Posts Tagged ‘chronic fatigue syndrome’

Unwanted Anniversary Part 3

09 April 2013 Written by Lois Hjelmstad 2 Comments

My journey with chronic fatigue syndrome continued and continues. I wrote of it again in This Path We Share: Reflecting on 60 Years of Marriage. This small excerpt shows some of the ways we coped:

"We eventually learned that while some patients recovered from chronic fatigue syndrome, many did not. However, I was determined not to lose my real life to a disease that, even though a mystery to medical science, was not usually fatal.

"From 1989 onward, Les and I struggled to make that happen. CFS shifted our roles. Doing heavy work made me worse, so Les took over as many chores as he could. We learned to stay at home in the evening. We started going to bed earlier than we preferred. If I could order from a catalogue, I skipped shopping. Friends slowly disappeared because I did not have enough energy to make and keep luncheon dates or carry on a converation when I did go. My family and friends tired of asking how I felt and hearing 'exhausted,' so I started saying, 'Fine.' 

"I increasingly turned to Les for strength and understanding. Only he could validate my journey with CFS; no one else knew or understood how difficult it was for both of us.

"Sometimes I dreamed about CFS. I would be visiting relatives or attending a party and feel too exhausted to lift my arms or legs; I felt as if I were disappearing into nothingness. The dream always frightened me to consciousness, but it was the one nightmare from which I could not awake.

"The rivers of entropy flowed on. And we knew that we could not stay in the Garden of Eden, no matter how hard we tried."

Most of the time, I accept my limitations. After all, I have had twenty-four years to adjust. It is part of the fabric of my life. CFS and my breast cancer a year later changed everything. And nothing. 

During all those years since April 6, 1989, I had two separate mastectomies, gave up teaching piano, wrote three books, traveled by car over 400,000 miles (without homicide or divorce?!) to speak more than 600 times, spent precious never-to-be-forgotten hours with my beloved husband and our four children and their families. 

But I know that there are many CFS patients who cannot live their lives, no matter how much accommodation they may try to do. I have been extremely lucky and I feel unworthy of the good fortune I have had. I am trying to give back as much as I can out of gratitude.   

This thread to be completed tomorrow with a poem…

Unwanted Anniversary Part 2

08 April 2013 Written by Lois Hjelmstad 0 Comments

After my diagnosis of chronic fatigue syndrome, I was embarrassed, mortified. What had I done to cause it? Had I worked too hard? Was I too much of a Type-A personality?

Please let me continue the excerpt from Fine Black Lines:

"Aside from Les and our children, I told no one about the diagnosis for two years. I tried to hide my symptoms, rested on the sly, and made excuses so I wouldn't have to do so much. I felt a sense of shame in having an illness that was portrayed with such triviality in the media. CFS was dismissed as the trendy disease of the late 80s–the Yuppie Flu.

"It felt neither trendy nor yuppie to me. I was 58; I was a little old gray-haired piano teacher, for goodness' sake. But I discovered what it is like to not know at 10:00 a.m. how I will feel at noon, to stand at the foot of the stairs and wonder how I will make it to the top, to be too tired to lift a pencil or hold a book, to have to rest two hours every afternoon and go to bed by 8:00 or 8:30, to play the piano and have a finger 'lock up,' to have to wear a jacket with pockets (even on a summer day) to carry my arms, and to forget an entire thought in the middle of a sentence.

"When I was diagnosed with breast cancer a year later, I almost felt validated. At least everyone understood that disease and its implications. Almost everyone has heard of the terror, the incredible sense of loss, the fear of disfigurement and death.  [At this point, I’m not so sure how many people actually understand, but that’s how I felt then.] 

"There has been no way to sort out how much of my weakness and fatigue comes from CFS and how much has been caused by the cancer surgeries and treatments. I do know it is likely that CFS has caused at least some of the difficulty in recovery and some of the residual pain in the surgical areas.

"And I know that writing has been a lifeline to reality and healing.

"Still, I did not intend to write a book. But when I shared my writing with doctors, nurses, and friends, they encouraged me to share my experience with a wider audience.

"Sometimes I laugh and say I had three things to get off my chest–this book is the third."

To be continued…

An Anniversary I Didn’t Want

06 April 2013 Written by Lois Hjelmstad 2 Comments

Today is April 6. Twenty-four years hasn't made a lot of difference. I wish it weren't this particular anniversary. Nothing much has changed. And yet everything changed. 

Let me share an excerpt from Fine Black Lines:

"On the morning of April 6, 1989, I had an unusual sense of well-being–renewal was evident in the cherry blossoms, the tender leaves, and the gentle warmth. I felt particularly well. But when I got up from a short nap at 3:30 p.m., I knew I was ill. I taught the evening piano lessons as usual. By the time I finished teaching my fever was 104 degrees. My desire to lie down was the strongest I had ever experienced, but I could not stand the weight of even a sheet on my body.

