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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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The slacker inside - wonder how much of this has to do with CFS?

Discussion in 'Other Health News and Research' started by AFCFS, Nov 24, 2012.

  1. AFCFS

    AFCFS Senior Member

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    Kina - Thanks Kina, I appreciate your replies and sharing your subjective experience. :)
  2. GracieJ

    GracieJ Senior Member

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    It's one thing to wonder about dopamine levels in someone with ME/CFS in general, and it's another to suppose that low dopamine levels are at work in ME/CFS. Maybe they are, maybe they are not. I have no idea.

    I define motivation by whether or not I want to do something. Through major clinical depression (supposedly -- I have my doubts these days that that was a proper diagnosis), post-partum depression, fibromyalgia, and ME/CFS, my problem was not a lack of motivation. It was a lack of physical energy or brain power to get where I wanted to go, and was very frustrating. It is a huge part of why we look normal -- we WANT to do things, we are STILL highly motivated, and push ourselves way too far. If it's dopamine that is behind the desire, then I still had plenty. If it's dopamine behind the ability, then it was probably low.

    So sorry you feel like a slacker. I can relate a little to what you are trying to convey, after seeing your list of activities. I was never quite like that, but had always been busy, all day long, every day, filling every minute and making it count for years as an at-home mom with plenty going on besides. These days, after years of illness, I'm not so worried about filling it at all, but there was a very long time where I felt pretty useless, like I could not justify my life. I can see where you'd label yourself like that, though I would not have used that word. For me, it was more... total frustration at forced idleness. I'm a hard-working and productive person, even managing to crank out hand-knitted items at the worst of my illness when I couldn't see, couldn't do math, couldn't remember much, and had to pick out a lot of bad rows.

    Laziness is avoiding and not wanting to work. Not working because you are sick can be a relief because you are sick, but I would guess most here would rather be working, whether a job, loading the dishwasher, running a home, whatever it is -- and we do it anyway.

    Oh, and if my street were flooding... I'd be out there with a shovel filling sand bags till I dropped, regardless of my condition. Same goes for snow removal, if my elderly neighbors need help, I'm out clearing it or figuring out how to get it cleared for them. They may have more energy than I :) but even sick I'm still more able-bodied in ways than they.

    I hope you can work through the frustrations that have you calling yourself a slacker. Redefining oneself living with a chronic disease is such a process.
  3. Aileen

    Aileen Senior Member

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    We have a word to describe that feeling ... FATIGUE! You aren't "unmotivated", your body does not have the energy to expend, so brain and body are saying NO! That is completely different than if, during the healthy period of your life, you had chosen to drop out of school and not get a job and just sit around all day watching tv.

    Put another way, let's say you love to run and run 5 miles every day. One day, you fall and break your ankle. Next day, you don't feel like going for a run. Why? Are you unmotivated? No. You are hurt and if you do that, you'll hurt yourself even more. So your body gives you pain and makes the idea of doing it totally distasteful so you stay off your foot until it heals. That is what we are going through. We just can't figure out what is broken or how to heal it.

    The word DEPRESSED will jump into their heads. And you'd have a script for an antidepressant before you could blink.

    You are physically and mentally exhausted. As you said, which would be a good thing to tell a doctor, "I feel as though I had walked 1000 miles only to get run over by a train". Perhaps you could add something like, "And I'm so exhausted physically and mentally that I can't even think about doing anything, I don't have the energy to want to do it" Actually that is a good thing. If you were "motivated" - wanting to get back to work, doing stuff, going places - which of course, you cannot, you'd be in a constant state of upset, frustrated, feeling like a caged rat! Your brain is doing you a big favour. It is keeping you calmer, and stopping you from doing stuff you shouldn't. You just don't realize it.

    Because before you were healthy and now you are not.
    Because before you were healthy and could do it, and now you are not, and can't! (like the runner with the broken ankle)

    Nor should you. It's good you told us you are feeling this way though. It isn't good to keep these things bottled up inside. It's very easy for us to get down on ourselves. When our brains aren't working right it is sometimes very hard to sort things out. Hope this helps.
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  4. GracieJ

    GracieJ Senior Member

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    After reading Aileen's very nice post, I have a question for you, AFCFS: Are the words "slacker" and "lack of motivation" more in keeping with a redefining/reinventing self process?

    I went 14 years without a good diagnosis. I pushed, pushed, pushed, telling myself I was FINE, it would be okay.... denial, denial, denial. I used all sorts of descriptive words for my symptoms and condition I would not even let myself think these days, as they are so inaccurate and totally unfair to myself.

    It's a good dialog you have opened up. Keep talking! What we think of ourselves unfortunately shapes us through the illness, so let us help you define something good -- I think most would "get" these moments!

