>A video for you

>This is what I have. The video at the bottom of this post really gives a feel for what it’s like to have this illness. I found it on Catherine Morgan’s blog, “Living With Chronic Fatigue Syndrome”. Here’s the link to her blog. http://livingwithcfs.wordpress.com/

Watching the video makes me feel very sad, because I think I try to push it all to the back of my mind, and just deal as best I can with the symptoms, rather than thinking of the illness as a whole. Is that denial? When I’m tired, I deal with being tired. When I have pain, I deal with having pain. When I can’t think, I remove myself from the activity that requires it, like reading or writing or answering questions. If you put all the symptoms I have together, and try to deal with them as a whole, it is too overwhelming and depressing. So I live in the moment, literally. I don’t think or plan ahead at all, because how can I know until the moment if I will be able to do whatever it is I thought about/planned to do.

It’s very isolating, also, because I can’t think when I’m tired, and if I try to go out on my own, I sometimes can’t think how to get back home. I get on the wrong bus, I can’t find the number of the taxi, I can’t think what to do or where to go. It’s easier to stay home. I’ve had some really difficult experiences with getting home, times the service that was supposed to pick me up didn’t, leaving me standing in the freezing cold and snow for hours without energy to find a phone or think of a solution. I’ve gotten on what I thought was the right bus, only to have it take me for an extended ride and me wondering how/if I’m ever going to get home. Once the bus driver made me get off in a snowstorm to wait for a different bus, after he’d told me his was the one that went to my stop. Things like this can take weeks to recover from.

Of course, the thinking difficulty can lead to other problems, too, like running out of groceries if I forget to plan for the times my homemaker just doesn’t show up, or where to put the laundry she did when the dryers in the laundry room don’t work because nobody collected the coins from them, or how to do the laundry at all when the washers don’t work for the same reason. It does make life interesting, if challenging.

Anyway, I hope you watch the video. It’s about 10 minutes long, and can really help you understand what someone with this illness goes through.