Life Stories

Sunday, May 16, 2010

I read a book a while ago where the author talked about how as we experience different things in our lives its like we are writing stories. Not writing with pen and paper, but figuratively writing stories that tell about who we are.

One thing I found particularly interesting was when the author talked about how heaven would look and feel to someone who had been through a lot of hardship and adversity. He thought those who had endured a hard life would see heaven differently than those who had lived an easier life. He also wondered about what kind of story he’d have to tell about his life when he got to heaven. He wanted it to be a good story – something meaningful.

I’ve been thinking about what makes a good life story. Yesterday at a church meeting a young man who is graduating was asked to bear his testimony. He was on the track team with my daughter and he had done really well this year jumping. I leaned over and told my daughter that he should tell his story about the district track meet. She said that would be too hard since he didn’t qualify for state and he had done winter track and worked really hard and everything. I thought that sounded like a really good story. I like interesting stories. I like to know what it is that helps people endure their trials. I wanted to know what he was thinking. He didn’t talk about track.

This afternoon I was thinking about how there are parts of our stories that we feel so strongly about that we don’t have words for them. Maybe that’s where this young man was at – that stage where our emotions are pretty raw and we are forming words in our minds but we’re not ready to let them go. We’re not ready because there’s still too much emotion. Some times it is just for a short while that we have those kinds of strong emotions and some times that feeling lasts for a very long time. Maybe that’s why some of us have such a hard time bearing our testimony - we’re trying to put words to something that is a strong emotion.

Then I was wondering about the stories I’ve read about people that have died and come back to life – the near death experiences that people share. They talk about seeing a bright light and an indescribable feeling of joy and love. So I decided that maybe we won’t need words to tell our stories when we get to heaven. Maybe we’ll have the kind of strong emotion that we don’t have words for.

If we were all telling stories about our lives when we’re in heaven it makes sense that we might not need words. After all, we all speak different languages and have different kinds of beliefs and ideas because of our experiences on earth. The one thing we would all have in common is our feelings and emotions.

Maybe we would know and feel the stories that other people were telling because of how we felt, because of what we know from our own experience. We wouldn’t need words because we would know and understand a story by virtue of its feelings. We knew those feelings on earth and we may feel them even more profoundly in heaven.

I’m thinking we’ll be able to feel each others stories when we get to heaven. I may not know the entirety of someone's hardship if I hadn't experienced something as painful, but I would know pain and I would know the emotion. It would just be a deeper level than what I know and maybe I would feel it. Maybe I could feel what they feel because we would both be safe enough to feel it together.

We have a hard time finding words when we feel an overwhelming sense of grief and pain, or an abundance of joy. Both feelings could come from experiencing the light of heaven after enduring a hard life.

I wonder… If we didn’t know what adversity and hardship was like would we have lots of words to tell our stories? I don’t know if all those words would make a very interesting story if there wasn’t a depth of emotion to carry them. I think the most interesting stories to listen to in heaven would be filled with endurance and persistence. Just like the kinds of stories I appreciate right now.

The stories we are creating in our lives are the stories that will be most meaningful when they can be felt by others. It makes sense to me that heaven would be perceived as a brighter and more joyful place when we realize what it is that we have overcome to be there.

When I think about what young kids that are graduating are experiencing right now I understand that they are making decisions that will have a lot to do with how their stories are written. They are deciding whether or not to go to college, how to pay for college, where and how to get a job, whether or not to join the military, go on a mission, whom to date and whether or not to get married, and basically how to take those next steps into their personal stories.

Stories are filled with lots of disappointments and trials. These young people can expect all kinds of experiences to pop up in their stories. They may trust someone who betrays them or fall in love with someone who turns out to be a vampire. Whether it is vampires, wizards, or superheroes there are parts of different stories that resonate with us and touch our hearts. What elements do these popular stories have that stirs our emotions? What do we learn about ourselves and our hearts when we feel strongly about something?

I had an experience today where I saw the difference between two hearts. In the same situation I saw one person’s heart soften and another person didn’t appear to feel anything from what I could see. In my mind I saw the difference between one person who was touched by an experience and another who looked like he was closing himself off to feeling part of his own story.

Don’t you think our hearts need to be open in order to learn from our challenges and trials? The strong feelings that touch our hearts are what make our stories interesting. They are what we have in common with one another. They are the feelings we share when we don’t have the words to express ourselves.

More importantly, they are what help us to feel the power of the Atonement in our hearts. If someone is all about sunshine, lollipops and rainbows then I’m not particularly interested in hearing their story. I never really liked happy endings anyway. To me those endings were just part of a story, but not the whole story. Life doesn’t keep going with endless happiness where everything turns out just the way everyone wants it to over and over.

Feeling discouragement, disappointment, hopelessness, helplessness, sorrow, pain and grief are part of our life story. Our stories also need hope. They need joy. They need goodness and light. Above all, they need truth. All of these feelings generate strong emotions. They are all part of our life story. They are all part of the Atonement.

Ultimately, God is the author of our stories, but we choose how much of the Atonement we will use in our lives. We choose the elements in our stories that touch our hearts. It will be interesting to understand how it feels to share our stories with one another without words. It will be interesting to feel what heaven is like after all we’ve been through.

Appointment

Appointment

So, the nurse practitioner that the compounding pharmacist recommended actually e-mailed me back. Miracle? I don't know. She said she was familiar with CFS but not an expert, but she is an expert with adrenal fatigue and hormones. I'll take it.

