Discouragement: the scourge of chronic disease.
I do my best not to wallow in it; I try to push it away when it comes crawling in, like a fog under the door. Even when I’m immersed in it, I hate it. I’m afraid of it. I worry that it’s right, and I’m wrong, and one day I’m just going to have to give in to its seduction.
Yet I’d be lying if I pretended it didn’t happen.
It’s not something I like to talk about. As bestselling author Laura Hillenbrand says about chronic disease, “I didn’t want to talk about it very much because I had the experience of being dismissed and ridiculed.” No one wants to hear a sob story, and persons with chronic disease can look perfectly healthy most of the time, so the inability to apply the stamina of most persons our age to our lives becomes suspect in others' eyes. Better to only imagine people think you're faking, not to see it in their eyes.
Discouragement follows the physical. When I’m feeling relatively good, I can keep it at bay. But when my head fills with cotton and my bones ache and my muscles turn to sludge, discouragement seeps in.
I am so fortunate in that I was able to get full-time work I enjoy after losing my dream job to chronic disease and spending over a year on the unemployment roll. I’m grateful that I’ve been able to keep that job for two years now, despite debilitating symptoms. My boss is a compassionate woman who understands my struggles and my desire to get better, and she puts up with my weird schedule brought on by my three chronic diseases—make it four, if we add ADD, which many people don’t “believe” in, even though brain scans confirm it. (The other three, hepatitis C, primary aldosteronism, and polycythemia, are certainly “real,” and all of them list fatigue as primary symptoms.)
And, yes, my most troublesome symptom these days is fatigue, a fatigue that sweeps me away into a coma-like sleep that is extremely difficult to wake from. Again, I’m fortunate because my place of work allows flexible schedules. When I told my boss I wasn’t sure I could make it in anymore at 10 a.m., she said, “Well, come in at 12.” But now, many days, even noon is an impossible goal. Some days, I don’t walk through the doors until 3 p.m., though usually it’s somewhere between 1 and 2. As long as I work my 40 hours each week, or at least the minimum hours for that month, however, I’m fine.
Or so I thought.
Discouragement comes at you when you least expect it. I regularly beat myself up for my inability to get to work earlier. It’s embarrassing, for one thing. For another, I want to be home in the evenings. I don’t want to work until 9 or 10 or even later at night and get home just in time to collapse back in bed to start the whole depressing cycle over again for another day. I’d love to be outside in the afternoon sun, spending time in the garden, walking in the woods with the dogs at the end of a satisfying day at work. I love my home and the woods surrounding it—they’re why I work, so I can stay here. But it’s ironic that I rarely get to enjoy them.
I’m always searching for something that will help me change this pattern. It should just be a matter of willpower, shouldn’t it? So one would think. Yet as much as I get mad at myself for failing to wake when I should, my body won’t cooperate. My mind IS willing; my body is not. Sleep is controlling my life, not the other way around. Just recently, I thought I’d made my peace with it. I’d read a couple of things that helped me absorb the fact that this problem is physical, not mental, that it’s not a character flaw. After all, I’m 52 years old, and for many, many years I was able to arrive at work at 8:30 or 9 a.m., whenever the start time was. It’s only now, after these three diagnoses, that I no longer can. (Though I briefly had similar but lesser trouble in years past when clinically depressed, I am not depressed now, only frustrated). I never thought of myself as a sickly person, so getting this triple-whammy has forced me to accept a whole new person inside this body, and that person is not who I thought I was. I constantly miss the energetic, upbeat person who used to be me.
But reading others’ stories helps me feel better about it, to stop blaming myself for what I can’t control. Recently, ABC News ran “A Doctor’s Bout with Hepatitis C” on its Web News. In the article, Douglas Dieterich, MD, who had since been successfully treated, stated, “At one point I was so debilitated by this … disease, I had to put my life on hold .… All I ever wanted to do was sleep” (emphasis added.) Oh, Dr. Dieterich, I so know what you mean! Unfortunately, I’m not a candidate for treatment. I have the genotype (1a) that is the least likely to respond to treatment, and persons who have been diagnosed with depression are not advised to undergo the year-long chemotherapy with interferon and ribovin because it can have mental side effects, not to mention ongoing flu-like symptoms (which make you want to sleep!), AND is only successful in half of the patients who go through all that anyway. My hepatologists have consistently told me treatment would not be a good idea, especially when my liver remains free of fibrosis. (My viral load, however, is very high, so I’ve got lots of it circulating throughout my body on a regular basis, wreaking its incremental devastation.)
