Occupy M.E.

Cognitive difficulties are part and parcel of ME/CFS. Brain fog, memory problems, difficulty with focus and attention, and reduced processing speed are just a few of the deficits we deal with every day. And cognitive effort can cause post-exertional malaise as readily as physical exertion. For me personally, cognitive difficulties are the most frustrating and frightening symptoms of ME/CFS. My cognitive function is a significant part of my identity, and I didn’t stop working until it was clear that I could no longer perform the cognitive tasks required of attorneys. I fear losing even more function.

Maintaining and improving cognitive function is extremely important for overall health, but ME/CFS patients face extra hurdles. Those of us who are housebound or bedridden do not encounter much new stimulation in our daily environments. Some patients are so ill that they cannot tolerate sight, sound or touch, even in the quiet of their homes. If and when we do go out, crowds and stimulating environments are overwhelming and can make us sicker.

But while plenty of attention is paid to physical therapy approaches that might help stave off some deconditioning, almost no work has been done on cognitive rehab approaches. This is a huge gap in our knowledge, and in our therapeutic approach to ME/CFS.

I’ve been reading about neural plasticity lately, as part of our ongoing effort to help my husband recover from his stroke. The adult brain has the ability to form new neural connections after injury, rewiring itself to work around damage. But it is also the case that function can be lost through lack of use – the “use it or lose it” principle.

ME/CFS patients already have inflammation or other problems in the nervous system, and the necessary avoidance of stimulation in order to prevent PEM probably means that we are losing function because we are not using it. Just like our muscles become deconditioned because we cannot exercise, our brains are most likely being changed by the isolated environments we are forced to occupy and maintain. But I wonder if the brain could recover from that with appropriate rehab.

What can be done about it? I am not aware of any research into cognitive rehabilitation in ME/CFS. I have never been advised by any healthcare provider to take steps to protect my brain health.  As is so often the case in ME/CFS, I’ve had to make it up as I go along.

Here are the things I’ve done which, in retrospect, I think have helped improve my cognitive function. The gains came very slowly, over a long period of time. Most of these activities started as a way for me to stave off boredom. It is only in looking back that I realized they had helped.

Minimize the idiot box – When I first got sick, I watched a lot of television because that was all I could do. Whenever I crash, I am reduced to lying in bed with the tv on (if I can tolerate the sound). But it’s better to minimize watching television if you can. I find tv has a deadening affect on me, dulling my awareness and clouding my mind. I never watch it during the day, and in the evening we usually watch films or sporting events. No sit coms or tv dramas for me. And I completely avoid all tv news because it is both depressing and over simplified.

Listening – A better activity for me than the television is listening to programming. Podcasts are a marvelous way to learn new things and hear different perspectives on issues. Audiobooks are also wonderful. Listening requires a different kind of attention than television, and that variety is important. If you can’t listen to spoken recordings, then try music. It might be easier to listen to music you are already familiar with, but trying new music is also good. When I’m really sick, I simply lie in bed and listen to classical music. It is relaxing and can help me sleep, in addition to stimulating a different part of the brain.

Reading – I was a voracious reader before I got sick. I still love to read, although I’ve had to reduce the complexity and length of reading material. I tend to read a lot of popular novels now, especially genre fiction. I can’t read advanced nonfiction anymore, but I try to vary my reading with general science writing and biographies. If you are able to read, then do. Find easier books or shorter articles. Branch out into areas you might not have read before. Make sure you have adequate lighting (to reduce eye strain) and take rest breaks. Nothing takes me out of my isolated world like a good book, and it can stimulate new thoughts and curiosity.

Play games – I like playing simple games, such as Drop7 or solitaire, or interactive puzzle games like The Room. I can’t tolerate the visual stimulation and speed required for Xbox games, but if you can then there are lots of games to choose from. You can also play games designed to exercise your brain, such as Lumosity or BrainHQ.

Puzzle solving – I don’t know why, but it had not occurred to me to try jigsaw puzzles until last year. It takes me a long time to put a puzzle together, but it is an absorbing activity. Puzzles are both tactile and visual, and use spatial reasoning. I’m not a crossword fan at all, but that would be an excellent activity for some people. I have found word searches to be too boring, but again, it may be a great activity for some people. I was afraid of Sudoku for a long time (because math), but now I love it. There is no math involved, just logic. I spent a lot of time at the super simple level of Sudoku, but gradually got better and better at it. Start at a basic level for any puzzle, and advance difficulty only when you are able. It’s a different way to pass the time and work your brain a bit.

Knitting – Knitting is one of my favorite hobbies, and I know patients who crochet or bead or paint. Whatever creative hobby appeals to you, it’s proven to be great for your brain. Fine motor coordination, following instructions, and learning new skills are all part of craft activities. If knitting doesn’t appeal, there’s photography, scrap booking, weaving, drawing, calligraphy, quilting and on and on. Try something new. For me, knitting reduces my stress and makes me feel productive.

Writing – Over the years of keeping this blog, it has become easier for me to write. It is still the most cognitively challenging activity I do, but it has become easier with extended practice. If you can write in a journal, or send an email to a friend, or start your own blog, it is an excellent way to challenge your cognitive function. When I am writing, time disappears and I lose awareness of my pain. It is completely absorbing, although that means it is also tiring. Stick to what you can do without crashing, but written communication is a great brain workout.

Playing an instrument – This is my latest foray into a new activity, and I can almost feel it changing my brain. My mother played cello for years, and when she died I decided to give it a try. It took many months to find a physical position that I could tolerate, and to build up the strength to play more than a few minutes at a time. But I stuck with it, and I’m so very glad I did. I could already read music, but learning an instrument as an adult is a very different experience from learning in childhood. I love the challenge, and I love trying to improve each time I play. There are so many things to concentrate on at once, and that has improved my ability to sustain focus and attention. I have to be cautious because playing the cello is physically very challenging for me. But it feels so good for my brain, it is hard to stop. I know patients who have picked up the guitar or ukelele (which is apparently easy to learn?). If you played a recorder or other instrument when you were younger, you might consider trying again. You could also sing along with recordings. The act of playing an instrument stimulates a different part of your brain, and you improve as new connections are formed in the brain. It is delightful.

General Thoughts

Obviously, not all ME/CFS patients can do all of these activities. I have to ration my energy among one or two brain activities in a day. Now that I am playing the cello, I am knitting much less. I have simply shifted the activity capacity around, rather than expanded the energy I have to work with.

There’s no heart rate monitor for the brain, so it is tough to know when you are approaching your limit. Severely ill patients will not be able to sit up to solve a jigsaw or play an instrument. They may not be able to tolerate listening to music or audio recordings. Reading is impossible for some patients.

But it is important to do what you can, at whatever level you can comfortably maintain. Being housebound or bedridden is isolating and monotonous. Using your brain in new ways and encountering new things is good for you. Improving at an activity is also very satisfying. Try something new that is simple and easy to tolerate. Build from there as your capacity and interests allow. There may not be any research addressing the importance of brain health in ME/CFS, but it is common sense to do what you can within your limitations.

What brain activities have you tried?