To my Daily Strength friends.
WARNING: a touch of bitterness and overwhelming fatigue below. Enter with caution.
Didn't sleep AGAIN last night. Not sleeping is weird. Things take on an eerie sense of meaning that is hard to shake off. Especially, when it goes on and on.
I've been having inharmonious conversations with God. I really haven't been able to feel Him much for a long time. Quite sad. Please, no lectures on grace. Not now.
When you're not blazing tired you can focus on blessings. When you ARE blazing tired things tend to get hazy, as in not so clear. There's a lot of emotional numbness. Yet, there's pain. If you don't know what it's like to be numb and yet in pain then you probably aren't blazing tired.
Part of my problem is that thoughts keep creeping in about how I’m not better than last year or the year before. In fact, I think I might be worse. There may be ebbing and flowing through this illness for some people but when the flowing is in flood-like proportions for what seems like an unendurable length of time it's just plain bad news.
Yes, there are those who are worse off than me. Yes, there are degenerative diseases that take a far greater toll. Yes, I GET IT! Dang it, I don’t want to get it. Getting it hurts. Getting it makes me realize this is it. Getting it makes me have to keep going when all I want to do is give up. Getting it makes me want to scream even when there isn’t anything inside of me to scream with.
A lot of the time I feel like I just can't do this. People who say you should never say “can’t” must not know what CHRONIC fatigue feels like. There are times when can’t is possible. An odd use of word play, a bit profound, but true.
Where does the bitterness come from? Too many sleepless nights and sad days struggling to move. Just tears. Even when I’m not crying.
I guess I wouldn't feel so upset if I didn't want to live.
Showing posts with label chronic fatigue. Show all posts
Showing posts with label chronic fatigue. Show all posts
Wednesday, March 17, 2010
Sunday, February 22, 2009
Chronic illness
It's only 12:30 a.m. which is not that late for me, I guess. The sky is a strange color out on the horizon tonight with some deep purple tint to it. Unusual. It's been raining, but the rain has stopped. No stars. Too much cloud coverage directly overhead.
Some days are worse than others, but most nights lean toward pain quite heavily. I'm wondering if it isn't a bit easier though because I don't have to meet expectations from myself or others when it is dark and late into the night. I feel my pain and weariness but there isn't worry of anyone else who might see me so there might a bit of relief in that feeling that isn't present during the day. I'm not sure relief is the best word to describe this, but perhaps it works to a certain degree.
I just saw an episode of House where the patient was a man with chronic pain and he told the doctor it was easier for him (Dr. House) to live with his pain because he didn't have to put on a brave face for a family. Something to think about, but alas, pain is pain.
I just started reading a book about chronic illness and the author said that he thinks "acceptance is poison". I'm trying to find the passage in the book, but I can't in the amount of time that I can focus. My head hurts too much to keep looking. The author interviews five people with illness but so far I've only read about two of them and they have terminal illnesses, which is different than chronic, at least I think so. Terminal is chronic, but chronic isn't necessarily terminal.
He does a good job capturing something sensitive to me in the introduction. This is a lengthy passage, but it's true for me. (Strong in the Broken Places, voices of illness, a chorus of hope, by Richard M. Cohen)
"...With chronic illness, every facet of a once-robust life is overtaken and redefined. From the ability to find and hold jobs to the capacity to build and sustain personal relationships, the facts of a sick person's world change dramatically. The slow slide down carries us, and we lose control.
Still, we go on. We double the effort, for what is the option? Too often, we remain silent. We are a hidden population, invisible except to ourselves and those who love us.
...We have so much at stake and so much to say, but it can take years of battle with our own demons to recognize the power of what we have to offer one another. Nobody will speak for us with the authority we bring to our own stories. Where so many among us find the resolve and the inner strength to rise up and keep going is a mystery to me. That we do serves as pure inspiration."
I wonder if we are only an inspiration to ourselves (meaning our community of the ill) since others don't know what it is there is to be inspired about.
My book sits on the shelf. I pulled it out yesterday and started to scribble a little bit in the margins. I did a bit of research to see what else is out there that would be comparable to what I have written. What I have is fairly unique in the format that I've devised. Yet, my book sits on the shelf. I have chronic fatigue after all. My world is small. I have no network. Most of the books that have been written about CFS are by doctors or by people that have recovered. Makes sense. The rest of us lack the energy to go through the process of trying to get published for the first time, or so it would seem to me. Nevertheless, I'm "pure inspiration". ta da!
carry on.
Some days are worse than others, but most nights lean toward pain quite heavily. I'm wondering if it isn't a bit easier though because I don't have to meet expectations from myself or others when it is dark and late into the night. I feel my pain and weariness but there isn't worry of anyone else who might see me so there might a bit of relief in that feeling that isn't present during the day. I'm not sure relief is the best word to describe this, but perhaps it works to a certain degree.
I just saw an episode of House where the patient was a man with chronic pain and he told the doctor it was easier for him (Dr. House) to live with his pain because he didn't have to put on a brave face for a family. Something to think about, but alas, pain is pain.
I just started reading a book about chronic illness and the author said that he thinks "acceptance is poison". I'm trying to find the passage in the book, but I can't in the amount of time that I can focus. My head hurts too much to keep looking. The author interviews five people with illness but so far I've only read about two of them and they have terminal illnesses, which is different than chronic, at least I think so. Terminal is chronic, but chronic isn't necessarily terminal.
He does a good job capturing something sensitive to me in the introduction. This is a lengthy passage, but it's true for me. (Strong in the Broken Places, voices of illness, a chorus of hope, by Richard M. Cohen)
"...With chronic illness, every facet of a once-robust life is overtaken and redefined. From the ability to find and hold jobs to the capacity to build and sustain personal relationships, the facts of a sick person's world change dramatically. The slow slide down carries us, and we lose control.
