arrow39 Comments
  1. Alicia Butcher Ehrhardt
    Jun 30 - 4:18 pm

    I do all this BUT having it in a tiny 3-step method (I just wrote it on a card) will definitely help simplify the decision process.

    I can’t make good decisions when I’m tired – and I’m tired all the time. The reminder may help.

    I summarized it:

    1. Smile and breathe

    2. Pick next tiny step

    3. Pull forward with:
    Pleasure or Pain

    • Johannes Starke
      Jul 01 - 9:46 am

      Excellent, Alicia. Having little lists and reminders helps me, too.

  2. Jan Palace
    Jun 30 - 9:30 pm

    I am a counsellor by profession but have had to give up work because of the effects of ME & fibromyalgia on my potential to commit, not only to the regular face to face time with my clients every week but to everything else that has to be done to keep my practice within the ethical guidelines of my governing body BACP (British Association for Counselling & Psychotherapy.)
    This ‘everything else’ includes regular supervision, keeping up client notes & reflection on my practice as well as CPD (Continuing Professional Development) and research into current understanding & practice.
    I am wondering if & how I can use your 3 step method to enable me to return to work. Would I start by breaking down every task into smaller, regular steps toward achievement?
    The results of this new research are very encouraging because, for me, the “overwhelm” experience is more often driving me back to bed than the fatigue of my condition. (I no longer experience pain having it controlled by regular slow release morphine.)
    I wonder where to begin to experiment with this method to see if it might work for me? I must begin with small tasks & build up, possibly a journal will help?
    I am determined to try and will let you all know how I get on. I will admit if I cannot do it and try to identify the reason(s) why. :)

    • Debby
      Jul 01 - 9:19 am

      Jan,

      When I read this article it sounded surprisingly like the CBT techniques that my insurance company were convinced would solve my problems and get me back to work. The answer turned out to be a resounding NO. Although there are certainly benefits in relearning more positive approaches to stressful/overwhelming situations, which of course are psychological responses, I eventually had to admit that psychology couldn’t be the cure-all for this confounding condition. As helpful as some others might find this article I caution anyone about raised expectations by you, your family and friends and by insurance providers is paramount. The advice given in the article may help you to cope with your illness better, but, given the barage of recent research into the inflammatory, immune, genetic and endocrine aspects of this overwhelming (!) condition, I sense my own energies are better focussed on practising good sleep hygiene and diet, pacing, spending time with my family, looking forward, not backwards, and being gentler with myself. Removing unreasonable expectations, like I could go back to work was, sadly was one of those that helped.

      • Johannes Starke
        Jul 01 - 9:50 am

        Thank you for making this point, Debby. While this process can help, it’s certainly not a cure-all.

        I would experiement with it quietly and only share it with my network of support if I have noticed over an extended period of time that it really improves my functioning. This way the pressure from the outside world won’t become a problem.

        If this technique didn’t work for you when you tried it in CBT, I highly recommend that you try it with a buddy. The accountability definitely adds another layer of potency to it. Even then, it won’t be a cure-all, but it may help some more.

      • Cort Johnson
        Jul 01 - 1:20 pm

        When blogs like this are posted the idea frequently comes up that they’re proposing ‘cure-all’s’; i.e. “I eventually had to admit that psychology couldn’t be the cure-all for this confounding condition.” (I recognize you were responding to Jan on this.) I want to reiterate that these types of blogs aren’t meant to viewed as cure-all’s at all.

        So I agree – don’t get your expectations too high – use them for what they are – helpful practices to assist you in your day to day living that could provide improved quality of life, some improved functionality and some health benefits.

        Whether they could get actually somebody back to work is an individual question. I would point out that Johannes blogs are generally focused on ways to get more done with less energy. If someone is not too ill and is confronted with feelings of overwhelm, I think a body of practices such as these that reduce energy expenditure could be helpful in returning them to part-time work or to create a situation where more work is possible.

    • Johannes Starke
      Jul 01 - 10:07 am

      Dear Jan,

      I was facing your problem before I found this way of combating overwhelm. I was doing good seeing clients face to face, but got overwhelmed by doing unstructured work, such as client notes.

      With the help of this technique (and the buddy system I mention at the end of the article—without which I wouldn’t be able to succeed with this technique), I can now work 30 hours a week again and go food-shopping and make dinners for my wife and I.

