(Can being happy help with chronic fatigue syndrome? How important is happiness to our health? And who was truly happy even before they became ill?) Depression is common in people with chronic illnesses and I would warrant that even small upsets tweak people who have stress -response-immune disorders such as fibromyalgia and chronic fatigue syndrome. Dr. Klimas noted that behavioral therapies can be helpful in anyone with an immune mediated disorder but maybe the most essential question is…why not be happy anyway?
With this blog on ‘Infusing Joy Into Your Daily Regimes’ Johannes Starke begins a series of blogs from different authors on finding ways to reduce the fight/flight response that studies suggest is present in this disorder and create more wellness – Cort).
Can daily routines be a source of happiness?
Since I’ve had chronic fatigue syndrome (ME/CFS), cleaning the kitchen, taking a shower, and even brushing my teeth can be a chore. I completed these day-to-day tasks, but I didn’t enjoy them. If anything, I would feel annoyed while engaging in them and exhausted by the time I finished.
Since I knew I would have to brush my teeth for the rest of my life, I decided to find a way to introduce joy into the activity. Integrating cutting-edge research with my own trial and error experience, I came up with an approach to deriving maximum enjoyment from brushing my teeth and other day-to-day routines.
And it works! I am much happier and more energized since I use the technique I’m about to explain in this article. I hum my way through brushing my teeth, and sing when I prepare my breakfast. Where I used to be flustered and tired, I am now infused with energy and joy.
Why this approach works
My simple approach employs the scientifically proven benefits of mindfulness and music.
Mindfulness is the art of filling our mind with the impressions of the present moment. Let me give you an example:
Have you ever tried to sing “Singing in the Rain” while you were dancing outside in a downpour? If you have, you may have noticed how singing amplified your experience. I vividly remember the last time I sang and danced in the rain. Standing in the rain wasn’t that special at first, but as I began to sing, I suddenly noticed how the cold rain brought my face alive, how sweet the taste of the moist air was, and how much I liked the beautiful smile on my date’s wet face. My mind was full of the impressions of the present moment, and that’s what made it special.
A New York Times article that summarizes a recent Harvard happiness study confirms my point, stating: “Whether it is having sex or reading or shopping, [people] tended to be happier if they focused on the activity instead of thinking about something else.”
How You Can Do It in Less Than Five Minutes
“But how,” you ask, “do I fill my mind with the impression of brushing my teeth?” I’ll teach you in a simple and fun five-step process, which will take less than ten minutes of your time. Grab a pen and a blank sheet of paper, and you’re ready to begin.
Step One
Choose the daily routine you’d most like to infuse with energy and joy. It can be anything, from showering to getting dressed to preparing your breakfast.
Choose now and note the routine at the top of your blank sheet of paper.
Step Two
Decide on how you want to feel while you complete the daily routine you chose in step one.
In the morning when I prepare my breakfast, I am still sleepy and a little moody. But that’s not how I want to feel. I want to feel happy, relaxed, and grateful for the fresh organic apple oatmeal I get to enjoy each morning.
However, I don’t want to feel relaxed and happy all the time. Different ways of feeling lend themselves to different activities. When I take my shower, for example, I want to feel focused and full of energy. I want to feel as if I were a healthy, muscular Native American warrior whose shower is a waterfall in the lively coastal forests of Northern California.
How you want to feel is completely up to you. Note your choice on the piece of paper.
Step Three
Find a melody that evokes in you the feeling you’ve decided on in step two.
My recent creation of a breakfast preparation song illustrates how to pick the right melody. As I mentioned, I want to feel relaxed and happy when I prepare my breakfast, so I decided on the melody of “In, Out,” a song I know from my weekly meditation group meetings. I associate the song with happiness and relaxation, so I am able to conjure up these positive emotions whenever I sing it.
Do you know a song that makes you feel the way you want to feel when completing your routine? Note it on the sheet of paper. You can’t think of the right song? Think of your childhood memories and use a simple melody that comes to your mind. If you still can’t think of a melody, no need to worry. You can skip this step and use this technique “words only.”
Step Four
Making breakfast can be refreshing.
Now put words to the activity you’ve chosen in step three.
This morning, when I prepared my breakfast, I began my song with the following words:
Apple, apple, green fresh apple;
Apple, apple, green fresh apple.
Container, container, oatmeal container;
Red, red, red measuring cup.
The words in the verse amplify the image in my mind of the apple, oatmeal, and measuring cup in front of me. My mind is filled with the impressions of the present moment. I experience the miracle of mindfulness.
When you put words to the melody, don’t worry about making it perfect. You are not on American Idol. Simon Cowell will not bash you for your shortcomings as a singer. If your verse doesn’t fit the melody, fill in with a hum, or any other sound. As a secret benefit, making up words on the spot will ensure that the descriptions of the objects in front of you stay fresh and vivid over time.
Let Me Summarize
In the four steps above, you’ve learned to fill any activity with color and joy: pick a daily routine, think about how you want to feel, choose a melody, and make it a song by putting the right words to it.
Most importantly—and this is step five— try it. Since I was diagnosed with Chronic Fatigue Syndrome, I’ve had limited energy for all the activities in my day. As a result, I gained an awareness of how precious each moment of my life is. Now that I sing my way through day-to-day activities, I can appreciate each moment for the present it is.
What if you tried it?
I believe my approach to enjoying daily routines has the potential to change your life for the better. Will you commit to singing your way through your chosen day-to-day activity for one week? Try it, and then judge the results for yourself.
What do you think? Leave a comment under this post to share your experience. Please also do ask any questions you may have; I’ll be sure to answer.
Johannes Starke has come a long way in recovering from Chronic Fatigue Syndrome, is a professionally trained Life Coach Fatigue Therapist, and has been coaching clients for over three years. He is the founder of CFS Recovery Project, where he supports people with ME/CFS and Fibromyalgia in regaining their health and happiness.
In February he’ll be teaching a free recovery skills e-course on a topic of your choice. Vote on the course topic and reserve your seat at: http://cfsrecoveryproject.com/free-e-course/
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Is this really about ME? It sounds to me like advice you give someone who’s burnt out.. I’ve never dreaded anything I had to do, enjoyed simple things like housework, groceries or whatever (call me crazy, but I did), so I do not recognize it at all.. I was also happy prior to falling ill instantly 16 years ago, even loved the rain (still do by the way) and even went happily outside by choice (!) in a rainstorm just for fun, enjoying it a lot.. Didn’t mind cycling to work in the rain either – just needed to take dry clothes and my hair would be a bit fuzzy all day, so what 😉 . I’ve always been seen as a very positive person, that could enjoy everything, not matter how trivial or not interesting to others or even challenging/difficult situations, just by making something positive from it.
Since becoming progressivelly more ill and even with all the extreme dependence of needing help 90% of the time for the most basic things as going to the toilet because of extreme and often and sudden occurring muscle weakness and orthost. intolerance from what I collapsed, I didn’t feel unhappy strangely enough. I delt with it. Of course I found it VERY difficult when more and more was impossible to do myself and becoming more and more dependend from my boyfriend who had to work from home to care for me and help me with even the basic stuff, like getting undressed at night, help with showering, drying off, getting dressed, or have my teeth brushed by him etc. etc. for I often (sometimes did and enjoyd it even more than ever!) didn’t have the fysical strength myself. I sometimes (about 3-4 times a year) cried my eyes out from frustration and wanting a normal life or at least more independence.. And still have difficult moments a few times a year from my non-existing life, missing out on everything, not being able to attend important things, not even funurals, a life emprisoned in my house and long periods of being bedridden and not able to do anything at all, sometimes not even lifting a glass or bring food to my mouth. Of course that’s difficult, but I have chosen not to be defined by my illness as a person a long time ago. And therefor to keep seeking pleasure in the little things. My cat, my (luckily still) funny boyfriend (despite the toll this disease it taking on him as well..), seeing the blue sky throught the window, hearing birds sing etc.