I also recently found an article describing the effect ADD/ADHD can have on sleep. Now, I only figured out I have ADD over the past ten years as well, though I’ve had every classic symptom of the disorder my whole life and my son was diagnosed with it as a child. As I said earlier, I always thought of myself as “normal” (whatever that is). I never thought of myself as sickly or needing any special consideration until everything sort of fell apart in my late forties. I’ve always been able to compensate for my deficiencies, and compensate rather well. All my life my school and work history was one of success, accomplishment, and praise—despite what I see now as a pretty major case of ADD. So that tells me I am a strong person, or I was, anyway, until the diagnoses began piling on.
That ADD is a culprit in sleep problems, or vice versa, I have known for some time. The body may be awake, but the brain is not fully so, which is why we ADDers don’t fully grasp everything going on around us and why some of us act “hyper.” (Have you ever seen a child become wound up when needing sleep?)
William Dodson, MD, whose practice is devoted to ADD patients with sleep issues, says, “More than 80 percent of adults with ADHD in my practice report multiple awakenings until about 4 a.m. Then they fall into ‘the sleep of the dead,’ from which they have extreme difficulty rousing themselves” (http://www.additudemag.com/adhd/article/757.html). Over 80 percent!
This is nearly word-for-word what I’ve told my physicians and my boss about my sleep pattern, except I finally fall asleep closer to 6 a.m. or so. I’ve tried to go to sleep earlier, to no avail. Even when I lie down at 1 or 2 a.m., an hour or more passes before I fall asleep, and even then it’s a light sleep, with my waking regularly through the night for hours. Then, apparently, close to morning, I fall into that “deathlike sleep” in which I dream wild dreams and from which waking is like climbing up a dark hole with my hands tied behind my back.
Hoping a sleep study would help me figure the problem out, I underwent two. Both confirmed this pattern. I did not enter REM sleep either time—but I was awakened by a nurse at 6 a.m., about when I usually fall into that deathlike sleep with its vivid dreams. To make things only worse, I was found to have sleep apnea—it was called “mild,” but it certainly can’t be helping—yet because it is mild I was not approved for a CPAP machine. The sleep doctor suggested my taking Effexor might be the reason I don’t go into REM sleep. Yet I do fall into it eventually—it just happens to be when I need to wake up!
And stopping Effexor is not an option.
I do have to leave the house by 9:30 a.m. one day a week because my job takes me to a location an hour and a half away. I am still able to do this most Tuesdays (fortunately, early in the week). Thus, some might say, “Well, if she can do it then, she can do it every day.” I only wish that were true. I simply can’t do that on a consistent basis. Once a week, and occasionally twice if I’m needed somewhere else, is all I can manage. By Friday, I’m barely able to drag myself to work, and most weekends I sleep all day Saturday and all day Sunday (often till as late as 6 or 7 p.m.), trying to catch up for the sleep I “haven’t” had. Gone are the days when eight hours of sleep a night were enough to keep me going. Gone are regular evenings hanging out with friends and loved ones, though I do still try to manage those now and then, over my body’s resistance, which I can do in the evening better than in the morning. Most of my days (and nights) are filled with work and sleep, sleep and work--my bills, my house, my chores all lying there waiting for me to have some energy to address them.
And so learning recently that my coworkers have been talking about my schedule was more than a little painful. Oh, I’ve always figured they gossiped about it; I figured they thought I was weak or unprofessional or lazy, but I learned yesterday that my schedule was the topic of a staff meeting—more than a little disconcerting. Fortunately, another woman at the office also works the hours I do, more or less, so we were both discussed at a meeting we did not attend. Never mind that others have “flexible” schedules that get them in at 6:30 or 7 a.m., long before most “normal” office workdays begin, and some spend much more time away from the office than in it to the point where it’s sometimes weeks between times I see them, even when I’m in at 1 p.m. most days.
