Thunderstruck*

Do you remember those moments in your life when something so momentous happens that time seems temporarily suspended, and you become acutely aware of your surroundings? For example, people frequently ask, Do you remember where you were when you heard about JFKs assassination? Or when you first heard about Princess Diana? Or 9-11? What about when you became sick with CFS? Youll never forget, right?

I can even remember exactly where I was when I first heard about CFS. It was 1985-86, and I was rushing out of the bedroom on my way to work. Before I turned off the radio, I heard the news reporter doing a piece on Yuppie Flu. Young, upwardly mobile professional. The newscaster was saying these people were too tired to get out of bed and go to work. I thought, No way! I couldnt wrap my mind around someone who worked very hard for a degree and a career choosing to lie around in bed. Then I get CFS 15 years later. Go figure.

August 23, 2010. The Alter paper. From Yuppie Flu to retrovirus. Out of the mouth of a Federal official. Whats next? We find life on another planet?

Quickly, the forum threads filled with links to the New York Times, CNN, PNAS early edition, HPC Market Watch, and more. The CDC XMRV page is gone. No. There it is again, carefully and cautiously worded to coincide with the release of the NIH paper.

I get my Medicare Advantage customer rep on the telephone. Do you cover the Human Gamma Retrovirus Test Kit? I ask nonchalantly, while thinking Im in some kind of science fiction movie. Silence. I tell her it comes as a serology or culture test. Finally, she says that she needs the CPT codes in order to tell me if its covered. I tell her Ill call and find out. We say this to each other three times. She wont let me off the phone.

86% of CFS sufferers have a retrovirus. Say that to yourself 5 times fast. We have it for life. There is no cure. Presumably, its transmitted like AIDS. Tell your partner that 5 times real fast. We have it for life. Thunderstruck.

*ACDC

Comments

A few months before I got sick, this was Nov 1990, I was in the shopping mall. I was always a mall rat, I grew up shopping in that mall. I loved the bookstore and they had a book about Chronic Fatigue Syndrome displayed in there and I remember thinking how it didn't affect my life, so I didn't care about it and passed it up to look at the books on makeup artistry and other things.

Also, somewhere around that time, I was working out with weights and doing my usual workout and I had Oprah on. And Oprah was doing a show on people with AIDS and Cancer and they were all talking about how tired they would get and how they couldn't get off the couch and their kids had to help them. And I remember being totally unable to relate to that level of fatigue. Like it just did not compute. But I never forgot that show because about two months later, I was almost dead from CFIDS. I went from working out and being in top shape to being almost dead in just a few months. So yeah, you remember things.

I also remember my first year of being very sick with CFIDS, MTV had the first season of Real World on. And I would watch it and see how they were all living their lives and having fun and they were all about my age. And I couldn't understand why I had to be so sick that I couldn't get off the couch and they were all doing everything that I would normally be doing. It was awful. And I kept telling myself that next year I'd be fine and be able to be back to my life. But next year never came.
 
Thanks for your thoughts, Carrigon. I remember when I first heard about CFS patients, I couldn't believe that people didn't think they were really sick. I had a lot of compassion for them. I didn't know anyone with it; it just didn't make any sense to me that they would prefer a life of being bedridden. I felt they must be truly sick. It was sort of portentious, almost weird to come down with that same illness later.

Here's hoping that treatment becomes available soon for all of us!
 
I got sick in 1984, so of course the yuppie flu thing really hurt! It made it difficult to tell anyone other than your immediate family. Even after being diagnosed, it was still too hard to explain to anyone. If you did try, it was always the same reply, "but you look fine"? If only we had one distinguishing trait that people could see to identify it, would have made life a lot easier back then! B.E.G. your still #1
 
Back at ya, jimbob. BTW, Muffin found a new hottie. Do you believe that?

I'm so sorry you had to go through that yuppie flu thing. I just couldn't imagine how the patients felt about that. What a rough time to live through! Were you organized as patients then?
 
I belonged to probably the first cfs support group in the country in Newton. Mass. And yes the yuppie flu thing pissed us of to no end! It's been a long 26 1/2 yrs waiting for validation. The support group turned me on to Dr. Gantz, who diagnosed me in 1986. Hang in there girl, Jim P.S. that muffin is such a slut!!!!!
 

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