And all the times (before I had a stairlift that I now have) when I was not able to go upstairs not even with the greatest efforts I was simply too weak to do myself and my boyfriend had to move me. He had to put my arms around his neck because my arms didn’t have the strength for that, he put me on the stairs, my head leaning heavy on his shoulder (not even from exhaustion but from pure weakness), put my bottum on the next, my feet as well, then moved to the next step etc. Since we’ve had a lot to deal with for years because of my increased disabillity and need for help, even in those situations we could have fun. He for instance could make a very dry comment about that – or another – situation that despite my weakness gave me so much joy and a smile on my face (too weak to really laugh, but laughed hard on the inside), despite the situation being so serious and not fun at all, but that made it all bearable. And humor – something we’ve always shared – has been a survivingstrategy for us for a long time and has given us a lot of joy! I’ve also not have a problem not having the energy to do things, just could/can not USE that energy. Since only speaking a few minutes that was possible sómetimes, could make me have a relapse of days or weeks on other days. The same goes for going to toilet, sometimes I could do that myself first time or first 2-3 times a day and then needed help for the rest of the day, sometimes I could do that almost all day before I collapsed or had extreme muscle-weakness and needed help.
So I can tell you, no amount of laughter or joy, as my boyfriend and I’ve always had long before this illness – people who can make something out of everything, never complain and enjoy even the littlest things, even when there has not been much more for so long, could have made the weakness of complete exhaustion any less, as this also turned out to be a major mitochondrial problem (as is common with ME..) next to a whole bunch of serious immuneproblems that are not explained by unhappiness or not being mindful enough………. So however you turn it, this will not improve by humming or singing or whatever. If it would, I would not have become as extremely dependend as I have become (by the way, got a bit better and am now capable of going to toilet myself all day, even making my own breakfast and lunch, for first time in years! Thanks to antivirals, antibiotics, gcmaf-injections, supplements etc: i.e. medical treatment, which is what this awful disease needs.) This article gives me the feeling that we could all do a lot better if we were just a bit happier as the psychobabblers have tried to make us believe for so long. BUT as this is not the reason why you are exhausted or weak or whatever from MS, this also is not going to let you feel less exhausted or weak with ME… It’s not because we overdo it, but also not because we are not mindfull enough or not happy enough. I thought we were past all that ‘certain personality’s get ME/yuppieflu’ nonsence.. I’m a bit disappointed to find an article like this here.. (followed you on phoenix rising for years, followed you here to your new site, Cort)
Besides: I’ve HAD mindfulness years ago because I did everything to get better and it did not make a difference in what I could, my muscleweakness or how often I collapsed, only in paying more attention to what I was doing (but always was pretty in the moment kind of person, so however there’s always room for improvement, I already lived the basics…) and I find it a bit insulting to asume that people with ME (!) could do more than they would before using this. As an ME-patient I don’t feel taken seriously with this to be honest. And although it might help some people cope a bit better, it will – in ME! – not do much more than that, learn to cope.
Thanks for your heart-felt response. I understand that this seems like ME-CFS lite or it’s for people who are just burned out and it sounds like this technique would not help increase your well being or quality of life; that you’ve managed to maintain some happiness even as your body got worse. I heartily congratulate you on that. (I’m afraid I’m not in that category :().
Other people do benefit from these types of techniques, on the other hand, (I am one of them at times :)) and this website is for everybody…so these types of mind/body blogs will be present from time to time and we’ll have some blogs coming up that will be better matches for you, I promise and shortly, in fact :).
I don’t want to discard the little things like learning how to cope better or being a bit happier or having a bit more joy…Even if they don’t come close to curing you these can be precious things to have when you’re really ill.
Thanks for your responce and I do understand Cort. This just triggers me a lot, since it’s what I’ve had to hear for so long as this wasn’t even an (or the) issue for me and nobody cared or listened to what my problems were, just assumed that this would be the answer for me. So it’s a bit of a touchy subject as was obvious by my comment 😉 sorry about that, just let myself go a bit..
And of course I do understand that you want to serve the whole spectrum, which is good and neccessary, and I also understand that it can be helpful for people and it might have helped me if I could not have felt the way I have despite of everything. I do appologize if my comment might have triggert something else with you or anybody (I’m very well aware of the fact that things like this – and whatever situation someone’s on – go both ways). And I appreciate all the effort and work you put in this website and the way you try to help with info – just so you know that that’s also how I feel, take care!
It’s completely understandable Monica and believe me if you didn’t say it, someone else would (and probably will and probably is under their breath :)). I kind of hold my breath with these kinds of posts but I feel obligated to put them out as well. Its a touchy situation.
I recognize how feeble techniques like this can seem to someone who’s really, really ill or to people who’ve tried them unsuccessfully in the past. I appreciate your understanding.
Tomorrow look for a post on LDN…it’s not the answer either! But it’s pointing in an intriguing direction..
I want to point something about ‘placebo’ as well since it’s associated with improved feelings of happiness and hope which is what Johannes is trying to achieve. A study just published on low-dose naltrexone and fibromyalgia found that LDN relieved pain levels by 28% on average and that the placebo group received a 18% reduction in pain levels.
An 18% reduction in pain is pretty significant to someone in pain and Dr. Clauw has reported that placebo results for pain conditions are higher than in other conditions. It could be that people who experience more pain (my ME/CFS is more fibro oriented) do better with these kinds of approaches, I don’t know but the placebo effect is a significant feature in all illnessess; it doesn’t cure but it helps. If you can harness whatever is going on with placebo and every mind/body technique must be dealing with whatever happens in the placebo effect you may be able to improve your well-being…
Somehow I was not surprised to get to the bottom of the essay and find it was written by a ‘life coach’, whatever that is. These sorts of essays imply it’s the patient’s fault they are sick: if we would just think the right thoughts, or eat the right foods, or do the right exercises, our illness would get better.
How about an essay that discusses how if we can get access to competent doctors, proper medical treatments, and adequate financial and social support, many of us can and do improve?
Johannes is person who became ill with Chronic fatigue syndrome…got better using nutritional aids and these kinds of techniques and after that devoted himself to helping others do the same; ie he was an ME/CFS patient first.
We’re open for bloggers; I’d absolutely love to get blogs on how to get access to competent doctors and how to improve your financial resources and social support. How about taking that on? I’m serious about that…those are vital areas we don’t have hardly any info on..
I don’t think access to doctors is the end all, though. I know wealthy people who’ve seen everybody and tried everything and I mean everything and they’re still as sick as can be. I know of people who’ve gotten better as well… I would guess that many people get moderately better by seeing expert physicians. I would not guess that most are still not anywhere near healthy. If you’re following Corinne’s blog you’ll know that she did get quite a bit better with Dr. Peterson (out of the wheelchair) and then relapsed quite badly. It’s a difficult disease to treat no matter who you see.
Health Rising is working on a Physician Review program and it’ll be interesting to see how the big docs show up; I hope its better than I think.
Then there are the people who can’t afford to see physicians (like me) and they’re left with only alternative therapies like these.
I don’t mean imply that it’s your fault that you’re sick.
What I’m saying is that we should try everything we can to get better, which includes the things you mentioned, as well as the technique I suggested in this article.
I’ve been extremely skeptical about mind/body approaches to ME/CFS when I got first ill.