***

I called to make an appointment and guess what? They are only in the office on Mondays, Wednesdays, and Thursdays. Today is Friday. Hello! Why don't these people have real jobs? (just kidding)

***

I haven't been to a doctor for my chronic fatigue in years. Seriously. I just pretty much have given up on anyone's ability to help me. I know that sounds weak-minded perhaps. I went through so many years of trying EVERYTHING I could find that I just sort of gave up and carried on the best I could.

***

Well, I think my peri-menopause changed that. I think it whipped up my CFS symptoms. One or the other or both or whatever, I don't know. I just know that I have passed through a lot of storms and believed that this was my life, the end. I feel strongly that I must do something to try to help myself. Anything, really.

***

It's been five weeks or so that I haven't "slept". I sleep, but not normal or even semi-normal. It's affecting everything. Of course, physically, but also emotionally and spiritually. I've had droughts of sleep before, but this is harder to push through emotionally. I think because of all of the droughts the reservoir is dry, so this period of time is especially critical.

***

Oh, man. I don't want to have to go through 11 years of medical history. I don't have the mental energy to go through everything. I really, really, really don't like going to the doctor. Really.

***

Carry on.

a poem

a poem from 8-18-09 (after my walk along the canal bank)


The days are dark yet the sun is shining
waiting for a breath of life
three white doves flew up before I reached them
i shaded my eyes and watched them fly
what do I know from their flight?
Oh, how I wish they could have released me from my dark of night.

***

A tiny blue flower in my path
amidst the weeds it blossomed
and then the realization that the blueness in its delicacy
was also a weed
I saw the reflection of yellow in the water
before I looked up to see the sunflower on the canal bank
also a weed, I smiled.

***

There is beauty inside of my heartache
just like the tiny pink petals of a morning glory weed
twisting around a plant
just like the purple flush of weeds overtaking a field
and the yellow sprig of color on the milky weeds
in the flower bed

***

I can see the trees and mountains behind them
I can touch the soft white underside of the green
leaf of an ash tree
I can rub my fingers against the softness of a rose petal
the tiny red flowers on the ground cover catch my eye.

***

I just can't feel the beauty
I sense it
I'm grateful for it
closing my eyes I can try to hold on to it
why won't God let me feel it?
He's in charge of beauty.
The heaviness hurts
even with beauty inside.

My virtual friends at DS understand.

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.

Chapter 1 - ILLNESS, Section 3

~~~~~~~~~~Strength~~~~~~~~~~

Sometimes I feel like people are judging me negatively because they can’t see my illness and don’t understand why I’m not doing more. I know there are people who believe that if I just did one thing or another I wouldn’t be sick or feel depressed any more. It’s a hard thing to deal with sometimes when certain people think they know everything about me and then proceed to tell me about my own experience. In some ways it reminds me of the story of Job in the Old Testament.

After Job lost everything his friends came and gave him all kinds of advice about what he needed to do to improve his situation. They told him that his problems would vanish if he would just repent and look to God. At one point Job responds to his friends by saying, “But I have understanding as well as you; I am not inferior to you: yea, who knoweth not such things as these?” (Job 12:3).

There may be times when we are condemned by others who don’t understand our lives; however, we know more than other people may realize because of what we have been through. We have learned valuable lessons from our illness that we could not have learned in any other way. Hopefully we’ve met an understanding person along the way and our spirits have been able to rest for a moment. From that experience we know the value of a kind word and the need to be an understanding person for someone else.

What do we know because we’ve been sick that we could not possibly have known otherwise? There are important truths that we prize because they have come at a cost. When chronic illness stops the main flow of our lives we think about the meaning of what we are going through, and of what the people around us are taking for granted.



As soon as man does not take his existence for granted, but beholds it as something unfathomably mysterious, thought begins.
Albert Schweitzer



We are strong because we’ve learned to be more sensitive to our own feelings as well as the feelings of others who are suffering. We have empathy for those who are dealing with sorrow, pain, and grief. We know that endurance isn’t just a word to describe someone who keeps going in the face of adversity, endurance is everyday life.

We’ve learned that what may appear to be a common occurrence to someone else is a small miracle to us because our pain has given us the perspective to see beyond the ordinary. We have a relationship with hope that grants our survival.

What if the depth of our depression was the measurement for the extent of joy we could feel? We know what it feels like to have a long sought after ray of light pierce the darkness and bring us hope. We have learned the power of a moment in darkness, but more powerful than darkness is a moment of joy.

Our illnesses have taught us about humility when our physical strength has been depleted. We aren’t as self-sufficient as we’d like to be and it takes faith to find the strength we need to carry on.

The words that carry weakness to our minds are deceiving, but our hearts know strength. I know there are times when it feels like our hearts are failing us, but that’s when we diligently search our souls to call upon our memories of hope. We’ve made it through before and somehow we find the strength we need to step into our own personal stories.




“Affliction comes to us all, not to make us sad, but sober; not to make us sorry but wise. It is trial that proves one thing weak and another strong. A cobweb is as good as the mightiest cable when there is no strain upon it.”
Henry Ward Beecher




We are strong because our illness necessitates our being strong. When I was a kid my grandpa would sometimes take me to the sales yard with him. The slightest nod of the head, scratch on the arm, or pointing at something interesting could have placed a bid on a sheep, pig, or cow. The auctioneer probably would have overlooked a squirmy child, but that isn’t what my grandpa led me to believe. I was afraid to move a muscle and sat as still as possible because I believed it was absolutely necessary. Living with chronic illness gives us strength simply because it is necessary.

We are sensitive to kindness because we know what it feels like to be misunderstood. We are grateful for simple joy because we know darkness. There are some of us who have a personally meaningful relationship with God because we know mind-numbing pain. We are strong even though people looking into our lives may see us as weak.



Nothing has more strength than dire necessity.
Euripides




*Thought question*

• How has your personal experience with chronic illness given you strength?



