Wednesday, January 18, 2012

Being a Writer with Chronic Fatigue Syndrome

This post was going to be about copyedits, but other things have intruded, namely my Chronic Fatigue Syndrome. I try not to talk about it much, but on days like today, where the exhaustion got so bad I could barely hold the pencil to mark up my copyedits, there's little else I can think about. I've been sick since I was a freshman in college, over ten years now. I try to spread awareness of what CFS is when I can. I know the name makes it sounds like I just get a little extra tired or take naps in the afternoon or something. I go to a support group sometimes and the best way I heard to explain it to people is this: it's like the last day of having the flu. You still have a fever, your body feels weighed down with lead, you're not very functional. Of all the things in my life--being a wife, mother, writer--it's the CFS that defines me the most. At one point I had to use a wheelchair because I was unable to walk.
Last year I was well enough to start going on short ten to twenty minute walks, but unfortunately I had to stop taking a medication that was helping and I've relapsed. This means lots of time on the couch, maybe venturing out of the house once a week for a couple hours. I go on lock-down and try to wait it out until the energy comes back little by little.

So. I try hard to keep a positive attitude. It's been this bad before. I know how to adjust my expectations and muddle through. There's so much in my life to be happy and grateful about. A wonderful family, healthy son, loving husband. Glitch is coming out this year, and people around the internet seem excited about it. I'm so lucky to be able to be a writer in the first place, a job I can do from my couch, which I know full well is a rare and precious thing.

And the copyedits are going well! I'm about a third of the way through and I have 8 days left to get done. Even if I take today off just to rest, I should be able to finish on time.

If you want to know more about CFS, here are some links:
- fellow author (Seabiscuit, Unbroken) Laura Hillenbrand talking about her debilitating CFS
- A quick overview here

5 comments:

  1. Hey Heather. I just wanted to say you are awesome. I've had Chronic Fatigue for 2 years now, and my doctors can't figure out what the heck is going on. So I know how it feels! Keep your chin up, love the amazing work you do, and celebrate the fact that you have been successful despite it all! :) :)

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  2. You are always so positive. I know you're honest, but you work so hard to not fall into a pool of pessimism. That rocks.

    All that said, I'm so sorry. Sorry the fresh energy gave way to a relapse. Sorry you're on the couch again. Sorry you have to do this.

    I pray it passes quickly, and you regain strength and freedom again, and the world expands.

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  3. Hey Lindsay, thanks! And yeah, I know well the rounds of doctors who can't pinpoint anything when you're like, but this is interrupting my LIFE! At least writing is something we can do from our couches :)

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  4. Amazing stuff, Heather! Going through college, writing a book and being a Mum isn't eeasy for lots of people, and you've done it all with CFS. It definitely makes me think twice about whining about being too tired to do anything. My friend suffered with CFS throughout high schoool, it's not as bad for her now, but it meant she had to give up crosscountry running, something she loved.

    All the best for the next couple of months as Glitch is getting ready for release. I hope your CFS doeesn't become so unbearable for you, I know I'll definitely be thinking of you as well!

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  5. Chronic Fatigue Syndrome is very harmful for health. It is almost body part in disease. Thanks for sharing.

    Chronic Fatigue syndrome

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