Chronic Illness and Fatigue
I honestly don't know how often I write about it, but it is time to write about it again even if I have written about it often. Fatigue is something I struggle with every day, all day. The past week or so has been pretty lousy when it comes to the energy vs fatigue struggle so I thought it would be a good time to write about it.
"Overwhelming fatigue" is a much more accurate term than simply saying "fatigue". Telling my doctors that I am "fatigued" doesn't even come close to describing this debilitating symptom. Just saying "fatigue" sounds silly... childish... minuscule... not worth mentioning... it seems like something a nap will cure. Even calling it "overwhelming fatigue" doesn't seem to cut it either but it is the best term I know.
I've had mononucleosis three times in my life (thus far) and I have always said I would never wish that fatigue on anyone... not even on my worst enemy. This overwhelming fatigue that I struggle with each and every moment of every day is far worse than that fatigue I experienced while recovering from mononucleosis. And that is saying something because the first time I had mononucleosis, I spent weeks in the hospital... in isolation... and received my Last Rites by the Chaplain in the middle of the night.
The overwhelming fatigue I experience everyday due to Systemic Mastocytosis is far, far more intense, debilitating and smothering. This fatigue smothers any spark of life even in the deepest recesses of my soul... my being. This fatigue is a cold, empty darkness that feels draped over me and tied in place with thick heavy rope... with heavy weights tied to the ropes. This fatigue is an overwhelming burden which defies any attempt at effectively describing it with mere words. It is overpowering... it is overwhelming... it is all-consuming... it is the black hole of life.
Some days, if I have taken extra medications and rested up for a few days (which means nothing but sleep for days), I experience fairly good days and I have some energy. These are the days people will see me outside the house... away from the confines of our home. Most days are a struggle though. At some point each day, however, whether it be a good day or rather bad day, I simply run out of steam.
When I reach that point, my legs get so heavy that I have difficulty lifting them. The thought of doing anything... even walking from one room to the next... can be overwhelming... just the thought. The thought, alone, is so overwhelming it can move me to tears. This is from someone who, when he was healthy, had so much boundless energy it drove everyone around him crazy each and every day! Nobody could ever get any rest around me! No activity or sport was too strenuous. No challenge was too great. That person I once was feels like it was a person in a faint dream... a character in an action movie about someone else... it can't be this same body I struggle with each day!
As my overwhelming fatigue worsens, my bone and joint pain worsens too. Even when doing absolutely nothing... just resting on the couch... I feel as though I was hit by a train. Everything hurts. Just a fingertip touching my shin is enough to bring tears to my eyes... but, even though my bones and joints are screaming, my muscles could use some sort of massage... a light massage bringing additional bone pain and yet needed relief at the same time.
A little more than a decade ago, I realized that a home with multiple floors was something I could not handle any longer. My home at the time had a lone bathroom on the second floor. That was often a problem. Overwhelming fatigue, chronic pain, chronic illness and stairs... this combination just does not work.
The problems with stairs started with my spinal injuries. As the Systemic Mastocytosis progressed and took control of my body, finding the energy to get up and down stairs whenever necessary became a more consistent problem. On rather lousy days, I would take one step at a time... on my butt... lift with my arms... butt up to the next step... one step at a time. On really bad days, the stairs were out of the question. And this was all just so I could use the bathroom!
I then moved into a single level apartment and that made accessing a bathroom much easier. I was still plagued by overwhelming fatigue though. I would spend days on the couch. I hated the bed... I don't know why... but, I hated spending this down time in bed. I still hate it and prefer the couch.
This overwhelming fatigue is severe enough to completely mask my personality. I become expressionless. I look completely disengaged, disinterested. I have no sense of humor. Emotion requires energy I do not possess. Even the act of thinking enough to talk requires more energy than I have to expend when overwhelming fatigue strikes.
As the weather gets warmer, my fatigue worsens. My health does exceptionally poorly in warmer weather so this problem with overwhelming fatigue comes as no surprise to me once Memorial Day has passed and we are in the summer season.
I've been struggling with overwhelming fatigue lately because we have been busy with some major family events both in town and out of town. Each of these events seemed to steal life-affirming energy from me for weeks. Compounding this extra fatigue due to too much activity is fact that as the weather gets warmer, this situation gets significantly worse. Simply put, this is a fact... as the weather gets warmer, my health does indeed get significantly worse.
