By Main Man on 8 February 2010
I fully realize that the eastern seaboard of the United States has received more snow than the Midwest (at least this year), but I must declare that winter in Minnesota is awful. We are in the midst of yet another snow storm, and my driveway is full of snow. Unfortunately, our snow blower is on its last legs, and my wife and I are both exhausted. Even worse, my city is not declaring a snow emergency until tomorrow night. That might not be too bad if most of the side streets were relatively clear before this snow began last night, but the reality is that our side streets are still a disaster from the ridiculous ice and snow that fell in December (not to mention the multiple inches and melting/refreezing that took place in January). Thus, I will likely attempt to snow blow my driveway between 5 and 6 AM tomorrow. It will take an hour and wipe me out for the day. Then, I will need to get ready for my school day and battle the side streets all the way to my job. I have had one other day this winter when I did basically the same thing, but without any teaching. Between my narcolepsy and my exhaustion, the last dance with my snow blower and messy streets needed two to three days for recovery. I can only imagine how a full day of teaching will add to the fun that awaits me tomorrow.
The reality of winter’s impact on me, though, goes well beyond a two and a half day snow fall. Amid the snow and slush, the lack of daylight, and the frigid temperatures, I actually think the biggest issue is an instinctual impulse to hibernate. Like most higher order mammals in colder climates, humans must have a hibernation instinct. If we did not, how could we have survived before the development of heating systems and insulated homes. Perhaps most people can shake off the added urge to sleep, but as a PWN I find it insane that my brain and body can do even more to make me feel like I should sleep. I will push through tomorrow and the doldrums of February, but it will not be easy. I keep hoping that living with narcolepsy will get easier, but more and more I recognize that such thoughts are sheer fantasy. I continue to learn how to accept the ups and downs of my daily life, but tolerance is not ease. Not by a long shot.
Nonetheless, we are slowly gaining more light. And, eventually all of this snow will melt (hopefully sometime in late April or May). I will continue to work on mindfulness – being present in the here and now. That has served me well, even as I have struggled with my energy this year. More and more, I am able to let go of what might have been and of what might come. Instead, I ride the ebb and flow of each moment and each event. Being a Type A planner, that is neither easy, nor comforting, yet it is the right course of action. More than anything else I have done, mindfulness allows me to stay sane in the midst of the madness of narcolepsy. Of course, mindfulness is more fun when temperatures are not below the freezing point of water and when precipitation does not accumulate in white, fluffy inches.
Posted in Balance, Depression, Driving, Eastern Ideas, Exhaustion, Frustration, Loss, Narcolepsy, Travel
By Main Man on 1 February 2010
Many of my colleagues at school subscribe to the following axiom, “Never make major life decisions in February.” The logic is fairly simple. As an educator (particularly in Minnesota), no month of the school year is more difficult than February. Cabin fever is settling in completely – both for adults and students – as your students are also reaching their breaking point in terms of tolerance for the tedium of the U.S. educational system. On top of that, at least in Minnesota, the weather is rotten and overcast. And, you often go the entire month with only one extra vacation day. I share all of that because I have the feeling that the next 27 days will require me to repeat the aforementioned axiom as a meditative mantra.
I have clearly felt the bite of my narcolepsy more strongly over the past week and a half. Clearly, I am pushing too hard again, yet I don’t know how else to handle the demands of my job, my family, and my sanity. I arrived at school today knowing that I had not only gotten some extra correcting done over the past weekend, but also I had even gotten two of the papers I received last Friday corrected already. That is a huge accomplishment for me. Unfortunately, I found little pleasure in it. The day was fraught with problems and concerns. Somehow, my colleagues and I need to fit the Middle Ages, the Renaissance, and Romeo & Juliet into the last three weeks of February. We also need to get our students registered for next year, fit in a couple of fun days, find space for chapel time, and still manage to keep them sane and motivated. All of that angst piled into the first 45 minutes of my day, as I also realized that both of my co-teachers are definitely fighting a cold.
Then, our students arrived. They had only one thing to do this weekend – read a fairly engaging piece of historical fiction to get a feel of an Ancient Roman city. Out of 41 students in our first class, at least 16 failed to do that. The numbers grew in our second class – 23 out of 42 did not read. Those numbers fail to count the students who said they did read that then failed to get more than 1 or 2 items correct on the 5 point reading check. Fortunately, we weathered that well and got the students going on some research. Although my students’ apathy bummed me out, it did not ruin my day. That would come after school.
