to allow myself the chance to let down. Now, I doubt that I could summon such a reserve for even a day, but even as I typed that part of me knows that I could - for a day or so. Then, I would pay for a week, or more.
Narcolepsy has given me a chance to remake my life. It has also completely undermined it. Paradox. This condition is one of the worst things I have ever encountered. And, it is one of the best. Paradox. The end reality, though, is that another word also applies when good and bad meet, allowing truth to settle somewhere in the middle - balance. Perhaps, that is the greatest paradox of all.
I did not. My recent foray into reflection has helped me to see that this disease might be the biggest paradox yet. Simply at the surface, this condition is perfect in its nonsensical duality. Narcoleptics don't sleep well, resulting in extreme fatigue during the day. How freaky is that! Why is narcolepsy hard? Imagine this conversation.
Friend: Why are you tired?
Narcoleptic: I don't sleep well.
Friend: Why not?
Narcoleptic: I have narcolepsy.
Friend: Where you can fall asleep during the day?
Narcoleptic: Yes.
Friend: Then, you should get more sleep at night.
Narcoleptic: I can't. I don't sleep well.
Friend: Why not?
The insanity is that a narcoleptic NEVER sleeps well - night, day, naps, ever. I don't know how well I sleep these days, and I take a drug to knock me out at night. I don't expect others to "get" it because I barely do. Doctors certainly have no idea about the "why." Still, how funny is it that a person who is constantly sleepy does not sleep well? That is paradox.
For me, though, the paradox of this disease runs much deeper. I have spent my life in a constant state of fear. In my first therapy session with my current psychologist, she asked me to list my "worries." Literally, fifteen things came out of my mouth in a ten second burst. Her eyes grew huge before she composed herself. My immediate thought was, "that's not normal?" Apparently, it's not. People regularly remark that I seem so much calmer than I did when I was younger. Some of that is the result of years of therapy, formally and informally. But, it is also the narcolepsy. One of the biggest ironies (and in my mind, paradoxes) is that I think my narcolepsy has been at the core of many of my fears, but I would never have realized that without the condition slowing me down.
My whole life, I have earnestly believed the axiom that "ideal hands are the devil's plaything." In college I actually budgeted my time in 15 minute intervals, and I tried to stick to that schedule. Even now, I worry daily that I am not doing enough. The reality, of course, is that I am doing what I can, when I can. That is all any of us ever do. How worrying would ever assist me in getting more done is a complete mystery, and yet I fret all the time. Again, the weird situation is that without this narcolepsy, I would still be trying to push myself beyond any limit that I might see. And, I do think that the natural slowing of my body as the narcolepsy progressed is exactly what made me push harder. Some sub-conscious element of my brain recognized that my health was beginning to wane. Thus, I threw myself time and again into overdrive. I refused to allow myself the chance to let down. Now, I doubt that I could summon such a reserve for even a day, but even as I typed that part of me knows that I could - for a day or so. Then, I would pay for a week, or more.
Narcolepsy has given me a chance to remake my life. It has also completely undermined it. Paradox. This condition is one of the worst things I have ever encountered. And, it is one of the best. Paradox. The end reality, though, is that another word also applies when good and bad meet, allowing truth to settle somewhere in the middle - balance. Perhaps, that is the greatest paradox of all.
Thursday, April 17, 2008
Revelations
The past few weeks have been fascinating for me. As much as my narcolepsy continues to vex me, I also find it amazing. So many aspects of my life radiate from my narcolepsy. I know that much of my "boundless" energy of the past was an attempt to keep my fatigue at bay. I never allowed myself to stop moving because I knew (at some level) that doing so would cause my endorphin levels to drop. Going a thousand miles an hour allowed me to stave off the inevitable collapse. Sadly, I never saw it. I simply thought, "I play hard, and I crash hard." In hindsight, I know that it was denial, a denial that I am still working through.
Even more humorous to me is the ease with which I could pull an all-nighter whenever I needed one. I could even do it for two days in a row (and three once). Likely, I still could, but it would be rather foolish given my clear recognition of the narcolepsy. The reality is that I could stay up all night because it was what my brain and body wanted to do anyway. Narcoleptics are sleepy during the day as a result of their inability to sleep well at night. Somewhere in my brain, crossed wires send the wrong messages at the wrong time. Likely, they have been doing that since college, maybe even since high school. When I got the "pseudo-narcolepsy" diagnosis in June of 2004, my ability to pull all-nighters was one of the first things that made me think, "Narcolepsy? No way!" Like the unnatural energy, it makes such sense now.