Why would these approaches help? It’s a physical illness after all. I’m pretty sure that I’d have never tried them if the mind/body program I tried hadn’t come with a money back guarantee.
Well, now I know they help, are often a lot cheaper than medical treatments, and–if they’re good–come with a money back guarantee. It will not help everyone, but why not try it if the financial risk is zero?
Your comment “‘life coach’, whatever that is.” makes me want to clarify.
It’s hard to describe what I do, and life coach doesn’t really cover it. If you’re interested in learning what I’m really about, check out the following article on how I became what I am today:
http://cfsrecoveryproject.com/being-in-service/
The first half of the mentioned article covers how I
– overcame my aversion to body/mind approaches and
– how I recovered
The second half, starting with the subhead, “Are you a psychologist?” covers
– my credentials
– why I founded the CFS Recovery Project and
– whether I’m a scam 😉
Hope this helps 🙂
What does ME stands For. Please clarify. Thank you!
Myalgic encephalomyelitis is the name chronic fatigue syndrome was first given – in the UK.
I was really surprised to read the comments below the article, as I did not take this post as a typical psych reaction to ME/CFS at all. I took it as a way to try to bring some joy into a life of chronic illness – a life that can be pretty miserable with little to look forward to and almost no joy no matter how positive we try to be.
I understand that many of us (myself included) have heard the pysch garbage so much that we can have a knee-jerk reaction to anything that even hints at that. I absolutely agree that this illness is not psychological, nor will any kind of counseling, CBT, etc make the very real physical issues in our bodies get better.
That said, it is very normal to find it depressing to be living such a limited existence with so much constant struggle and with so many losses. I loved all that I was able to do before getting sick. I had a very active, busy life with a lot of hopes and dreams, and a lot of social interactions. I miss that tremendously, and even though I have always been good at finding hope and joy in small things, I still get discouraged by the constant major challenge that just surviving has become. I don’t even remember the last time I actually had something good to look forward to, because I have been far too sick to try to plan anything.
So, I appreciate finding new ways to try to put some joy into my day to day existence. Without hope and joy, and with so little purpose, really what is there to live for? (& no I am not suicidal; just saying this can be a really bleak, purposeless existence, & it’s good to find ways to fight that) And what do we have to lose in trying what is suggested here anyway?
This….. “I don’t even remember the last time I actually had something good to look forward to” is a big deal…that’s a huge stressor right there and I’ll be that kind of stress impacts both your autonomic nervous system and your immune system.
Personally I think we should become masters at finding ways to be happy, at giving ourselves huge breaks, at being able to re-intrepret our circumstances in such a way as to be at peace and satisfied and even happy as much as possible…Its very possible, for at least some of us, that every stressor has some sort of impact…and if we can reduce them at least we can be happy and its all about quality of life isn’t it really???
Cort, you’re always writing the same responses that I wanted to write. Who is the life coach here, you or me? 🙂
No seriously, you’re comments are awesome and I don’t have anything to add to this one.
Cort, I’m too sick to write much rt now, but wanted to let you know I appreciate & agree with your response to my earlier response
I too agree the Life Coach idea is not what we need. This may be good for 2 minutes but really dealing with
this Disease is much more complicated than singing about apples.If it helps someone then do it.
I would like to make a suggestion. I am a Reg Dental Hygienist and also A State Licensed Animal Rescuer.
Not doing rescue now as I am too sick.
Why don’t some of the more prominent Doctors who are so expensive. Have a Donation in the office for sick patients that cannot afford a day of the Dr. care. We had this in many Dental practices and Vet Specialty clinics.
The Dr. would donate 1 to 1/2 day to a patient that was ill. Even if it was just long enough to give them a diagnosis .It could be 1 patient a month if that is all the Dr. could donate. How about this Cheney, Klimas, Bateman, Peterson????? Humanity goes a long way. !!!
Just for the record I have always been and continue to be a Positive Person and Happy for what I have.
This is not my cup of tea either… I’m glad if it helps some people but it’s too simplistic for my liking. It’s great if we can feel better with our chronic disease, but using this kind of techniques to try to “cure” ME/CFS is to me as crazy as asking MS patients or RA patients to rid themselves of their medications and start using mind-body techniques instead… ME/CFS is where MS was before effective drugs came along. We need to focus on moving ME/CFS into the position where MS or RA is now! (I know Health Rising is doing a lot of that for example with the Ampligen advocacy posts, which is awesome, thanks for that and for all the research coverage.)
I appreciate you for sharing your concern.
I concur with you in that using this kind of technique is not enough to cure this illness.
ME/CFS is too complex of an illness to cover a solution–if it existed–in one article.
Yet, the reason I decided to try these mind/body techniques right now, rather than waiting for a drug to be approved at some point in the future is that I wanted to enjoy my life again.
Even MS, which has been acknowledged as an illness many years ago, still doesn’t have a cure!
With the help of these techniques, I was first able to enjoy two minutes of my life. Then I discovered another technique that allowed me to enjoy two more minutes of my life. Four years later, I enjoy every last bit of it.
It makes me sad when people dismiss these mind/body techniques just because they’re incomplete. Why not use them as one part of managing your life with ME/CFS?
Wo’s dismissing these techniques? I think it’s not the mind/body approach itself that’s what can put people of, like I said, I’ve done mindfulness, have always been open to anything that can help. Even though I already had a very mindful way of living – despite all the challenges that came with great disabillity – and had already found a way of enjoying the smallest things and counting all the blessings that in my mind are always there, no matter how much I was struggling just to survive. I was always focussed on what was good or positive or made me smile no matter how small.
My problem personally is with these statements:
“And it works! I am much happier and more energized since I use the technique I’m about to explain in this article. I hum my way through brushing my teeth, and sing when I prepare my breakfast. Where I used to be flustered and tired, I am now infused with energy and joy.”
and what I was having problems with. Extreme mitochondrial dysfunction or orth. intolerance that makes an ME-patient sick and very impaired (and accounts for the lack of energy) is not being improved by this technique at all in my opinion AND experience…
And of course it’s useful to feel better about your restricted life if you need that and I think it can be a very important technique to improve your life-quality if you have trouble accepting etc. But getting more energized as appossed to flustered and tired, makes me think we’re not talking about the same thing, sorry.
Good point, Monique.
The point I’m trying to make is that doing these techniques makes the difference for me whether my mind is focused and energized or flustered and tired. For some reason, engaging in the mindfulness practice of singing and really focusing on what I do helps me to be more centered while I do these things.
I assumed feeling more energized and less flustered is a common experience, as this is how mindfulness is described by almost all meditation teachers that I’ve come across. I also read in Victoria’s description of mindfulness (in a comment a few comments down from this one) that she is not flustered at all when she is in a mindful state of being.
I imagine that you agree with me that being mindful is a more energy efficient way of being in the world than feeling flustered or stressed.
The point on which we disagree is how much it can do for us. I don’t mean to imply that it can infuse a ME/CFS sufferer with so much energy that they’ve been cured. I now see that my article could be read that way; thanks for bringing up this point and giving me an opportunity to clarify.
I’m amazed at the amount of energy a ‘rushing mind’ takes up…It’s just incredible how much energy a distracted unfocused mind can use up…and it’s not like we have much energy to throw away. Studies do show that the brains of people with ME/CFS are easily distracted by small things….
