I've had this horrible illness for nearly 18 years and while it changes on me all time, it has never got better. I struggle my way through each day but don't necessarily look sick, so that people tell me how well I look and I feel like I must agree and don't dare complain.
I have a document I wrote for my family way back in 1995 (with some short updates through the years) that you can read if you'd like to know a bit more about how living with CFS feels.
Going round my blogs today, I found a great post on Songs to a Midnight Sky. I asked if I could copy it here and got permission.
Do go and listen to Susan's song. Listen to the words and/or read the lyrics. She captures some of living with CFS beautifully.
I received the below email yesterday (printed in part below). The song is beautiful, as is the rest of her music. I highly recommend a visit to the link in the note below. Thank you again, Susan.
Today is CFIDS Awareness Day. Listen to her song. Google CFIDS.
Both my link and hers open in a new window.
Susan's note:
I've put up a song on my band's Myspace page related to living with undiagnosed CFIDS:
http://myspace.com/cinderbridge (If it doesn't start playing immediately, click the "Everybody Knows About Me" link.)
My aim in writing "Everybody Knows About Me" was twofold. First, I wanted people with CFIDS or similar invisible illnesses to feel they weren't alone -- that not everyone believes it's just hypochondria or laziness. Second, I wanted to make nonsufferers understand why it's silly to believe that CFIDS/other invisible illnesses are just hypochondria or laziness.
If you like the song, please give the link to your readers. The most important thing that can happen for people with CFIDS is a cure, or at least more effective treatment. But since I'm not a doctor or a medical researcher, the best I can do is try to help create an environment where voters think it's a good idea to fund CFIDS research at a higher level than hay fever.
Thanks for listening. I hope you like the song.
Yours,
Susan Wenger
3 comments:
Kerry
I'm so glad you posted this. Uncanny that we got this the same year. I don't know how you raise a child. More power to you! I never was able to work after it hit me. Mine was one of the hard hits and took me down completely, complete with all the neurological symptoms from the get-go. I'm better now , too, but too dizzy still to consider working. My writing keeps me going. I get this 'you look so GOOD' , too. People don't understand that because we're tired of being sick that we try even harder to take care of our appearance in some attempt at normality.
Take good care.
Pris
Songs to a midnight sky
Susan here. Thanks so much for the kind words. I don't have CFIDS/ME myself, but I know someone who does, and I get so tired of other people thinking this is just something he can push through. I'm hoping the song gets through to people like that.
I feel so uncomfortable when people say I look well.
Sometimes they are being nice. They know I feel rubbish but want to make me feel better.
Sometimes it's just a social niceity and it's not worth kicking up a fuss.
Sometimes it makes me hold my breath and wonder - am I misrepresenting myself to the world? Am I as ill as I say I am when they see me doing the things I say I can't (showered and dressed and walking around and chatting and going out). But they don't see the following days/week when I pay for the front I put on.
Sometimes, as blunt and saddening as the truth can be - it seems better than to hide it and suffer alone.
Oooh - that turned into a long comment!! Sorry :o)
Post a Comment