      How would you start?

      Yes, I would start by breaking any task down into mini-steps. I keep a blank piece of paper of word-document on my desk that I only use to break down bigger tasks into manageable mini-steps. Once you are clear about your next mini-step, apply this three step process.

      I want to emphasize that—while some people can—I cannot always succeed with this technique on my own. I can’t emphasize enough the importance of doing this with a buddy.

      If you can’t find a buddy, I mention a healing community at the end of this article. If you sign up, I’m happy to be your buddy and tackle this with you.

      Please let us know how it goes for you.

      Best wishes,
      Johannes

  3. Ren
    Jul 01 - 2:04 am

    This article seems to describe a mild, Oxford CFS construct, and *not* ME according to CCC/ICC. : /

    • Johannes Starke
      Jul 01 - 10:08 am

      I have ME according to the Canadian Consensus Criteria.

      Even though I have few symptoms if I pace/meditate/live right, etc, but when I don’t stick to it it’s full blown CCC ME.

      It may seem to you as this is just describing the Oxford criteria CFS, as I only highlight one particular symptom of ME/CFS in this article.

  4. Rachel
    Jul 01 - 11:44 am

    I didnt really get this article. I don’t do negative anticipatory thoughts especially towards activity, or feel this ‘overwhelm’ nor am i a procrastinator. I am severely ill though and when i can do things its such a relief, the last thing i need is to break it into small steps or be mentally encouraged to do or finish it.
    And when paralysed etc. no amount of small steps would enable me to do anything, including scratching my nose or rolling over, if all i have is a couple of blinking eyes, and maybe some movement in fingers and toes.

    • Cort Johnson
      Jul 01 - 1:03 pm

      Since negative anticipatory thoughts are not your problem then this type of blog really isn’t for you – which is true for many blogs involving coping and/or treatment.

      ME/CFS and FM are large, heterogeneous disorders with lots of subsets. I wouldn’t expect this blog to apply to everyone with ME/CFS and/or FM in the same say that I would expect an antiviral or a blog on the gut to.

      Hopefully information will come up that will be helpful for the really severely ill…:)

  5. Andrea Pogan
    Jul 01 - 12:41 pm

    A revelation, I had no idea my enormous apathy had to do with my brain fog. Thanks for the info. It helps to know its ‘normal’ …NORMAL, what a concept. Great ideas. Thanks again.

    • Johannes Starke
      Jul 01 - 5:22 pm

      Thank you for check-in in, Andrea. I appreciate your comment.

      • sarah
        Jul 02 - 1:18 am

        I felt the same way, I’m always working on thought processes to help me do what I need to …rather than procrastinate, which seems ridiculous when I have so little energy. Its nice to know that there are reasons for this as I tend to beat myself up a bit :/ though I’m trying to let that go too.

        This sounds like a great way to keep on track.
        Another thing that I find helps with motivation is recording what I do, I hate not ticking the done teeth box !

  6. Mary Anne
    Jul 01 - 2:20 pm

    I appreciate the ideas here and especially the links to those new discoveries in the me/cfs brain. I didn’t realize either that the apathy was linked to brain fog or cognitive issues. I am a fairly positive, optimistic person but when I am in a heavy brain fog daze or feeling sick from vertigo and nausea, the apathy hits especially hard.

    I do use positive self-talk as part of my daily routine, especially when I am at my most vulnerable. It doesn’t take away the vertigo or nausea but it does help me feel like I have some control over my situation (which isn’t easy when vertigo has my world spinning out of control).

    ps: I did read those studies when they were posted here earlier, but not everything I read actually ‘sticks’ in my comprised brain now, so it’s great to be reminded once in awhile. Thanks again for a very interesting article.

  7. Darlene
    Jul 01 - 6:44 pm

    I can always tell when I am about to have a relapse because I start to feel majorly “listless and easily over whelmed.” Thanks for this great article, it gives some new tools for me to try. It’s a good point that some things make you more miserable if you don’t just find a way to make them happen. I learned long ago to always make sure to brush my teeth at night no matter how tired I am. Waking up in the morning with fuzzy teeth is the worst! Taking baby steps and making simple lists may not be a cure but even if it just makes each day a bit more pleasant it’s helpful.