Thanks for your reply and clarification Johannes, I appreciate it. I get your point about what you say too and appreciate sharing your experience. And of course it makes a (big!) difference in being or not being mindful and this is useful for everyone, healthy or sick, no matter the kind or degree of illness, don’t get me wrong. And as Cort points out, it’s especially useful in our disease, since we already have such limited posibilities and energy that we do not want to waste any of it, I completely agree. So I do believe your post is a very valuable one for anyone who can use a bit more peace and joy, who had not found that on their own yet. Like we all need that to be able cope with whatever in life. It’s also that I didn’t recognize being flustered and have felt quite peaceful (maybe because I was pretty mindful before, although I’ve learned to be so a bit more the past few years, like I said before, since there’s always room for improvement).
Take care!
Thanks for your kind words and for acknowledging the power of mindfulness, Monique. I had a sense that we were essentially on the same page, but that my article triggered a deep-rooted conflict between our two worlds.
My world being the one of, “Do what you can to make the best of your health and happiness right now.” Yours being the world of, “We have to change something on a fundamental level! As long as ME/CFS is ignored by our society and medical system, we have to fight to change things, not just use these self-help techniques to make the best of a horrible situation.”
A ME/CFS adcovcate, who called me up yesterday, beautifully likened the situation of many ME/CFS sufferers to that of slaves before they reached their freedom. While singing songs helped slaves to make the best of their situation while they were deprived of their basic human rights, it was not enough to change things on a fundamental level. Slaves had to fight for their freedom; Uncomfortable, sometimes even ugly things needed to happen for slaves to finally achieve their freedom.
Both, the fighting, and the singing were important. The singing kept their health and spirits up, which allowed the slaves to fight for their freedom more effectively. The fighting is what finally gave them their human rights back.
My gift is teaching people with ME/CFS how to make the best of their health and their happiness. The gift of the advocate I talked with yesterday is to fight for political, social, and medical acknowledgement for those suffering from ME/CFS.
The advocate and I came to the conclusion that both, her and my gift, are very important. My gift will support her and everyone else with ME/CFS to keep up their health and energy while theirs: the crucial work of fighting for ME/CFS sufferer’s social, political, and medical rights.
Let freedom and health reign!
Somewhat off topic: Suddenly today out of nowhere came news about Ampligen. On BIOWORLD and Nancy Kilmas and her institute. I really now believe some of the emails, calls. advocacy campaigns and of course the Hunger Strike has struck a cord. I really hope something happens for these invididuals.
robbie goldstein
I hate singing and find music or artificial noise too distracting and most of the time, downright annoying.
I find Life Coaches or even Counsellors and Psychologists to be totally ignorant of the reality of CFS and/or FM. There is no need to sing or find joy in everyday activities. I believe that is just a mask to bury your reality. It’s helpful to learn how to still the mind and erase negative thought patterns though.
Learn how to just Be.
Regardless of your condition or the length of time you have been ill, you, as a unique individual needs to find what ‘works for you’ in order to COPE with being a chronic illness sufferer.
Accepting your illness and finding the mental strength to improve your Mindset are key elements in living with Chronic Illness. Being comfortable in your Mental Space can equate to being comfortable in your Physical Space.
If you can’t accept your illness as it is and live your life (despite chronic pain and other symptoms), you will always be in a state of Stress or negativity. Living Mindfully or Living in the Moment is vital. Those people who practice meditation and learning how to empty the mind will be able to cope with chronic illness far better than those who are mentally consumed & physically overwhelmed with their illness .
I guess it’s easy for me to say this having had to quit working 3 years ago and having found a hobby which I’m passionate about and physically able to do (now). It brings me a lot of pleasure communing with nature and capturing it in photos. I only remember the times when I was unable to get out of bed or even turn over in bed (without excruciating pain).
I still have FM, CFS, IBS, severe Septal Hypertrophic Cardiomyopathy (medicated), High BP (medicated) and a number of other health issues that affect my daily life, but I have learned to live my life comfortably (and sometimes even joyfully) DESPITE these issues.
When I brush my teeth, I mindfully think about getting each tooth clean. When I make my one (& only) expresso black coffee in the morning, I smell the aroma with pleasure and savour the rich taste mindfully. When I have my gluten free cereal and fresh berries, I imagine the fibre swimming through my digestive system and the anti-oxidant qualities of the berries recharging my immune system. I love the tart/sweetness of berries. I savour each bubble of flavour. I live in the moment and mindfully to the best of my ability. When the back, hip or other pain is excruciating, I sit for a while and mentally relax each muscle from the top of my head through to my toes. If that doesn’t work, I pack my camera gear and slowly walk outdoors looking around for nature subjects to photograph. I watch the bees hovering around the flowers or search for birds chirping away to each, to capture with my DSLR.
I’ve found a creative hobby which takes me outdoors (most of the time depending on my energy & the weather) and absorbs my mind & body BEYOND the state of Pain, into a state of sheer pleasure and contentedness (sometimes even amusement).
I’ve acquired the ability to float beyond my symptoms and live my life (for the most part) Mindfully.
It took several months to really capture this state of Mindful Living, (despite chronic illness and pain).
If I was bed-ridden or house-bound like I have been at various times in the last 15 years, I usually drifted in and out of sleep. My body seems to need more sleep over the years as I never, ever got to that stage of deep, restorative sleep when working.
I can only sleep with some meds now AND most importantly, going to bed with an empty mind, with not a care in the world, or a thought about the next day. I rarely decide ahead of time what I am going to do the next day/week/month/year. I get up whenever I feel fully rested, check the weather and decide what I will do for the day.
Will I go out for a slow walk taking photos? Will I open a book or magazine and read? Will I sit in my desk chair staring out the window mindfully watching the wind blow the flowers & bushes around in the breeze for a few hours? Will I write to my internet friends? Will I go back to bed and sink into the cushioned comfort of my bed (because my energy and/or pain levels seduce me back to my bed for more rest).
Whatever.
I live in this moment, at this time of my life and welcome whatever each day brings.
Life is never perfect. For anyone. Every living being suffers at some time in their Life. Even a highly enlightened Buddhist Monk has to face and resolve the occasional difficulty or toothache.
We are born, we live and then we all Die. It’s a cycle that every single one of us will experience.
So while it would be nice to be free of chronic pain and other symptoms, I have learned to live with them (for the most part).
Living Mindfully does make a difference.
Victoria, your description of mindfulness reads like a poem. Thank you for sharing it.
The mindfulness you describe in your comment is much like what I experience when I use the techniques I described in this article.
I think your way of achieving mindfulness is just as valid as the way I described. It’s a great addition to this article. Again, thanks for sharing it 🙂
While this specific approach may not work for everyone, it may work for some. You won’t know unless you try it! What works for me may not work for my friend Carolyn, but she is at least willing to try it. Be open to new things. I know it is difficult and we have all had many disappointment. I’ve been dealing with these chronic pain disorders for about 15 years now.
I found personally that focusing on the positive things in my life keep me from going down in to the “black hole” that I was headed towards. I have many days that I cannot leave the house or sometimes my bed. Sucks as I live in a beautiful vacation destination for many people. Often I cannot even open the blinds. I choose not to focus on those things, not to think about that if I can help it.
I have my computer and internet connection as a window to the WORLD! I have many blessings in my life. Sometimes they are few, like my little dog. Sometimes they are great, like my friends who message me to see how I am.
Be open!
Thanks for your comment, Chele. It buzzes with good vibes 🙂
If your computer is your window to the world, you might also like this article:
http://cfsrecoveryproject.com/could-this-tool-double-your-energy-when-youre-on-the-computer/
Much love and well wishes,
Johannes
This kind op therapies can be helpfull to temper the autonomic overactivity respons thus abnormal stressrespons.
