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.
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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.