    • Terry
      Jul 02 - 8:23 am

      I think the technique is great, and I use it frequently. But we need to remember to not push ourselves if we feel a relapse coming on—-doing so, in my experience, makes the relapse longer & harder.

  8. Joyce
    Jul 01 - 7:23 pm

    Thanks for your suggestions, Johannes. I’ve been experiencing resistance to doing yoga, a practice which can leave me feeling perfectly healthy for several hours & have wondered why I resist doing something so helpful. (I’d rather lie around & read). So tomorrow if I feel resistance I’m going to try your first step, at least, and see how it goes.

    • Johannes
      Jul 02 - 12:50 am

      Awesome, Joyce. Yes, this works well for doing healing activities, such as yoga.

  9. Natalie
    Jul 01 - 7:48 pm

    Thank you for such a good article. Things really need “chunking down” with the brain issues.

    Two examples I have had to deal with:

    It isn’t as bad now, but for a long time, mailing something to someone was nearly impossible for me. I eventually broke it down to its tiniest steps, one per day. Okay, what am I mailing? Check. On the counter. Today, find a stamp… next day… find the address. A really ambitious day, I managed to write the address down same day. It was as if my brain were encountering numerous “ping pong balls” all thrown at me at once. Describing this finally got relatives off my back about returning to school. If I have trouble stuffing, addressing and mailing an envelope, how could I handle school or a desk job?

    There is a legal issue I have to start over addressing, and the same process applies. First, I pulled up a relevant site and downloaded needed documents. The next week when I could deal with it again, I read the checklist. I will mail the first document soon, then give myself little pep talks and reminders about the next steps. One thing at a time, it will happen. I do dread the day I have to attend a court hearing, but figure I will break that out into itty bitty steps as well.

    It seems nuts that these things are now so hard.

    Thank you for simplifying the process.

    • Johannes
      Jul 02 - 12:49 am

      Thank you for sharing these examples, Natalie. I can definitely relate to them!

  10. James
    Jul 01 - 9:07 pm

    The apathy is really the worst. What it felt like for years was severe social anxiety. The fact that it may be tied to brain function actually feels like a relief, because then I may be able to get a bit of objective distance from it and thus lessen the emotional impact of the physical symptoms.

  11. Laura B
    Jul 01 - 10:12 pm

    This article was very helpful for me, mostly in normalizing my experience. I am struggling tons with these symptoms and have been beating myself up about it — thinking my procrastination, apathy, and feeling immobilized was just me being lazy or not being able to deal with things. I can’t believe how overwhelmed I feel by the simplest tasks. So this all makes sense to me, and it is very helpful to know there is something abnormal happening in my brain.

    Unfortunately, one of the times this happens for me is at night after my kids go to bed. I sit down on the couch, maybe watch tv or get online. I become a zombie, can’t get up and just go to bed. I feel immobilized. It is a weird feeling. At times I don’t take my medicine when I need to because I am too tired/overwhelmed/immobilized to get up. I would love to figure out how to deal with this particularly problematic time of day.

    • Johannes
      Jul 02 - 12:47 am

      Hi Laura,

      You describe exactly what it feels like (at least for me) when we feel immobilized.

      For me, using the three steps together with doing mini-checkins with a buddy has helped me overcome the sense of overwhelm and immobilization. It’s quite a sophisticated approach (meaning “unfortunately more complicated than just taking a pill”), but it works. If you can’t find a buddy to do the checkins with in the evening hours, feel free to sign up to the Healing Community, and I’ll find you one. Here is the link to my healing community again:
      http://cfsrecoveryproject.com/healing-community/

  12. Michele
    Jul 02 - 1:32 am

    Bless you Ian, yet another morning of trying to motivate myself out of bed has just got easier with your practical support. Three steps are going to be pasted on my wall. Thank you.

    • Johannes Starke
      Jul 02 - 1:55 pm

      Thank you for checking back in, Michele. What’s your first step that’s easy for getting out of bed? For me it’s, “Just wiggle my toes on my right foot.”