~~~~~~~~~~Chapter Summary~~~~~~~~~~

When I was growing up my family would go to Langdon Lake the first weekend of every August to celebrate my dad’s birthday. My sister and I would catch tadpoles in a paper cup and take them home, put them in a fishbowl, and wait for them to turn into frogs. They always died. We flushed them down the toilet.

The next August we would be back at the lake catching tadpoles in a paper cup. We’d take them home, put them in a fishbowl and wait for them to turn into frogs. You could say we were chronic idiots for thinking those tadpoles were going to morph into frogs before our eyes, but I think we were chronically hopeful.

That’s what we do with chronic illness, isn’t it? We hope for each day to be better than the one before and we keep pushing through even when it feels like the things we hope for have been flushed down the toilet.

When illness comes into our lives unexpectedly we have to find the strength to keep moving through each day. The challenges that come with the chronic part of our illness can be especially trying because we have to deal with them again and again. We have similar experiences with our illnesses, but the main thing we have in common is our hope.

The way we perceive our illness influences the way we cope with our situation in life. While we are trying to cope the best way we can there will be instances when we feel like we have to explain what it is we are going through, and that is a difficult task. We will most likely have to deal with misunderstandings, but that doesn’t mean our stories are not significant.

The depression that accompanies chronic illness is a lesson in grief. We may feel defeated with failed attempts at hoping to be healed, but we are not alone in our sorrow. We can feel relief for a moment when we know that someone else understands how we are feeling. Day by day we keep going and there is meaning in our lives while we are in the midst of trying to feel better.

We are strong because we’ve lived with adversity and have learned certain truths from our experiences. We understand more than we otherwise would if we had not become ill. We know about pain and joy, grief and hope, sorrow and miracles. We have learned about ourselves, about the meaning of life, and we have done so with humility. Our hearts are strong because they know affliction and have had daily exercise in climbing up and beyond our pain.




The apple cannot be stuck back on the Tree of Knowledge; once we begin to see, we are doomed and challenged to seek the strength to see more, not less.
Arthur Miller





*Thought questions from chapter about Illness*

Section 1: The chronic part of illness

• What are some of the most important lessons your fatigue has taught you?
• When do your symptoms most greatly affect your feelings of hope?
o How do those feelings change from one day to the next?
• What can you say to others that might help them understand what it feels like to have an illness that is chronic?


Section 2: Depression

• What do you think people who feel depressed have in common?
• How do your feelings about your illness affect your level of depression?
• What are some of your coping strategies that help you feel a little bit better?


Section 3: Strength

• How has your personal experience with chronic illness given you strength?

