DIY Brain Rehab

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.

Brain-BoosterWhat 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?

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40 Responses to DIY Brain Rehab

  1. Katherine Goodman says:

    Audiobooks and reading on my Kindle were my brain saver. Facebook allowed me to stay in touch & expand my world once I got over the fact that I couldn’t do all the things my friends were posting & was able to be happy for them.

  2. Lorelei says:

    Jenny, excellent ideas. I have done many of these, but in the early days reading and writing were too challenging. Right now I am able to read again, although not at the level I did before. My Kindle has become an essential tool as it is easier on my eyes. I can write some again, but it is still taxing, and I am frustrated by my continued misspellings and transposed letters, not to mention forgetting words. My thesaurus is in active use. As a former attorney, I miss the ease with which I used to write and speak.
    I have been feeling well enough lately to think of picking up my violin again, but my fingers don’t work the way they used too! Perhaps knitting is just what I need.

    • Lorelei says:

      And I will apologize right now for not spelling your name correctly!!

    • Jennie Spotila says:

      I understand! I used to study 12 hours a day in law school. I memorized a 90 page outline for my civil procedure exam. During the brief time I was working, I billed about 50 to 60 hours a week which meant working more than 12 hours a day, six days a week (because of course, not all time is billable). When I look at what I can do now versus what I did then, it breaks my heart. I would rather be permanently confined to a wheelchair with my old brain, than to have the physical and cognitive capacity I have now.

      Good advice about trying a Kindle. I have a hard time reading anything on a screen, which means I spend a lot of money on printer toner! I highly recommend knitting! It is very relaxing and soothing, and you can start with the simplest of projects.

      Keep doing what you can, without overdoing it! I hope you can continue to improve!

  3. Sally says:

    Great post. I enjoy Scrabble online and Web Boggle. Also very addicted to audio books 😊

  4. Nita Thatcher says:

    Love these ideas. Jigsaw puzzles can also be solved online. Here is a site I like:

  5. I play sudoku – and can see how my brain is doing by how fast the hard ones go: 6min 30sec or less, and the brain is working. Over 7 min to very, very long times – not working optimally, if at all.

    I write – just published my first novel, Pride’s Children: PURGATORY (with a CFS main character) late last year. Writing is a major daily task (see above for speed – I don’t attempt fiction if the synapses take longer than 7 min. for a hard sudoku).

    I consciously tackle the hard problems that come my way. Selectively sometimes – there’s little energy for this fight – but I learned, for example, all the steps necessary to create a cover for my novel, format it, and publish it in ebook and paper. It took MONTHS, but the brain training was excellent.

    I don’t shy from discussion with husband about finances: money is hard, but necessary – too many women, let alone sick women, let someone else handle the finances. Math is an excellent brain-pusher, and most people can handle the easy stuff.

    Which reminds me – I’ve gotten into the habit of letting other people calculate the check and tip when I go out (rarely) – I need to stop doing that!

    When speed is of the essence, I can’t do many things. If I plug away at them, they happen. So maybe not the check – might annoy the waiters to have to wait for me.

    I’m tackling the house downsizing. With help for the motor part and some of the thinking part, but the first twelve hours (3 at a time) with my helper have resulted in tons of paper being processed and mostly junked, books donated to libraries, etc. – thousands of decisions. I’m paying her – that reminds me to use her well. This house desperately needs it.

    I blog – as often as I can, about once a week.

    And I’m forcing myself to do the tiny bit of exercise I can, so I can walk better.

    If a cure comes, I’ll be in as good a shape for it as I can keep myself.

  6. Ollie says:

    Kindles are great as more like paper than a tablet screen.

    My partner is originally from another country, so I’m learning the language (Hungarian, in Duolingo) which is very hard but probably helps to stop the wheels rusting.

    Best wishes for your husband’s recovery and your maintenance of function.

  7. Anonymous says:

    I see that you recently changed the blog name to Occupy ME
    but in the post you use ME/CFS…..
    just wondering why….