    I do agree with Kina, as well... we get "psychologized" enough!!

    My subjective experience coming to a good diagnosis was h--- on earth with all the name-calling. Still is at times.

    However... as that emotional beating often comes from ourselves and well-meaning friends and family as well as doctors, the media, etc... it most certainly is a logical thought process to question things like dopamine levels. Hey, we question everything else along the way figuring it out, right?
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  5. MishMash

    MishMash *****

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    Perceived slackerdom comes last. The first thing to go, for me, was mental cognition, memory, attention to detail. At that point, I knew I was completely screwed.

    Stupidity, not slackerhood, goeth before the fall.
  6. GracieJ

    GracieJ Senior Member

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    MishMash... it is ten minutes later, I am back to reread, and I am still laughing!!! :) You just succinctly and perfectly described the process!!!
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  7. AFCFS

    AFCFS Senior Member

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    I think that is a good question and would would likely answer it with MishMash post:
    The illness dose require a large amount of redefining/reinventing self process. In short - I feel like "The Wreck of the Edmund Fitzgerald," but without the "romance" of the lyrics.


    In long, noting that we all probably show up on our doctor’s doorstep as a puzzle, it is not exactly my first rodeo; but I do not know if I am riding an old horse or new. Aside from some depression, which may have a dopamine component, I am presenting a hodgepodge of life events that may or may not be significant in treatment.

    Without writing a book, when I was younger, I found myself overseas for a short itme. I was on a malaria prophylaxis - Lariam (Mefloquine). At times, I was also on and a sustained antibiotic regime, flipping about various antibiotics as another prophylaxis. They later found Lariam to cause psychosis in some. Aside from the Lariam, antibiotics, and a generally unfriendly physical environment, the sky was occasionally “hazed” with chemicals dispersed into the air - not ones you want to breath, or touch your skin, although there was never any direct contact that I was aware of.

    Coming home was a reverse culture shock, as many of the social norms and values had been flip-flopped by necessity when in that environment. I slept for three days straight, just getting up to use the bathroom and get some water. I felt totally depleted, but not unmotivated. I also developed some bronchial problems and they found a spot or cyst on my right lung that required time on an inhaler but was gone at the next 3-month X-Ray check.

    

I did not feel myself, and saw a pdoc who thought I might have PTSD, depression, anxiety, some OCD, some ADHD - the Dx's mounting as I went through med trials that did not work, including: Tricyclics, Tegretol, Wellbutrin, Ativan, Xanax, Klonopin, Mirapex, Paxil, Prozac, Lexapro, Zoloft, Pristiq, Intuniv, Lamictal, Lithium, Trileptal, Topamax, Adderall, Concerta, Strattera, Vyvanse, Ambien, Lunesta, and Rozerem, and then combinations of each medicine, and re-combinations.

    

I functioned just as well, or better, off most meds and ended up just taking Prozac, which seemed to help with some depression, and some Klonopin. I believe the Klonopin had become a habit, rather than need. Eventually I replaced the Prozac with a low dose of lamotrigine.

    During that time, I never lost my motivation and worked toward achievements; my body seemed healthy and my mind still functioned and was focused. I did not always feel well, but I knew life was not perfect, so I just kept going and I seemed to be doing OK, for about 15+ years after I got back home.

    But it was after a good time of healthy diet and enjoying mountain biking when it hit. Maybe it was too much exertion just then, PTSD, depression, the herpes virus that I had since I was about two, alcohol intolerance, a boat load of immunizations, iodine deficiency, boron depletion, mercury poisoning from a tooth filling, or something else ingested - some chemical agent from oral prophylaxis or aerial ingestion, fluoride, bromine, the apparent chiari malformation that was found when looking for pituitary problems, hypothyroidism, non alcoholic fatty liver, some adrenal stress, sleep apnea, night sweats, a lingering bug from having rocky mountain spotted fever, some fecal or urinary material passed on by people I visited in the nursing home, allowing my dog to lick my face, getting hit in the head with the blade of a stealthy ceiling fan - those things are dangerous - while trying to hang a picture, or maybe even a problem with biochemistry like dopamine imbalance. Whatever it was, it hit hard and fast - it made me feel like a slacker.

    But we do live and learn, and perceptions can change. I currently have The Wisdom of Insecurity: A Message for an Age of Anxiety (Alan W. Watts) on my night stand, with the Bible not far off. Reading has been difficult for me, but I am trying to take this in bits. I had read it college and had recalled its philosophical appeal at the time, thinking now it maybe good to integrate it a little more, as I have found the need to reassess my perspectives on life. The book is kind of like a Meta-CBT for mind and soul.