For the past week, I have had very little energy and all I want to do is close my eyes. Oh yeah... my eyes... as I get more fatigued, my eyesight gets worse. Reading is difficult when I am tired... it is next to impossible when I am fatigued... trying to read when I am overwhelmingly fatigued is a useless cause. I can't focus on a big television nevermind on a tiny word on a page (usually my Kindle Fire HDX 8.9"). During these times, I listen to television shows and movies more so than watch them.
If I cook a meal, I use up some of my precious limited supply of energy. If I shower, I use up energy. If I do a few chores around the house, I use up energy. If I make a quick trip to the grocery store, I use up energy. If I travel, energy is sucked out of me for months to come.
Travel is one of the most grueling and energy-sucking things anyone can do. Trust me on this. Even the most relaxing vacation is grueling if it required any amount of physical travel. Even traveling to see a doctor is grueling and requires far too much down time to recover. (I have gotten to the point where I truly despise using up any of my precious energy just to visit a doctor.) The more energy an activity requires, the longer it takes me to recover. There is a price to pay for any amount of energy I decide to expend.
I don't know if I should say fortunately or unfortunately but... I truly want to do things... I want to accomplish something... I want to create something... I want to feel productive in some way... so I fight closing my eyes. On the fortunate side, my heart and soul are willing but, unfortunately, my body seems to shut down all but the faintest hope that after some sleep I will feel a bit better. How much can one person sleep?
I often feel as though I only awaken to shower, eat, use the bathroom and clean some clothes. On many days, I get up, shower... and then I am ready to get off my feet. By mid-morning I am often wondering if I will have enough energy left to put together a lunch for myself. Then I sleep all afternoon.
As darkness falls upon each day and the temperatures cool off a bit, I find a little more energy. Heat is my kryptonite. For me, the sun seems like an insanely hot ball of fire from hell. The cooler nighttime temperatures allow me to breath more easily. I can tell you, however, that even though it is cooler and easier to breath, my eyes still want to close... I am struggling to keep my eyes open as I type this blog post.
So, what causes a chronically ill body to be so fatigued all the time? Who knows for sure?
I have always assumed that my body is so exhausted all the time because my body is in this perpetual, large-scale war on a cellular level. Speaking very generally again, I have cells in my body which are normally defensive cells but now they are in a perpetual state of offense. These cells are now in this aggressive offensive state fighting against my own body thrusting my entire body into a defensive mode. This microscopic yet epically huge battle is being waged 24 hours a day, systemically, throughout my entire body... and, believe me, it wears me down even when I do nothing.
Some would think that if I am going to be exhausted no matter what I do, I'd might as well
just push myself and do whatever I desire. "Just push through the fatigue." Well, it doesn't work that way.
When I do too much, putting much more stress and fatigue on my body, my health gets significantly worse... very suddenly... and in a very dangerous way. As a result, I learned long ago that I need to manage my energy constantly. Consequently, in order to survive, I have come up with my own "energy management" program.
Everyday is about energy management. If I plan to do one thing today, I must save energy by not doing something else and then divert that energy toward the one thing I planned to do. It is a constant give and take. There is only so much energy to go around allowing me to survive until I run out of steam.
"Energy Management." This is just one of my tools allowing me to survive... and sometimes even live... each and every moment of every day. "Energy Management."
Anyway, the next time you hear me say "wow... I'm tired", I really mean that I am exhausted... I really mean I need to get off my feet before I fall over... I really mean my legs are now made of jello and breathing is using up too much energy... I really mean it is requiring too much energy just to effectively communicate... I really mean, I'm bordering on collapsing... I really mean, I am this close (think Maxwell Smart as I hold my index finger next to my thumb) to picking out an eternal resting place so I can lie down and rest in peace.
"I'm tired." ...so, goodnight...
For further reading about chronic illness and fatigue, please read "The Gift of an Extra Spoon". In that blog post, I also talk about my fatigue but I include a link to a very powerful article written by another patient suffering from chronic illness. In her article, "The Spoon Theory", she explains her debilitating fatigue by using spoons.
It is well worth the few minutes out of your day to read her article. She does an excellent job at explaining how this overwhelming fatigue affects us. It really is quite the simple yet very effective way to explain chronic illness and fatigue. The more people who understand how fatigue smothers the life out of those of us struggling with chronic illness, the more people there will be who won't give up on us because we had to cancel plans yet again so we could simply "just take a nap".