As if my day had not drained me enough, I left school in a mild snow storm, realizing that I would have a long afternoon of driving. Picking up my daughter, I learned that she had been removed from her school’s gifted and talented program. Now, as an educator, I fully realize that many things need to be factored into how a gifted and talented program is run. The stunning issue today, though, was that my daughter was removed for her grades, but she had an “A-” average in the previous quarter. I also know that the supervising teacher firmly believes in multiple intelligences, which would make it strange that a student would be removed for “poor grades.” Nonetheless, I got to deal with a distraught thirteen-year-old on the way home. I could not even spend time in our house comforting her, though, because I had an ENT appointment. I was slightly late arriving there because of the snow, but they got me in immediately. Then, I had a much longer ride home (after a lengthy phone call with my wife regarding our daughter) because traffic slowed down even more with the snow.
Thus, I find my head already swimming, and February is not even 24-hours-old yet. The month does not bode well. I have no doubt that ups and downs await in the 27 days ahead, but I also know that my narcolepsy will make it that much tougher to bear those trials and tribulations. I will work to avoid major life decisions and to appreciate the experience of each moment. I also know that I will wallow at times because my energy level seems to be dipping again. In the end, though, I must remember how little I do control. Life and narcolepsy will be what they are. That is okay. I will work to accept everything that comes, and I will forgive myself when I rail against the injustice of my condition.
Posted in Anger, Depression, Education, Emotions, Empathy, Exhaustion, Family, Frustration, Healthcare, Humility, Insights, Narcolepsy, Parenting
By Main Man on 12 January 2010
Sadly, I am writing well past my bed time, yet again. That said, I am handling things decently. Over the last few years, I have struggled mightily when I have gone back to work after longer breaks. Regularly, my expectations are far too high. Needless to say, I worried that returning to school after not only a break, but also a medication holiday, would turn me inside out. Instead, I managed to lower my goals for the week, and I cut myself a break, knowing that my transition back never goes well.
I certainly have battled my anxiety since school restarted on January 4, but I have been far kinder to myself. I still have far too many papers to correct, but I have greatly minimized my self-abuse. While I know I need to get those done – soon – I am also doing a much better job of remaining focused on each moment of each day. Rather than torturing myself for not finishing my correcting, I am at peace that I have done a good job of developing new curricular pieces and being prepared for my daily work. Even more importantly, I have done a good job of helping my wife and daughter within our home. I take great pride in taking another step down the path of learning how to manage my narcolepsy. Invariably, I will spiral out of control numerous times as I continue this journey, but I will cling to the knowledge that I have plenty of day that are wonderful because I can embrace the chaos that narcolepsy brings without losing my mind.
I definitely need to continue improving my kindness to myself. I remain too quick in my self-deprecation. Beyond that, I must establish a routine of exercise and yoga. My increasing waist line demands that, but more importantly my psyche needs the peace that yoga and exercise bring to me. My short term goal for this week is to take the first step by doing one or the other before Sunday, January 17. It helps that I will have Monday, January 18, as a recovery day (since exercise tends to drain me completely of late). Nonetheless, as hard as things are and as rotten as I feel, my hope is high and my outlook good.
Posted in Balance, Emotions, Exercise, Faith, Family, Frustration, Gratitude, Healing, Honesty, Hope, Medication Holiday, Narcolepsy, Wisdom
By Main Man on 7 January 2010
Yesterday, I had my last appointment with my current psychiatrist. He is retiring. Although I only see him for 20 minutes every 6 months, I will miss those appointments. My therapist has been a far better help as I continue to learn how to live with narcolepsy, but my psychiatrist definitely made an impact on me in our limited contact. Unfortunately, I have no idea who I will start seeing now. His position will remain vacant for at least 6 months, and the clinic is so overwhelmed that no one else is taking new patients for at least 3 or 4 months. Thus, I am adrift yet again. Fortunately, I have at least a year on my fluoxitene prescription, which is the med that my psychiatrist wrote for me, but I would like to continue to see someone.