  13. Bren
    Jul 02 - 8:02 am

    Thank you so much… I was laid off in April 2013 which was a not so good surprise in itself as I had been with the company for over 5 years. If that wasn’t enough a pipe burst on the back of my refrigerator which did water damage to three rooms and my basement. Shortly there after my dearest friend was diagnosed with advanced stage cancer and she passed away in December. No job yet because I was trying to help my friend and along comes March 2014 and my sweet dog that has gotten me through everything was diagnosed with a very rare auto immune disease. Until May I took her to serveral specialist and sadly there was nothing they could do for her. She passed away at the end of April…very heartbreaking. With Fibro having a pet that gives you unconditional love and sense everytime I was feeling bad (I had trained her to be a service dog, she was a labradoodle and learned very quickly).

    I share all of this so that you may better understand where I am at…looking for a job once again and it is so very difficult. I very much like the suggestions and will begin to try this tomorrow. My problem is that I will go days without sleep, I am on day 5 now and it is nearly impossible to focus. Any suggestions?

    With appreciation, Bren

    • Cort Johnson
      Jul 02 - 2:07 pm

      When it rains it pours….I don’t know how you’ll be able to progress without getting some sleep! Have you tried melatonin, sleep hygiene – any sleep drugs? I know there are other supplements that can help but I can’t think of them offhand.

      • Bren
        Jul 02 - 3:14 pm

        Thank you Cort…
        I did set up an appointment with my doctor tomorrow. I have been on Ambien to long as it just stopped working.

        With appreciation,
        Bren

        • Jen
          Jul 03 - 5:57 pm

          Bren your life sounds like my May!!!!
          The universe has now eased up on me – thankfully, hopefully ou too.
          Love this article, I sent it on saying – I’m normal !!!!
          thankyou Cort and Johannes
          I already try my own style of this, but this is helpful.
          As you say, maybe not for everyone – but definitely for me.
          thankyou :)

  14. tanya marlow
    Jul 03 - 6:29 am

    Hi Johannes – thanks for this. I read it, but felt puzzled – the feelings you describe of listlessness and reluctance to do things (e.g. writing up your coaching notes) just sounded like the reluctance to do chores that we all have! I agree that motivations and breaking down the steps etc will help when you have ‘resistance’ towards a task, but the really difficult thing for the ME patient is discerning whether that feeling of listlessness is just the same as everyone else’s (and signalling an internal reluctance to do a complex or boring task), or whether in that instance it is the body signalling that it would be over the physical limits for that day, and would make the ME patient worse. In this case, breathing, smiling, motivating yourself etc would all be detrimental to your health, not positive. Any wisdom on how to discern what makes it a ‘how to overcome listlessness moment’ and what makes it a ‘listen to your body and give in to the rest’ moment?

  15. Laura B
    Jul 03 - 1:07 pm

    Tanya,
    My listlessness/immobilization isn’t just about chores that are complex or boring. It can be about very simple (and critical) tasks, e.g. needing to just get up off sofa and take my meds at a certain time. If I didn’t have my kids I don’t know how I would get out of bed in the morning. At its worst, I feel like a zombie, almost catatonic. Before I got sick I was a high achiever, did not tend to procrastinate and put off even critical tasks like I do now. Sometimes it is scary.

  16. Natalie
    Jul 03 - 11:38 pm

    It is different from what I remember experiencing years ago. All I had to do to get things done was line up the tasks and work away. Multi tasking and getting others involved was easy. I loved how life went along like clock-work and loved the “clickety-clack” fast pace.

    Now it is as if the engine starter just won’t turn over. I find myself saying out loud, “Come on, brain, engage.” There is no clickety-clack, no multi tasking. More like one item at a time, with mental space to process the one idea. It is an odd sort of pacing. I can totally relate to wiggling my toes after waking up!

    How do you know it is normal listlessness or procrastination vs at the edge and done for the day? For me, it is usually something I WANT to do and just cannot figure out. I had to relearn how to keep a checkbook. It made no sense at all, those numbers and columns. When I am at a meltdown point, done for the day, such tasks do not even cross my mind. Getting out of bed to start the day does not even cross my mind if I am out of it enough.

    It seems to be something about sequencing in brain function.