    And CBT, I believe, is one of the treatments that they recommend for CFS, so there is the appeal that the perception of slackerdom may give way to some "Nirvanic" bliss, or if not extinguishment of the self, then perhaps something along the lines of the water basin, at Ryoanji - a Zen Temple in Kyoto, with inscription that translates as "I learn only to be contented." - Selah, Amen, and good night.:)
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  8. Marco

    Marco Old blackguard

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    Aside from the 's' word that seems to have raised some hackles these are legitimate questions to ask.

    Of course 'sickness behaviour' reduces motivation and in doing so serves an important survival role.

    What exactly is motivation though. I've come to think of it as the balance between appetitive (attractive) and aversive stimuli. What actions you take depends on the outcome of the sum of positive and negative.

    As an example I've always liked to learn (mostly through study) and still have the motivation to take up a course in something that would interest me. On the other hand physical problems would make it difficult for me to be outside the house for long periods and I know that my mental endurance wouldn't last beyond 45 minutes or so. Add to this the fact that funding is an issue now whereas it hadn't been previously.

    These of course are my conscious reasoning behind my current inaction to take on new studies but these 'decisions' are constantly ongoing at a pre-conscious level.

    I've no doubt that an imbalance in neurotransmitters can profoundly effect motivation, decision making etc not to mention our feelings of self-worth when faced with our current limitations.

    http://www.ncbi.nlm.nih.gov/pubmed/12445716
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  9. user9876

    user9876 Senior Member

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    They have equated hard work with the desire for monitary reward and I suspect quite small monitary rewards with their experiment. People can have many different motivations to do stuff and also differing values on their small monitary rewards in the experiment. This leads to the question of whether they can generalise anything from their study.
  10. MishMash

    MishMash *****

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    America, I'm convinced, is made up of ADD-addled people. That's because we are an immigrant society, where only the most risk-taking, impulsive souls on distant shores had the courage to get on some rickety wooden ship, probably never to see their mother country again, and settle in a new strange, but exciting country. We were the first nation to come up with the terminology "ADD". Remember the Warren Zevon song, "Just An Excitable Boy." That was more the term used one hunded years ago for never-satisfied boys.

    That has changed in the last 50 or so years, but I think we are still characterized by being both extremely hard working and community-building. When people are sidelined with illness, after a lifetime of meaningful work here, they are basically putting their identities in the closet. Especiallly if you are a man, what you do defines pretty much who you are. Women can always define themselves as mothers, caretaker; although I see in the workforce every day that is quickly changing. Women are using work, not kids and family to define theimselves, more and more

    For guys who are forced to step outside their usual industrious selves, the experience can be especially jarring. Right now, the biggest source of unemployment are middle-aged men who used to do jobs that are no longer in demand. Most men aren't good at philosophizing, putting life in perspective. They'll go to their graves wondering why they never got that construction or factory job back. That sounds like self-torture to me, and I think adapting to a new reality is probably the way to go.
  11. GracieJ

    GracieJ Senior Member

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    ME/CFS has virtually destroyed nearly every last definition of self I've ever had. Along the way, I lost my "mom" hat, my wife hat, my homemaker role, writer, sometime artist and musician, amateur dance enthusiast. I went back to being a massage therapist because it is such a distinct identity, relatively low-stress, and highly rewarding. It is ironic that critical family members, not realizing there is a disease process at work tearing my life apart, think that I am a bigtime loser and a fool for pursuing massage therapy -- and all my other life choices are "big mistakes" as well. The joke is on them, because I've become an even better person from the last 22 years of being ill, more forgiving, able to laugh easily and often, more compassionate and outward looking. About all I "miss" these days -- besides the obvious, like normal energy level -- is regular human company at the end of the day.

    CBT is a GREAT tool for coping emotionally and mentally for any life circumstances... but it is NOT an ME/CFS "treatment."

    Thanks for sharing your story, AFCFS!
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  12. snowathlete

    snowathlete

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    I see what your saying MishMash, but dont forget alot of people early in US history arrived without having a say in it!

    Regarding the Slacker bit:
    A quick look in the dictionary shows why this word is offensive to many people in this context.
    noun
    1.
    a person who evades his or her duty or work; shirker.
    2.
    a person who evades military service.
    3.
    an especially educated young person who is antimaterialistic, purposeless, apathetic, and usually works in a dead-end job.

    Assuming the good intentions of the OP, It was a poor choice.


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  13. MishMash

    MishMash *****

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    I thought I was the only one who still like this song. Notice that what was once "popular" music is now "classic"? Bach was once pop, but became "classical".

    When I went overseas in the military I was given Lariam tablets to take for malaria. (I was headed to a desert, but you know the army). I asked one of the NCOs if he had taken his medications, and he said "I ain't taking that s**t, it makes you crazy." I learned later that there several servicemembers who murdered their spouses after taking returning to Ft. Bragg. I believe the law suit is still going on.