    • Jennie Spotila says:

      Actually, it was a result of cognitive dysfunction. I drafted this post before I decided to change the blog name. When I did the final edits and proofreading, my eyes slid right over ME/CFS. I’m going to leave the mistake, and will try to be more aware in future posts. And in some contexts, ME/CFS will remain appropriate if it is the term used on that context (e.g. how NIH categorizes its funding).

      • Anonymous says:

        Thank you for the explanation.

        I wish there were research on cognitive rehab for ME.
        It seems to be one of the most aggravating symptoms for so many people!

  8. When I was very sick, I could not read; I could write on internet but the fifth year that got too exhausting. I just want to say that if you’re REALLY sick, any brain “work” can contribute to post-exertional worsening of symptoms too. So, listening to movies (couldn’t watch them) in a darkened room was a comfort.

    ON Ampligen, I slowly gained skills back, from being able to read to being able to knit and do cross-stitch. Still can’t speak French (had a field in French early modern history that was all in French in grad school, so I COULD speak French once upon a time). But most of what I couldn’t do came back. Usually suddenly, as a pleasant surprise.

    OFF Ampligen, back in relapse (I relapse unusually quickly, within a year or a matter of months), there it is again.

    So being able to do cognitive enterprises or skillwork like knitting or the piano requires my disease to have lifted somewhat. And then (except for a few things) – it’s back! Each skill comes back suddenly.

    Just want to warn people not to overdo. Because you have a brain-activity envelope just like you have a physical one.

  9. janine says:

    A subset of ME peeps have brain fog because they need more cholesterol in their brain. There are many years of studies that talk about brain dysfunction being caused by a lack of cholesterol. I thought this was common knowledge? The trick is to understand how to get more LDL directed toward the brain. My doctor understands how to accomplish this goal. He has helped a subset of his ME patients in this exact way (and they got more energy too).

    • Anonymous says:

      I was unaware of this work.
      I hope you will share links to these studies.

      • janine says:

        If you are sick and want to get better, call his busy office, make a new patient appointment, and ask him your toughest scientific questions. Sometimes it takes days to get thru just to make an appointment; he is that busy. His waiting room is overfilled with patients.

        If you think that he can help you, then be patient and give him the time to derive a customized treatment plan for you, When you start to get better from his treatments , and can see/feel how they work for you, then you have an option. If you think there is still value in publishing his findings, then volunteer to help him get his research published. Be part of the solution. Be proactive. Help others!

        Dr Robert S Fredericks has devoted his entire career of 40 years to helping patients (many whom it’s their last stop after spending years of fruitless doctor shopping); many are severely ill. He works tirelessly to help paitents from 9am – 6/7 pm 5 days a week. He spends his ‘free’ time reseaching and looking for new ways to help his patients.

        Regarding published research, don’t we have plenty of that already? (are we any closer to getting FDA repurposed drugs approved drugs from reading the existing research?). Reseachers have already spent years, and millions of dollars (private and tax payer funded); I don’t see any new treatments or commit dates when treatments will be available….do you? The published research conclusions seem to say, ‘we need more money’, ‘we need more research’. It’s just the same old thing this community has heard for years.

        Here is a video from 2011, of Dr Fredericks, as the first installed doctor at the WPI. He is in another location now, but still in Reno.

        • Jennie Spotila says:

          Thanks for sharing this information Janine. Many of us are proactive, try to help others, and continue to push for more funding and more published research. Many of my readers cannot do such things, and continue to search for solutions. Thanks for sharing yours.

          • janine says:

            Hi Jennie, Thanks for your reply. Regarding mine, I was specifically responding to the person who posted as “Anonymous”; not the general ME community. I am fully aware of the long history of this illness and it’s impact.

