I suppose I’m depressed, but it’s not the slam-bang suck-out-my-soul torture of the early illness days when I choked inside my own Pigpen-like dust storm.
After years of trying hard to figure everything out Carol muses about finding herself becoming a bit of a couch potato
I have my distractions. I can laugh out loud at the satire of HBO’s “Last Week Tonight with John Oliver” and “Silicon Valley”. Recently I enjoyed the witty “A Gentleman’s Guide to Love and Murder”. And the few minutes each week when we watch the antics of my 18 month old grandson Ira bring me real delight.
One cup of tea in the morning (not every morning) gives me about a two hour spurt of enough activation to shower, prepare and eat breakfast, sit at my computer. I can write for about an hour. Like now. Aside: But I can only allow myself the one cup. Otherwise I suffer burning urination, the result of a strange and freaky reaction to caffeine, and nasty heartburn/esophagitis. Some days I try to trick my body by sneaking in another quarter cup later in the morning, but I’m always sorry the next day.
Recently, however, my spirit is reacting to the 15 years of enforced idleness, of low energy and pacing, by deserting me. It’s as if I’ve gotten lost inside the couch-potato life and can’t muster up desire to do much. And the more I don’t do anything, the more I don’t care about doing anything.
It’s a gentle miasma of listlessness.
It’s called ennui. From the dictionary: “weariness and dissatisfaction with life that results from a loss of interest or sense of excitement”
I’m stalled in ennui, defined on Dictionary.com as “a feeling of utter weariness and discontent resulting from satiety or lack of interest.” Usually the satiety is caused by over-participation in pleasurable activities to the point where you just take them all for granted and become bored. You are full beyond capacity. For those of us with ME/CFS, however, the satiety comes from over-participation in the LACK of activity.
I’m feeling the truth of this quote from 19th century historian and statesman George Bancroft: “Ennui is the desire of activity without the fit means of gratifying the desire.”
The daily languid routines, the need to rest, the worry about crashing, the intermittent brain fog that settles into synapses and makes complicated thoughts impossible. All that.
And more.
I’m gorged with an abundance of theories. Cort does a magnificent job of sifting through all the latest possibilities of the causes of and treatments for ME/CFS, and then presenting them clearly and articulately. I also receive bulletins from other sources. I need this information to make intelligent and reasonable decisions and to present to my doctors. I find, however, apathy now descending when there is so much to make sense of.
Those complex theories no long excite
I used to feel motivated when I read about some possible treatment and immediately researched and sought practitioners. That intenseness and zeal have faded after years of unsuccessful results, though I continue to be confronted by a growing abundance of theories that juggle a vocabulary I can barely understand (“humoral immune response”, “mast cell activation disorder”, and get this one, from PubMed and published on cfsknowledgecenter.com:
Glutathione (GSH) has a crucial role in cellular signaling and antioxidant defenses either by reacting directly with reactive oxygen or nitrogen species or by acting as an essential cofactor for GSH S-transferases and glutathione peroxidases.
Sorry. Even after looking up every word, I can’t penetrate that.
I am NOT suggesting these sites stop publishing research! I’m trying to convey the burden on those of us with ME/CFS. We HAVE to sift through this stuff ourselves, regardless of our weakness and pain and brain fog.
I suppose this ennui could be the flip side of anxiety, which used to be my default reaction when overwhelmed by too much information. After years of manic fear over missing some crucial piece of information that would lead to a cure, I settled into a more relaxed acceptance of the disease and those writing about it. With the current increase in research and speculation and my consequent feelings of overload, maybe that acceptance has mutated into apathy. Or “acedia”, from the Latin and Greek, defined as indifference, spiritual or mental sloth. I’m a sloth.
A good read on a spring afternoon does await, though … it could be worse.
Isn’t that one of the seven deadly sins???
Nonetheless, I’ll take ennui over panic any day.
