Basic Stuff

  • Name: Ani
  • Country: Australia
  • State: Australian Capital Territory
  • City: Canberra
  • Gender: Female
  • Age: 40
  • Education: Jr. College
  • Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Migraine
    • Endometriosis, PTSD, Anxiety, Depression
  • Year Illness Began: 2008

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: I.T. apprentice
  • Job Responsibilities at Former Occupation:

    Test Analyst in a Government department.
    Understand new systems and how they work.
    Write test scripts
    Action test scripts
    Raise defects
    Liaise with other sections on defects and test scripts
    Ensure compliance with testing schedule

  • Years of Work Lost: 14
  • Current Work Status: On disability

Income Interrupted

  • Yearly Income Before Becoming Ill:


  • Yearly Income From Disability:


  • Minimum Current Annual Income Loss:


  • Total Projected Economic Losses For Years Not Worked:


Other Interruptions

Certified Disabled: Yes

  • My parents or other family members have provided financial support
  • This illness has severely impacted my ability to financially prepare for retirement
  • I left my job or retired early
  • I decided not to have children (or have more children)
  • I believe this illness contributed significantly to a divorce or loss of an important relationship

Most Impactful Loss

No Job. No Children. Unable to participate fully in the things I enjoy.

Trying to find meaning in a life so far removed what I was sure I wanted.

My Story

I was in a car accident in 2008 at age 25. Prior to the accident I had a promising IT career and had applied for APS 4 ($73000 - $81000) and APS 5 ($81000 - $88000) Test Analyst positions and been found Highly suitable and Suitable respectively. I was working full-time married and looking forward to having children.

After the accident I had 6 months off work completely and then tried going back part time. Did all the Graded Exercise Therapy the doctors and specialists were suggesting and kept getting worse. I tried returning to work for almost a year got up to 12 hours a week but that was all I could do. I kept getting sick. Didn't have the energy to cook or clean. Go dancing or hang with friends. My work performance suffered. The brain fog was intense. The pain extreme. Then my employer decided they "couldn't find suitable duties" for me and cancelled my contract.

My husband at the time was kinda supportive for a while "you'll find another job".

Meanwhile I got a moderate payout from the insurance company and paid off the house.

I was a walking talking zombie and the ME/CFS and my reluctance to have children when I could barely look after myself contributed to my marriage breakdown "I wasn't the woman he married."

In 2017 I got a severe bout of what the doctor said was Bronchitis. What limited functionality I had dropped dramatically. I was almost bed bound. In 2018 my husband couldn't take it anymore and we started divorce proceedings finishing up in 2019 after taking out a loan with my parents to pay out my ex husband.

I'm now 40, divorced, unable to have children because I'm so constantly exhausted I can barely look after myself and my cat, on the Disability Support Pension unable to afford to live alone in my own house.

My relationship with my family is crumbling because "I don't prioritise them". What they don't see that 2 days after I go out with them I'm wiped and down spoons (energy - see spoon theory) for a week or two.

I'm finding it super difficult to stay within my energy envelope which is the only way I have a chance to get better.

I practically live either on the couch, doctor/ therapists offices, or in bed. Although I spend a lot of time in bed I struggle to sleep.

I'm trying to slowly rebuild my life but the struggle is intense and exhausting.

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