If I sounded as if I'm highly productive in life in Episode 63, this episode is the reality check.
I've been in bed, mostly asleep, for the past several days. That's the joy of chronic disease. On top of the hypersomnolence, lack of motivation is a serious aspect of my condition and, as medical research has demonstrated, a part of most if not all neurodegenerative diseases.
I watched an interview with Linda Ronstadt on YouTube the other day. She was diagnosed with Parkinson's Disease (PD) a year or so ago and, sadly, can no longer sing at all. She says her attempts sound like shouting, if they can be qualified at all. So sad. What a songbird she was.
Ronstadt also mentions severe lack of motivation as an aspect of PD, which my quick PubMed/MEDLINE search confirmed. Lack of motivation--exclusive of depression--is also found in Alzheimer's, MS, and other neurodegenerative diseases. Since I know I have some sort of neurodegenerative disease but don't yet know exactly which one, this confirms what I've known all along--this damned lack of motivation isn't because I'm lazy or depressed.
I generally don't feel sad, though I have occasions when I do, particularly when my energy is utterly zapped. But I don't stay in that state for long; before long, hope and happiness and productivity return.
Medical science has concluded that this "apathy"--lack of motivation, not necessarily lack of caring--is not due to psychological stress (though surely that adds to it) but is part and parcel of living with neurodegenerative disease.
The technical explanation for apathy in neurodegenerative conditions is explained in Behavioral Neurology of Movement Disorders, Volume 96, edited by Anderson, Weiner, and Long, "Across diagnostic groups, apathy is related to functional disturbance of the anterior cingulum, an area with reciprocal connections with limbic and frontal cortices and basal ganglia structures" (2005).
Our brain's white matter (as opposed to gray matter) is made of connective fibers that "transmit information among neurons within or across different brain regions" (Neuroscience Research Australia). My latest MRI shows far too many white matter lesions in my brain, which correspond to the disconnect there among the regions responsible for motivation.
In other words, the parts of my brain responsible for motivation just ain't talking to each other anymore. The chain is broken. I'm fighting not some personal failing but the dysfunction of my brain. This is a fight to the death.
As my previous episode made clear, I hope, when I am both mentally and physically able to do so, I keep myself productive. Most of that time is spent baking, sewing, or embroidering--quiet activities I've always enjoyed. I'd like to spend more time reading and writing, but unfortunately I spend an inordinate amount of time on the Internet browsing topics I enjoy, a time suck that can be done comfortably in bed while propped up on pillows.
I'd also like to spend more time hanging out with friends, and hiking, and going dancing, and a lot of other activities I used to regularly enjoy.
But in my days of "down time," even the Internet doesn't call me. Lying in bed and staring at the wall is sufficient, if mentally uncomfortable because I really hate doing that, on those days.
And so I fight those times, when I'm able to. When I can't, I submit. And hope I can fight through it another day.
I'm planning to take a class this fall, as I'm very close to a PhD as far as coursework goes. I don't know if I have it in me for the long haul, which will include getting re-certified in a foreign language, a major book reading list and oral exams on the readings, and, of course, the dissertation.
And I can't manage more than one class per semester, hardly a full-time load. But if I'm able to do so, I'd like to keep going. Deadlines imposed on me are helpful, or at least used to be. I've lost my ability to meet some of my deadlines. It's difficult anymore to be a "self-starter." But I do force myself most days.
Then there are days like the last three, when I've been able to do nothing more than lie in bed or on the couch. Yesterday, my diet consisted of one pack of Ramen noodles and, much later, a Stoeffer's Cheddar Potato Bake frozen dinner. Not enough to keep body and soul alive, that's for sure, but I not only didn't feel like fixing anything, I didn't really feel like eating anything.
Oh, I drank a good bit of ginger ale, too--all this sleeping is leaving me dehydrated, as my pee unclearly shows. I've become addicted to ginger ale--at least it beats my old addiction to Pepsi, since there's no caffeine in it. I know the purists will tell me the sugar is what's making me so sluggish, but, hey, I need some pleasure in life.