Interestingly, my psychiatrist asked me about my “neurologist,” assuming that I see one for my narcolepsy. I tactfully said that I see a pulmonary specialist for my narcolepsy. We then chatted about how frustrating it can be with a disease like narcolepsy. Most diseases and conditions are handled by the doctors who specialize in that body system, but sleep issues affect MANY systems. Thus, the original sleep doctors were primarily psychiatrists. Certainly, some neurologists became interested, but there are so many neurological conditions that most neurologists have almost no experience with sleep issues (even narcolepsy). Due to the huge (and growing) numbers of people with obstructive sleep apnea (OSA), many pulmonary doctors achieved sleep certification, but most of them only handle OSA. They can diagnose more “classic” narcolepsy, but rarely recognize the wide variety of ways that narcolepsy can impact PWNs. Unfortunately, some pulmonary doctors have NEVER actually handled a narcolepsy case. One of my PWN friends was told by her initial doctor that he was transferring her to a different doctor because he had no idea what he should prescribe for her when her PSG and MSLT showed narcolepsy. Finally, the number of ENTs with sleep certification is also growing. Sadly, those doctors are also focused on OSA. The new research that has provided narcolepsy with cataplexy is definitely an auto-immune disease has raised hopes that immunologists will begin looking at sleep, but the bottom line is that most PWNs struggle to find a decent doctor.
My conversation with my retiring psychiatrist reminded me of my own frustrations with my current sleep doctor. Even though he is a pulmonary doctor, he does know a decent amount about narcolepsy, but he did not even talk to me the last time I was at his office. For him, it is all about getting me the right meds. I wish there was a decent neurologist in the Minneapolis/Saint Paul area who treated sleep issues, particularly narcolepsy. The only person I know of was not practicing until recently, and she could only begin working again recently in southern Minnesota. She is also a dear friend which would make it awkward for her to be my neurologist. A fantastic neurologist (almost as good as my friend) practices in Saint Cloud, but that is an hour and a half drive. Plus, I will likely have to pay for the appointments out of my own pocket. At the same time I desperately want to see a doctor who honestly gets narcolepsy. I must admit that my deepest desire would be to find a neurologist who specializes in sleep that is also a PWN. I firmly believe that many PWNs would travel across the country to such a doctor. Who knows, maybe someday!
Posted in Dreams, Frustration, Gratitude, Honesty, Medical Research, Narcolepsy, Travel
By Main Man on 4 January 2010
It is late, and I need to sleep, but I needed to report that my med holiday seems to have helped some. I took my amphetamine today for the first time since the morning of December 30. While I did not feel a significant improvement in its effectiveness, I do think that I was more alert than I had been before the holiday. I probably needed a complete week away, but it is good to know that even four and a half days can help. My motivation for establishing a monthly break from my meds has definitely increased. I would love to find a way to have at least two and a half days off at least once every four weeks.
My concern remains how much those two and a half days would cost me in terms of lost time for school work, house work, family time, and personal time. Yet, I firmly believe that the other twenty-five and a half days of each four week stretch would be slightly more coherent for me. Much of it will come down to planning and prioritizing the time. I am proud of myself because I did manage to schedule a few appointments within the last twenty-four hours – appointments that I have put off scheduling for the past four months. I have yet to correct a single paper that I received right before my Christmas break, but I do think I am moving in the right direction.
Posted in Blessings, Chores, Excitement, Exhaustion, Family, Gratitude, Healing, Hope, Medication, Medication Holiday, Narcolepsy, Scheduling, Wisdom
By Main Man on 3 January 2010
One of the hardest aspects of a medication holiday is the fact that even when I feel coherent, I find it impossible to focus in any meaningful way. Although I was out for three different one to two hour blocks today, I also had more energy when I was awake. Yet, even with those moments of lucidity, I found it impossible to do anything that I truly needed to do – no correcting, no financial data entry, no office organizing. I did manage to wash a load of dishes, but that was it. Fortunately, I am more at ease with my rudderless approach to my day, but I still worry about the eventual impact that un-done work will have on my life. Those are the thoughts and burdens that I need to release. They are the things that drag me under far too often.
I am getting better at recognizing moments like this one. Even as I type this, I tell myself to breathe and to relax. My energy and focus during a medication holiday are minimal at best. Thus, I can have no expectation that I will accomplish anything during a med break, no matter how much I would “like” to get something done. I can also take comfort in the fact that I should be slightly more functional tomorrow (Monday) as a direct result of taking the time to clean my stimulant out of my body for four days. I hope I can find a better way to take medication holidays more consistently, so I don’t need to have 4 or 5 day breaks once a year. We will see what 2010 brings as I move forward constantly trying to find better ways to live with my narcolepsy.
