Basic Stuff

  • Name: Dave
  • Country: United States
  • State: New Mexico
  • City: Milan
  • Gender: Male
  • Education: Four Year Degree
  • Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Sleep Apnea (use CPAP), Diabetes
  • Year Illness Began: 1998

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: 20
(Moderate to severe symptoms at rest. Unable to perform strenuous activity; overall activity 30%-50% of expected. Unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.)

Work Interrupted

  • Former Occupation: Teacher
  • Job Responsibilities at Former Occupation:

    Band & Choir Director at both HS & Mid.

  • Years of Work Lost: 24
  • Current Work Status: On disability

Income Interrupted

  • Yearly Income Before Becoming Ill:

    $20,000

  • Yearly Income From Disability:

    $8,400

  • Minimum Current Annual Income Loss:

    $28,068

  • Total Projected Economic Losses For Years Not Worked:

    $660,040

Other Interruptions

Certified Disabled: Yes

Finances:
  • A member of my family stopped or reduced their time at work to become a caregiver
  • My parents or other family members have provided financial support
  • This illness has severely impacted my ability to financially prepare for retirement
Education:
  • I was unable to attend college/university as I had planned
Work:
  • I took on jobs with less responsibilities than I otherwise would have
Housing:
  • I lost my house or had to move to a smaller dwelling
Relationships:
  • 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

I lost my ability to work, had to have help in most daily tasks, & I don't do a lot of simple b4 things like wash my hair, or put them off until weeks l8r.

My Story

By the way, currently, I am 1/2 the man I used to be -- 260lbs when I got sick, and now down to 130lbs @ 6' tall. When I got sick with EBV (as my Dr. said I had titers for), I had a lot of good stress doing my 1st music job (I taught in other fields b4 -- Math, Science, Computers, & Substituted in those & Music, Chinese etc, K-12). My health begin to get worse in the spring of '98, so I exercised more like riding my bike to and from my work sites, but this didn't make things better at all. On one day I had 103℉ fever, was about to give up due to all the symptoms, but then a song "Never give up, Never Give in" (a March) filled my mind, so I wrote it down, and the fever abated that same day in the evening. My Doctor came up with the diagnosis after about 6mo and running every test he could think of -- CFIDS or now it is CFS/ME. Since then I got a little better, had to go back to work, but one class a semester at the college & prisons was all I could do so long as my wife graded the papers! After 3 semesters of that, disability kicked in from Social Security, then 2years from that was Medicare. I developed work arounds so I can do things like type here & stay seated upright longer like using socks up to my knees, no social media, not going to Church, only checking into nets (limiting talking on Ham Radio), but what has kept me sane is singing playing Piano & composing hundred of songs (mostly just music, no lyrics). I also read a bit, & play easy computer games like Mahjongg. My wife (also a teacher)(until about when she passed from rare cancer over 2yrs ago) & now my 22+ son takes care of me, like clean my clothes, prepare & cook my food, etc. Over the decades and even now, my symptoms make it hard to do anything -- things like lights too bright at times, fatigue all the time, pain everywhere and body messed up around bed time the worse, wondering if I got restful sleep upon waking, sleeping 10+ hours/day, having air hunger and breathing much larger vol just to do things, heart beating like crazy, O2 sats always in the 90's (so I am OK?!?!) having hands that like to hang down, feeble knees, dropping things readily, and I just can't always walk and try to fall as brain signals get mixed up, turn into pain, etc. and then I try to reach for items, and if I don't slow down, I will miss!!! Much more, but enough of this, sorry.



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