"I assumed I had the flu. It didn't even occur to me to go to the doctor. I thought, I'll just stay in bed over the weekend and I'll be fine by Monday. After four days I felt a bit better and my fever had returned to almost normal, so I resumed my regular schedule–I didn't want to get behind, with the Spring Recital only weeks away.

"Six days later I awoke with more intense pain, weakness, and lack of motion in my hands, wrists, knees, and ankles. I could barely pick my coffee cup, walk to the bathroom, or stay out of bed. By evening, a dense purple rash covered my lower legs. The clinic nurse practitioner did not have a clue what was wrong. Neither did anyone else.

"For five months I was periodically tested for Lyme disease and other possible causes for the continuing sore throat, headache, low-grade fevers, joint pain, overwhelming malaise, and other assorted symptoms. In September my new internist diagnosed Chronic Fatigue Syndrome (CFS).

"I was relieved to have a name for the problem. I was not relieved to think of having something about which so little was known and for which there was so little help."

Nothing has changed and yet everything has.

To be continued…

Hierarchy

11 March 2013 Written by Lois Hjelmstad 6 Comments

Last week I read an excellent post from Marie Ennis O'Connor on "Is There a Hierarchy Among Cancer Survivors?"

Then this week that discussion was followed by another excellent post and discusssion at Regrounding. Even though the topic has been quite thoroughly and thoughtfully covered in these previous posts, I'd like to add a bit.  

So, is there a herarchy among cancer survivors? Is there one in breast cancer circles?

Having spoken hundreds of times to quite diverse cancer support groups, as well as to oncologists, nurses, and others in the cancer community, I have experienced many layers of:

  • You didn't have chemo, so what gives you the right?
  • Your lymph nodes were not positive, so you're home free.
  • You're lucky it was only breast cancer.
  • You aren't Stage IV. Everything else is a piece of cake.
  • You didn't suffer as much with your treatment; you didn't have chemo before Zofran: you didn't burn and peel with your radiation.  
  • You can't call yourself a victim; that shows you are weak.
  • You can't use battle words; or, you must use battle language.
  • Your chronic fatigue syndrome didn't totally put you in bed for years. (Forgive my straying into another disease. But I've heard this a lot.)
  • You must identify as "survivor," "thrivor." "victor," "totally made it." (Forget about the part that breast cancer can recur years later.)
  • We must be brave, courageous – keep our friends, family, casual passers-by reassured.

 

I've also lived quite a long time. Guess that puts me pushing toward the top of the hierarchy of "I'm older than you and I know better." But maybe I won't play that card, even though with all of this well-earned gray hair and many wrinkles, it is terribly tempting. 🙂 

Let me repeat some of what I commented on Marie's blog (with amplification):

There is always hierarchy. Everywhere. In every circle – family, sports, health, illness, religion, politics, young, old, male, female.

I don’t know if it is more prevalent among women than men; it may seem so in junior high, but it probably just exists in different arenas.

There is something within us that seems to compel us to play one-upmanship. In disease circles, maybe it is self-preservation. If I can figure out what stupid thing you did to make yourself sick or caused yourself to die, I can avoid that and save myself indefinitely.

I try to guard myself against participating in hierarchical maneuvers, but certainly don’t always succeed. I have deservedly been put in my place a number of times.

When I am the recipient, my hope is always that I can find the grace to give the other person the benefit of the doubt – realizing that there is no way I can walk in her shoes or divine her motives or identify her. I simply do not know why he or she has chosen that path or why he or she needs to de-elevate me. 

On the other hand, no one can put me down if I won’t go down.

Just Stay Positive?

04 September 2012 Written by Lois Hjelmstad 1 Comment

"You will be just fine" has long been a problem for me. No matter what horrendous circumstance one is facing, what one needs is support and validation, not cheer-leading. Discounting a person's feelings and implying that everything can be solved by being positive does a great disservice to the ill or injured or depressed or bereaved.

But at one time or another, I suspect we have all said it. I know I have. Do we say it to reassure others? To reassure ourselves? To deny what's going on?

And beyond that, there is "Just stay positive." Another soul shrinker that:

  • implies you caused your own cancer with your negativity
  • burdens you with being in charge of getting well
  • causes infinite pain if cancer eats at you until you die

I have a poem to share with you:

You Will Be Just Fine

Please do not trivialize
my suffering.

You who are healthy
You whose mortaility is as yet
Only dimly preceived–
Please do not say
"You will be just fine."

I may well be–someday–
But I do not know…
You do not know…

(Excerpted from Fine Black Lines: Reflections on Facing Cancer, Fear and Loneliness, (c) 1993, 2003 Lois Tschetter Hjelmstad. All rights reserved.)

And tell me why you think we keep saying, "You will be just fine."

 

« Older Entries