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OCCASIONALLY

From Winter 2017-8 Forum

Occasionally…
I shake my head remembering that it was my own country that changed the name of my illness to such a silly and degrading name when they knew the disease they misnamed (Chronic Epstein-Barr Virus) was called Myalgic Encephalomyelitis and, instead, renamed it Chronic Fatigue Syndrome.

Occasionally…
I feel that nobody understands what I have to live with and think that I just feel tired all the time. It makes me feel so alone and then there is a phone call or email or the arrival of The National Forum and I know it isnít just me that feels this way.

Occasionally…
I feel pretty good and do too much. Then I pay for it but good a day or two later. Payback is never pleasant and often horrible.

Occasionally…
When I am in a relapse with symptoms worse than ever, I think to myself, ďWhat if I never improve?Ē But I remember Iíve been here before and I remember that I have to pace myself and rest more.

Occasionally…
I forget that I have limits and donít plan or pace myself enough. Than I have to face up to reality and prioritize so I donít go beyond my limit. I have to remind myself that itís not my fault that I am sick.

Occasionally…
I remember how sick I was and how painful it was until I leamed to carefully pace myself. I feel scared that I may end up like that again. I also know others who are far worse off than I am and get afraid that I may worsen as they did.

Occasionally…
I canít remember what life was like before I had this dreadful disease. That person is gone but I feel hope when I read how the National CFIDS Foundation is following up on everything science proves and feels there could be a day when there is something to take on a daily basis that allows me to visit old friends or walk around a store or never having to say ďnoĒ to an invitation. Their latest funding is for a treatment when a researcher they funded found out exactly where the damage begins on a daily basis. The hope that this gives me makes me smile as I lie in bed even as others walk briskly by my house enjoying the sunshine.




The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606