Still, we go on. We double the effort, for what is the option? Too often, we remain silent. We are a hidden population, invisible except to ourselves and those who love us.
...We have so much at stake and so much to say, but it can take years of battle with our own demons to recognize the power of what we have to offer one another. Nobody will speak for us with the authority we bring to our own stories. Where so many among us find the resolve and the inner strength to rise up and keep going is a mystery to me. That we do serves as pure inspiration."
I wonder if we are only an inspiration to ourselves (meaning our community of the ill) since others don't know what it is there is to be inspired about.
My book sits on the shelf. I pulled it out yesterday and started to scribble a little bit in the margins. I did a bit of research to see what else is out there that would be comparable to what I have written. What I have is fairly unique in the format that I've devised. Yet, my book sits on the shelf. I have chronic fatigue after all. My world is small. I have no network. Most of the books that have been written about CFS are by doctors or by people that have recovered. Makes sense. The rest of us lack the energy to go through the process of trying to get published for the first time, or so it would seem to me. Nevertheless, I'm "pure inspiration". ta da!
carry on.
Thursday, June 19, 2008
into my chronic fatigue
It hit today. I'm talking about the feeling that creeps over me and lingers with tremendous, painful fatigue. Can't say it's much fun. My legs ache, my head aches, my whole body aches, but I think the most painful is the aching in my heart. When this feeling is really strong it is so very, very hard to hold on to hopeful thoughts. It takes everything I have inside of me to push myself forward when I want to shut down, give up, and turn away from the world. Some days I'm forced to shut down. My body simply won't cooperate with my efforts to keep going. Other times I do keep pushing, but it's a "survival mode" where everything is pulled inside of me and I silently (because noise hurts) put one foot in front of the other and step-by-step feel the moments tick by without my heart living in them.
I can't think too far ahead. I'm not talking days, I'm talking about thinking ahead in terms of hours and even minutes. Man, it hurts. There is a pain that is beyond the physical sensation of discomfort. It is a deep pain that pierces my soul and seems to settle in my chest, inside of my heart, and it weighs heavily upon me forcing me to feel the pain as my chest lifts with every breath. Deep breaths seem to channel the pain more intensely up into my head and they tighten the vice that surrounds my thoughts. Where does it come from? Why is it here inside of me?
The daily challenge of Chronic Fatigue is difficult in itself so when days like this come around it is even more wrenching to my spirit.
I don't know how to meet the expectations of others when it is so hard to push myself through the days. When a day like today comes around my soul cries and I feel the sorrow of not being able to be what I feel like I need to be, to do what I feel I'm expected to do. I have those feelings pretty much every day living with this illness, but when my body and mind are locked into the pain it is a struggle to convince myself that I'm okay. I mean, it's hard to feel worthwhile and significant when I'm not doing what I wish I could be doing for other people.
I try to stay quiet about my pain. I don't think most people can relate. I don't think anyone can really understand unless they are living with a comparable illness. It's interesting how people just expect "the usual" out of other people. It is days like this when I want everyone to stop expecting me to not be sick. It takes too much of me to just get through the moments to have to push through obligations. Nevertheless, I push. Some may argue that it is good to push, but they don't understand my illness. It may be good to try to push through the depression, but physically it is pain upon pain to push.
I need the world to be silent, but the world doesn't stop for my pain. Noise is amplified a hundred times over in my head. I've learned to survive. I've learned to pull myself into a place that I'm not even aware of until I'm through the most painful moments. I'll get through today. When my spirit is lifted away from this brutality I will feel the release and give thanks. It's a curious thing how endurable the everyday kind of pain is when I emerge from these episodes of extraordinary pain. I remember being delivered from this kind of pain before, and I will wait for my reprieve.
carry on.
I can't think too far ahead. I'm not talking days, I'm talking about thinking ahead in terms of hours and even minutes. Man, it hurts. There is a pain that is beyond the physical sensation of discomfort. It is a deep pain that pierces my soul and seems to settle in my chest, inside of my heart, and it weighs heavily upon me forcing me to feel the pain as my chest lifts with every breath. Deep breaths seem to channel the pain more intensely up into my head and they tighten the vice that surrounds my thoughts. Where does it come from? Why is it here inside of me?
The daily challenge of Chronic Fatigue is difficult in itself so when days like this come around it is even more wrenching to my spirit.
I don't know how to meet the expectations of others when it is so hard to push myself through the days. When a day like today comes around my soul cries and I feel the sorrow of not being able to be what I feel like I need to be, to do what I feel I'm expected to do. I have those feelings pretty much every day living with this illness, but when my body and mind are locked into the pain it is a struggle to convince myself that I'm okay. I mean, it's hard to feel worthwhile and significant when I'm not doing what I wish I could be doing for other people.
I try to stay quiet about my pain. I don't think most people can relate. I don't think anyone can really understand unless they are living with a comparable illness. It's interesting how people just expect "the usual" out of other people. It is days like this when I want everyone to stop expecting me to not be sick. It takes too much of me to just get through the moments to have to push through obligations. Nevertheless, I push. Some may argue that it is good to push, but they don't understand my illness. It may be good to try to push through the depression, but physically it is pain upon pain to push.
I need the world to be silent, but the world doesn't stop for my pain. Noise is amplified a hundred times over in my head. I've learned to survive. I've learned to pull myself into a place that I'm not even aware of until I'm through the most painful moments. I'll get through today. When my spirit is lifted away from this brutality I will feel the release and give thanks. It's a curious thing how endurable the everyday kind of pain is when I emerge from these episodes of extraordinary pain. I remember being delivered from this kind of pain before, and I will wait for my reprieve.
carry on.
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