And so, here I am, trying to figure out what to do. I don’t want to make my problems a problem for my boss, who has been so understanding all this time. I don’t want to be a cause of poor morale in the office. True to my mother, who pounded the importance of honesty into my head all the twenty-eight years of my life during which she lived, I am scrupulous about keeping track of the hours I work, but I realize others might believe I’m skimming off time since they are not at the office late at night, as I so often am. I know that an ADA accommodation can be made for a person’s schedule, but I’ve never asked for it, as thus far I haven’t really seen how my late schedule is detrimental to the work I do—I carry a lot of responsibility and do it quite well, I believe--but it’s the perception that matters here, apparently.
Frankly, I don’t know how long I can keep going this way myself. I’m tired (ha) of working and sleeping and barely being able to do anything else. I’d like to have a life again. I’m tired of barely hanging on, barely able to scrape up the hours I need each month to meet my full-time work schedule and the rest of the time either sleeping or feeling horrible, as I do right now.
I’m beginning to think it might be time to apply for disability. Since it takes something like two years for the average person to be approved, it’s probably time to get that process started. The idea depresses me. I like working because it keeps me from sleeping 24/7. After I lost my previous job to illness, I did sleep nearly all the time for the fourteen months it took to get hired again, and I’m afraid I will go back to that twilight existence if I don’t have a purpose for getting up, albeit late. I want to contribute to my community; I want to use the talents I’ve been blessed with to make things a little better for others. These two years, I’ve made valuable contributions to my place of work (including writing federal grant proposals funded for significant amounts, and bringing in a contract that pays two-thirds of my salary), and I’d like to keep doing such things because they help improve health care in the area, and I like being a part of that.
But, today, I’m discouraged.
Maybe tomorrow I’ll feel better. But, then, most tomorrows I don’t feel better. Most tomorrows are struggles just like today. Most tomorrows, discouragement is lurking on the other side of the door, waiting to slide in and take me down, as it’s trying to do right now … and the fight gets harder when I let myself hear what others believe instead of tuning them out and remembering what, unfortunately, I know to be true.
But, blessedly, thankfully, not all tomorrows are like that, and that is ultimately what keeps me from allowing discouragement to win.
So now, let me plug my ears, stuff some towels under the door where discouragement lives, and pull out the guidelines to the grant proposal I’m writing that is due next week. Fortunately, writing can be done early or late, day or night, and now it’s time to get to it.
I do my best not to wallow in it; I try to push it away when it comes crawling in, like a fog under the door. Even when I’m immersed in it, I hate it. I’m afraid of it. I worry that it’s right, and I’m wrong, and one day I’m just going to have to give in to its seduction.
Yet I’d be lying if I pretended it didn’t happen.
It’s not something I like to talk about. As bestselling author Laura Hillenbrand says about chronic disease, “I didn’t want to talk about it very much because I had the experience of being dismissed and ridiculed.” No one wants to hear a sob story, and persons with chronic disease can look perfectly healthy most of the time, so the inability to apply the stamina of most persons our age to our lives becomes suspect in others' eyes. Better to only imagine people think you're faking, not to see it in their eyes.
Discouragement follows the physical. When I’m feeling relatively good, I can keep it at bay. But when my head fills with cotton and my bones ache and my muscles turn to sludge, discouragement seeps in.
I am so fortunate in that I was able to get full-time work I enjoy after losing my dream job to chronic disease and spending over a year on the unemployment roll. I’m grateful that I’ve been able to keep that job for two years now, despite debilitating symptoms. My boss is a compassionate woman who understands my struggles and my desire to get better, and she puts up with my weird schedule brought on by my three chronic diseases—make it four, if we add ADD, which many people don’t “believe” in, even though brain scans confirm it. (The other three, hepatitis C, primary aldosteronism, and polycythemia, are certainly “real,” and all of them list fatigue as primary symptoms.)
And, yes, my most troublesome symptom these days is fatigue, a fatigue that sweeps me away into a coma-like sleep that is extremely difficult to wake from. Again, I’m fortunate because my place of work allows flexible schedules. When I told my boss I wasn’t sure I could make it in anymore at 10 a.m., she said, “Well, come in at 12.” But now, many days, even noon is an impossible goal. Some days, I don’t walk through the doors until 3 p.m., though usually it’s somewhere between 1 and 2. As long as I work my 40 hours each week, or at least the minimum hours for that month, however, I’m fine.
Or so I thought.