But if this system is ‘broken’ due to infection, genetic problems or defect it will not make you better. It is the same if you do not use a broken arm for some time. My personal view is that the abnormal stressrespons by ME/CFS is te course of the disease and that is ‘broken’ just like an broken arm. Have a nice day everybody, Moniek
THIS TECHNIQUE SAVES ME EVERY DAY.
DO NOT GIVE YOUR ENERGY TO SOMEONE THAT DOES NOT APPRECIATE IT. IT IS PRECIOUS-GIVE IT ONLY TO SOMEONE THAT MAKES YOU FEEL BETTER ABOUT YOURSELF”
Would appreciate references to studies Cort refers to — the ones that show fight/flight reaction is an issue in this disorder. Have never run across them.
Regards,
Deborah
Anything that refers to ‘sympathetic dominance’ or sympathetic activation refers to increased activation of the fight/flight response. Anything that refers to reduced heart rate variability refers to sympathetic nervous system functioning and reduced parasymppathetic nervous system functioning.
QJM. 2012 Sep;105(9):831-8. doi: 10.1093/qjmed/hcs085. Epub 2012 Jun 4.
Impaired blood pressure variability in chronic fatigue syndrome–a potential biomarker.
Frith J, Zalewski P, Klawe JJ, Pairman J, Bitner A, Tafil-Klawe M, Newton JL.
Elevated nocturnal blood pressure and heart rate in adolescent chronic fatigue syndrome.
Hurum H, Sulheim D, Thaulow E, Wyller VB.
Acta Paediatr. 2011 Feb;100(2):289-92. doi: 10.1111/j.1651-2227.2010.02073.x. Epub 2010 Nov 17.
Neurohumoral and haemodynamic profile in postural tachycardia and chronic fatigue syndromes.
Okamoto LE, Raj SR, Peltier A, Gamboa A, Shibao C, Diedrich A, Black BK, Robertson D, Biaggioni I.
Clin Sci (Lond). 2012 Feb;122(4):183-92. doi: 10.1042/CS20110200.
Eur J Appl Physiol. 2011 Mar;111(3):497-507. doi: 10.1007/s00421-010-1670-9. Epub 2010 Oct 2.
Blood pressure variability and closed-loop baroreflex assessment in adolescent chronic fatigue syndrome during supine rest and orthostatic stress.
Wyller VB, Barbieri R, Saul JP.
Source
Department of Pediatrics, Rikshospitalet University Hospital, 0027, Oslo, Norway. brwylle@online.no
QJM. 2011 Aug;104(8):681-7. doi: 10.1093/qjmed/hcr029. Epub 2011 Mar 7.
Physical activity intensity but not sedentary activity is reduced in chronic fatigue syndrome and is associated with autonomic regulation.
Newton JL, Pairman J, Hallsworth K, Moore S, Plötz T, Trenell MI.
Exp Brain Res. 2010 Jul;204(1):71-8. doi: 10.1007/s00221-010-2296-1. Epub 2010 May 26.
Reduced heart rate variability predicts poor sleep quality in a case-control study of chronic fatigue syndrome.
Burton AR, Rahman K, Kadota Y, Lloyd A, Vollmer-Conna U.
Higher heart rate and reduced heart rate variability persist during sleep in chronic fatigue syndrome: a population-based study.
Boneva RS, Decker MJ, Maloney EM, Lin JM, Jones JF, Helgason HG, Heim CM, Rye DB, Reeves WC.
Auton Neurosci. 2007 Dec 30;137(1-2):94-101. Epub 2007 Sep 12.
Clin Physiol Funct Imaging. 2007 Jul;27(4):231-8.
Sympathetic predominance of cardiovascular regulation during mild orthostatic stress in adolescents with chronic fatigue.
Wyller VB, Saul JP, Amlie JP, Thaulow E.
I’ve just read the above blog and all the responses that followed. I’ve had ME\CFS for over 12 years now. I am a life coach too and was a psychosocial counselor for many years before the illness. So I would say that I was already pretty well equipped to ‘cope’ with life’s challenges when my own life came tumbling down…
There are many different approaches out there (as we all know) and some work for us while others do not. Johannes suggests doing some things that work for him in order to add Joy to his life. While this may seem trivial to some, I feel it is very important to consider ANY means that can add joy to our life and make getting through everyday challenges a bit less grueling. While I personally do not hum as I brush my teeth, I do put on my favorite John Denver albums when I’m well enough to do some cooking; I sing along and the job is done more pleasantly focusing less on the discomfort in my legs and back as I stand chopping carrots.
When I have to do something on a bad day feeling that I am moving through molasses and every muscle screams, I keep repeating to myself out loud: “We can do this”. For some reason, it helps. I also use meditation and visualization to quiet my mind which just runs amok at the least little upset.
Our load is so heavy! I welcome all of your comments and strategies that may bring a little more joy into my life.
Peace and Brightness. 🙂
It depends to a large extent on environment and one’s location. Some societies are more accepting of disabled people and disability in general and of difference while other societies are more narrow minded and intolerant. Take the example of Ireland where anybody who is different is immediately discriminated against and stigmatised and even subjected to abuse and violence. You’ve all seen the problems between Irish catholics and protestants over the years, and it is quite obvious that most Irish people are intolerant and do not like people they consider to be different. One sees disabled being treated the like this in Ireland, and they are discrimianted and stigmatised and subjected to abuse and violence, and this creates many, many social problems. And they are also the first to suffer from government cutbacks during recessionary or depressionary times. Its important that we acknowledge these facts. No man / woman is an island and there is a continuous dynamic relationship between the individual and society. One can presume to be happy, but how happy can a disabled person really be if he / she is being discriminated against, stigmatised, socially ostracised, backbited and gossiped about, beliittled and mocked, abused, their legal rights undermined, the victim of crime / anti-social behaviour etc. ??
I am happy now just to find your website. You have information that will be easy for my family and friends to understand; and me too!. Monique is extremely lucky to have a boyfriend that helps her so much and they can still laugh together. When one partner becomes ill, it can take a toll on that relationship. My computer has become my best friend since I am home so much. It is what keeps me touch with others with the same illness. I am happy that I have medical insurance. I am happy that I was recently approved for Social Security disability. That was a huge war. I could not have done it without my wonderful attorney. I have numerous issues – ME/CFS, Fibromyalgia, neuropathy, IBS, and numerous bulging/herniated discs on my spine, and other problems. I look forward to reading more from both of you.
Thanks to Cort and Johannes for understanding!
Thanks Joyce…Glad you’re here and let’s look forward to better times 🙂
You are so right Joyce, I am a very lucky person with the kind of man I have on my side, it makes a world of difference and I wish everyone would have that, that you could have that…
I am happy that you won your case for SSD and had the great attorney that could help you with that, so wonderful, but too bad it had to be such a war. I wish you better times as well.
It strikes me that what Johannes is trying to share here is very helpful and I really commend him for his efforts. I have no problem believing his success story as it resonates with my own story of recovery.
I understand how some people may think this is just “life coaching” to feel better. However, besides feeling better being a good thing, I hope that readers recognise it as much more than that!
Now some may find offence if they read this and think that it implies that CFS/ME & Fibromyalgia is all in the mind. After all, we have fought long and hard to have this illness recognised as a real physical illness. Cleary CFS/ME & Fibromyalgia are real physical illnesses with real (& let’s face, severe) bodily dysfunction.
However, if you see the cause of the illness as a dysfunction in the Autonomic Nervous System (and I agree that this is the cause), then you must recognise the connection with the psychological side of this illness. After all, the brain is the biggest part of the nervous system.
The Autonomic Nervous System is central to the body’s function and connected to every system and every part of the human experience, including our body systems and our mind. So nowhere else is discussion more relevant about the mind/body connection than a dysfunction of where the two are literally connected!
