By Katrina Berne, Ph.D, clinical psychologist & PWC
(Editor’s Note: Cognitive impairments are featured in research and clinical definitions for CFS, ME/CFS and ME. To many people, cognitive problems are among their most disabling symptoms. Some methods of cognitive testing, like those for information processing speed, attention and concentration, find reproducible deficits in patients compared to healthy controls. These tests can also be useful to support applications for vocational disability. )
I have a Swiss cheese brain. Seven firing neurons. Cotton in the synapses. One moment I’m logical and rational, working with a financial planner with my materials organized and pre-formulated, intelligent questions. The next minute I find my keys in the freezer and I can’t remember my middle name. In short, my brain has ME/CFS.
I have learned some cognitive coping mechanisms (tricks) that help keep me on course when I have complex tasks to do, or even simple ones.
I do them at my best cognitive time of day. It’s not the same every day, but when something in that brain of mine lights up, it’s time to use what I’ve got.
I do tasks in small steps, breaking them into their smallest components. Sometimes they are painstakingly tiny steps, sometimes strides. An entire book starts with one sentence. Doing the laundry starts with throwing it down the basement stairs.
I have a system. It might not make sense to anyone else, but it works for me. I keep my info on the computer as much as possible and out of my file cabinet. I have only the essentials in my paper files, which amount to about 20 percent of the number of paper files I used to have. I can do a search of my computer’s contents to find stuff – not so with a filing cabinet.
I write everything down. Everything.
I stop when I’m overtired or in brainspin. There’s no point in whipping a lame mule; I know I’m not going to accomplish anything beyond what I’ve already done. Close the book, put my laptop away, close my eyes, just stop.
I set a timer. When it says “ding,” it’s time to stop. Period.
If I try to read an article and none of it is sinking in on my second or third try, I put it away for another time. I can’t force learning to happen, but am overjoyed on the occasions when my brain is willing to learn.
When I need to remember something but can’t write it down, I repeat it aloud to myself. I walk into the next room for scissors and tape saying “scissors and tape” over and over. Repetition works.
I say “no” to tasks that are too complex. And to those I really don’t want to do, since dealing with cognitive dysfunction or resistance is tough enough without combining the two.
I avoid deadlines whenever possible. Too much pressure. Pressure is counterproductive.
I take frequent breaks. Even when I don’t want to, I know I need to.
I look stuff up. I don’t have to reinvent the wheel. Hooray for the Internet. Hooray for Google. I don’t know what people did in the dark ages.
I am thankful for the parts of my brain that still work well and for the times when I am able to think and write clearly. I hope this is one of them.
Katrina Berne, Ph.D, is a clinical psychologist specializing in telephonic therapy with people with ME/CFS who are housebound or unable to find knowledgeable therapists in their geographic areas. She is the author of Running On Empty; CFIDS Lite; and Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Disorders. She has served on the Board of Directors of the CFIDS Association of America and lectured widely on the disorder. She wishes someone would figure it out already so we could all get back to what we were doing.