The most important revelation of the last few weeks, though, is how much I need to take care of myself. Working part-time has been a huge blessing, but the courses I am teaching are a complete mismatch. Teaching is a good career for me, even with the narcolepsy because I am an extreme extrovert. Working with my students gives me energy. Even when my medication was much lower, or when I wasn't even on stimulants, my students would have no idea about my excessive daytime sleepiness. This year, though, I spend most of my classroom time sitting in silence as my students watch the films for our Film Study course. I knew it was a bad fit within the first two weeks, but it was only in the last two that I recognized how much it has impacted me socially, emotionally, physically and mentally. Fortunately, I will be in a far more dynamic situation next year. I will be teaching with two amazing teachers in a course that is constantly interactive.
I need to find ways at home too that will help me find strength. Part of that is getting into a routine to restore the physical health that my weight loss has cost me. An even higher priority is restarting yoga. I know that I felt most balanced in the last seven years when I was doing yoga every day. Given the reduced energy levels that I know have, I realize that I can't be rigid about daily yoga, but I also know that even short periods of daily yoga will do wonders for me. In that same vein I function best when I have a more structured day - not the same each day, but patterns that give me boundaries and direction.
Narcolepsy is awful, but it also continues to be a blessing. It is forcing me to learn a great deal about myself and will continue to do that for many years to come. Without it, I am sure that I would be pushing myself into an early grave, or at least out of an incredible marriage. The paradox that is life continues to stun me. My greatest aggravation certainly stands as my greatest gift.
Even more humorous to me is the ease with which I could pull an all-nighter whenever I needed one. I could even do it for two days in a row (and three once). Likely, I still could, but it would be rather foolish given my clear recognition of the narcolepsy. The reality is that I could stay up all night because it was what my brain and body wanted to do anyway. Narcoleptics are sleepy during the day as a result of their inability to sleep well at night. Somewhere in my brain, crossed wires send the wrong messages at the wrong time. Likely, they have been doing that since college, maybe even since high school. When I got the "pseudo-narcolepsy" diagnosis in June of 2004, my ability to pull all-nighters was one of the first things that made me think, "Narcolepsy? No way!" Like the unnatural energy, it makes such sense now.
The most important revelation of the last few weeks, though, is how much I need to take care of myself. Working part-time has been a huge blessing, but the courses I am teaching are a complete mismatch. Teaching is a good career for me, even with the narcolepsy because I am an extreme extrovert. Working with my students gives me energy. Even when my medication was much lower, or when I wasn't even on stimulants, my students would have no idea about my excessive daytime sleepiness. This year, though, I spend most of my classroom time sitting in silence as my students watch the films for our Film Study course. I knew it was a bad fit within the first two weeks, but it was only in the last two that I recognized how much it has impacted me socially, emotionally, physically and mentally. Fortunately, I will be in a far more dynamic situation next year. I will be teaching with two amazing teachers in a course that is constantly interactive.
I need to find ways at home too that will help me find strength. Part of that is getting into a routine to restore the physical health that my weight loss has cost me. An even higher priority is restarting yoga. I know that I felt most balanced in the last seven years when I was doing yoga every day. Given the reduced energy levels that I know have, I realize that I can't be rigid about daily yoga, but I also know that even short periods of daily yoga will do wonders for me. In that same vein I function best when I have a more structured day - not the same each day, but patterns that give me boundaries and direction.
Narcolepsy is awful, but it also continues to be a blessing. It is forcing me to learn a great deal about myself and will continue to do that for many years to come. Without it, I am sure that I would be pushing myself into an early grave, or at least out of an incredible marriage. The paradox that is life continues to stun me. My greatest aggravation certainly stands as my greatest gift.
Tuesday, April 15, 2008
Western Medicine
Few things in this journey have upset me more than the realization that medical knowledge is incredible limited. I certainly don't blame my doctors. The human body is an incredible complex organic machine. My ire is more directed at the human hubris of believing that we "understand" so much about health. We don't! As advanced as medicine has become, we honestly understand only a fraction of how our bodies and genes and hormones and systems and environments all interact to produce our daily condition.
For me this dearth of insight is compounded by regularly being told I have "conditions" that are diagnoses of elimination. My bowels were, and still are, problematic. After extensive testing by a number of specialists, I firmly know that I have Irritable Bowel Syndrome. Of course that means nothing since no one actually knows what the "disease" is. IBS is a fancy way of saying, "your bowels are problematic, but we don't know why." Equally annoying are my sinuses. I definitely had, and still have, chronic sinusitis. My initial CT definitely showed that surgery would be the best course of action. Since that surgery in August of 2003, I have continued to be plagued by regular sinus infections and constant sinus swelling and inflammation. My ENT "vacuums" out my sinuses every six weeks, and I rinse my sinuses two different way twice each day. The crazy part is that the surgery worked! There is no reason why my sinuses should still be doing this, but two different ENTs, two different allergists and plenty of other doctors have been unable to find a reason. I am in that tiny fraction of sinus suffers that belie conventional knowledge.