This is why a recent study showed the tremendous impact of meditation on pain (strange that we need a study for this when most experts in meditation have known this for centuries). The connection between the pain perception and processing areas of the brain and arousal centres in the brain are direct and known.
Whilst I understand some peoples concern about the system being ‘broken’ and ‘genetic problems’, we need to remember the opportunities that neuroplasticity presents when dealing with a neurological dysfunction.
Well done Johannes.
Thanks for your sharing your support and insights, Dan.
I love your point that using our mind is one of the best methods we have to influence our autonomic nervous system.
If Johannes is charging for any of this info-I am not interested!! I am surprised it would even be on this website that 40% of donation would go to this author. We know absolutely nothing about him , except what he says.
This whole thing sounds like a SCAM to me. Sorry folks!!!
There are plenty of legitimate experts out there to help you-in books cd’s that you know WHO they are.Plenty of you are smart enough to figure this out.
San Diego #1
Hi San Diego #1
All I can offer as indicators and evidence of that I’m not a scam is
– my bio at http://cfsrecoveryproject.com/being-in-service/ (I even talk there about whether I’m a scam 😉
– that Cort Johnson trusts me and my work enough to publish it on his website
– what past colleagues and clients have to say about me on my website (http://cfsrecoveryproject.com/praise/) and linkedin (http://www.linkedin.com/in/jcstarke)
Johannes
Hello Everyone
Yesterday my daughter and I joined a community choir in the small town close to our home. We had fun singing off key for me and losing my way among the multi-part songs for tenor, men, alto, suprano and higher. Wow. Someone heard me singing as I rolled down the sidewalk of our High School and asked me to join. One year later and voila we were singing.
I have lots to learn as I have forgotten much of what I used to know and take for granted; I sang my first solo at age 5 standing on the stage leaning down on my ministers shoulder because I had hidden behind the Christmas tree before she coaxed me out. I sang Away in a Manger with all the verses from my heart.
Over the years I sang many solos, entertaining many veterans and seniors with my Dad and friends. We had a lot of fun singing. Years passed by and I moved away and began singing in seniors homes in the towns near my park while each evening playing my bagpipes on the hill behind my home away from home. I thought I was alone until some campers asked me: “Who is the piper playing music in the distance?” I smiled and on shaking knees walked away after asking them to our show that night. I used to highland dance in a troupe that along with my bagpipe band traveled all over America playing in parades, on stage, and at football games. Then crash.
I re-learned how to talk, walk and live with pain every nanosecond of my day. My arms hung loosely at my sides as they were to heavy to lift. Makeup gone, earrings gone, bending gone, dancing gone, singing gone, bagpipes gone and holding up my head gone. Crash again. Re-learn and laugh. Funny stories with my rehab group “The Goonies”, we discovered that people around us in the restaurant left the area. So we hatched a plan to see how fast we could get the doctors, nurses, people etcs to leave. One fellow was on a stretcher, one in a wheelchair and me in my backbrace and funny clothes, with my neck dangling to the right and drool from my mouth. The guy in the wheelchair could hold a tray and of course we needed a straw for our friend. And then our fun began as we burped, drooled, spilled and chilled everyone else. Our best time was 10 seconds flat and we laughed for so long we scared off everyone. They made a separate area for doctors shortly after that.
Little did I know what was yet to be. Thirty-two years later I am attempting singing with my daughter. Then as I leave I lean on the railing and it breaks under my hand leaving me falling into the guy who turned in time to catch me. I was using my cane as my wheelchair waited in the car. My oxygen tank was carried by my daughter in and out. Later I was on computer finishing an article for the first time in a long while that I hope makes sense…pain oh boy left leg this time and all the quick release morphine and muscle relaxants were like placebos. Finally I fell asleep and woke up with every one of my dogs laying across my body literally from head to toe. They had figured out I needed their warmth and love.
It was like a warm living blanket with two keeping my left leg pressed somehow between them and licking my swollen ankles. Love, peace, harmony. My husband had kept everything quiet so I slept till noon with the dogs on me for hours. Wow.
Long ago I studied Science, and Psychology and Sociology. I wanted to combine them into a thesis but I was told they only learned in silos. Now everything is mixed together and it is messy. Psych is stronger as psych without mimicking science. Soc. is better without science too and Economics well what is it? The formulas for the first economics guru failed to work until one night when the janitor was cleaning he looked at the formula and corrected it. I like that janitor, he was creative and smart but he was ignored. So I am biased. Now I want to study love, peace and harmony without statistics or numbers or equations but in stories, communities who think for themselves what they need, and that is being a liberatorian participatory learner. As a scientist I knew that cells were different from what I was taught. I believed that physics was more chaos with much smaller particles as I watched a specialized physics machine knock atoms to bits for fun with a friend with the key to the room.
Body, mind, heart and spirit are in a multi-dimensional circle of me, all interconnected and moving. We are all interconnected with every being; rock, water, people, earth, sky, sun, moon as one. Life is a second to me as autonomic failure has held me gently many times and brought me back home. One day, someday, I will pass into another part of existence which I know will be when I am very old. I am writing a story about peace and interconnectivity and I hope it will be printed in a journal or if need be on my blog. Life is what we need it to be. Sometimes I feel exhausted and wish for an end to pain but I know I will live a long life with pain and fun and love. It is my dream to create circles of love everywhere so we can clean our world together thereby saving Mother Earth and ourselves through our oneness. I have asked for a prof and a univ. to be with me in a PhD that will be one earth open …
Great to hear you and your daughter are having fun singing, Cindy. Singing is also one of my favorite activities. I had to stop playing the Cello when I came down with ME/CFS. Fortunately, I soon realized that I could still sing, and that singing is just as much fun.
I also appreciate your tangible and scintillating explanation of your life before and with M.E. Your anecdotes are touching and hilarious, and inspire in me deep admiration for your ability to live and embrace life.
It’s good to read that you are living a life of peace, love, and harmony, despite the pain that is a constant in your life. I know others who are able to do this, but as pain is one of the few things I’m afraid of in life, it is so uplifting to hear of people who rise above it.
Wow, there can be a lot of venom in this community. I say that because I read the article and thought it was pleasant – I waited 2 days to read it because before that it was too overwhelming to read as I was having a crash. It’s odd that multiple responses were not only negative, but personally attacking and used words like “hate” – lots of anger about how this kind of work cannot cure M.E. Take a step back, people, and read the title again – it never claimed to cure our disease. Think about what you are doing to yourselves, I know you feel misunderstood, but you are very sick, do you really have the energy to focus everything you have for a few minutes or an hour to write an angry response to an article that apparently was not even aimed at your issues, and then feel the anxiety of waiting to see if someone responded? I don’t think that is energy well spent in your life, even though, yes, anger and frustration do get very overwhelming sometimes.
This is a fellow patient, not some clueless doctor, who is trying to offer us hope from the other side. He is not dismissing us. He is not dangling snake oil before us. He is only offering a little light from the world beyond pain, and trying to help others feel less alone. The funny thing is, of the few comments here, most are talking about how this advice is completely irrelevant to them, and then go on to describe how they have been doing exactly the same thing. This seems to me like an article posted about how making soup can help some people who have a cold feel better, and then posting angry comments that you already made some soup and you still have a cold. Well, no one said it was a cure, it was just a gentle reminder for those who were too sick to remember to make soup, in case that might help relieve them a bit.
