Category: Chronic Fatigue Syndrome

Unwanted Anniversary Part 3

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

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

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…

A Sudden Mist of Tears

Today is my dear Mary Jo's birthday. She was eleven days younger than I. Four years ago I turned 78, but she died two days before she turned 78. 

I saved this story for her birthday.

Last week I walked up to buy some cosmetics at the Clinique counter in Macy's. A woman stood at the counter – she had short, dark auburn-dyed hair and the same rust-tone blush and lipstick as Mary Jo wore. She had gold rimmed glasses. She had the very same wrinkles in the very same places as Mary Jo. She turned to ask me a question. 

My eyes filled and my throat ached. If only Mary Jo could ask me a question.

It would be more likely that she would answer one of mine. She was my go-to girl: Which wallpaper goes best with my flooring? Should I get the green chair or the brown one? I need a good recipe for lasagna. Would you help me solve this issue with the kids?  

She married Les' brother when I was twenty and became my best friend. We raised our children together. We celebrated anniversaries together. We went to Norway together. When I became ill with CFS in 1989, she was the one who tried to understand my loss of energy and stamina. She was the one who made accommodations for me. She always had my back.

So, happy birthday, Mary Jo. I will love you and miss you always.

 

Declutter Your Life – Relationships1

Oh, no. Declutter the relationships in our lives?

(I am re-posting this from a year ago.)

We love our families. We love our friends–we go to lunch fifty-seven times a month (no, wait, that doesn't compute). We gad about like flutterbys (on Facebook and off, on Twitter and off, on LinkedIn and off). If we aren't madly chasing about, if our daybooks aren't a sea of scribbles, if our iPhone doesn't beep constantly, if our Inbox isn't at 89 incoming emails and definitely not holding, who are we?

It clearly is "in" to be busy and who hasn't said, "It's just crazy around here, just crazy," while smiling a bit smugly?

Some of us work two or three jobs. Some of us have breast cancer. Some of us have chronic fatigue syndrome. Some of us have other health problems. Some of us deal with tragedy. Some of us have 14 grandchildren and 8 great grands. (I fit into every category but the first one.)

So how do we decide what we can do, whom we can see, what meetings we should attend, what charities to support, how to make a difference?

Each of those we love is important. Each of our friends brings something special to our lives. Most charities are worthy. (But be sure you know which ones.)

To prioritize my life, I have drawn circles. I am in the center.

If I don't take care of myself, there is no energy for the rest of the circles. Les is next, followed closely by our children and their families. (I'm already up to more than thirty people.) That pretty much means I keep up with the rest of the people near and dear to me with a quick email here and there, Facebook, blogs, and the annual Christmas letters. Is it enough? Of course not.

(To be continued)