  10. Tweety Gonzalez says:

    I’m with Mary Schweitzer that cognitive exertion cause me PEM. I often get an acute headache when trying hard to read, calculate, talk, write and so on. Listening only is harder than watching a movie, because I have fewer cues to keep my focus. Often I watch movies with subtitles, so I have an extra cue. It’s hard enough following the story, remembering who the characters are and recognising their faces.

    I used to work as a researcher in social sciences and education, but every time I relapsed within 2 years. It was just too hard to think. For me, there is no rehab, but I might improve on POTS medication, or indeed on Ampligen if I could access it. It’s perhaps like exercising, in that I can’t rehab physically either. It only gives me PEM and a lot of pain.

    What did get better since I stopped working completely and getting enough rest, is using my intuition. Not the mental focus of meditation, but tuning in on feelings and bodily sensations, and relying on gut feeling in decision making. It doesn’t wear me out to “train” my intuition by using it again and again. Of course, when I crash physically, nothing is possible and I just need to rest.

    If I could train my mind again, that would certainly mean I was going into remission.

  11. Diane says:

    I have an puzzle app with a wide selection of themes. What I like about it is that there are 4 levels from very easy (24 pcs) to more challenging of 150-200 PC’s.

    I was seeing a physical therapist for several year for neck and left shoulder/rotator cuff pain. She also used a gentle technique that would drain my Lymph Nodes. She billed this process as “Brain Retraining”. Since my recent hospitalization I had to see Dr Neuro Gastro who said we would run tests to determine if my intestinal muscles have stopped working much like my esophagial muscles have made it difficult to swallow? She said something about doing some “brain retraining work” to return the muscles to Function properly. Perhaps the phrase “Brain Retraining” is the new code for CBT-whatever? I don’t know what to make of this?

    Personal need to know regarding the audio books. Can one listen to a downloaded audio book while in traveling by air? I have not flown on a plane since the early 90’s.

  12. Kathy D. says:

    I try to read the NY Times every day, although sometimes they pile up and I am very selective about what I read. I do watch TV, including news commentary shows. I don’t watch anything aggravating.
    I watch dvd movies, although I can’t watch anything with fast movements or flashing lights or car crashes, etc. I can watch mysteries and other dramas, but sometimes I just watch easy, slow films.
    I do the NYT crossword puzzle every day. If I’m overtired, the puzzles later in the week, which are harder, can become too difficult to finish. But I am dogged and I try.
    I write sometimes for an independent newspaper, where I help edit and proofread.
    I have to be very careful not to push myself. And right now I’m exhausted because I did too much this week and now have PEM and muscle pain.

    For the writing, cognitive problems come in. I have to write down everything, every idea, quote, point, statistic in Word in some kind of order as I can’t retain information well. Then I work from the written words. So something may start out with 2,000 words and be whittled down to 750. I have to see everything and then cut and tweak.

    And if someone who writes quickly asks me to write something short, it takes me a long time because I have to do research all over again. It’s as if it’s a new topic even if it isn’t.

    Then add in that I often cannot sleep or can only sleep for three hours — and then I have to write or edit nor remembering anything I’m reading for research. So I have to read it repeatedly and then write and keep checking back with the facts. Fun it is not!

    And if I hear someone speak, I can’t tell anyone what was said unless I take notes. True of TV shows or movies, too.

    Living with this disease requites constant juggling and readjusting. I can’t do what I could do years ago. My doctor said it’s a slowly progressive disease.

    And music? I forget to listen to it, to put in dvd’s. I have to remind myself. And often I want quiet orchestral music, mellow jazz rather singing.

  13. Ron says:

    Hi Jennie, I was a very good poker player before ME/CFS struck 15 years ago. Poker became a difficult task and much of the fun of poker disappeared for me. As a result, I began to play less and less. However, about a year ago, I decided to play more often to determine if I can still win. I found that I can still be a successful poker player by taking a half pill of pain reliever periodically during the poker game. It helps me to focus and concentrate which is very important when playing poker. It feels gratifying to still be good at something that I was good at before ME/CFS. The downside is that pain relief plays havoc with my digestive system so I still must limit my days of play. However, I do get some relief with Norco and can almost feel as sharp as I used to, if only for a short time. I believe Norco reduces the pain I feel which allows me to focus and concentrate and gives me more energy to play.