Posted in Balance, Depression, Emotions, Exhaustion, Fear, Frustration, Healing, Honesty, Hope, Medication Holiday, Narcolepsy, Scheduling, Wisdom
By Main Man on 2 January 2010
Stunningly, it is twenty-ten. Although I find myself appreciating most moments of every day, I’m awed that the first decade of the twenty-first century has almost passed. Depending on one’s perspective, this new year marks the start of the second decade, or the end of the first. Either way, things have raced along at a breakneck pace. I am feeling that even more this past week.
The week of Christmas, my wife, my daughter, and I were in Disney World. While the experience was exhausting (and wonderful), each day lasted a lifetime. After our return, though, the past week has disappeared in a blink. The first couple of days became recovery time for me. I adore Disney and thoroughly enjoyed our trip, but I knew that I was doing too much throughout the trip. Nonetheless, I would have had it no other way. Spending time with my wife and daughter was far too important. Plus, I wanted to enjoy the wonder of Disney.
After those initial days of recovery, I made an important choice for me. Even though I had (and still have) many things to do in our home and for my job, I decided to take a medication holiday. We shall see if the decision was wise or not. Since Wednesday afternoon, I have done nothing – well, nearly nothing – around my home or for my job. I plan to continue the holiday through tomorrow (Sunday, January 3), but do hope to get at least some correcting done. I have not taken a medication holiday since December of 2008. Thus, this break is long over due. My fear, of course, is that it will have little to no impact on the effectiveness of my amphetamine. My last holiday worked extremely well, but I fear that an entire year without a break have built up too much of a tolerance. I also worry that my narcolepsy has gotten worse.
Obviously, I will see what next week brings when I return to my medication. My other concern with the holiday is what I am sacrificing to actually “have” the holiday. I hate that my functionality is entirely dependent on a drug. I know that these first few days of the holiday are compounded by mild withdrawal symptoms, but even when I get passed that, I remember from last year that my attention span and ability to concentrate is limited, at best. Even reading a book becomes a challenging experience. Heck, during the first few days, I struggle to watch a movie on my TV without drifting off (or even falling asleep). Thus, by taking this medication holiday, I am giving up any chance to help my wife, or to connect with my daughter, or even to get my students’ papers corrected. And, it means that when I do “re-enter” the land of the living, I will have a mountain of work awaiting me. All of this is part of the daily routine of narcolepsy anyway, but I hate that making a “good” and necessary choice (the medication holiday) still hurts me in the end.
Thus, the new year (and possibly the new decade) has arrived, but narcolepsy continues to vex me. I need to accept that and let go of my illusion of control. Narcolepsy will be what it is. My life will move forward. The sun will rise. I simply must breathe and accept what each day brings. While I may find that frustrating, I can’t afford to waste my energy fretting over things like that. The one resolution for this new year that I will honor is that I resolve to spend more time exercising – both with yoga and physical exertion. Those two thing will do a world of good for me – physically, emotionally, spiritually, and holistically.
Posted in Confusion, Exercise, Exhaustion, Family, Frustration, Healthcare, Illness, Medication Holiday, Narcolepsy, Support, Travel, Wisdom
By Main Man on 18 December 2009
I continue to cling to the hope that some day I will once again find a routine or pattern for my daily life. Sadly, I also realize that my dream seems to becoming more and more of a fantasy. For the life of me, I cannot establish any level of normalcy in my life. Although medical research has yet to prove that narcolepsy is a progressive disease, I am more firmly convinced than ever. I realize that my body has built a tolerance for my amphetamine, but my narcolepsy has definitely worsened. My excessive daytime sleepiness has deepened, and I do not think I am sleeping as well as I did previously. Of course, even if I am right, nothing can be done about it. I have no interest in increasing my stimulants, and I already take the maximum dose of Xyrem. My sleep hygiene needs improvement, but I doubt that even perfect adherence to the best sleep behaviors would improve my situation much. Thus, I am left with little recourse than to accept the increased struggles and to make the best of my daily situation.