Chapter 1 - ILLNESS, Section 2

~~~~~~~~~~Depression~~~~~~~~~~

When I was growing up and people would come over to our house my dad would tell them, “Take off your coat and stay a while.” Sometimes I feel like discouragement has taken its coat off for a nice long visit. I don’t believe I’m alone in my experience with depression it seems to be pretty common for people living with chronic illness.


Depression comes from the grief of not being able to do the things that were once commonplace. When we don’t have enough energy to do all of the things that helped us feel accomplished in the past we struggle with feelings of self-worth. Depression comes from guilt for not doing more, shame for not being more, fear of wondering if body and mind will ever get better, and the sense of hopelessness when treatments fail.

Depression messes with our perception of the world around us and of how we fit into that world. It throws questions in our faces that don’t have reasonable answers. I sometimes wonder why my mind isn’t stronger so that I can convince my body to do things it refuses to do, or exactly what it is I am supposed to do with an illness that saps all the energy out of me. These are despairing thoughts that come to me when I’m the most tired and worn down from chronic discomfort.

Every person with chronic illness is most likely going to deal with his or her situation differently than another and some are going to have more depression than others. Some people are more introspective, some tolerate pain better than others, some have a stronger support system of family and friends, and some are simply more vulnerable to depression biologically.

Everyone is unique, and something that works for one person may not provide the same relief for another. Some people are able to find medication that works well for them, others have to search further to find the help they need, and still others have a very long road to travel down with many obstacles to overcome on their journey toward recovery. We all have our own stories and each one is significant and meaningful because of the experience it presents.

I have days that are better than others, but there are days when the storm hits and the sun can’t get through. There are people who don’t understand this feeling and believe that someone who is depressed isn’t grateful for life. Yet, I do know that gratitude is strong medicine because it keeps me hanging on when I feel battered and bruised by the darkness of depression. One of the things that people on the outside of depression may not understand is that on the inside of depression there is disparity between knowing we have extraordinary blessings in our lives and still finding it hard to be happy all of the time.



When I tell any truth, it is not for the sake of convincing those who do not know it, but for the sake of defending those that do.
William Blake



We all deal with illness differently and have different perspectives about how it is affecting our lives. Some people are going to suffer from depression in deeper levels than others. Each of us has different things that contribute to how we feel about our illness and how we deal with our depression, but we have the same feelings in terms of pain and sadness.


The purpose of this book is to offer a sense of relief from knowing that you are not alone in your experience with chronic illness and depression. I am writing to individuals with chronic illness who have symptoms that are challenging to deal with and to those who have feelings of grief, sorrow, pain, and despair. We all need to understand that while we are working through feelings of depression there is hope, we are not alone, our feelings are significant, and our lives have meaning in the midst of our illness. To feel a sense of purpose and know that our lives matter is such a hard thing to grasp when depression is upon us.



“’Your soul is like your shadow,’ she said. ‘Sometimes it just wanders off like a butterfly and that is when you are sad and that is when you get sick, and if it comes back to you, that is when you are happy and you are well again.’”
Anne Fadiman, The Spirit Catches You and You Fall Down, A Hmong Child, Her American Doctors, and the Collision of Two Cultures




***Summary***

Some of us have to deal with depression swirling around our illness and zooming in when we feel the most vulnerable from our ongoing symptoms. Other people may not understand our feelings, but we are not alone when we experience pain and sadness.

It’s very hard to find the right words to explain how we feel sometimes, but I wonder if there isn’t a reason for our not being able to precisely explain everything we are going through. The process of trying to describe how we feel and make ourselves understood may help us better understand our selves. I’m not saying this process is pain free because it isn’t. Learning to deal with feeling misunderstood is part of our life when we are living with a concealed illness. People can’t see why we are sick and their expectations don’t always match our ability to perform. It's just downright frustrating sometimes.

Our individual perceptions are unique and complex. When chronic illness unexpectedly enters our lives we have to take a step back and learn how to deal with our specific situations. We are each going to find different ways of coping and different ways of trying to fit the pieces of our personality into the world of illness.



All truly wise thoughts have been thought already thousands of times, but to make them truly ours, we must think them over again honestly, till they take root in our personal experience.
Johann Wolfgang van Goethe




*Thought questions*

• What do you think people who feel depressed have in common?

• How do your feelings about your illness affect your level of depression?

• What are some of your coping strategies that help you feel a little bit
better?

Chapter 1 - ILLNESS, Section 1

ILLNESS

When I was a kid we had an old swing set out in our backyard with a ladder in the middle and a swing on one side. I would climb up and sit on the side of the bar where there wasn’t a swing and hang upside down. After a while I would pull myself up and start spinning around the bar with one leg. One day I was spinning around and around when my hands slipped and I spun in the air landing face down on the ground. That wasn’t the place I expected to be when I started to spin.

I didn’t expect to be sitting on a recliner in November, 1998, with a kind of feeling that I had never felt before. A few days of sickness had turned into weeks and I wasn’t getting any better. In the past when I would get sick with the flu I’d hit a peak of misery and then begin to feel better with time, but this wasn’t the flu and I wasn’t getting any better. I kept trying to convince myself that one day I would wake up and this sickness would be gone as mysteriously as it had come. I continued to drag myself through the days and weeks the best I could but I felt like I had been hit by a train again and again.

One night I was searching through health books in the public library hoping to find something related to what I was experiencing. I came across a list of symptoms that stopped me from skimming through the pages and I started checking off my symptoms. I had to sit still for a minute with the realization that I had found what I didn’t know I was looking for. While I swallowed down the lump in my throat, blinked away the tears in my eyes, let out the breath I was holding in, I thought to myself, “Oh, no. I don’t want this.”

My heartbeat climbed up out of my stomach and thumped in my chest while my mind held on to a certainty that I wanted it to let go of. I wasn’t thinking that maybe I had what was being described but rather I felt an unusual sensation moving through me that touched deep in my soul telling me I had this sickness called Chronic Fatigue Syndrome. It was like a premonition from my spirit telling me that my life was going to be different from what I had expected.

Looking from a short distance away and from slightly above I can see a dark-haired woman sitting at a table in an old, lavender winter coat with books stacked all around her. She’s tired and hurting and I can see her close her eyes to the tears welling up in them. So many years later I find myself wondering what I could have told her on that night that might have helped her carry on through the pain that would soon be her constant companion.



“For a long time it had seemed to me that life was about to begin – real life. But there was always some obstacle in the way, something to be got through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life.” Fr. Alfred D’Souza



There are all kinds of health issues, both physical and mental, and mine may have a different name than another, but I think people living with a chronic illness have a lot in common. We all have bodies that aren’t perfectly healthy and we most likely didn’t expect an illness to creep into our lives and not go away, yet that doesn’t mean we don’t have hope. I believe we have a powerful, intimate, even selfish relationship with hope.

I’ve often wondered if other people were going through what I was experiencing and feeling what I was feeling. It seems like whenever I’ve read something where the author is able to find the words to explain what I have inside of me I have felt a sense of relief. Of course I don’t want other people to feel the pain I’ve felt, but at the same time I appreciate a glimpse into another's life so I can see that how I feel is real and I’m not alone. It helps me feel a little bit better knowing other people understand how I feel.

The main reason I wanted to write this book is to help other people going through trials understand that they are not alone. Even though this book is about my personal experience living with chronic illness I think other people will be able to relate to what I’m feeling and perhaps my words can bring comfort to them. Those of us who are living with chronic illness understand that fatigue isn’t just about feeling tired. It’s about living with grief, faith, gratitude, sorrow, joy, both physical and emotional pain, and hope.

Pain is a persistent tutor whose presence has taught me to think beyond the ordinary and obvious things in life. I think my illness has given me a different set of eyes to see what’s going on around me. I see strength where others might see weakness and I see hope in the midst of pain. This is my story but I feel like other people are going through some of what I’ve been through and we have a lot in common. I hope my thoughts and feelings will help others who are living with chronic illness find a sense of relief. We all need to be encouraged and remember a few things I hope to present in this book.

Our stories are significant.
Our pain is meaningful.
Our endurance is worthwhile.
Our hope makes a difference.
Our best efforts are good enough to keep us going.

The remainder of this chapter is divided into three sections. The first section is my attempt to describe how chronic illness is a daily challenge that is ongoing. The second is a brief introduction to the topic of depression which is a symptom of Chronic Fatigue Syndrome and will be addressed throughout this book. The final section is about strength and insights that I think people living with chronic illness have in common.

There are three sections in this chapter:

1. The chronic part of illness
2. Depression
3. Strength