And then there is narcolepsy. The first time that I fully realized narcolepsy is similar to my other conditions, I wanted to vomit - literally. Narcolepsy IS diagnosed by diagnostic testing. Pulmonary doctors have clearly defined methods to identify the disease. But, no one knows how the disease works. The best guess is that something is "wrong" in the sufferer's brain chemistry, likely a problem in the hypothalamus. Still, like IBS and my sinuses, all I can do is treat my symptoms. There is nothing I can do to improve my condition; I can only try to manage it. I feel like I am reach a level of acceptance with all of it, but it is so hard.
The final piece of my angst stems from the system itself. Managed care is great, until you get seriously ill. Specialists are amazing, until you don't fit neatly into a box. I have seen 18 specialists, 2 family practice doctors and an internal medicine doctor in the six and a half year journey since things became awful. All of the doctors have done their best, but they barely have time to see me in their offices, let alone talk to each other about my case. The one place that could happen is at the Mayo Clinic, but they aren't taking "new" patients and haven't been for two years. I can't believe that Western Medicine can be so advanced, and yet so backwards. Clearly, more than one system is involved - even if it is just my narcolepsy, yet a specialist won't even consider exploring those ideas. Part of it is the fear of malpractice, but it is also that a specialists knowledge base is so narrowly focused.
Thankfully, I have an acupuncturist, a chiropractor, a massage therapist, a therapist, a psychiatrist, and a men's group. All of them aid me in coping with the bigger picture of my life. That holistic approach will be what allows me to push through even the darkest days. But, what about the hundreds, maybe thousands, of people who also suffer the way I do, yet do not have all of these other resources. We need to find a better system. We need to incorporate more Eastern ideas into our medical approaches. More than anything, we need to begin treating the entire person and not just the fraction that seems to be "broken."
For me this dearth of insight is compounded by regularly being told I have "conditions" that are diagnoses of elimination. My bowels were, and still are, problematic. After extensive testing by a number of specialists, I firmly know that I have Irritable Bowel Syndrome. Of course that means nothing since no one actually knows what the "disease" is. IBS is a fancy way of saying, "your bowels are problematic, but we don't know why." Equally annoying are my sinuses. I definitely had, and still have, chronic sinusitis. My initial CT definitely showed that surgery would be the best course of action. Since that surgery in August of 2003, I have continued to be plagued by regular sinus infections and constant sinus swelling and inflammation. My ENT "vacuums" out my sinuses every six weeks, and I rinse my sinuses two different way twice each day. The crazy part is that the surgery worked! There is no reason why my sinuses should still be doing this, but two different ENTs, two different allergists and plenty of other doctors have been unable to find a reason. I am in that tiny fraction of sinus suffers that belie conventional knowledge.
And then there is narcolepsy. The first time that I fully realized narcolepsy is similar to my other conditions, I wanted to vomit - literally. Narcolepsy IS diagnosed by diagnostic testing. Pulmonary doctors have clearly defined methods to identify the disease. But, no one knows how the disease works. The best guess is that something is "wrong" in the sufferer's brain chemistry, likely a problem in the hypothalamus. Still, like IBS and my sinuses, all I can do is treat my symptoms. There is nothing I can do to improve my condition; I can only try to manage it. I feel like I am reach a level of acceptance with all of it, but it is so hard.
The final piece of my angst stems from the system itself. Managed care is great, until you get seriously ill. Specialists are amazing, until you don't fit neatly into a box. I have seen 18 specialists, 2 family practice doctors and an internal medicine doctor in the six and a half year journey since things became awful. All of the doctors have done their best, but they barely have time to see me in their offices, let alone talk to each other about my case. The one place that could happen is at the Mayo Clinic, but they aren't taking "new" patients and haven't been for two years. I can't believe that Western Medicine can be so advanced, and yet so backwards. Clearly, more than one system is involved - even if it is just my narcolepsy, yet a specialist won't even consider exploring those ideas. Part of it is the fear of malpractice, but it is also that a specialists knowledge base is so narrowly focused.