    The first symptoms I noticed were cognitive. If you had reduced profusion to the brain, it could have resulted in depression, anxiety, OCD, all that. Reduced blood flow to the brain is a symptom of CFS.

    When I used to go the CFS support groups meetings, I met a strange mix of highly intelligent people. One lady was extremely well-spoken and proper, and had been a budding opera performer. We had various engineers, a couple of mathematicians, emergency room nurses. It must have been really humbling for some of them. People would come once or twice then disappear. I think they disbanded eventually. Too depressing.

    The hardest part is realizing there's no easy way back. You are done. (I'm predicting a miracle drug, btw, so no need for anybody to panic.) But patience and philosophizing are in order. There's a lady in my office who is paralyzed from the chest down, starting when she was 12, when she got cancer. She is cheerful and never wants to talk about self-pity. But she is very smart and very pretty. So if had been her, I would have been like Capt. Dan; cursing God from the top of Forrest Gump's shrimpboat mast. I think certain personalities (inherited genes) adapt better to adversity.

    And CBT, I believe, is one of the treatments that they recommend for CFS, so there is the appeal that the perception of slackerdom may give way to some "Nirvanic" bliss, or if not extinguishment of the self, then perhaps something along the lines of the water basin, at Ryoanji - a Zen Temple in Kyoto, with inscription that translates as "I learn only to be contented." - Selah, Amen, and good night.:)[/quote]
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  14. Tally

    Tally Senior Member

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    I can honestly say that I was always a highly motivated person, and I have remained so after getting CFS/ME. I have never felt like I don't want to do something, only that I can't.

    I am now maybe at 5-10% of what I used to be. But I can with clear consciousness say that I do my maximum. Every time I cross that line, I crash for weeks, and end up doing less. So by respecting my limit, I am without a doubt doing more.

    I am sure many people on this forum feel the same. Correct me if I am wrong.

    Naturally, having such a tragedy change our lives, many may feel hopeless and give up. But that has more to do with what type of person they were before the illness and what kind of support they are getting now.
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  15. xchocoholic

    xchocoholic Senior Member

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    I've learned to embrace my slacker self / closet slob in the last couple of years. I usually only clean my house if company is on the way. Or if the dust bunnies have formed armies and are threatening a hostile take over. ; )

    Otherwise resting and enjoying resting comes first. It took me about 20 years post cfs to discover how to do this.
    I feel so much better if I'm rested.

    Imho someone who chronicly doesn't feel guilty about resting when there's work that needs to be done is a slacker. It's
    their comfort level or perception that they don't have to work when doing nothing that gives it away.

    Tc .. X
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  16. MishMash

    MishMash *****

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    Haha! Touche! Show's how much I know my American history. Maybe I can generalize about Australians then. No, they weren't all moved there on their own accord either. Oh well, so much for the generalizations.

    This sounds like an epithet thought of by makers of Paul Rudd and Judd Apatow movies.
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  17. Dan_USAAZ

    Dan_USAAZ

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    I am not qualified to comment on the validity of this study, but do find it interesting and think it warrants further study. I do not see any correlation to ME/CFS.

    I see the primary difference between ME/CFS patients and the study “slackers” is that the “slackers” are choosing to do nothing because they just don’t want to make the effort and nothing else is stopping them or affecting their decision. They have a faulty or different risk reward process in the brain.

    In the case of ME/CFS, many of us are very motivated and very much want to achieve and work and live. When we do exert ourselves, we get sick. When we choose not to work or play, it is because we are either too sick or we avoid the activity so that we don’t get more sick. This is a tremendous difference from the so called “slackers” in the study that appear to avoid effort for no reason other than not wanting to make the effort.

    Other posters have brought up various diseases with good analogies. If this hypothesis (thread title) were correct, it could also apply to every autoimmune and neuroimmune disease as well as every other serious disease affecting mankind. When humans are affected by serious disease, their ability to achieve and live life is greatly diminished due to the illness. This is not a simple decision to avoid effort just because you don’t want to.
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  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Count me in as a fan of The Wreck of the Edmund Fitzgerald and Gordon Lightfoot.

    Even after a quarter century of ME/CFS, I still want, and sometimes even plan, to do more than I am able. I would not say that I am unmotivated (just a slow learner).
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  19. Kina

    Kina Moderation Team Lead

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    I saw Gordon Lightfoot years ago in Concert. I still listen to his music on my IPOD. One of my favourites of his is 'Black Day in July'.
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  20. GracieJ

    GracieJ Senior Member

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    We need to start a Gordon Lightfoot fan club in Community Lounge!! :)
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