~~~~~~~~~~The chronic part of illness~~~~~~~~~~

At the beginning of my journey with Chronic Fatigue Syndrome (CFS) I didn’t understand the meaning of chronic symptoms. The first few months that I was sick were very painful and extremely confusing because I couldn’t find a pattern for the shifting levels of pain. I began to tip-toe through my days trying to avoid whatever might flip the switch and turn the pain on. I tried eliminating certain foods from my diet, began taking extra vitamin supplements, and increased my sensitivity to anything that might trigger the intensity of my symptoms. There wasn’t anything that I could find within myself to help me predict the occurrence or severity of pain. It was defeating to try so hard to do everything I thought might help me get better only to have my symptoms flare. Sometimes my blood pressure would drop and I would feel like I was barely on this side of death. Over time I became painfully aware of what it meant to have symptoms that continued to be part of my life day after day.

There have been periods of time when I’ve been able to push through a reasonable amount of activity and times when I could barely withstand the pain. I haven’t been able to predict when certain symptoms were going to flare or when I might have a bit of relief. I don’t know if it’s easier to abide the sporadic crashing waves of pain or the lingering part of illness that tries to muffle the sound of crying from my soul. I’m not sure if either one is easier than the other, but I do know that both have taught me about the chronic part of illness and how hope, faith, and perseverance are as ongoing as my symptoms.



“Knowledge comes, but wisdom lingers, and bears a laden breast
Full of sad experience, moving toward the stillness of rest.”
Alfred Lord Tennyson



Chronic Fatigue Syndrome is somewhat challenging to describe because it is mysterious and unpredictable; however, the primary symptom that is constantly present is fatigue. Many people with different kinds of chronic illness experience a level of fatigue that is hard to accurately describe. In my case it is a painful sensation that sometimes feels like it is deep inside of my bones. The aching sort of drifts around my body and deposits pain everywhere it goes. Sometimes it’s all over my body like tiny, sharp pins are poking at every pore from the inside out. There are times when I put my fingers on my forehead and feel the heat emanating from the layers of pain inside. It’s a heavy feeling that I try to distance myself from because it pulls me down and away from life. Then there are those times when the fatigue hits ultra big time and I’m blasted into a place that requires all of my strength to simply hold on. I just want to lie down and have everything go away when that happens.

Fatigue may physically affect people in slightly different ways, but when it’s chronic it can hammer away at emotions. It’s hard to bridge the gap between ongoing fatigue and the healthy world around us.

Perhaps one of the hardest parts of living with my illness is the idea that it’s chronic. I certainly don’t understand why my fatigue doesn’t go away and I have a hard time explaining it to others who might not know what prolonged sickness feels like. I’ve tried to explain or even justify what is happening to me yet still receive blank looks of puzzlement, some more compassionate than others. Sometimes I think it’s easier to not say anything and be misunderstood than to try and explain my illness and be misunderstood. I wonder how many people with chronic illnesses are silently doing the best they can to not disturb other people with how they are feeling.

I admit that I often underestimate people’s ability to understand what I have and how it affects my life. After all, my illness doesn’t sound all that bad by name, Chronic Fatigue just sounds like you should slow down, take a nap, and get over yourself because everybody’s tired.



“When I hear somebody sigh, ‘Life is hard,’ I am always tempted to ask, ‘compared to what?’
Sydney J. Harris



Chronic fatigue is experienced in different ways by different people according to how long a person has had it, level of pain, periods of relief, family, friends, health care providers, as well as other conditions that are unique to each individual. It’s particularly challenging for those who find the strength to drag themselves to the doctor only to have their symptoms dismissed and their pain ignored. Sadly, Chronic Fatigue Syndrome isn’t a well respected illness and if a doctor can’t find a way to successfully treat symptoms it tends to become even less acceptable.

The symptoms of CFS always include persistent profound weakness and fatigue, extreme tiredness after any form of exertion, disrupted sleep, body ache, headaches, neurological and cognitive problems; and, sometimes include low blood pressure, muscle twitching, nausea, gastrointestinal problems, chronic sore throat, tender lymph nodes, (stay with me, I’m comin’ down the home stretch) chronic low-grade fever, marked weight change, sensitivity to heat and/or cold, depression, and other symptoms specific to each individual. Whew! I hope I didn’t leave too many things off the list.

I wonder if I could handle my symptoms a little better if they came at me one at a time and left soon thereafter, but I guess that would leave me on Easy Street. It’s the ongoing effort to try to get better that wears me down. When symptoms of an illness are chronic it is challenging to understand how to deal with them, especially when they interfere with activities that have given us a sense of purpose in the past. When my symptoms of fatigue, headaches, weakness, and body ache keep me from being able to do the things I’d like to do I tend to get frustrated and depressed. I think a short period of inconvenient sickness can be more easily tolerated than symptoms that are ongoing and unpredictable.