Thankfully, I have an acupuncturist, a chiropractor, a massage therapist, a therapist, a psychiatrist, and a men's group. All of them aid me in coping with the bigger picture of my life. That holistic approach will be what allows me to push through even the darkest days. But, what about the hundreds, maybe thousands, of people who also suffer the way I do, yet do not have all of these other resources. We need to find a better system. We need to incorporate more Eastern ideas into our medical approaches. More than anything, we need to begin treating the entire person and not just the fraction that seems to be "broken."
Monday, April 14, 2008
Lack of Focus
Everyone I know finds it weird that narcolepsy and ADD share a medical treatment, but the longer I cope with my narcolepsy, the more sense it makes. I have been unable to focus for three days now. Folks with attention deficit disorder use stimulants to help their brains lock onto a single idea or event. Narcoleptics use them to stay awake, but when I am run down, I find that I can barely keep an idea in my head for more than a few minutes.
Even writing this entry is tough. I have a good insight and start to type and... You get the idea. I think the most unnerving part is that I will be all set to do something, and an hour later I haven't even started. Time seems to move in fits and spurts when my focus is like this. During one of my more interesting stretches like this, I took three days to get two loads of laundry finished. Impressive.
The irony is that recognizing how poor my focus is at these times has helped me come to grips with my narcolepsy. I tend to drift off in the midst of mentally berating myself. It is nice, but bizarre. The other reality, though, is that the humbling experiences of losing track (of basically everything) makes me remember that I am only human. Much of this condition is completely out of my control. And, that is okay.
Even writing this entry is tough. I have a good insight and start to type and... You get the idea. I think the most unnerving part is that I will be all set to do something, and an hour later I haven't even started. Time seems to move in fits and spurts when my focus is like this. During one of my more interesting stretches like this, I took three days to get two loads of laundry finished. Impressive.
The irony is that recognizing how poor my focus is at these times has helped me come to grips with my narcolepsy. I tend to drift off in the midst of mentally berating myself. It is nice, but bizarre. The other reality, though, is that the humbling experiences of losing track (of basically everything) makes me remember that I am only human. Much of this condition is completely out of my control. And, that is okay.
Sunday, April 13, 2008
Ultimate
While narcolepsy does play a major role in my life, I refuse to let it take over. One of the ways I plan to "fight back" is by renewing my commitment to playing ultimate Frisbee. The club team on which I play (tba - that is truly our name) had our kick off meeting tonight. It was great to see everyone. My extensive weight loss, and ensuing knee problem, was a topic of discussion, but most of the evening was spent discussing our upcoming year.
I feel re-invigorated just by seeing these guys again. It amazes me that I can feel so strongly about a group. I would do anything for my teammates, mostly because they are such good people. Plus, they all play my favorite sport extremely well. The night was also good for me because I had to discuss the narcolepsy.
I struggle with explaining my condition in terms that give clarity without causing excessive concern. Narcolepsy is a complete pain, but it is manageable. I feel like I did a decent job tonight, both in the way I answered questions about my health, and in the positive attitude that I had. I tend to be an optimist, but goofy disease certainly tests that trait. On the whole, a great night. I am excited for my physical therapy to begin. By getting my knees stronger, I will be able to exercise more. That in turn will give me more endurance, not only for ultimate, but also for my daily life.
I will never be able to match the insane energy levels of my past, but I will be able to teach well (part-time) and be a great dad and husband. That will make every day brighter.
I feel re-invigorated just by seeing these guys again. It amazes me that I can feel so strongly about a group. I would do anything for my teammates, mostly because they are such good people. Plus, they all play my favorite sport extremely well. The night was also good for me because I had to discuss the narcolepsy.
I struggle with explaining my condition in terms that give clarity without causing excessive concern. Narcolepsy is a complete pain, but it is manageable. I feel like I did a decent job tonight, both in the way I answered questions about my health, and in the positive attitude that I had. I tend to be an optimist, but goofy disease certainly tests that trait. On the whole, a great night. I am excited for my physical therapy to begin. By getting my knees stronger, I will be able to exercise more. That in turn will give me more endurance, not only for ultimate, but also for my daily life.
I will never be able to match the insane energy levels of my past, but I will be able to teach well (part-time) and be a great dad and husband. That will make every day brighter.
Saturday, April 12, 2008
Surviving
I know that I am more than this disease, but that is often hard to remember. My narcolepsy has certainly been an adventure. I hope I am now at the point that I can begin to embrace both the loss and the gain that I have experienced.