  14. Lauren says:

    Jenny, do you have any advice on how I can prove to family that PEM as a result of the mental exertion from phone conversations is real? I have explained infinite times but they continue to take it personally and continue to talk well beyond my limits. After trying to be clear with boundaries, they are ignored and then it’s easier to endure the conversation Then cause an argument which will tire me further. I have been struggling with this for 15 years so it will never get through to them. Should I send some information or articles to them or simply accept they don’t have the capacity to understand?

    • annie says:

      Would this help from a document on the the hummingbird website,

      “It is common for people dealing with M.E. patients to pay close attention to the fact that a patient with M.E. has to limit physical overexertion, but to not fully understand that excessive sensory input and cognitive exertion and other factors can make the patient just as ill as excess physical activity.

      One of the main misconceptions is that while walking a few steps requires additional bodily resources and cardiac output, time spent thinking, looking, listening or experiencing other sensory stimuli does not. This is not the case. Not only physical effort, but also cognitive effort, requires additional resources which an M.E. patient may not have. The brain contains some 100 billion neurons connected to 10,000 relay stations and this enormous electrical activity creates a massive need for energy and other bodily resources. The brain uses up to 25% of the entire body’s demand for glucose, 25% of the blood pumped from the heart goes to the brain and the brain also needs 25% of the body’s oxygen supply. (Blood supplies nutrients like glucose, protein, trace elements, and oxygen to the brain.) So of course, every extra second of ‘electrical activity’ – every thought, every feeling, every noise heard or sight seen – requires additional cardiac output, makes additional oxygen and glucose demands, and so on, in just the same way as does a physical activity such as walking; if not more so. So in addition to physical activity, the list of things that can cause similar severe relapse in M.E. patients also includes cognitive exertion, sensory input and orthostatic stress; anything that makes the body work harder or have to adjust in some way (Dowsett n.d. d, [Online]).”

    • Jennie Spotila says:

      What about citing the IOM report? Pages 78-86 describe PEM, including that cognitive effort causes it as well as physical effort.

  15. Jenni says:

    I wonder whether part of the reason there isn’t more research / advice on this is because it’s not recognised as much by doctors? When I said I had cognitive function problems to the first doctor I saw for a diagnosis, they wrote in their letter that I’d reported this but that because I talked fluently and used complex / longer words they didn’t find evidence of it. What they hadn’t done was ask me / my husband what I was like before I got sick (not to be big-headed, but I was very very smart). They also didn’t ask whether functioning at that level would impact my health later that week (it would, especially given the physical energy of getting to the appointment).

    I found my cognitive functioning improved when I got a power wheelchair and when I decided to spend most of my time lying down (helps with orthostatic intolerance). So like you said, I can’t use the same (limited) energy twice. I can now do paid work 17.5hours a week and study / do other higher-level cognitive stuff for maybe a further 15-20hours a week. Which is great, but also means I’m doing about 1/3 the cognitive stuff and probably less than 10% of the physical stuff I was doing before I got sick. I’m classed as severely affected btw.

    I suspect that, unless you’re so incoherent that you appear drunk / like you have a head injury, many doctors assume ME patient’s cognitive functioning is fine. I think they also don’t recognise that preventing decline of cognitive function is as important as preventing physical function loss. If I see a new doctor I often get the ‘physical therapy lecture’ (taking care of my body), but when I say I work I’m often given looks that suggest they think this is incompatible with the level of illness I’m reporting (ie that I’m faking) not that this is something to be encouraged because it means I’m taking care of my cognitive / mental health.

