ME/CFS Awareness Day!

I would wish you a happy ‘Awareness Day’ but if you’re aware of chronic fatigue, you probably either have it or live with someone who does, and that’s hardly a cheerful thought. I got an e-mail about it (it’s like being part of a secret club! That no one wants to join!) that gave me this link with information about the day. Apparently blue is the color of ME/CFS awareness, so I have changed some of the colors on the blog to reflect that. Also, here’s an article I’ve been meaning to link to (it has two parts) about the lack of understanding and awareness of many medical professionals with regard to chronic fatigue. If you have a good doctor, take a moment to thank your lucky stars.

 

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“Yes, I’m tired all the time too.”

Do you remember the first time someone said that to you? The last time? As everyone who has ever tried to explain having ME/CFS knows, most people just don’t get it. That their tired and your tired are not even on the same planet. It cannot be fixed by a nap, a good night’s sleep, or by a schedule change. This is the metaphor I came up with to help people understand the difference and how it sounds to me when they say that:

I ask her to imagine that she has just taken a final exam on which she performed poorly when she expected to do well. Of course she is disappointed, sad, maybe even angry. Then I ask her to imagine that we are having a conversation. I tell her that my mother has died, and that I am just devastated. She replies that she knows exactly how I feel, because she just did poorly on a test. Then I can either let it hang or spell it out: this is difference between us saying “I’m tired.”

It’s difficult to imagine someone actually reacting that way, of course, because most people can imagine how sad they would be if their own mother died. And I think that many of them wouldn’t make the comparisons they do (“Yes, I’ve got that too–it’s called being lazy”) if they could as easily imagine what is felt like to have CFS, and this is how I try to help them do that.

Feel free to borrow the metaphor if it works for you. 🙂

Sleeping . . . at night?

In an effort to shift my disastrously irregular sleep schedule, I got up at eight o’clock this morning and went out, thus proving that I don’t actually shrivel when exposed to direct sunlight before noon (who knew?). Nature saw fit to reward my diligence by providing me with the sight of two goldfinches (I love watching birds). I have provided a picture (not mine, but public domain), so that you don’t even have to go look them up to find out what they look like. 🙂 Isn’t he pretty? Anyway, I am hoping to be able to sleep at night, also known as that time when normal people sleep, so that I can be awake when they are and have more socialization. I’ll let you know how it goes.Image

What do you do (when you can’t do anything)?

One of the mainstays of my entertainment has been books on tape. There have been times when I was too tired to sit up and watch something, and even to lie in bed and read, but listening to a book is a degree easier than either of these things. If you can’t go anywhere with your legs, at least you can travel in your mind. And if you can find a series you like, even better!–you won’t run out material for a while. Some of my favourite series have been James Herriot’s books (such as All Creatures Great and Small) as read by the actor who played James (Christopher Timothy) in the television series of the same name. I’ve been listening to those since I was a child, home from school for weeks with walking pneumonia. Another series I have really enjoyed is the Aubrey/Maturin series, by Patrick O’Brian. (I have one reader I prefer to another, but I’m not sure which–it might be Patrick Tull.) And the Redwall series (Brian Jacques) is good on tape–they have a cast to do the voices, including the author. If you have any recommendations, let me know!

Introduction

This is a blog by and for those suffering from chronic fatigue syndrome/myalgic encephalomyelitis (and anyone else who cares to stop by). I am writing this blog with my sister, so we have decided to write under the name of a pair of sisters from Jane Austen’s Emma: Isabella and Emma Woodhouse. In case you were wondering, it’s Emma writing this one. We burst out upon the world with little or no fanfare, but we hope to garner a few readers along the way. We will be writing posts about our day-to-day experience of CFS, and sharing our thoughts, feelings, and frustrations about living with this illness. We may even branch out into discussion of what we’ve tried; what helps and what doesn’t. A movie review or book recommendation may occasionally pop up. But if you know anything about chronic fatigue, you know we can’t go making extravagant promises about writing regularly. I’ll end with that caveat. Please come by, and comment if you like!