The first guy in the article has the really, really bad form of it. People who have it that bad can’t get out of bed. Thankfully I’m not that sick!
I’m more like the second guy in the article – Stephen Shimshock.
Too much sound or light can make my fatigue worse. I don’t drive except in my small town and only on good days when the fatigue isn’t as bad. He can walk 2 blocks. I can walk farther than that when I go run errands. Like walk around Cosco and then Grogery store. But I can only do that maybe twice a month. And after one of those days I have really bad fatigue for a day or two. Sometimes such bad fatigue days I have to rest in bed. Physical exertion is very hard for me. I can stand on a good day for 20 minutes. But then I need to rest for an hour or two, sitting and watching TV.
Before Chronic fatigue I use to work 10 hours straight on the computer. I use to swim fifty laps every other day in the pool. I was very social and high energy person. Those days are gone. Now since the Chronic Fatigue on a great day I can work on my laptop for two hours. Rest for a couple or hours. Make lunch and stand for 15/20 minutes while cooking. Then rest for an hour or so (I can email and check Facebook on my phone which keeps me sane while I take it easy.) Then work on my computer for another hour or two. Rest for 30 minutes. Then do a couple loads of laundry. Rest for an hour. Make dinner and stand for 15/20 minutes. Then rest for an hour. And maybe get an hour of computer time in before I go to bed. That’s a totally awesome great day for me! Now during all that time I’m still very tired and feel like I have a bad case of the flu. Normally I have issues with sleeping and have a lot of insomnia nights. On a great night I get 5 hours of sleep.
I don’t have great days every day. Maybe once a twice a week I have a great day. Every day is different. Every day I never know how bad my fatigue is going to be and I have to change my activities for the day depending on how I feel. I have to keep track of my energy level as the day goes and I have to pace myself accordingly. If I overdue it I will pay the price and I may have to spend the next couple or few days in bed.
Talking to someone on the phone for 20 minutes tires me out. Talking to someone in person for longer than 15 minutes tires me out. Any physical activity like walking up and down stairs, carrying laundry, standing and cooking for 15/20 minutes tires me out. Working on the computer tires me out. Reading tires me out. After all these activities I have to take breaks. A break for me is sitting and watching TV/movies. If the fatigue is really bad I have to lie down in a very dark, quiet room. Most days at least once a day I have to go and lie down for about an hour.
I’ve been sick with Chronic Fatigue for five years now. I’ve learned not to get upset about all the things I can’t do. I do as much as I can on good days and I try not to worry about the things I wish I could be doing on bad days. 😉 It’s a tough way to live but there are people that have the disease much worse and are bedridden. I’m thankfully that I’m well enough to walk around, get some things done, and enjoy the things I can do.
And that’s what it likes to live your life with chronic fatigue.