Discouragement comes at you when you least expect it. I regularly beat myself up for my inability to get to work earlier. It’s embarrassing, for one thing. For another, I want to be home in the evenings. I don’t want to work until 9 or 10 or even later at night and get home just in time to collapse back in bed to start the whole depressing cycle over again for another day. I’d love to be outside in the afternoon sun, spending time in the garden, walking in the woods with the dogs at the end of a satisfying day at work. I love my home and the woods surrounding it—they’re why I work, so I can stay here. But it’s ironic that I rarely get to enjoy them.
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| "My woods"--That's a potential rain barrel lying behind that tree ... Yes, I know hydrangeas are not native to Appalachia, but I'm not a purist. I adore them. I do plan to add some viburnum and oakleaf hydrangea that ARE native, however. |
I’m always searching for something that will help me change this pattern. It should just be a matter of willpower, shouldn’t it? So one would think. Yet as much as I get mad at myself for failing to wake when I should, my body won’t cooperate. My mind IS willing; my body is not. Sleep is controlling my life, not the other way around. Just recently, I thought I’d made my peace with it. I’d read a couple of things that helped me absorb the fact that this problem is physical, not mental, that it’s not a character flaw. After all, I’m 52 years old, and for many, many years I was able to arrive at work at 8:30 or 9 a.m., whenever the start time was. It’s only now, after these three diagnoses, that I no longer can. (Though I briefly had similar but lesser trouble in years past when clinically depressed, I am not depressed now, only frustrated). I never thought of myself as a sickly person, so getting this triple-whammy has forced me to accept a whole new person inside this body, and that person is not who I thought I was. I constantly miss the energetic, upbeat person who used to be me.
But reading others’ stories helps me feel better about it, to stop blaming myself for what I can’t control. Recently, ABC News ran “A Doctor’s Bout with Hepatitis C” on its Web News. In the article, Douglas Dieterich, MD, who had since been successfully treated, stated, “At one point I was so debilitated by this … disease, I had to put my life on hold .… All I ever wanted to do was sleep” (emphasis added.) Oh, Dr. Dieterich, I so know what you mean! Unfortunately, I’m not a candidate for treatment. I have the genotype (1a) that is the least likely to respond to treatment, and persons who have been diagnosed with depression are not advised to undergo the year-long chemotherapy with interferon and ribovin because it can have mental side effects, not to mention ongoing flu-like symptoms (which make you want to sleep!), AND is only successful in half of the patients who go through all that anyway. My hepatologists have consistently told me treatment would not be a good idea, especially when my liver remains free of fibrosis. (My viral load, however, is very high, so I’ve got lots of it circulating throughout my body on a regular basis, wreaking its incremental devastation.)
I also recently found an article describing the effect ADD/ADHD can have on sleep. Now, I only figured out I have ADD over the past ten years as well, though I’ve had every classic symptom of the disorder my whole life and my son was diagnosed with it as a child. As I said earlier, I always thought of myself as “normal” (whatever that is). I never thought of myself as sickly or needing any special consideration until everything sort of fell apart in my late forties. I’ve always been able to compensate for my deficiencies, and compensate rather well. All my life my school and work history was one of success, accomplishment, and praise—despite what I see now as a pretty major case of ADD. So that tells me I am a strong person, or I was, anyway, until the diagnoses began piling on.
That ADD is a culprit in sleep problems, or vice versa, I have known for some time. The body may be awake, but the brain is not fully so, which is why we ADDers don’t fully grasp everything going on around us and why some of us act “hyper.” (Have you ever seen a child become wound up when needing sleep?)
William Dodson, MD, whose practice is devoted to ADD patients with sleep issues, says, “More than 80 percent of adults with ADHD in my practice report multiple awakenings until about 4 a.m. Then they fall into ‘the sleep of the dead,’ from which they have extreme difficulty rousing themselves” (http://www.additudemag.com/adhd/article/757.html). Over 80 percent!
This is nearly word-for-word what I’ve told my physicians and my boss about my sleep pattern, except I finally fall asleep closer to 6 a.m. or so. I’ve tried to go to sleep earlier, to no avail. Even when I lie down at 1 or 2 a.m., an hour or more passes before I fall asleep, and even then it’s a light sleep, with my waking regularly through the night for hours. Then, apparently, close to morning, I fall into that “deathlike sleep” in which I dream wild dreams and from which waking is like climbing up a dark hole with my hands tied behind my back.