"Understanding"... one of the most powerful tools a chronically ill person needs to survive. Please, whether you have someone in your life today who is struggling with chronic illness or not, take the little bit of time and effort necessary to learn about this perpetual struggle between energy and fatigue. At some point, you will know someone struggling with chronic illness and, trust me, you will need to understand.
"Overwhelming fatigue" is a much more accurate term than simply saying "fatigue". Telling my doctors that I am "fatigued" doesn't even come close to describing this debilitating symptom. Just saying "fatigue" sounds silly... childish... minuscule... not worth mentioning... it seems like something a nap will cure. Even calling it "overwhelming fatigue" doesn't seem to cut it either but it is the best term I know.
I've had mononucleosis three times in my life (thus far) and I have always said I would never wish that fatigue on anyone... not even on my worst enemy. This overwhelming fatigue that I struggle with each and every moment of every day is far worse than that fatigue I experienced while recovering from mononucleosis. And that is saying something because the first time I had mononucleosis, I spent weeks in the hospital... in isolation... and received my Last Rites by the Chaplain in the middle of the night.
The overwhelming fatigue I experience everyday due to Systemic Mastocytosis is far, far more intense, debilitating and smothering. This fatigue smothers any spark of life even in the deepest recesses of my soul... my being. This fatigue is a cold, empty darkness that feels draped over me and tied in place with thick heavy rope... with heavy weights tied to the ropes. This fatigue is an overwhelming burden which defies any attempt at effectively describing it with mere words. It is overpowering... it is overwhelming... it is all-consuming... it is the black hole of life.
Some days, if I have taken extra medications and rested up for a few days (which means nothing but sleep for days), I experience fairly good days and I have some energy. These are the days people will see me outside the house... away from the confines of our home. Most days are a struggle though. At some point each day, however, whether it be a good day or rather bad day, I simply run out of steam.
When I reach that point, my legs get so heavy that I have difficulty lifting them. The thought of doing anything... even walking from one room to the next... can be overwhelming... just the thought. The thought, alone, is so overwhelming it can move me to tears. This is from someone who, when he was healthy, had so much boundless energy it drove everyone around him crazy each and every day! Nobody could ever get any rest around me! No activity or sport was too strenuous. No challenge was too great. That person I once was feels like it was a person in a faint dream... a character in an action movie about someone else... it can't be this same body I struggle with each day!
As my overwhelming fatigue worsens, my bone and joint pain worsens too. Even when doing absolutely nothing... just resting on the couch... I feel as though I was hit by a train. Everything hurts. Just a fingertip touching my shin is enough to bring tears to my eyes... but, even though my bones and joints are screaming, my muscles could use some sort of massage... a light massage bringing additional bone pain and yet needed relief at the same time.
A little more than a decade ago, I realized that a home with multiple floors was something I could not handle any longer. My home at the time had a lone bathroom on the second floor. That was often a problem. Overwhelming fatigue, chronic pain, chronic illness and stairs... this combination just does not work.
The problems with stairs started with my spinal injuries. As the Systemic Mastocytosis progressed and took control of my body, finding the energy to get up and down stairs whenever necessary became a more consistent problem. On rather lousy days, I would take one step at a time... on my butt... lift with my arms... butt up to the next step... one step at a time. On really bad days, the stairs were out of the question. And this was all just so I could use the bathroom!
I then moved into a single level apartment and that made accessing a bathroom much easier. I was still plagued by overwhelming fatigue though. I would spend days on the couch. I hated the bed... I don't know why... but, I hated spending this down time in bed. I still hate it and prefer the couch.
This overwhelming fatigue is severe enough to completely mask my personality. I become expressionless. I look completely disengaged, disinterested. I have no sense of humor. Emotion requires energy I do not possess. Even the act of thinking enough to talk requires more energy than I have to expend when overwhelming fatigue strikes.
As the weather gets warmer, my fatigue worsens. My health does exceptionally poorly in warmer weather so this problem with overwhelming fatigue comes as no surprise to me once Memorial Day has passed and we are in the summer season.
I've been struggling with overwhelming fatigue lately because we have been busy with some major family events both in town and out of town. Each of these events seemed to steal life-affirming energy from me for weeks. Compounding this extra fatigue due to too much activity is fact that as the weather gets warmer, this situation gets significantly worse. Simply put, this is a fact... as the weather gets warmer, my health does indeed get significantly worse.