I’m going to assume that this condition is temporary, a phase. Besides, it’s a beautiful spring day. I will sit on my screened-in porch and finish reading Little Failure by Gary Shteyngart, which I think is hilarious.
YAH, CAROL! 12 YRS IN & I SURE DO RELATE! I KEEP SAYING, ”STOP RUNNING AFTER SOLUTIONS UNTIL WE KNOW THE CAUSE!” IT ONLY USES UP OUR LIMITED ENERGY & RESOURCES & MAKES US MORE SICK! ENJOY YOUR REST! I’M MANAGING TO FIND SOME –A LITTLE-ENERGY FOR GARDENING THIS YEAR. HOW I RELISH HAVING SOME ”MOTIVATION” FOR A CHANGE! TAKE CARE, BJ.
Glad to hear about your gardening. A beautiful garden is mood lifting.Many of our plants were pretty much destroyed by the very harsh eastern winter.
When you are held hostage to the inability to enjoy any part of life that requires energy and mobility, it feels like this:
The documented reaction steps to dying.
I have reached the acceptance step. So worn down from Nursing myself, I am starting to not give a D.
I so understand how you feel. I too am enjoying the ennui over the frustration from my earlier years. It is difficult to remain motivated when we can do so little. I use to go to bed at night and think of all the things I would like to do the next day. Now, those thoughts are blissfully gone, as I guess I have more acceptance of my terrible limitations. There is something to be said for lack of motivation. It just makes it easier to accept what is. I often think of all those who have dealt with this illness for years before me. How much more difficult without the internet for information and also for distraction and entertainment. I am thankful for my iPad which is my companion on my better days. So grateful for iBooks, e magazines, and Netflix. Can’t imagine life without those. How amazing that I can purchase and read books, magazines and movies without leaving the house! I am wishing you peace and the best possible health for the summer to come. I really enjoy reading your entries. Thank you also to Cort for all the information you provide. I have printed many articles lately that I will bring in to my Doctor on my next visit.
I’m so grateful for the Internet too. Not only for connection with others, for information, for books, and for entertainment, but also for shopping!
I Agree with All that you Wrote and Responded about! After 20 years in ,My ambition to share new findings has gone. I agree that those noble souls who have gone before, had NONE of the luxuries we do. I too, am comforted by the benefits of being burdened with this bundle of ILLS~ in this day and age! Sloth is EXACTLY what I have been relating to !However , having a new sale Quilt delivered to my door is energy saving and saves gas ,too! I’m too tired to watch much, and can only read A tad. I have asked to be removed from my church position .I must endure loss of dignity in so many ways. I regret missing A lesson my son taught at church. Mainly due to lack of energy to prepare for the presentation of my self. Pacing doesn’t always Work out! Additionally the 3 hour block renders me Exhausted/spent! The folding chair the 2nd and 3rd hour alter my musculoskeletal system to become the shape and form of the letter “S” afterward. Thank You for the well written post ! It’s a comfort to have a Spokesperson for feelings I relate to and Live each and every day!!!
All those losses — including the loss of dignity. It’s so hard to accept. But I hope that new quilt bring some comfort!
Oh my goodness, I felt like you reached into my head and pulled out every thought, emotion, and reaction I have experienced since becoming sick. Recently, I too have transitioned from anxiety to ennui. I too have become a sloth. As you pointed out, there could be worse things 😉
Oh my goodness, I feel like you reached into my head and pulled out every thought, emotion, and reaction I have experienced since becoming sick. Recently, I too have transitioned from anxiety to ennui. I have become a sloth! As you pointed out, there could be worse things 😉
I tried to send you a picture of a sloth, but it didn’t work. They are actually cute little things.
I have mixed feelings about such an article being published. I do understand the writer’s feelings, however I’m troubled that it could potentially disuade sick people from getting correct diagnosis and treatment. After being ill for nearly 8 yrs. and knowing the discouragement and also coming to terms with my level of wellness, I was able to get treatment that was very successful. There is no cure, but their are treatments that can greatly increase our level of health.