I personally liked it – yes I do focus on happiness and enjoyment most of the time, yes I am bedbound most of the time, and yes I have found meaning even through all the pain. But you know, there are days when I am in more pain than usual, I got less sleep, I am more cranky and more brain-fogged… and those are the days when reading this article over (the phrases here and there that I can focus long enough to absorb) might help remind me of a way to get out of the pain. There are days when doing so will work, when I will smile a bit, when things won’t seem so bad and I will get a brief release from the pain cranking down on my body. There are other days when I will read this and it won’t be the thing I need – when instead I will need to scream, to cry, to lean on a friend, to eat more anti-inflammatory food, to stretch more, to take my pills which I forgot. There is no one answer to such a complex illness.
But we cannot forget that M.E., although caused by something unrelated, is often eventually co-morbid with (and exacerbated by) depression and anxiety for so many. The mind is a very powerful tool, and for some humans stress is so severe that it can even lead to cancers and other illness, and for some focused meditation and stress management can help lead to remission of cancer and other illness – there are plenty of studies on this, no need to shout that the mind is never related to the rest of our body. Just because our society and insurance companies have built a stigma around anything related to the brain, does not mean that to admit that it is influential in health is akin to admitting we are imagining terrible immune and other lab results, or imagining their improvement. A comprehensive system failure such as in M.E. requires comprehensive means to correct it, and aiding brain health is one weapon in a daily arsenal that should include nutrition, physical conditioning (yes, even from bed), social support, medical intervention, sleep improvement tactics, etc.
I understand that we as a community feel so short of resources that we do not feel we can afford to put a single dollar or minute more into mental health, where it should instead be focused on medical research and drug intervention. I feel that way too, often. But we do not need to deal with that feeling by attacking one of our own. We know for a fact that this illness label has been given to people with likely 8 or more separate illnesses, covering immune, adrenal, endocrine, digestive, and other failures within the body. Whether or not a recovered individual had the same illness we ourselves had, we should still be glad for his recovery, and encourage him to reach out to whomever he may among our ranks who might be helped in the same way he was. No, it’s not a cure. But since no one likely was intending to use the advise to cure their disease, no harm is done.
However, some of the responses were so angry, I must say it reminded me why I avoid hanging with patient groups as much as possible. From one sick person to another – and maybe you all will relate to what I am saying here – sick people can be unpleasant, angry, defensive, and combative in areas of conversation that were never meant to be taken personally. Whenever I talk with other sick folk and try to focus on anything positive to do about my condition or to look forward to my future (because we have to talk about something), inevitably 3 of every 6 people I am talking to in a group will immediately attack me as if what I am saying about myself is somehow accusing them of something. They say, no you will never get better, no that does not work, I know all about it because I tried that 10 years ago and it failed, no no no. The other 3 may just sit there in silence and look down, and one will be my ally and eventually say quietly “Well, I’m looking for something too, I might try the same thing.” I don’t mind the venting, the acknowledging how hard this is, the turning to others for support – that is needed. But in the interest of having some enjoyment, I will from time to time also turn to talking about something positive, the way I will with healthy people. When I talk to the healthy, they complain, they moan, and then eventually they talk about something good, something to look forward to that life might get better. Perhaps in this spirit, any article written about a non-chemical/medication topic should begin with “This is not a cure, I know that M.E. is a very complex and serious illness. And this tactic will not work for everybody. But while you are sick, perhaps even one of you may feel some temporary relief of symptoms by trying…” Is it so wrong to talk about hope amongst the chronically ill?
I think a critical skill is knowing when a person is harmful to your health, and knowing when they are merely inconsequential or benevolent. I have found 95% of “mental health” professionals dealing with “CFS”/M.E. to be harmful, because they approach it never having been through it, and as though changing your thought pattern will cure your disease because if you hadn’t thought your anti-social depressing screwed-up thoughts in the first place, you never would have gotten sick like normal people don’t. They always seem to approach it as if something is wrong with you, as if you did not get the memo everyone else did on the planet and if you just smile more you can go back to work – essentially, your disease is your fault. Let’s be truthful – I think they came to this conclusion because they see the anger and hopelessness characteristic of so many of us with this illness and they assume that thinking came before the disease, rather than recognizing for most of us it came after loss of the most basic ways we identified ourselves, loss of body, loss of relationships, family, job, after poverty, after decades of rejection and vile blame from doctors we went to desperate for help… the constant rejection, physical pain, grief, and fear about what is happening to our bodies changed us. Since these therapists never knew us before illness, they blame our thought patterns, assuming the thought came first – their order is totally backwards, and the feelings we have are human and understandable. But I for one did not sense from this article that the author was one of those. There was no hint in it of blame, of over-simplistic reasoning about the cause of our illness, of disdain for who we are as people. And I was looking for it. But it came across to me as a person who is genuinely seeking to find ways to infuse joy into his day – the simple kind of joys of childhood, that for so many of us was a time when pleasure came more easily. I don’t think there’s anything wrong with wanting to recapture that mentality, of what true happiness is, and I don’t think there’s anything wrong with wanting to help people dealing with very complex pain and disease that will be a constant in their lives – maybe even permanently for some – to recapture some of that happiness even for a brief moment in their mornings.
I personally believe that some of the greatest work we can do on Earth is to give to those who cannot return our efforts. I would like nothing more than to give energy that I do not yet have, to serve those who are terminally ill, such as those in a hospice or in similar need. The purity of love we can give to make others feel loved simply for being human, is something that gives humanity to both the receiver and the giver. I admit I would be dismayed if I was washing the feet of someone who is dying, and he looked up at me and said “I hate the work you do, washing my feet doesn’t cure me at all!” I wish instead my efforts were taken in the light in which they were given, to provide comfort and some ray of hope and sense of not being alone to someone who is otherwise very isolated and lacking in basic comfort. It would be so nice if he instead dosed off to sleep with a faint smile, or said “That feels a little better, thanks.”
good points Sunshine, I think you’re right in what you are saying. I will let this sink in some more, but will try to keep in mind. Because I think you have made a very good analysis on what is going on and I (have to admit) made myself guilty of too – from misunderstanding, looking at what it’s not meant to be, not being the target for the part where I had already found what Johannes was writing about and so not feel adressed etc. Thank you for this insight, it can help me (and hopefully others) what made and makes me so sensitive at moments I shouldn’t be, no matter how understandable from past experiences.
Your acknowledgement of my article and my work resonates deeply with me. I feel seen and very happy because of it.
Your soup analogy with regards to the critical comments is hitting the nail on the head. While I believe that it’s important for people to clearly state that using the mind is not the cure to this illness (especially to strengthen advocacy work), I also found it striking that the people who said mindfulness doesn’t work wrote that they are already using it.
I can also relate to your experience that talking to healthy people is a good alternative to communicating within a self-help group. While the self-help groups that I’ve visited in San Francisco and Vacaville were very positive, I also like to sharing from my heart with mostly healthy peers in my sangha. I think both are important.
Your suggestion of putting at the beginning of each article a disclaimer that I’m not offering a cure, is something another helpful person suggested, too. I think it’s a great idea, and I’ll try it in my next article on Health Rising.
Having read your entire comment, I’m feeling intense gratitude in my body, plus tears in my eyes. I feel seen, acknowledged, validated. Thank you. The immense wisdom you’ve acquired through living with this illness speaks though each one of your words—and I appreciate every single one of them.
Thank you.
Thank you for this discussion – I think it shows the broad spectrum of perspective regarding living with chronic pain. My colleague, Michael Ellner, and I (we are hypnotherapists) employ some of the tactics you share in the original blogger’s post. We have found that, while still acknowledging and accepting conditions that are dealt to us, being able to take advantage of brain plasticity and active mindfulness affords pain sufferers reduction and relief from suffering.