Speaking of pleasure, I've figured out that if I manage to actually have sex (an increasingly rare occurrence these sad days), I sleep pretty solidly for a couple of days afterwards. Two weeks ago, after a fiesta, I slept for 31 hours straight; last week, after similar rapturous activity, 24 hours straight. As I've discussed before, my stamina is so bad that sex is now leaving me weak and out of breath almost before we start.
And, obviously, for quite a while in the afterglow.
But we must truck on.
We must not give up on life.
So, most days I force myself. No, not to have sex every day--though Honey and I went at it, often multiple times a day, for the first five years of our relationship. Hey, maybe that's what wore me the hell out!
Anyway, most days I force myself to do something productive. And, perhaps, like with sex, when I finish doing that productive thing, my body goes into recovery mode. Which means sleep. And lethargy. And total lack of motivation. As I describe it to Honey: "I'm in total slug mode."
I don't want to be there. It's not a pleasant place to be. But when there, nothing pulls me from the fugue. Nothing compels me to become vertical rather than horizontal.
Fortunately, to date, this state is temporary. Eventually, perhaps when my body finally feels as rested as it can be, I do turn to something productive. Eventually, I'm even in the mood to have sex.
The best possible thing for a person with chronic disease is a partner who is understanding. Honey knows this is out of my control, and he is as patient as a saint. Of course, I turn him over to his cyber girlfriend(s) when I'm in this state--and, frankly, I'm grateful for their standing in. Or lying in.
But not all of us have the gift that, somehow, the Universe has bestowed upon me in the form of a nurturing, loving, patient partner. Therefore, I recommend a fine article, "Brain Fatigue 101" (including that caused by neurodegenerative disease), by Linda J. Dobberstein. I especially like her recommendations for easing that fatigue, many of which involve communing with nature. I find a day in my woods and gardens does much, perhaps more than anything else, to relieve the exhaustion and "apathy" I feel far too frequently.
What we need today is more time spent in nature, even when very sick. I can't think of anything that eases the mind and soul better than that.
I might brag about my accomplishments, but make no mistake about it: I'm using every bit of energy in my body just to get through my bad days. I've had no greater challenge in life than staying positive and productive in the face of chronic disease.
And I know exactly what I need right now: a day in my woods.
I've been in bed, mostly asleep, for the past several days. That's the joy of chronic disease. On top of the hypersomnolence, lack of motivation is a serious aspect of my condition and, as medical research has demonstrated, a part of most if not all neurodegenerative diseases.
I watched an interview with Linda Ronstadt on YouTube the other day. She was diagnosed with Parkinson's Disease (PD) a year or so ago and, sadly, can no longer sing at all. She says her attempts sound like shouting, if they can be qualified at all. So sad. What a songbird she was.
Ronstadt also mentions severe lack of motivation as an aspect of PD, which my quick PubMed/MEDLINE search confirmed. Lack of motivation--exclusive of depression--is also found in Alzheimer's, MS, and other neurodegenerative diseases. Since I know I have some sort of neurodegenerative disease but don't yet know exactly which one, this confirms what I've known all along--this damned lack of motivation isn't because I'm lazy or depressed.
I generally don't feel sad, though I have occasions when I do, particularly when my energy is utterly zapped. But I don't stay in that state for long; before long, hope and happiness and productivity return.
Medical science has concluded that this "apathy"--lack of motivation, not necessarily lack of caring--is not due to psychological stress (though surely that adds to it) but is part and parcel of living with neurodegenerative disease.
The technical explanation for apathy in neurodegenerative conditions is explained in Behavioral Neurology of Movement Disorders, Volume 96, edited by Anderson, Weiner, and Long, "Across diagnostic groups, apathy is related to functional disturbance of the anterior cingulum, an area with reciprocal connections with limbic and frontal cortices and basal ganglia structures" (2005).
Our brain's white matter (as opposed to gray matter) is made of connective fibers that "transmit information among neurons within or across different brain regions" (Neuroscience Research Australia). My latest MRI shows far too many white matter lesions in my brain, which correspond to the disconnect there among the regions responsible for motivation.
In other words, the parts of my brain responsible for motivation just ain't talking to each other anymore. The chain is broken. I'm fighting not some personal failing but the dysfunction of my brain. This is a fight to the death.
