Basic Stuff

  • Name: Duckcove
  • Country: United States
  • State: Rhode Island
  • City: North Kingstown
  • Gender: Female
  • Age: 72
  • Education: Four Year Degree
  • Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Irritable bowel syndrome
  • Year Illness Began: 1990

Functioning Interrupted

Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 30
(Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods.)

Work Interrupted

  • Former Occupation: part time sailmaker, full time mom
  • Job Responsibilities at Former Occupation:

    Recently started my own sail repair/custom canvas business. Full time mom with two young kids. My husband had started his business and was working long hours.

  • Current Occupation: owner, part time custom marine canvas design
  • Current Job Responsibilities:

    I'm cutting back due to health and age. Still designing, patterning, sewing, and installing custom cushions, covers, specialty items. It is physical work with heavy and stiff fabrics, etc. Design and estimating can only be done when I am mentally sharp. LIkewise, sewing can only be done when I am mostly functional.

  • Years of Work Lost: 8
  • Current Work Status: Still working

Income Interrupted

  • Minimum Current Annual Income Loss:


Other Interruptions

Certified Disabled: No

  • My parents or other family members have provided financial support
  • This illness has severely impacted my ability to financially prepare for retirement
  • I reduced my work hours
  • I have been unable to or found it very difficult to date
  • I believe this illness contributed significantly to a divorce or loss of an important relationship

Most Impactful Loss

From a very strong, energetic, & high functioning, to practically bedridden after the flu. I had to farm out most of my new business to a competitor. I have not been able to grow my business as much as I would like. I've spent a lot of money trying many treatments. Minimal results.

My Story

At 5'2" I was a happy dynamo of energy. From healthy to bedridden with many haywire body system practically overnight.. With two little kids that was torture. My husband would begrudgingly sometimes cook dinner, after a long days work. Short term memory vanished. Driving was scary, not knowing how to go home.. Instinct got me there. Early treatments were a major failure. As have most things I have tried.
Might be reactivation of EBV from college. 4 years after CFS diagnosis I had breast cancer. Surgeries, chemo, radiation. That set me back farther. Gradually I worked my way back to about 70% function with gentle exercise over 10 years.
CFS contributed to my divorce. I had to get a full time job to support myself, and try to keep my business going minimally, and take care of an elderly parent. I downsized my house and responsibilities. No social life. Exhausting.
Thank goodness for social security. Between downsizing my house and being self employed, I have been able to squeak by. Most days I can work around my energy and mental capacity limits. My primary care doc resisted my low thyroid symptoms until they were severe, then only a tiny dose, which didn't do much. My energy plummeted. I had to stop my minimal exercise. Weight continued to climb. A switch flipped to very hyperthyroid with heart palpitations and jitters. Thru nutritional help, going gluten, dairy, and lectin free; along with heart and thyroid suppressant drugs, quickly reversed that. Amazing. But CFS remained.
Modified BioSet (with detoxing, inputing energy frequencies, use of lasers, etc has helped me gain some function to about 50%.. From 12 hrs a day on the couch to 6 hrs. I have gained 90 lbs and now dealing with metabolic syndrome, prediabetes, sleep apnea, arthritis. Post Phizer Covid shot, energy nosedived again, I had to stop walking and minimal exercise. 2 years later my arm is still sore and I am now dealing with pain and loss of function in my hips and lower back. Chiropractic and neuromuscular therapy help a tiny bit. pain meds every day. and still in pain.
My view of our harbor is my solace. I spend a lot of time researching and taking notes. I've cleaned up my food, my home, my body lotions/cleaners,, etc. I am taking lots of high quality supplements and some drugs. Hard to tell what's really helping and not. All this out of pocket cost is expensive. Cognitively I am doing better. Someday I hope to find a doctor who can help me. . In general I am slowly going downhill.

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