In our over 40 yrs combined experience in helping people deal with chronic pain, we find that people who feel better, heal better. We even created a book to help educate physicians in this approach (HOPE is Realistic – A Physician’s Guide to Helping Patients Take Suffering Out of Pain) and continue to educate fellow hypnotists to be able to do the same.
Happiness, Joy, Mirth, Love, Positivity, etc. these are all admirable qualities, and I support them 100% and wish everybody could have them (for free), but unfortunately they are in short supply due to the way environments and societies are constructed. But these human constructs can be changed. We could have a heaven on earth, but instead we have a hell on earth for most of humanity. We are all told over and over again, there is not enough money for ME/CFS research, drugs, proper in-depth diagnosis, treatments, clinics, etc. but there is actually enough money, an over-abundance of money and an abundance of human ingenuity and creativity. I will address this matter below.
I agree with Dan’s proposition and his book on the ANS as being a root causes of ME/CFS. But, Dan if one’s ANS is being infected by viruses / mycoplasmas and/or undermined by toxins, do you think it might (slightly) undermine the workings of the ANS. And if so, do you think the virus / mycoplasma and /or toxin would also be a causal factor. The vast amount of research supports infection and toxin induced damage and ANS dysfunction and the work of the Lights in Utah has supported this. Though I agree with you that meditation and prayer is quite useful in the context of the ANS, I also realise that anti-viral drugs and detoxifying toxins from the nervous system is very useful and a lot more direct. I’ve mentioned some of this on http://www.cfs-ireland.com
To get back to the subject of happiness, well the following would increase the happiness and joy of many, many people and would do wonders for the ANS of ME/CFS patients and those with other physical illnesses and disabilities.
The secret of happiness – Basic Changes and Reforms for those countries on the edge of “Fiscal Cliffs”, National bankruptcy, Government Bail-outs, Social Security cutbacks, Healthcare cutbacks, and other such crisis
• Stop the bail out of banks. Break the connection between bank debt and sovereign debt. Let the banks bear the burden of paying off the bondholders and other creditors. One can do this through the issuing of 60 year bonds, 90 year bonds or 100 year bonds, which the banks would pay back every year. The taxpayers should not pay this. Refund the Irish nation 70 billion euros for what has been spent on the banks so far. Then leave the euro and go back to the Irish pound, at 8% below sterling, so as to encourage exports.
• Abolish the Federal Reserve, ECB, and all central banks. Replace retail banks with the credit system proposed by the economist Mike Montagne on http://www.perfecteconomy.com/ . This would involve radical debt restructuring, debt write downs, time period restructuring, removal of interest, etc. which would make household debt and consumer debt more sustainable. This would improve credit expansion and stabilise it over time, providing economic growth, recovery, jobs, investment and vast social and economic benefits. It would also eliminate inflation and deflation.
• Identify all national debt which is owed to a central bank and write it off. Remove it from the national debt, the taxpayers should not pay this debt. These central banks create money out of nothing and charge interest on it, and then they use governments to extort money from the people through taxes and other charges to pay this debt which was created out of nothing. They enslaved the people.
• (In USA) Cut US military spending in half. This would free up funds for other social and economic purposes, including investing in the American people, in their jobs, their education and training, their health and well being, their families and communities. Also invest in achieving tolerance, respect, social justice and peace between peoples and between nations.
• (In USA) A special Employment- Replacement tax for those companies and investment banks which have relocated American jobs to the Far East and Mexico and left American families and communities unemployed and destitute. This tax would be used to generate investment and employment in these American communities. And this would increase tax revenues as more people start working and spending again.
• New political parties which are more accountable to the people. Implement Constitutional right for constituents to recall their politicians and get a re-vote.
• Stricter laws on Campaign finance and politician financing. Including the closing of loopholes and possible loopholes. An independent body outside the state, such as UN agency / EU agency and Transparency International branch to audit political parties, individual politicians and their donors. And identify and audit all areas where corruption would be likely to take place.
• Audit all government spending, including items such as defence, healthcare, social welfare, education, housing and loans, and infrastructure projects to identify fraud, over-payment and theft.
• Invest in Free energy research. Deploy free energy machines to every community and to businesses. This would reduce energy costs and make communities sustainable, enabling them to grow and prosper and would help make the world more sustainable.
• Use the UN and World Bank and international cooperation between nations to invest $ 500 billion per year to eliminate poverty worldwide. Focussing on community banking and social credit, small and medium sized businesses, free energy machines at local level, clean water and food, empowerment of girls and women in communities, free or low cost education and healthcare.
• Clean water, air, food in all countries. No GMO foods, no fluoride in water, no mercury in teeth, no contamination of vaccines. Encouragement of organic farming and foods.
• A UN body to work alongside Transparency International to monitor corruption in all countries. And use their resources to expose it and fight it.
• Use the extra government funds to invest in the health of the people. This would include building better equipped and staffed clinics for serious illnesses and also for hospitals. Universal health insurance where everybody is covered by private insurance. Privitisation fuels innovation, individual initiative, high productivity, better control of costs and better efficiency.
• The protection of a nations’ natural resources such as oil, gas, coal, minerals and other commodities through changes to national laws and new international agreements to provide such protections. These resources belong to the people, not to politicians and corporate interests.
• More local credit unions to provide finance to individuals, small businesses and communities.
• Free press and media. No concentration of ownership. No censorship of the Internet.
• Reduction of all taxes. Abolition of some taxes. Introduction of a site value tax once economies in Europe and America recover from the 2008 recession and austerity.
• Implement greater employee share ownership and community share ownership through targeted tax incentives, laws and international trade agreements. This would spread out the wealth from free trade among the people.
• Integrate fair trade schemes into all international trade agreements and into distributor and retailer agreements worldwide.
• Rigorous protection of individual rights
I’m going to try this novel and easy idea to infuse some mindfulness and re-awaken to the wonder that is so easily missed. Thanks.
Glad to hear you’ll try out the technique described in this article. I’d love to hear how it goes!
I would like to stand up for anger, and caffine and heavy metal.
I came into this disease as a meditating organic gardener who hadn’t touched stimulants for years. I practiced craniosacral therapy a subtle and beautiful technique which I had to put to one side and hope to return to one day.
After 7 years of the harshest learning I wish I could never know I now use anger, Righteous anger; not petty anger directed at others wasting energy but white hot anger that fills you, pours through you, burns away doubt, distraction and for a short time ..pain. Think of your most unfavourite Dr, just the one?…think contempt and complacency and feel the anger burn and grow, held in a stasis like the heart of a furnace. This is pure energy that asks nothing of me; it is a gift..someone said that…
I use caffine to build on the cortisol burst after waking and surf through the morning, Metal is good for a late afternoon burst whilst I cook, one of my pleasures, and my wife isn’t home…
Sounds like I’m doing everything wrong….but I am improving, nearly 4 years now. Yes I have pain 24/7 and sometimes I can’t walk….I sleep alot and at the end of the week I’m shot. I have worked through and have managed this not because I recklessly plow on through boom and bust but by learning when to stop.
so perhaps this is a bonkers….it worked for me or perhaps it is a ode to testosterone or some such. time will tell……someone said that as well
Glad to hear that anger, caffeine and heavy metal work for you!
We all need to experiment to find out what works for us. Your comment may inspire some people with ME/CFS to look into directions they might have previously not looked into.
Thanks for sharing 🙂
Thanks for this article. I’m not sure how I feel about it but those that are writing paragraph long complaints definitely have much more energy than me. ? Not to mention are totally working themselves up over something that would cause more stress and a flare up. Don’t like it move on! Lol!