As my previous episode made clear, I hope, when I am both mentally and physically able to do so, I keep myself productive. Most of that time is spent baking, sewing, or embroidering--quiet activities I've always enjoyed. I'd like to spend more time reading and writing, but unfortunately I spend an inordinate amount of time on the Internet browsing topics I enjoy, a time suck that can be done comfortably in bed while propped up on pillows.
I'd also like to spend more time hanging out with friends, and hiking, and going dancing, and a lot of other activities I used to regularly enjoy.
But in my days of "down time," even the Internet doesn't call me. Lying in bed and staring at the wall is sufficient, if mentally uncomfortable because I really hate doing that, on those days.
And so I fight those times, when I'm able to. When I can't, I submit. And hope I can fight through it another day.
I'm planning to take a class this fall, as I'm very close to a PhD as far as coursework goes. I don't know if I have it in me for the long haul, which will include getting re-certified in a foreign language, a major book reading list and oral exams on the readings, and, of course, the dissertation.
And I can't manage more than one class per semester, hardly a full-time load. But if I'm able to do so, I'd like to keep going. Deadlines imposed on me are helpful, or at least used to be. I've lost my ability to meet some of my deadlines. It's difficult anymore to be a "self-starter." But I do force myself most days.
Then there are days like the last three, when I've been able to do nothing more than lie in bed or on the couch. Yesterday, my diet consisted of one pack of Ramen noodles and, much later, a Stoeffer's Cheddar Potato Bake frozen dinner. Not enough to keep body and soul alive, that's for sure, but I not only didn't feel like fixing anything, I didn't really feel like eating anything.
Oh, I drank a good bit of ginger ale, too--all this sleeping is leaving me dehydrated, as my pee unclearly shows. I've become addicted to ginger ale--at least it beats my old addiction to Pepsi, since there's no caffeine in it. I know the purists will tell me the sugar is what's making me so sluggish, but, hey, I need some pleasure in life.
Speaking of pleasure, I've figured out that if I manage to actually have sex (an increasingly rare occurrence these sad days), I sleep pretty solidly for a couple of days afterwards. Two weeks ago, after a fiesta, I slept for 31 hours straight; last week, after similar rapturous activity, 24 hours straight. As I've discussed before, my stamina is so bad that sex is now leaving me weak and out of breath almost before we start.
And, obviously, for quite a while in the afterglow.
But we must truck on.
We must not give up on life.
So, most days I force myself. No, not to have sex every day--though Honey and I went at it, often multiple times a day, for the first five years of our relationship. Hey, maybe that's what wore me the hell out!
Anyway, most days I force myself to do something productive. And, perhaps, like with sex, when I finish doing that productive thing, my body goes into recovery mode. Which means sleep. And lethargy. And total lack of motivation. As I describe it to Honey: "I'm in total slug mode."
I don't want to be there. It's not a pleasant place to be. But when there, nothing pulls me from the fugue. Nothing compels me to become vertical rather than horizontal.
Fortunately, to date, this state is temporary. Eventually, perhaps when my body finally feels as rested as it can be, I do turn to something productive. Eventually, I'm even in the mood to have sex.
The best possible thing for a person with chronic disease is a partner who is understanding. Honey knows this is out of my control, and he is as patient as a saint. Of course, I turn him over to his cyber girlfriend(s) when I'm in this state--and, frankly, I'm grateful for their standing in. Or lying in.
But not all of us have the gift that, somehow, the Universe has bestowed upon me in the form of a nurturing, loving, patient partner. Therefore, I recommend a fine article, "Brain Fatigue 101" (including that caused by neurodegenerative disease), by Linda J. Dobberstein. I especially like her recommendations for easing that fatigue, many of which involve communing with nature. I find a day in my woods and gardens does much, perhaps more than anything else, to relieve the exhaustion and "apathy" I feel far too frequently.
What we need today is more time spent in nature, even when very sick. I can't think of anything that eases the mind and soul better than that.
I might brag about my accomplishments, but make no mistake about it: I'm using every bit of energy in my body just to get through my bad days. I've had no greater challenge in life than staying positive and productive in the face of chronic disease.
And I know exactly what I need right now: a day in my woods.
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