It’s not easy to find a steady balance of positive thoughts when the dark days add up but somehow I take on the chronic aspect of my illness with a kind of hope that matches the duration of my pain. I’m not always certain where this hope comes from and there are times when it wanes, but I hold on and somehow I survive. We all survive.

One of the things affecting the perception I have of my illness is how I see others dealing with their adversity. When I read or hear an inspirational story about someone who has overcome incredible odds to live an extraordinary life I wonder if I’m not trying hard enough to overcome my symptoms. I wonder why I don’t have some of the same courage and determination that the person in the story has.

It’s tempting to compare my unique situation to another person in pain. Another person may have similar symptoms as mine yet their life is entirely their own. When we compare ourselves to a remarkable story how do we generally respond? Are we inspired to achieve greater and grander heights of achievements? Or, are we discouraged with the reality of our physical challenges? Most often, we probably feel a little bit of both.

I don’t know why my illness affects me the way it does, why someone else can run a marathon, or why another can’t get out of bed. I only know that one person’s experience with pain does not explain everyone else’s reality. We each have our own individual stories that are meaningful and significant. When we compare one person’s pain or recovery to another’s with one specific measurement we are using faulty logic. It’s like saying, “I saw a dog. The dog was red. Therefore, all dogs are red.” And by using the same reasoning saying, “I know someone who was sick. That person worked hard and got better. Therefore, if all people who are sick worked hard they would get better.”

Are all dogs red?



“There are truths on this side of the Pyranees, which are falsehoods on the other.”
Blaise Pascal



We are all going to have different kinds of experiences and different ways of seeing what illness means to us. Some people may perceive chronic illness as an invasion of pain that attacks one’s ability to feel worthwhile while others see it as a wise teacher. I can see both of these perceptions in my experience with an illness that has continued to inject ongoing discomfort into my body.

When illness becomes chronic it can be discouraging to keep trying to improve and have our efforts defeated not just once or twice, but over and over again. When our endurance is stretched with pain we learn profound lessons of hope and we are persuaded to find meaning in a life experience we did not expect.


***Summary***

We do the best we can to cope with our various symptoms that continue to present themselves beyond our wishes. We find ourselves trying to explain the nature of our illness to others with difficulty because we don’t always have the language we need to adequately describe how we feel. It’s particularly challenging to explain chronic fatigue because it varies from one individual to another.
Each of us is unique and although other people’s stories can be inspiring it’s wise to be careful about how we perceive our own situation in comparison. The chronic part of our illness can manipulate our perception as it influences our hope, endurance, and tolerance of pain.

When your eyes are tired
the world is tired also.
When your vision has gone
no part of the world can find you.
Time to go into the dark
where the night has eyes
to recognize its own.
There you can be sure
you are not beyond love.
The dark will be your womb
tonight.
The night will give you a horizon
further than you can see.
You must learn one thing.
the world was made to be free in.
Give up all the other worlds
except the one to which you belong.
David Whyte, in The House of Belonging



*Thought questions*

• What are some of the most important lessons your fatigue has taught you?

• When do your symptoms most greatly affect your feelings of hope?

o How do those feelings change from one day to the next?

• What can you say to others that might help them understand what it feels
like to have an illness that is chronic?

assisted suicide

Anyone catch the Frontline episode on PBS this week? It was about an American man living in northern England who went to Switzerland for assisted suicide. He had ALS, or Lou Gerig's disease. ALS is a monster of an illness.

I was thinking about how our dog is getting really old and losing his eyesight, etc. and how it seems to be okay for many people to consider euthanasia for dogs, but when it comes to people there is controversy.

I've read books and seen other programs/documentaries on assisted suicide and have always been okay with it. I wonder if it's because I'm a sociologist, or because I trust that people know themselves and their limitations regardless of what others might think about them or their situation.

I saw a documentary about people in Denmark or Norway (can't remember which) were going to seminars to find out how to be prepared to commit suicide if their lives reached a point where they could no longer care for themselves.

These seminars were (perhaps still are) very popular.

I wonder how much of someone's opposition to this has to do with religious indoctrination and cultural traditions about death. These people obviously were not so concerned with committing a sin or a cultural taboo that they stayed home from these workshops.

Even though CFS is debilitating it is not paralyzing. I'm sure most CFS patients would be turned down by the people in Switzerland that help people with assisted suicide. My point here is not to advocate that anyone with CFS try to do this. I'm simply wondering about the feeling that people have when they feel like they have no control over their life. Absolutely no control.

My thoughts are about allowing someone to live and die with dignity. We spend our lives with this illness wishing for other people to understand what it is we are dealing with on a daily basis. Isn't this what people in horrible pain are doing when they believe they cannot continue?

I'm simply wondering.

The man in the Frontline piece said that people argue that assisted suicide is like someone trying to play God when they make a decision to end their life before God wills it. His counterpoint was that doctors are playing God when they save a premature infant or step in to save anyone that would otherwise die without help. This man used a breathing apparatus and said that he would likely die without it so how is that not playing God.

I wondered why people only think someone is playing God when it comes to death or someone dying, but not when it comes to life or keeping someone alive. Is God only about life but not death? I would think He is about both. Of course, I also believe that physical death is only temporary. I don't believe that something can become nothing.