  16. Kathy D. says:

    For Lauren, I would say that you have to set firm limits on phone conversations with your relatives. I’d say at the start of the call, “I can talk for 10 or 15 minutes,” whatever your limit is. And then enforce it.
    When the time is up, say I have to get off the phone in a minute and then if it goes on longer than that, say that you have to hang up and say good-bye nicely and then hang up. You have to protect your health. These limitations are real.
    If you don’t protect yourself, no one will do it for you and also no one will take it seriously.
    I shut my phone off most of the time and leave on my message machine, and I call back the priorities. People email me when they want to contact me and tell me to call them. I get a lot of telemarketing calls that can start early in the morning, so I don’t want to keep the phone on. Also, the ring bothers me.

  17. Amy says:

    I used to be a voracious reader too, and I find that listening to audiobooks is a great substitute (and supplement for podcasts) when I’m unable to read because of a headache or nausea – or when knitting! I love – it’s a site with free recordings of out of copyright books, including lots of short fiction and non-fiction. (Some readers are better than others, and hey, it’s free, so you can poke around.) I also get free audiobooks from my library – great when it’s impossible to get to the library in person.

  18. Barbara says:

    When I’m bed-bound, I use my imagination and recreate an activity I’ve loved and can no longer do: kayaking, rowing, lap swimming, riding. I am slow and deliberate, walk out into a pasture, feel the sun or breeze or rain, the ground under foot, the leather halter in my hand. I breathe slowly, relax, submerge myself in the experience.

    Along those lines, I sometimes recall a crisis or celebration, and walk through them in memory, sometimes finding ways that, knowing what I know now, I might try differently. Or with the celebration, I try to bring to mind things I didn’t notice or think of what I’d like to say to those folks now.

    Love podcasts, esp Selected Shorts.

    Some days, I stay aware of camera on phone and go through the day snapping pix that try to capture my day. Next morning, or sometime, I delete the (many) klunkers.

  19. Jody K says:

    Hi Jennie –

    Thanks for this great post…

    I’ve had ME since 2/11 and depending on what I can do at any time on any given day (it’s so damn variable) for at least an hour every day – often for more – I play guitar, do woodworking, sing or write music. None of them are too much exertion but I need to limit my time. Podcasts are a lifesaver for the morning and afternoon rest periods. Books and reading are a lot more difficult, and I especially miss the deeper non-fiction that I used to be able to read… ah, no more of that for now. But Aeon, Farnum Street, Brain Pickings and the Edge websites and essays do the trick for now.

    It’s interesting – when I’m in the process of doing something like these light activities, my symptoms are very light – but as soon as I stop, especially if I’ve done too much for too long, they hit me like a truck. So on the one hand, it’s good to stay active in whatever ways I can – but I pay the price if I do too much – and never know that limit until it’s passed.

    Thanks again

  20. Steve Hawkins says:

    I can’t imagine how anyone on FB and email can do anything else. I stopped for an evening to update the computer to pay some bills; then today I had a hospital appointment. Now I’m 3 days behind with notifications, and emails to answer. Almost every one requires looking up and reading linked references and checking them for truth. Then carefully replying, as often as not, only to have my work deleted by the recipient. Such is the daily round when your brain goes only a tiny fraction of the speed of other people’s. Still, I’m certainly learning loads, and, as I can’t stand up without gasping for breath after a minute or two, there isn’t much else I can do anyway.

    Podcasts, are a wonder of the Age, as are youtube and Wikipedia. From my bed I can find out how to do just about anything in the Universe. Except, not fix my slow brain, or M.E. Yet! xx

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  22. N says:

    I am a lurker/first time commenter. Thanks for this post. It helped give me further ideas to keep my brain active.

    I think there are medical studies to back up most of your suggestions. But from personal experience, I can say that the cello is a beautiful instrument to play. I only played one year in middle school. But the tones and vibrations are so calming. I hope you find it worth the effort to continue learning and honoring your mother.