    I feel it another way, too. I drive a manual transmission, and when I am tired, it seems overwhelming to park and get out. Shift down, brake, put in neutral, set emergency brake. Turn off lights, turn off windshield wipers, turn off motor. Roll up window if needed. (No air; window is cracked open.) Remove key. Unbuckle seatbelt. Open door, lock door and close it. How many steps was that? 13 moves on an easy task, and it becomes overwhelming. Twice now, I have not set the brake, heard an odd sound, and realized the car was rolling across the lot. No damage was done, thank goodness, and I am now hyper vigilant, which just heightens the stress of something so normal and every-day.

    On a lighter note… I have extra keys everywhere for those moments when I don’t take the keys with me on getting out!

    • Karen
      Jul 04 - 5:02 pm

      Hi Natalie,

      I’m amazed at how similar your challenges sound to what I experience, especially your saying out loud “Come on, brain, engage”. I did this most often while attempting to play the piano — something I have pretty much given up on. I haven’t been able to learn a piece in years. At my worst, I can’t remember how to read music, or even the little rhymes I learned as a child to distinguish the notes.

      When it comes to multi-tasking, being able to do one thing at a time doesn’t mean at any given moment.. It means one thing on any given day, or week. So, on the rare occasion we have people over for a visit, I can’t even contemplate doing anything else but prepare for days in advance. My husband has learned not to even ask the simplest question (eg. “Should I put small or large spoons on the table?”) if I’m engaged in an activity such as stirring a pot on the stove.

      With respect to your check book, on several occasions there have been periods of time as long as 18 months when I completely forgot mine was supposed to be balanced. Imagine the effort required to catch up! Matching credit card receipts to statements is difficult, sorting anything in order of date almost impossible.

      I, too, drive a manual transmission car. And although I haven’t yet forgotten how to shift gears, I can’t remember what the controls are unless I can see the labels — this despite driving my post-ME vehicles for 20 and 10+ years. If the garage changes the settings on the lights, for example, I have to get out the manual to change them back. I’m the same with kitchen appliances.

      Yes, car keys are a problem. I “lost” mine at a grocery store, and after searching my purse and the entire vehicle several times, and asking at the customer service desk if they’d been turned in, I finally called my husband to rescue me. On arrival, he easily found my keys — in my purse where they belonged!

      One certainly needs a sense of humour with this illness.

      Karen

      • Natalie
        Jul 05 - 1:14 am

        I love it! Thanks for the laughs!

        Interesting you mention playing the piano. I bought a new piano last summer to try and get my playing back. Um… I can dream, right?

        I have never been able to memorize music. Now I wonder if the two pieces are related.

        Learning something new to play would be heavenly! I hear you on that one.

  17. Eric Howard
    Jul 04 - 5:08 pm

    I don’t feel the reward system at all, I can pretend I’ll get reward after a task but after the task I just feel broken, sore, tired and fatigued.
    Don’t think most of this is for me.

  18. Deborah Waroff
    Jul 05 - 10:09 am

    I don’t feel this listlessness or reluctance at all. I either have enough “energy” or “functionality” to move and think — perhaps for one minute, perhaps for 10, perhaps on the best days for 180, or I don’t. It is all a question of whether there is gas in the car and sparkplugs are sparking.

    That said, I think this piece would have more benefit with proper footnotes to back up statements as to how the amygdala functions and other properties of human biology. Otherwise I find myself unsure as to the meaningfulness of these concepts.

  19. Colleen
    Jul 05 - 9:17 pm

    These steps certainly sound helpful. When I am at my worst, remembering the tasks I must complete seem nearly impossible. Unfortunately, I exist now only to work. I must keep my full-time job. There is little energy left for much else including: family, friends, fun and taking care of my responsibilities at home. I grieve the loss of my social life including friends, exercise and fun activities such as going to a concert or movie. I fall asleep watching TV in the evenings. I think I could benefit from a “life coach” with first hand understanding of my condition. I was diagnosed 20 years ago and have not found much lasting help in alternative or traditional medicine.
    I definitely plan on utilizing these suggestions. Hopefully they will help to improve my daily functioning.

  20. Desiree
    Jul 09 - 1:47 pm

    Thank you Johannes for this very recognizable insight! After 37 years of ME I am much better, though not cured…. For me now it’s enough to just say to myself: ‘Just get started and you will see whether you can or can’t…..’ It works most of the time to get things done within my personal limits……and that way it also lifts my spirit!

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