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Chronic Fatigue Syndrome: 10 Things Not to Do if You Have CFS

By HERWriter
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Chronic Fatigue Syndrome related image Photo: Getty Images

There are of course a million things that you can't do, and another million you shouldn't do, if you're flattened by Chronic Fatigue Syndrome. Here's my personal list, learned the hard way. These are gleaned from my early years with this CFS, before I'd learned--well, anything really--that could help reduce symptoms.

Not to say I didn't enjoy this stuff. I did. But each of them piled on top of the fact that I was already so ill and depleted I could hardly stand, let alone think, contributed to my demise. I'm still digging out.

1) Don't ignore signals saying it's time to rest.

Don't wait till you can't function. Vibrating, numbness, brain fog, dizziness, just to name a few, all bear a message. If you rest, some of them will ease up. Some will go away for awhile. If you barrel ahead, they'll increase until you're physically and mentally unable to continue and drop like a rag doll.

2) Don't go out visiting if you can avoid it.

I know you love your friends. But you're sick, and you won't get better staying on your feet. If you get so sick that you can't have visitors, you will really miss your friends, possibly for a very long time.

3) Don't agree to take over a Sunday school class.

I was a sucker and I knew it. But I liked being needed and I liked being asked. I told other overworked people they should slow down but I wasn't any good at it myself. I taught the class and my energy meter tipped further into the red.

4) Don't agree to lead a homeschool support group.

But they needed me! That's what they told me and that's what I told myself.

It was some of the best fun I've ever had. But you can't go to bed as a mindless zombie to regenerate, if you're hosting a meeting or leading a field trip. And going to bed as a mindless zombie was for a long time all that helped alleviate my CFS symptoms.

5) Don't do a monthly newsletter for anyone for any reason.

I did one for my church and one for my homeschool group. I found great pleasure in this. But I remember a day when I was happily working on a homeschool thing and looking out the window ... I pictured myself lying on my face. Dissolving into the ground. Wished I was. But ... I really wanted to finish this project ...

I picked wrong. I should have taken my zombie head to bed.

6) Don't take on the job of moderator for an online forum.

A friend of mine needed help moderating and I said "Sure!" As I usually said, to almost everything. I enjoyed the challenge and enjoyed the camaraderie. Didn't enjoy the fighting, though.

One day, during a particularly difficult time on the forums, I happened to click wrong on my computer. A picture of me in my twenties popped onto the screen. Big naive eyes gazed at me from the monitor. I looked at that vulnerable girl and thought, "No. You don't have to put up with this." I told my friend I'd be quitting at the end of the week.

Did I miss those forums? Very much. Painfully so. But I reiterate, you can't go to bed as a mindless zombie and get your rest, if you're breaking up fights on a forum.

7) Don't start your own forums, and try to run both simultaneously.

One brilliant brainstorm of mine was to start a forums on a website I and my husband owned. I thought there would be less fighting on Forums #1 if some members went to Forums #2, where I would allow no fighting, and didn't mind kicking malcontents off. But the fighting still went on at Forums #1 and a new type began at Forums #2. This time the zombie won. I shut my forums down.

Did I miss the interaction with my assistant moderator, the familiarity and banter? Oh yeah.

8) Don't offer to tutor high school kids.

It wasn't that I was dying to tutor teenagers, after spending hours teaching my own. But we could use the extra money so I took a student for an hour, once a week. I was getting sicker though, and finding it harder to concentrate. This tutoring fortunately only lasted a few months.

9) Don't offer to write free book reports.

Well, we had this website, you know? So much scope for things! I'd agreed to write reports on some homeschooling books, in return for free copies. Some of these reports are still floating around on the web. I know because at my sickest and most invisible I would google myself. To see my name, to see a connection, even an old, dead one. To remind myself I used to have a life before ... I didn't.

Didn't know whether to laugh or cry when I saw those book reports, and a couple of other entries referring to our website of a decade ago. Laughed because the memories were great. Cried because that's all they were. Memories of a life that no longer existed, except in wispy fragments in cyberspace.

10) Don't be riddled with guilt for saying "No" to perfectly wonderful requests. Say "No" and give yourself a chance to heal.

This one speaks for itself. Sadly, rest alone will not heal you of all your CFS symptoms. But without rest, healing won't stand a chance. Let the zombie head win for now, so that it doesn't win for good.

Visit Jody's website and blog at http://www.ncubator.ca and http://ncubator.ca/blogger

Add a Comment2 Comments



I have also found that I'm better off gluten-free. Some symptoms decrease and some disappear altogether without gluten. In my case, going gluten-free doesn't take away all the symptoms. But it sure makes a big difference.

January 25, 2011 - 9:40pm
EmpowHER Guest

Have you tried going gluten free for your chronic fatigue? It has changed my life. Seriously. All my symptoms are gone.

January 25, 2011 - 9:27pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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