    I can do most of the things on the list. As others mentioned, it is the method that is critical. I work very minimally scoring standardized tests. It requires a supreme effort, but no SSD, so it helps pay for my supplements. I also crochet. I learned from a left handed relative, and I am right-handed. I find it often helps me solve problems. I have yet to make anything really worthwhile, but it calms me. Reading the Bible is most helpful. Right now, I’m in the Psalms and it is really beautiful since they are really songs and prayers.

    After dealing with this for 15 years, the key for me is to find joy. Sometimes, I have found joy in just accomplishing some chore that has been on my list for weeks (more like months). Regardless, I set my levels of productivity and not others. I always found that interesting, how when I was well, I didn’t tell others what to do with their lives, but when I became ill, suddenly they could tell me.

  23. kathy d. says:

    I am finding that my written work is taking more time. My thinking on how to edit someone else’s piece is taking me longer. I find the right way, but it’s taking a long time, relative to other people’s thinking.

    I’d nip in the bud people telling a ME/CFS sufferer how to live our lives. We’re the only people who know our limitations. Or I’d say a live-in partner, friend or relative may know, too.

    I do have to keep explaining (or I don’t) why I have to take a cab to an appointment and not wait for two buses each way even if it costs more. Or why I have to run up a library fine because I don’t have the energy to walk there and cross a big avenue block, where the crossing is a mess and I’m afraid of falling. And I have to go another day.

  24. kathy d. says:

    Does anyone have this problem?

    Since I have so much trouble sleeping and falling asleep, I am often awake at 4 or 5 a.m. My heart starts racing and I get very hyper. This is true even when I haven’t had caffeine or used any allergy medication that gets me hyper.
    And I get very wound up about things that are happening in my life. Overly so.
    Can anyone relate to this?

    • That’s real common with this disease. There was a study years ago that showed alpha (awake) waves intruding on our sleep, so we never got into REM sleep (which is the refreshing type), and then during the day, delta waves intruding on our waking hours. All mixed up. Do you have a doctor who knows how to treat ME (or CFS)? If you are on FB, there are some support groups with patients helping other patients.

    • Tara Aders says:

      Hi Kathy,

      It’s my theory that this is caused by low blood sugar, one of the main symptoms of which is a racing heart, partly because low blood sugar causes an adrenaline release. (Adrenaline is involved with blood sugar regulation.)

      Many of us have insulin resistance, and low blood sugar episodes are part of that.

      When this happens to me, I put a little bit of sugar on my tongue. Within ten minutes I’m sleepy again – which doesn’t say much for my insulin resistance 🙁 You could also try sublingual glucose pills, usually sold to diabetics. Maybe swish your mouth out with water or at least have a sip to wash away the sugar.

      You could keep the supplies right by your bedside so you don’t have to get up.

      Hope this helps 🙂

      • Tara Aders says:

        BTW, this is definitely a hack – doctors or nutritionists might think it’s unhealthy. But hey, so is not sleeping!

    • janine says:

      Hi Kathy,
      Regarding the heart racing, here is my suggestion to try in a fun little experiment. Buy 4 individual servings (about $1 each) of Vega Sport Electrolyte Hydrator. For one 24 hour period: drink 8 full glasses of water (and use 1/2 serving per glass of water). Drink one glass upon rising, one glass right before you go to bed at night, and drink the remaining 6 glasses spread evenly through out the day/evening. This process has helped me immensely, especially in the summer months. If this works, then you may purchase the product in a more affordable tub size, and use a 1/2 scoop to measure out a serving size. Please let me know if this helps ( I hope it does). Take Care!

  25. Kathy D. says:

    Yes. I do have a good doctor who is quite aware of the sleep disorder here. I take sleep medications, which sometimes work and sometimes don’t. Or they work for a few hours and I’m up. Always sleep in segments.

    And I explained to him how I get hyper and my heart races at 4 or 5 a.m.

    And my (in)ability to deal with stress! I keep the phone off.

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