I am built like a skinny pear. Seems I inherited mixed up genes: my mother’s mother’s skinny upper torso and my father’s mother’s ample bottom. (Grandma Pauline’s maiden name was Gross. She was buxom, but I received only her thighs and thick calves and ankles—along with her cooking instincts).
When my boys were little and we had to separate them on car rides to keep them from punching each other in the back seat, Todd would sit in the middle between me and Steve in the front and poke at my thighs when I wore shorts. “Jello!” he’d shout. I didn’t find that so funny, but he and Jack in the back seat would crack up.
My power-walking over the years made some difference. I developed muscles and tightened my thighs. I felt good about this.
I was dedicated to my regimen. I pulled myself out of bed every weekday at 5:30 no matter how sleepy I felt, and walked in all kinds of heat and rain and cold and snow. Only an ice storm kept me inside, but then I’d use the stationary bike in our basement or join Jane Fonda in an aerobic workout.
On weekends, I’d walk longer distances. Aside from the muscles, I loved the sense of well-being that followed exercise. I especially relished swimming laps in the summer.
Then came the flu shot and its aftermath.
ME/CFS Kicks In
The prominent symptom of “Myaglic Encephalomyelitis”, a real mouthful, is “post-exertional neuroimmune exhaustion” or PENE (http://forums. phoenixrising.me/showwiki.php?title= General+Wiki+Pages: Clinical+descriptions+ of+chronic+fatigue+syndrome) :
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are:
- Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
- Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms
- Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
- Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
- Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
From Toned To Pudding
I haven’t been able to exercise for 14 years, and my thighs have swollen even beyond their original bulk. I never dreamed that my tight thin arms would melt into toneless flab. I’m pudding.
It’s all part of the issue of control. I used to be in charge of my life. I decided what I wanted, how to get what I wanted, and if what I wanted was worth the effort. If it was, I committed myself to make it happen. At home, at work, at play. Students not responding? Re-think and create different activities. Steve’s cholesterol too high? Find low-fat recipes; saute with chicken broth instead of oil. Flabby arms? Lift weights. ME/CFS has undermined my sense of free will and personal power, slapping my hand whenever I reach out. Hard.
I have become inconsequential.
I’ve tried to exercise. I’ve been through three sets of physical therapy sessions with different therapists. I’ve tried easy yoga, both at home and with others, an exercise class for the elderly, and mild water aerobics, in both regular and therapeutically heated indoor pools. I’ve forced myself to ease into movement, to take it slowly, but always, at some very early point, I’d have such a bad crash that I’d be back in bed for at least a week. The thought of going back to the class or the pool fills me with dread.
The other knee-slapper is the osteoporosis I’ve inherited from my slight, dowager-humped mother. As we know, one safe, non-drug treatment, uniformly recommended to improve bone density, is weight-bearing exercise. I write this as I sit in bed with the computer resting on my legs as my muscles ache from just taking a shower and washing my hair. Does holding the blow-dryer count as weight-bearing exercise?
According to Dr. Nancy Klimas, exercise can be possible with a very carefully designed exercise protocol:
“In our clinic we use a scientific approach to exercise called V02 max testing and it measures accurately what your body is doing when it is exercising and the point at which it becomes unsafe to continue. The results of V02 max testing will tell you how long and how hard you can exercise, and then from this information we can develop an exercise protocol for you that is safe and effective.”
I’ve asked about scheduling the testing during my visits to her Miami clinic, but each time I was too debilitated and Dr. Rey recommended against it.
Meanwhile, I envy neighbors out jogging or even just walking their dogs, taking their strength and health for granted; I have to rest after I make dinner. Meanwhile, my hips get bulgier and my arms flabbier. I don’t want to be so self-conscious. In the right clothes (a short waisted long-sleeved blouse and A-line skirt, maybe, with control-top panty hose and mini-heels) I don’t look so bad. But pictures of JLo with her sexy mini-dress and long beautiful tanned bare legs in glittery spiked heels, make me wither.
This is the post-sick me; before, I was content with how my body responded to my daily exercise. And hey, I’m 70 years old and should be over the old beauty trap, yet I sometimes long to hide inside a burka.
The lives of people saddled with relentless chronic diseases add a dimension to the complicated issue of “free will”, defined by Mirriam Webster online as “the ability to choose how to act. . .to make choices that are not controlled by fate or God.” Others would add freedom from biological and psychological restraints, a freedom that would make us responsible for our choices and actions. Of course, all our choices are limited by innumerable factors, whether we are ill or not, but most people at least feel free to act on their desires and values. To lose your autonomy because your body refuses to accept and respond to the mind’s desires creates feelings of inadequacy, powerlessness and oppression. The existential world shrinks along with the physical world.
I think another factor adds to the sense of powerlessness we feel on an individual level: our collective feeling of powerlessness to effect meaningful changes in the medical world. Witness the most recent controversy over the contract the Department of Health and Human Services entered with the Institute of Medicine, a group without the necessary expertise, to reach a consensus for a useful definition of ME/CFS. One reason this decision by HHS struck patients and practitioners so intensely is the dismal history of the powers-that-be to attend to our disease. Again our wishes are ignored, not just by our bodies but by our government. Cort’s image of the sleeping tiger awakening to describe the ME/CFS experts who wrote the letter rejecting the contract beautifully captures our need to feel powerful and effectual in the face of our usual impotence.
Okay, I am encouraged by the strong voices of ME/CFS patients and advocates. I am tired of just breathing, accepting “it is what it is,” and counting my blessings.
- Check out more of Carol’s blog series – A Chronic Fatigue Syndrome Chronicle
Register for our free ME/CFS, fibromyalgia, and long COVID blogs here.