Hoping a sleep study would help me figure the problem out, I underwent two. Both confirmed this pattern. I did not enter REM sleep either time—but I was awakened by a nurse at 6 a.m., about when I usually fall into that deathlike sleep with its vivid dreams. To make things only worse, I was found to have sleep apnea—it was called “mild,” but it certainly can’t be helping—yet because it is mild I was not approved for a CPAP machine. The sleep doctor suggested my taking Effexor might be the reason I don’t go into REM sleep. Yet I do fall into it eventually—it just happens to be when I need to wake up!
And stopping Effexor is not an option.
I do have to leave the house by 9:30 a.m. one day a week because my job takes me to a location an hour and a half away. I am still able to do this most Tuesdays (fortunately, early in the week). Thus, some might say, “Well, if she can do it then, she can do it every day.” I only wish that were true. I simply can’t do that on a consistent basis. Once a week, and occasionally twice if I’m needed somewhere else, is all I can manage. By Friday, I’m barely able to drag myself to work, and most weekends I sleep all day Saturday and all day Sunday (often till as late as 6 or 7 p.m.), trying to catch up for the sleep I “haven’t” had. Gone are the days when eight hours of sleep a night were enough to keep me going. Gone are regular evenings hanging out with friends and loved ones, though I do still try to manage those now and then, over my body’s resistance, which I can do in the evening better than in the morning. Most of my days (and nights) are filled with work and sleep, sleep and work--my bills, my house, my chores all lying there waiting for me to have some energy to address them.
And so learning recently that my coworkers have been talking about my schedule was more than a little painful. Oh, I’ve always figured they gossiped about it; I figured they thought I was weak or unprofessional or lazy, but I learned yesterday that my schedule was the topic of a staff meeting—more than a little disconcerting. Fortunately, another woman at the office also works the hours I do, more or less, so we were both discussed at a meeting we did not attend. Never mind that others have “flexible” schedules that get them in at 6:30 or 7 a.m., long before most “normal” office workdays begin, and some spend much more time away from the office than in it to the point where it’s sometimes weeks between times I see them, even when I’m in at 1 p.m. most days.
And so, here I am, trying to figure out what to do. I don’t want to make my problems a problem for my boss, who has been so understanding all this time. I don’t want to be a cause of poor morale in the office. True to my mother, who pounded the importance of honesty into my head all the twenty-eight years of my life during which she lived, I am scrupulous about keeping track of the hours I work, but I realize others might believe I’m skimming off time since they are not at the office late at night, as I so often am. I know that an ADA accommodation can be made for a person’s schedule, but I’ve never asked for it, as thus far I haven’t really seen how my late schedule is detrimental to the work I do—I carry a lot of responsibility and do it quite well, I believe--but it’s the perception that matters here, apparently.
Frankly, I don’t know how long I can keep going this way myself. I’m tired (ha) of working and sleeping and barely being able to do anything else. I’d like to have a life again. I’m tired of barely hanging on, barely able to scrape up the hours I need each month to meet my full-time work schedule and the rest of the time either sleeping or feeling horrible, as I do right now.
I’m beginning to think it might be time to apply for disability. Since it takes something like two years for the average person to be approved, it’s probably time to get that process started. The idea depresses me. I like working because it keeps me from sleeping 24/7. After I lost my previous job to illness, I did sleep nearly all the time for the fourteen months it took to get hired again, and I’m afraid I will go back to that twilight existence if I don’t have a purpose for getting up, albeit late. I want to contribute to my community; I want to use the talents I’ve been blessed with to make things a little better for others. These two years, I’ve made valuable contributions to my place of work (including writing federal grant proposals funded for significant amounts, and bringing in a contract that pays two-thirds of my salary), and I’d like to keep doing such things because they help improve health care in the area, and I like being a part of that.
But, today, I’m discouraged.
Maybe tomorrow I’ll feel better. But, then, most tomorrows I don’t feel better. Most tomorrows are struggles just like today. Most tomorrows, discouragement is lurking on the other side of the door, waiting to slide in and take me down, as it’s trying to do right now … and the fight gets harder when I let myself hear what others believe instead of tuning them out and remembering what, unfortunately, I know to be true.
But, blessedly, thankfully, not all tomorrows are like that, and that is ultimately what keeps me from allowing discouragement to win.
So now, let me plug my ears, stuff some towels under the door where discouragement lives, and pull out the guidelines to the grant proposal I’m writing that is due next week. Fortunately, writing can be done early or late, day or night, and now it’s time to get to it.
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