CFS:  The Invisible Illness that Waxes and Wanes

By Julie S Levy

Today, I think I can make it, I think I can get to Target to get a few items.

At this moment, my legs don’t feel like they weigh a ton, I am able to lift my arms easier, I don’t feel like I have a migraine, my energy level is slightly better, I am not exerting myself just to make a cup of coffee and I am able to sit upright on the sofa. This is great!    

I’ll bathe later; otherwise I won’t have the energy. PJ’s are off and sweater, jeans and comfortable shoes and jacket are on. 

Short Shopping List:  
Paper towels, toilet paper, laundry detergent, Epson salt, non-toxic counter spray and body soap. 

(Today’s status on a scale 1-10, 10 most severe)
Short Chronic Fatigue Syndrome Checklist:
Fatigue 6, flu-like symptoms 5, headache 4, muscle and joint pain 5, muscle weakness 6, brain-fog 5, dizziness 5, sensitivity to noise, light, odors 7, balance 5, ability to concentrate 6, restorative sleep 7.

A simple errand. Right? I wish. I drove four minutes to Target-a small victory. Inside I am weakly navigating through the store, leaning on my shopping cart for support attempting to calculate which items are better prices and which brands to choose from while the background noise, lights and odors in the cleaning aisle are exacerbating my symptoms. My brain feels swollen, my head hurts, and I feel faint and dizzy as my stamina depletes within ten minutes. 

My energy is gone. I am relieved to see there is no one at one of the check out lines. Balancing my self on the check-out counter I am unsure I will be able to drive home.

Once entering my home I sigh and leave the items in the bags on the kitchen floor and lie down on my bed. I have accomplished something today.

When a marathon runner exceeds the distance she is capable of running sometime she may “hit the wall”.  I just “crash” and all I did was go to a store one mile away.  For me, light physical exertion, enjoyable conversations, researching on the web, reading and writing, painting, emailing friends, standing for a short time while I try to prepare an easy meal all have consequences.  

Chronic Fatigue Syndrome affects every pathway in my body which means there are abnormalities in the immune system, neuroendocrine system and autonomic nervous system. My body has a difficult time recuperating from all types of exertion. Most of my days I am bedridden because my entire body aches, I am extremely weak and my ability to read or write or concentrate is severely compromised. Living with Chronic Fatigue Syndrome is like living with a severe case of the flu almost on a daily basis with multiple additional painful and complex symptoms.

I am always uncertain whether I will be able to socialize or achieve a simple task.  The word “tentatively” is always used when making plans. My heart desires to participate in life and be active and filled with passion but my body dictates my activity level.

Chronic Fatigue Syndrome is not depression. CFS is a real biological illness. Many people battling cancer or any chronic illness are susceptible to secondary depression. When secondary depression does occur, it needs to be treated as a separate illness.  CFS is not a form of depression.

The concept of Mind over Matter with CFS can be counterproductive; it is healthier to learn to live in harmony with your body and mind.  For me this is an ongoing process because I push my self occasionally in order to feed my soul; while my soul soars, the setbacks for my health are inevitable and unforgiving.

I was diagnosed with CFS and Fibromyalgia in 1996 at the age of thirty- five.  My life is sometimes divided into “before CFS” and “after CFS.”

Dick Gordon talked to Julie Levy. Julie has chronic fatigue syndrome. This is the painting they discussed in the interview. It took Julie 5 months to finish this oil painting. Click image to see larger version

Who was I before?  I sold pharmaceuticals for ten years, I was an entrepreneur with a medical clothing business, I painted, I exercised two to three hours a day on a average of five times per week, I played competitive tennis, I read and participated in life in ways that fed the soul, I hiked, traveled, and rode my bicycle.  I also worked for Club Med and lived on some beautiful Islands went out dancing when discos were cool, wrote short stories or prose about things that moved me and read numerous books about relationships and self growth. I also have a B.A. in Communication and put myself through college. I was an independent and healthy woman. At my core, I believed strongly that you had a choice to be a participant and a student of life or be an observer. I was passionate with unlimited dreams and goals.  My ambitions were many and my life was rich and full. Never in my nightmares did I imagine I would be disabled at 35 and forced to move home with my mother and accept disability income. 

Chronic Fatigue Syndrome affects more people then multiple sclerosis, lupus and lung cancer.  The Centers for Disease Control held a press conference in November, 2006 with doctors announcing “that this is a real illness and not a psychological illness and people with CFS can experience the same level of disability equal to patients with multiple sclerosis, end-stage renal disease, advanced HIV disease or undergoing chemotherapy.”

And with this monumental validation from the CDC, I still have to ask myself how long will it take for the media to give this illness the attention it deserves? How long will it take for practicing physicians to be able to diagnose a patient suffering from Chronic Fatigue Syndrome? When will there be the much-needed research and development from both the private and federal sectors?  Will CFS have a race for the cure? Will CFS have an entire month or even a day dedicated to awareness and education in which the medical community and the media take an active role? When will there be a blood test for a marker?

A major part of the medical community, family and friends don’t understand a how person who does not look sick is severely ill.  Puzzled, they may say such things as, “One day she can walk for ten minutes and eat lunch out and the next several days she can’t move.”  At times I have to be in wheelchair, for example, at a museum. I see the shift in others who look for something visible to mark me as different.  Medical science can view illness as “black and white” and since there currently is no blood test that points to a diagnostic marker, doctors dismiss that patient in the grey area. It can be very dehumanizing for a patient suffering from Chronic Fatigue Syndrome when a physician diminishes your illness.  I am not looking for pity. CFS sufferers seek the same validation as any other patient with a debilitating illness. We want to know that our physician is attuned to the complexities of our symptoms and will treat us in the same manner as they treat others.

Our country loves a winner, the kind that overcomes the odds. CFS lacks that Rocky and Lance Armstrong appeal.  Yet, we need that strong voice.  There is something to be said for those who live each day without the certainty or possibility of ever getting better while enduring a poor quality of life. Overcoming those odds take a lot of courage and resolve.

Luckily, I have had the great opportunity in my earlier stages of Chronic Fatigue Syndrome to meet Katrina Berne Ph.D. who helped me process the loss and understand all that encompasses CFS, gave me the gift of validation and so much more. She is the author of “Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses”.  I also was fortunate to find a support group of wonderful evolved women.

Currently my husband drives me out of state to see one of the top doctors for CFS in North Carolina.  

I urge anyone thinking she or he might have CFS to check the websites cfids.org and cdc.gov/cfs.  Find a doctor who is CFS-knowledgeable or who specializes in CFS.  Once diagnosed, your chances of any degree of recovery are increased if you slow down immediately.

Last Thoughts:  Once in a while I am able to attend a yoga class and when I get on my mat in a room filled with other people it’s really a great day.  I still have that passion to live life and I can find it in a sunset, the ocean, laughter with real friends, and a great cup of coffee. Learning to surrender to something you can’t control and trying to look at the things that you still have instead of what you have lost is an ongoing process for me not easy but doable. Living with pain and multiple symptoms is a challenge.  I have learned to make peace with CFS by having all the television choices you can possibly have, knowing there is a bed for me to rest on and a home that is my sanctuary, enjoying time with my friends and family, and surfing the Internet.  (I have deep appreciation for a high thread count in my bed linens.)  Finally, I cope by keeping my sense of humor and the remote control.  I often visualize the sound of a tennis ball again bouncing off my racket, traveling to far away places and being able to get things on my Target shopping list effortlessly.