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This week marks five years for me being back online again. I had surrendered my connection more than a decade ago, when ME/CFS had me down for the count. Fortunately I have been recovering my lost health and parts of my lost life these past five years.
ME/CFS is a much shorter way of saying myalgic encephalomyelitis or chronic fatigue syndrome. The latter name chronic fatigue syndrome or CFS, has been despised by the patient community since it was first coined.
We have seen several attempts at new designations come and go in the more than two decades since I first became ill. I expect that the process had been going on before my time as well.
Myalgic encephalomyelitis or ME is a term that is treated with marginally more respect than CFS though arguably neither is shown much regard.
But I digress. I was trying to decide what to call this illness for the purposes of my article. I used to use the term CFS but have recently made the move to ME/CFS. Just one of the things that have changed in the last five years.
The first big change five years ago was that I got a computer. The second big change was that I started looking for work online. The third big change was ... I found EmpowHER.
That new computer and that job search brought me here. It also brought me to an ME/CFS website and forums called Phoenix Rising where I began to learn more about this devastating condition, and found some ways to handle it. And I found Facebook, which provided me a social life for the first time in years.
Five years ago I felt like my life ahead of me was going to be a downhill slide to oblivion. I had no prospects of work up till that point, no friends to speak of, no interests or hobbies that might branch off into something useful, no energy and no brainpower.
The notion of trying to find work on the internet sounded ridiculous even to me, but I literally had no other possibilities.
I knew I was not healthy enough or sharp enough cognitively speaking to work even part time in a quiet little shop in my own town. Two hours on my feet, dealing with people, or numbers or both and I would have been bedridden from the overexertion for weeks or months.
Think that's an exaggeration? Nope. I don't need to exaggerate for theatrical effect. This disease is a theatrical diva in and of itself, intent on sucking up all the life in the room, till nothing of the individual is left.
That is certainly what happened to me, for many years without letup.
But five years ago my husband bought me a computer. I got a chance to let my fingers do the walking, in a situation where I could work at home -- in bed if need be. I found EmpowHER, and my life immediately began to change for the better.
Visit Jody's website at http://www.ncubator.ca
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