Jane, what treatment did you have that was successful? Also, I wish everyone would identify whether they have Sudden or Slow Onset ME/CFS. I myself have Slow Onset and am officially 10 years in now although I believe it could have started as early as 14 years ago. I have a theory that people with Sudden Onset do recover eventually and whatever treatment they happen to be trying at the time is then touted as the miracle cure. I wonder if they would have recovered anyway, with or without treatment because I have met so many people with Sudden Onset who have experienced this and I’ve tried all their “cures” to no avail.
I have slow onset. Been sick in odd ways, wax & wane over 30 years. Progressively worsening in the last several, shedding layers of whatever was left of me until finally crashing into severe this spring. Only then correctly diagnosed. But I have wondered the same.
Before I at least had enough degree of function & respite to find some measure of acceptance. I haven’t been able to read for several years. Or engage in other distractions like movies or music. Which are also things that feed the soul.
As the window shrinks, it is hard to know how ‘to be’ with this
I am definitely not on the other side of it. I had sudden onset and this is my 12th year of being sick. I was mostly bedbound the first year and then had a little improvement for a few years. After that it was a steady decline for several more years. I was able to get adequate diagnosis and begin treatment in 2011. I’ve had treatments that failed but am now on one that is making significant improvements in my lab results (thus my term “successful”). Clinically I am very, very slowly becoming able to be out of bed and drive a little, shop etc. Without a doubt I would be severely ill without treatment. I’m not allowed to discuss an experimental treatment.
I can think of 2 patients with sudden onset who have been/are, very public regarding the severity of their illness, one of which gained much improvement in her health. We are still however, ill. I agree that those who say they have recovered completely have most likely done so through their own body’s healing processes.
Yes, Jane, I understand your concerns. I tried to express the conflict I feel. I agree that information about treatments is necessary and can potentially help many sufferers. At the same time, all that information (after 15 years) can feel like a blitzkrieg.
That’s great you’re on the other side of it Jane – congratulations! I would probably feel the same as you do if you finally made it after many years….that’s really something. (Love to hear what you did).
I think Carol’s article kind of speaks to ‘what’s so’ for many people – they’re worn out mentally (and probably financially too!) from trying and it gives people a opportunity to look at that and communicate that and if they decide to do something different to do that.
I don’t think anyone should give up trying – on the other hand I think that many people do inevitably get to the place where they do. I guess it’s like any long battle – sometimes, when you run out of ammunition you retreat and recoup
Just how I feel, total resigned apathy. Thanks for sharing
Would like to hear more. Good to read when feel blah, to know someone else is in the same boat.
Beautifully written. Something we all know much too well. Enjoy the mind, body and soul rest which is so deserved. Love you all.
Thanks, Val.
This is SO me! Excellent article.
No kidding! I struggle with the same things as well, and the stupid guilt that trys to sneak its way in. I kick it out tho, I have to. I accept where I am today, but man I still struggle. Sometimes I will go have a little pity party all by myself, hopefully keeping them short and sweet. Then I do positive self talk, kick myself in the keester and keep on keeping on. I used to do so much research on all my ailments, but it sucked the life right out of me. Everybody has something. I’m a sloth too, who cares.
Enjoyed the article, thanks for sharing!
in the next issue of the Last Best Cure series, the author is told to give three big SIGHS! as a way of purging herself of her frustrations, etc. seems similar to a little pity party 🙂
If only we could allow ourselves (and be allowed) to sink into this gentle state right from the beginning, allow ourselves a bit of fatalism and que sera and Buddhist acceptance – and always keep our head supported!!!……we might find ourselves on a gentle, gradual upward slope toward recovery…..the research is important, essential – but as sick individuals we need to be kind to ourselves and not wear ourselves – and our financial resources – out chasing the elusive cure. Exertion makes us worse, and just getting through everyday activities is often more than we can manage – energy efficiency should be our personal watchword, and demanding the right to behave like an invalid is the paradoxical best way to become less and less an invalid. Bring on ‘not caring’! Cherish that apathy – it’s your secret pathway towards gradual improvement..