Fortunately, I am getting better at living in the present and at practicing mindfulness. I have not felt “well” for weeks, but I not only managed to get to work every day, but I also have done a better job helping my wife around the house. I constantly feel the drain of my efforts and my narcolepsy, yet I am proud that I continue to make the best of each day. Although I would love to be more productive in the evenings, I do not think that I have ever done a better job in the classroom. I also know that my wife sees and appreciates what I am contributing at home. I definitely need to get better at managing my disease and my life, but I know that I have made radical improvements already.
Nonetheless, I am also left to ponder if my narcolepsy is worsening. As the mysteries of narcolepsy are slowly uncovered by medical researchers, the auto-immune aspects of the condition become clearer and clearer. I periodically have encounter non-descript issues with inflammation throughout my body, ranging from quirky shoulder pain to bizarre digestive issues. I will even find swelling in my testicle for time to time. I know that it is not testicular cancer because I have had two scrotal ultrasounds because of the inflammation. I share all of that because I am once again experiencing wide-spread inflammation. My chronic sinusitis is acting up again; I am experiencing sinus headaches with more frequency; there is discomfort in my testes; and other parts of my body feel “off” (and swollen – including some annoying internal hemorrhoids). While it mean nothing, I strongly suspect that my inflammation is linked to my immune system overreacting which might just cause it to destroy more hypocretin-producing cells in my hypothalamus. As much as I would love answers right now, I do appreciate that I am alive during a period of monumental discovery for this disease. It is exciting both because it might eventually improve my own lot in life, but also because it will likely reduce the number of PWNs (since preventative actions could be overwhelming successful in reducing those who experience the viral onset). Of course, that hopefulness is difficult to remember when I am trapped by a stressful day (or even a stressful week). Gratefully, I have survived to my school’s Christmas break. My wife, my daughter, and I will be in Disney World for the week of Christmas, which will be wonderful (albeit exhausting). After we return home, I will still have a week off. Although it will fly by, I dearly hope that I can carve some of the time for me.
Posted in Anger, Balance, Confusion, Education, Exhaustion, Family, Frustration, Healthcare, Medical Research, Narcolepsy, Sinuses, Travel
By Main Man on 5 December 2009
The one post I started in November went unfinished until December 5th. Nothing could sum up the past few weeks better than that reality. Daily life has been a constant series of overwhelming occasions. Even more frustrating is that fact that nothing major has taken place within the scope of my existence. My family has experienced no crises. We have faced no insurmountable issues. No, I have been done in by waking up, getting dressed, going to work for a few hours, picking up my daughter, and doing a minimal amount of work in my home. As galling as I find that, I am working hard to walk with this dilemma, rather than railing against it, or falling into a deep depression. One piece of the puzzle is that I am not sleeping as much as I should at night. Because I come home wiped out, I often fail to “start” working on school and house issues until 9 PM. Thus, there is still much to do when my “bed time” arrives. Also, I have eaten after 8 PM far too often. Thus, I am averaging 3-4 nights a week right now when I only take one dose of Xyrem. I am still functional the next day, but it is definitely feeding the slowly declining cycle of my struggles.
Another major problem is that I am wrestling with how to best keep time for myself. In the past when life has become harried I immediately deny anything that might be considered “mine.” Invariably such decisions lead to me exploding in anger because I give every ounce of myself away. Though I am protecting time for myself, I am letting that spill over into sleep time as well. I am also using television and our Wii exclusively for “my time.” I do not think either one is inherently bad, but when they consume all of my personal time, it is unhealthy. The trap, though, is that my energy is so low watching television and playing on the Wii feel like they are the only activities I can handle. I have read a few books as I have limped through the last few months, but doing that has taken much more effort than I have experienced before. Exercise and yoga barely even enter my mind it is often so groggy. When they do, I instantly balk at them because I know that doing either will make the next three to five days horrible for me. Obviously, if I could begin to strength myself physically, emotionally, and spiritually, I have no doubt that my days would become much more manageable. I just do not know how I would survive the two to three months that would be required to get to such a balanced place.
The Catch-22 of physical exertion might be the most insidious part of narcolepsy. I know that I feel better when I have a regular exercise routine. My stamina increases, and my mood improves dramatically. Yet, the drain of energy that consistent workouts cause will make work and home even more neglected in my daily life. I cannot afford for that to happen, yet I must begin to exercise. Undoubtedly, my mental gymnastics around this and my eventual solution will make for a wildly entertaining and humorous story someday, but right now it just makes my head hurt. I am hopefully that my impeding Christmas break will allow me to start establishing some better daily patterns. I would love to pretend that I will start those new habits pre-break, but there is no way that will happen. Being delusional will only undermine my confidence and my resolve to make some needed changes.