I was diagnosed late in August of 2007. Of course, I had a previous sleep study in June of 2004, which showed I was, "a sleepy guy." Those are the doctor's actual words. It wasn't "real" narcolepsy because I didn't have REM sleep during my naps, but the average time for my naps was 6.5 minutes with nap four happening in 3 minutes. So, in the summer of 2004, I started taking methylphenidate. First, I only used 10 mg pills, but we soon move to a 10 mg pill in the AM with a 27 mg Concerta for the rest of the day.
I also have other health quirks (chronic sinusitis and IBS) that seemed to confuse everything. Often, I would chase one possible solution, but lose sight of other things going on in my body. Eventually, a wise doctor had me stop all of my drugs. While that didn't help me physically, it did open the door for me to have the second sleep study. This time, the tests clearly showed narcolepsy. I think one of the problems the first time around was that I was taking an anti-depressant. Those tend to suppress REM - the very thing we were trying to find.
The road since August of 2007 has been nuts. It is great to know that much of what I have been experiencing is the narcolepsy; the past seven years have been a steady decline in energy for me. But knowing and coping are two wildly different things. Part of my struggle has been simply accepting the idea of being disabled. The truth is that I simply can't do what I used to do. My body jsut doesn't work that way. Another part has been the battle to find the right medications. I tried Provigil, but am in that tiny group that reacts horribly to it. Provigil affected me the way large doses of stimulants tend to affect others. After that, my doctor had me try methylphenidate again, but 80 mg during the day was not nearly enough. We settled on amphetamine, which seems to work okay, except for the high blood pressure that it is creating. I get to take atenolol now since I was 150/100 at my last doctor appointment.
Still, I feel lucky. One, my narcolepsy is manageable. Two, I do not experience cataplexy, at least I don't think that I do. Three, I have a supportive spouse and a job that allows me to work part-time. Four, and most important, I needed to slow down in my life. I know that the narcolepsy has helped me to see what is important to me. That doesn't change the fact that this disease continues to frustrate and anger me, but it does help me to remain calm even as I struggle to get a simple task done.
I also know that my narcolepsy has forced me to open up more. I need to connect with other narcoleptics. I think I have found a support group, but I also just need to express my insights and ideas. Hence, I started this blog. Many of the posts will be about narcolepsy and my journey, but it will also cover anything and everything that enters my wee little brain. If anyone ever reads it, great. If not, great.
I was diagnosed late in August of 2007. Of course, I had a previous sleep study in June of 2004, which showed I was, "a sleepy guy." Those are the doctor's actual words. It wasn't "real" narcolepsy because I didn't have REM sleep during my naps, but the average time for my naps was 6.5 minutes with nap four happening in 3 minutes. So, in the summer of 2004, I started taking methylphenidate. First, I only used 10 mg pills, but we soon move to a 10 mg pill in the AM with a 27 mg Concerta for the rest of the day.
I also have other health quirks (chronic sinusitis and IBS) that seemed to confuse everything. Often, I would chase one possible solution, but lose sight of other things going on in my body. Eventually, a wise doctor had me stop all of my drugs. While that didn't help me physically, it did open the door for me to have the second sleep study. This time, the tests clearly showed narcolepsy. I think one of the problems the first time around was that I was taking an anti-depressant. Those tend to suppress REM - the very thing we were trying to find.
The road since August of 2007 has been nuts. It is great to know that much of what I have been experiencing is the narcolepsy; the past seven years have been a steady decline in energy for me. But knowing and coping are two wildly different things. Part of my struggle has been simply accepting the idea of being disabled. The truth is that I simply can't do what I used to do. My body jsut doesn't work that way. Another part has been the battle to find the right medications. I tried Provigil, but am in that tiny group that reacts horribly to it. Provigil affected me the way large doses of stimulants tend to affect others. After that, my doctor had me try methylphenidate again, but 80 mg during the day was not nearly enough. We settled on amphetamine, which seems to work okay, except for the high blood pressure that it is creating. I get to take atenolol now since I was 150/100 at my last doctor appointment.
Still, I feel lucky. One, my narcolepsy is manageable. Two, I do not experience cataplexy, at least I don't think that I do. Three, I have a supportive spouse and a job that allows me to work part-time. Four, and most important, I needed to slow down in my life. I know that the narcolepsy has helped me to see what is important to me. That doesn't change the fact that this disease continues to frustrate and anger me, but it does help me to remain calm even as I struggle to get a simple task done.
I also know that my narcolepsy has forced me to open up more. I need to connect with other narcoleptics. I think I have found a support group, but I also just need to express my insights and ideas. Hence, I started this blog. Many of the posts will be about narcolepsy and my journey, but it will also cover anything and everything that enters my wee little brain. If anyone ever reads it, great. If not, great.
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