I'm mostly fascinated by how people think they know God. In one breath He is all-knowing, all-powerful, and ever-present in the lives of everyone; and then, in the next breath a person claims to know everything about God. Who are they to know everything about a God that is all-knowing?

So, this is not a post about who thinks they know or don't know God's will when it comes to life or death. This is a post about dignity and living with an illness that takes away feelings of control. How close are we to these people who are so desperate? Has our illness taught us anything about compassion?

Introduction to Carry On, Living with Chronic Illness and Depression

INTRODUCTION

A long time ago my Grandpa Burris had a friend named Pete Somati. I’m pretty sure Pete was Italian, but being a kid I didn’t really pay attention to those kinds of things. Because of Pete’s accent there was some controversy over the name of his dog. People would ask Pete what his dog’s name was and he would say, “Roosty”. The person would then say, “Oh, Rusty.” Then Pete would say, “No, Roosty.” And the person would repeat, “Yes, Rusty.” And this would go on for quite some time, according to my grandpa. You may be asking what this story has to do with anything, especially this book.

I’ll tell you. I’ve been concerned since I started writing that I wouldn’t be able to find the words to truly express the desires of my heart and my story would be misunderstood. I wrote it anyway. Just like Pete continued to call his dog Roosty, no matter what anybody else said.

I kept writing for people living with chronic illness and/or depression hoping they might find something in my story that could help them. Hopefully, my insights will generate a different way of looking at depression. I want to validate the feelings and the lives of people who are enduring pain. I wrote this book for all the people with unheard voices who need to feel like their lives matter.

One year on Christmas Eve when I was a little kid my Grandpa Tanner put a wooden duck in the snow out on our front lawn. He told me that Santa must have put that duck out there since there weren’t any footprints in the snow leading out to it. I was pretty little, but old enough to be confused about what a wooden duck had to do with Santa, yet mystified about how that duck got out there with no footprints around it. I couldn’t help wondering why Santa would leave us a wooden duck. Once again, you’re probably wondering what this story has to do with anything.

I’ll tell you. Living with chronic illness is a mystery that most of us are trying to understand. How did we get it? Why do we have it? What are we supposed to do with it? In other words, why did Santa leave us a wooden duck?

Sometimes the thoughts we have about ourselves when we are in pain can be destructive to our spirits and it isn’t easy to turn them off. I want people to understand that pain is meaningful. If you are living with painful symptoms from a chronic illness your endurance is evidence of strength. With hope we somehow get ourselves through each day, one after the other. Even when we question our faith and the power of our prayers we keep holding on the best that we can.

When my sister was little she would dance a little jig and when she was hopping around my grandpa would tell her she had ants in her pants. Everyone thought that was funny until the day she literally had ants in her pants. It’s true she really did have ants in her pants. What does this have to do with the message of this book?

I’ll tell you. While we are figuratively dancing around with our illness there will come a day when we will see the literal power of our faith, the meaning of our pain, the strength of our endurance, and the literal feeling of hope in our hearts. If we are doing the best we can, however much that might be, we have to give ourselves credit for the goodness we have in our hearts. We didn’t expect an illness to come into our bodies and change our lives so dramatically but hope keeps us going from one painful day to the next even when we don’t know it’s there.

I’ve included quotes, poems, scriptures, and excerpts from books throughout the chapters. I’ve tried to place them so they blend in with the concepts I’m presenting, but some people may still find them distracting. You know who you are, so just skip them. There are blank pages between the chapters for you to add your own favorite quotes, poems, thoughts and feelings. You can also use these pages to argue with something in the chapter that you may disagree with. That’s always fun.

I cannot remember the books I've read
any more than the meals I have eaten;
even so, they have made me.
Emerson



I have tried to use short paragraphs because I know how difficult it can be to stay focused when we are feeling extreme fatigue. Sometimes it’s hard to concentrate when we have a headache, and for some people the neurological problems that accompany their illness can make reading a maze where it’s easy to get lost. I’ve tried to summarize the sections in each chapter as well as the chapter itself. For some of you this may seem repetitive, but for others it will be helpful.

There are references to my personal belief in God in this book. I grew up in a home where I watched my parents live according to their faith, and over time came to develop my own relationship with God. My words are not directed toward any specific religious denomination, but to a universal expression of faith and hope. I have used verses from the Holy Bible and have chosen to use the King James Version because that is what I grew up with. I sure hope that I don’t sound too preachy. I am the first to admit that I do not have all of the answers to life and I can’t pretend to fully comprehend how God works.

At the end of each section in the different chapters I have included some thought questions. These are questions that you can think about to help you work through some of your feelings about living with chronic illness. The questions are listed again at the end of each chapter. Take your time and perhaps write down some of your thoughts and feelings.

I wanted to add something to help make this book more interactive and personal. I hope that sharing some of my personal thoughts will trigger a sense of freedom in your heart. I know what it’s like to keep my true feelings to myself while living with a concealed illness, and that’s why I think it’s important to open our hearts to pure honesty when we feel safe and comfortable. I hope that by
sharing my story you will be inspired to share some of your feelings and stories.

I hope you find a few favorite passages in this book that you can read when you need a little bit of strength to help you through a tough time. Please add some of your own favorite quotes and whatever else you need to make this a resource of hope and relief. Life is a powerful teacher and we’re learning how to get through it one step at time.






