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
~~~~~~~~~~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.”
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.
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
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
• 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?