The reality of change has never been my strong suit, and narcolepsy definitely exacerbated that trait in me. I find myself struggling these days with even minor shifts in my schedule. Crossing into and out of the Eastern Standard time zone this summer impacted my for two to three days in either direction. And, the switch back to Daylight Savings Time this past November lingered for nearly a week. The other curse of “change” when it comes to my narcolepsy is that it has felt constant since well before my diagnosis. At nearly ever step along the journey of my current condition, I feel like I have been forced to let go of a portion of myself. Some of that release has been good for me, but far more has cut me to the core. Yet, I know that I will continue to face “change” for the remainder of this adventure in hypersomnia. Beyond the schedule change that I need to make so I can find balance and exercise, I also need to find ways to connect with my wife. Although things have been better during the past week, recently my wife shared with me that she does not feel like her needs are being met in our relationship. She realizes that I am doing the best I can, but she is being hurt by me nonetheless. Clearly, I find that an unacceptable reality, but I also recognize that I am not going to discover suddenly a font of energy that will enable me to do everything that I am doing right now AND let me dote on my wife. Thus, I must once again retrench my life. Some other “unnecessary” piece of flotsam much be jettisoned so I can continue to eek out my existence. The temptation, as I mentioned above, is to cut back on things that will keep me grounded, but that must never happen again. I do not know how this situation will resolve itself, but I am letting it simmer for a time before I act upon the situation. In the end I must stick to my priorities first and foremost. My wife, my daughter, and my sanity and health MUST come first. Everything else is gravy (or icing depending on your culinary tastes). I do not relish this coming period of reflection, but I know that no matter how difficult it is, I will come to terms yet again with narcolepsy’s latest curve ball for me and will find great strength and peace in the outcome. This disease remains a beautiful paradox – the major curse and the greatest blessing of my life.
Posted in Blessings, Confusion, Depression, Emotions, Exercise, Exhaustion, Family, Frustration, Gratitude, Honesty, Marriage, Narcolepsy, Parenting
By Main Man on 5 December 2009
The whirlwind of time has again swept me a month forward in time. While I cannot believe that a month has passed since the conference, I also feel like I have lived a year since then. The reality, though, is that I continue to struggle with getting my life on track. I am muddling through each school day and then barely functioning as a husband and dad. I know that living with a chronic condition has its peaks and valley, but the current valley is frighteningly long, and I have yet to see any sign of incline. Thankfully, my first trimester of teaching has nearly ended. The trimester was good, but my constant lack of energy is taking its toll. Plus, our students we working on iMovie projects over the past three weeks. Since I am the “tech” guy on our team, I have fielded a constant stream of questions over the past 21 days. While I love teaching and technology, I find myself completely taxed at this point. Five students presented in each class on Friday. The rest will present this coming Tuesday. From what we have seen thus far, all of the time and energy was completely worth it. Our teaching team will have a much better plan for the students next year, but even with the chaos of the current year, our students have done outstanding work.
I think I could appreciate the work success more, if I felt like I was contributing anything around my home. My wife continues to work like a madwoman because she is in high demand at her job (she truly is a phenomenal medical editor and writer). Unfortunately, her full time work coupled with my narcolepsy puts a constant strain on our relationship. She loves me dearly, but not only brings home a majority of our income. She also has to do a bulk of the housework because even my limit work schedule often leaves me worthless in the evenings. I do get the dishes done every other day or so. I also do most of the lawn mowing and some other chores, but the split is far from equitable. Certainly, we both recognize that the situation is a reality that is not my “fault,” but that rarely makes it easier on either of us. My largest concern is that I am experiencing a worsening of my condition and not simply a rough patch. While I cannot change things either way, I hate the idea of causing even more material to fall upon my wife. Hopefully, we will find a solution that allows both of us to have more joy. Some upbeat energy would be a nice change of pace.
Posted in Chores, Cleaning, Confusion, Depression, Emotions, Exhaustion, Family, Fear, Frustration, Love, Marriage, Narcolepsy, Relationships, Uncategorized