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Going Chronic With Chronic Fatigue Syndrome

By HERWriter
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In the fall of 1999, I went chronic with CFS.

After six weeks, my most recent bout of chronic fatigue syndrome did NOT disappear. Rather, it stayed with me, symptoms not quite so severe as they'd been, but there all the same. All the time.

I tried to go back to regular life. Obviously a mistake but I had no way of knowing at the time. I still didn't know what was wrong. Didn't know I had CFS.

I felt like I was shaking most of the time. It was hard to focus my thoughts, to think my thoughts. To understand what other people were saying, to speak. Working with numbers got difficult. I'd never been a math whiz, but I'd have said I could handle myself in the numbers arena. Until now.

Noise bothered me. Flashing lights, sudden movement, action on TV would jolt through me and I'd have to look away. Eventually I'd be chased by my symptoms to my bedroom.

One afternoon, I made a list of things for my husband Alan to get from the store. Only four things on the list. I'd had an earlier, scribbled-on list that I decided to recopy for him to make it easier to read. Simple, right? I recopied the four items, gave it to him ... and went to bed.

Just from this tiny exertion, I felt like I was going to shake to pieces. I clung to a pillow and vibrated for half an hour till it became more bearable. It didn't stop. I still had what felt like adrenaline racing through me, my thoughts fragmented, face numb ... eventually I went to sleep.

When I woke up an hour later, the symptoms had lessened, the shaking had eased, and I felt ... not quite so bad.

This was my life with CFS.



I spent 15 years losing the battle against CFS. Two years ago, I found treatment that worked for me and now I am making a comeback.

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I made that mistake for a few years after that time period unfortunately.

Pacing is invaluable. Not all treatments work for all people with CFS, but one thing that seems to help us all, is pacing and regular rest periods. They are essential for any of us to have a chance to get well.

I'm glad you also discovered the importance of this, and that it's continuing to make a difference in your life.

July 28, 2009 - 12:12pm
EmpowHER Guest

I made the same mistake for the first year of CFS (not knowing I had CFS) -- I tried to keep up with my "old" life. I know it made everything worse, and my family really suffered that year. What a blessing when I discovered pacing! It may have caused me to really restrict my activities, but at least I was no longer a zombie just going through the motions. There's a good article on pacing at www.chronic-fatigue-community.com/Pacing.

July 28, 2009 - 8:51am
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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.