If all mankind minus one, were of one opinion, and only one person were of the contrary opinion, mankind would be no more justified in silencing that one person, than he, if he had the power, would be justified in silencing mankind… If the opinion is right, they are deprived of the opportunity of exchanging error for truth: if wrong, they lose, what is almost as great a benefit, the clearer perception and livelier impression of truth, produced by its collision with error.
John Stuart Mill



Carry on!

Technology - love/hate relationship

Dang it!

I'm trying to figure out how to attach a file to my blog. A word document, to be specific. I just sent a message to my nephew who always has all kinds of stuff attached to his blog. All I can find out for myself is going to a free site that will upload and embed it for me. I don't want my file floating around in virtual upload-land.

Jakers-crakers. It's not fair that a generation is now growing up with all of this technology at their fingertips and I am struggling to learn it in my old age. Okay, relatively mid-old age.

Just give me the easy to follow step-by-step instructions with clear, recognizable buttons to push. Don't make fun of me. Don't make it sound simple when it's not. Don't virtually turn away in computer savvy disgust.

I love what computers can do for us. I hate that I cannot always figure out how to do what I want to do.

Help me, Rhonda. Help, help me Rhonda. (If you are old enough to start singing this song, then you most likely did not grow up with a personal computer.)


carry on.

I wish I could understand

I wish I could understand this illness. I wish I could understand what it is that makes us so sick with these strange symptoms. Isn't it odd that we have such bizarre symptoms that make no sense other than the FACT that someone else has the same thing?


I was coasting for awhile. It wasn't necessarily delightful, but I was managing to get a few things done in my window of functionality most days. I usually can feel it coming and I think I felt it coming this time but I tried to ignore it. It's here. It's always here, but sometimes it makes its presence known in a devastating way.


There is no pattern. That's what throws me off. I can't pinpoint what it is that triggers one day's energy level over another's. I can't figure what sends my thoughts spinning away from me. Writing it all down, charting the course of feelings/thoughts/symptoms/food/activity/etc., there is no pattern. Just when I think I may have found a rhythm to the madness it shifts. There are no visible markers to connect one to another.


My mind seeks after patterns. I try to find the answers that can destroy the questions that keep pounding in my head.


I don't really ask, "Why me?" Rather, the questions, "What is this?", and, "How does it do what it does?"


Perhaps the more important question is, "Why do I keep trying to understand?"

Tired

Tired.

Tired of trying to do what I feel like other people expect of me.

Tired of trying to push through the pain. Mostly because other people don't understand how I feel.

I wondered tonight if I need to try to somehow LOOK like I'm sick. I don't know exactly how to really look like I'm in pain when I'm in pain. I'm pretty used to trying to not look like I'm in pain.

I try to stay quiet when I feel especially sick.

It's just been tough lately trying to be as honest as possible with people and knowing that they can't possibly understand. I don't fault them. I just feel tired about it.

Next week is my birthday. I decided today that I was not going to pretend to not be sick on my birthday. I need a day just to be sick. Do you know what I mean? Someone will probably decide they need to DO something. They don't understand that NOT doing something is exactly what I want to DO. I don't know how to say what I've said any differently to help them see what can't be seen. I feel badly for both of us. For them because I don't know how to help them understand, and for me because I often feel misunderstood.

I'm just tired. I hurt. I think I would like a break from this. Some would look at my life and say that my life is a break. haha. I guess if you were on the outside looking in it would appear to be an easy life considering I only have a comparatively small window of functioning during the day/evening. Is that easy? I don't know. How do I know what's going on in other people's heads or lives...

I think of what I do that feels like such an accomplishment to me and how others expect me to keep going after I've done all I can.

Other people can handle mornings. They have a full day. I don't have mornings, really. I'm either in bed, or if I'm up it's because I feel like I absolutely have to be up for something. I know I will pay for it later with increased body ache and fatigue. I try to explain to people but their world is the world at large and my small world doesn't fit into their vision. I try. But, I'm tired. It's my fault if I keep trying and trying without screaming at the world, "NO!" No guilt. No shame. No wounded pride. My honesty falters and I swallow the words: "No, I cannot do it. I cannot push anymore."

It's not fair of me to expect people to see my illness and my efforts that feel gargantuous to me but are invisible to others.

For now, I'm just tired of not being seen.

I helped a woman at the store today who told me the doctor said she couldn't lift any more than ten pounds. I was proud of her for accepting my offer to help. I was proud of her for accepting her limitation. She scooted away on her scooter. I wonder what "ten pounds" really means to us who have a concealed illness. I wonder just how much it really weighs.

carry on.

yikes

Trying to calm down after basketball game where one of the refs was completely useless. I usually don't yell but this was crazy bad, man. I just stopped shaking a bit ago. Kind of embarrassed I let that dude get to me. Played some games of solitare to slow down the racing heartbeat, etc. Abby just got home and said the coach is filing a report against one of the refs. Won't help us now but nobody should have to go through that...

Reading a book that is pretty much one of my worst fears. It's about the possibility of war between the extreme right and the extreme left. Okay, not the possibility, the reality. Because this is basically present tense stuff. That is why the title of this post is, "yikes." Haven't finished the book so I don't know how all the conspiracy is going to play out, but in the mean time the senator from Idaho (speaker of the house) has been sworn in as president since both the president and vice president and defense secretary got blown up while in the white house, no less. The army general is totally right wing and wants to blow up everything and everybody and put the U.S. under military control. Or, does he?

carry on