For the past week, I have had very little energy and all I want to do is close my eyes. Oh yeah... my eyes... as I get more fatigued, my eyesight gets worse. Reading is difficult when I am tired... it is next to impossible when I am fatigued... trying to read when I am overwhelmingly fatigued is a useless cause. I can't focus on a big television nevermind on a tiny word on a page (usually my Kindle Fire HDX 8.9"). During these times, I listen to television shows and movies more so than watch them.
If I cook a meal, I use up some of my precious limited supply of energy. If I shower, I use up energy. If I do a few chores around the house, I use up energy. If I make a quick trip to the grocery store, I use up energy. If I travel, energy is sucked out of me for months to come.
Travel is one of the most grueling and energy-sucking things anyone can do. Trust me on this. Even the most relaxing vacation is grueling if it required any amount of physical travel. Even traveling to see a doctor is grueling and requires far too much down time to recover. (I have gotten to the point where I truly despise using up any of my precious energy just to visit a doctor.) The more energy an activity requires, the longer it takes me to recover. There is a price to pay for any amount of energy I decide to expend.
I don't know if I should say fortunately or unfortunately but... I truly want to do things... I want to accomplish something... I want to create something... I want to feel productive in some way... so I fight closing my eyes. On the fortunate side, my heart and soul are willing but, unfortunately, my body seems to shut down all but the faintest hope that after some sleep I will feel a bit better. How much can one person sleep?
I often feel as though I only awaken to shower, eat, use the bathroom and clean some clothes. On many days, I get up, shower... and then I am ready to get off my feet. By mid-morning I am often wondering if I will have enough energy left to put together a lunch for myself. Then I sleep all afternoon.
 |
| My kryptonite... an insanely hot ball of fire from hell... shown here with a solar flare caused by ice crystals in the high cirrus clouds. |
So, what causes a chronically ill body to be so fatigued all the time? Who knows for sure?
I have always assumed that my body is so exhausted all the time because my body is in this perpetual, large-scale war on a cellular level. Speaking very generally again, I have cells in my body which are normally defensive cells but now they are in a perpetual state of offense. These cells are now in this aggressive offensive state fighting against my own body thrusting my entire body into a defensive mode. This microscopic yet epically huge battle is being waged 24 hours a day, systemically, throughout my entire body... and, believe me, it wears me down even when I do nothing.
Some would think that if I am going to be exhausted no matter what I do, I'd might as well
just push myself and do whatever I desire. "Just push through the fatigue." Well, it doesn't work that way.
When I do too much, putting much more stress and fatigue on my body, my health gets significantly worse... very suddenly... and in a very dangerous way. As a result, I learned long ago that I need to manage my energy constantly. Consequently, in order to survive, I have come up with my own "energy management" program.
Everyday is about energy management. If I plan to do one thing today, I must save energy by not doing something else and then divert that energy toward the one thing I planned to do. It is a constant give and take. There is only so much energy to go around allowing me to survive until I run out of steam.
"Energy Management." This is just one of my tools allowing me to survive... and sometimes even live... each and every moment of every day. "Energy Management."
Anyway, the next time you hear me say "wow... I'm tired", I really mean that I am exhausted... I really mean I need to get off my feet before I fall over... I really mean my legs are now made of jello and breathing is using up too much energy... I really mean it is requiring too much energy just to effectively communicate... I really mean, I'm bordering on collapsing... I really mean, I am this close (think Maxwell Smart as I hold my index finger next to my thumb) to picking out an eternal resting place so I can lie down and rest in peace.
"I'm tired." ...so, goodnight...
For further reading about chronic illness and fatigue, please read "The Gift of an Extra Spoon". In that blog post, I also talk about my fatigue but I include a link to a very powerful article written by another patient suffering from chronic illness. In her article, "The Spoon Theory", she explains her debilitating fatigue by using spoons.
It is well worth the few minutes out of your day to read her article. She does an excellent job at explaining how this overwhelming fatigue affects us. It really is quite the simple yet very effective way to explain chronic illness and fatigue. The more people who understand how fatigue smothers the life out of those of us struggling with chronic illness, the more people there will be who won't give up on us because we had to cancel plans yet again so we could simply "just take a nap".
"Understanding"... one of the most powerful tools a chronically ill person needs to survive. Please, whether you have someone in your life today who is struggling with chronic illness or not, take the little bit of time and effort necessary to learn about this perpetual struggle between energy and fatigue. At some point, you will know someone struggling with chronic illness and, trust me, you will need to understand.
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