Maybe, with the most recent knowledge about the disease, new sufferers will understand that rest is necessary from the beginning. Doctors told me to EXERCISE! So of course I did, and just kept getting worse.
Thank you, nancy
Thank you Carol for stating so well the state that I have come to after 21 years of this illness.
Yes. Exactly. You nailed it.
You are singing my story!
Yes, thank you for saying this, same here. Except I don’t think it’s “sloth” — I think it’s wisdom and acceptance (different from resignation — certainly different from sloth). After years of chasing every plausible (and implausible) treatment and cure, it finally hit me: life is what happened while I was going to the doctor. I needed to build whatever life I could, and life required energy and since my energy was so limited, what was the point of spending it in a circuitous, neverending, exhausting, frantic, futile, frustrating search for something we’ll all know about when it happens? No more precious energy wasted with frowning doctors, in their waiting rooms and what the heck, figuring out how to get to their office in the first place. I hate having such meager energy. But I hate squandering it even more.
Yes, “we’ll all know about it when it happens.” But what complicates this attitude is tour knowledge that some people are helped by some of the treatments out there. Not paradigm changing results of significant research, but adjustments in supplements, diets, etc.
So true. The question of, “Could something help … even in a small way?” does tantalize and complicate. In theory, I welcome the small ways and the (as of yet non-existent) big ways. I’m just so freakin’ burnt out. That said, I’m going to read “Esther’s Amazing Xafaxin Story” and I know I’ll be wondering if I should try it …
Thank you for your articles — I love them.
That is soo powerful – “life is what happened to me while I was going to the doctors”
That says a couple things to me. Since it is appropriate to go to doctors when one is sick (and it is appropriate to give that a rest as well) then we should try to cut out or diminish the ‘frantic’ part of it -as difficult as that is – and have it be as enriching an experience as possible. It’s not an easy task to have a doctors visit or a search for health be enriching – that’s for sure.
It is indeed a burden for us to try to keep up… And we have to do even more: we have to monitor what’s going on, in case pre-and misconceived ideas come back. Very tiring indeed… and annoying… (which seems close to “ennui”…)
I feel this, each time I crash it feels like it takes longer to recover from less.
But looking for answers is the only thing that keeps me going.
Hang in there Eric. You never know.
Thank you for saying all this. Isn`t it strange that we should all be giving into sloth? Why would that be? All of us. Maybe that is why we feel we are getting worse, when in fact we are tired of waiting to get better.
You have all spoken the words and emotions that I too have been feeling and experiencing. So too a slothful existence for me. Is it Spring, or is it the fact that I have used up all my energy looking for answers, trying to be proactively active and still looking after everyone else when I cannot even look after myself?
Please all toast yourselves with whatever kind of beverage you can tolerate! You are (we) all heroes in my book and it is okay to have ennui. You are just worn out.
With some rest, hopefully we can muster a little interest in life once again!
Treat yourself with love and compassion, be joyful in what you can, keep working on living
each day as it comes and with eqanimity (keeping an even keel in spite of the ups and downs).
May you be at peace with your ennui. I will try too.
<3
II find it’s hard to know if I’m getting worse. Certain symptoms come and go — others morph into different ones. And then new ones appear as others disappear. Some days I feel better, with more energy and stamina, but that never lasts. And I’m tired not only of waiting to get better, but also of not knowing what to expect from day to day.
Carol, this is priceless. Excellent writing – thanks for expressing this for us.
Too tired to write much, but it’s so good to be part of such a lovely, intelligent, and hopeful group. Someday, my energy might just re-appear, and then what joy I would have in life.
I can’t write much–too much pain and cognitive stuff. But Carol what you wrote is excellent and what I have experienced. All your articles are excellent. For awhile I went thru the I can’t read anymore on CFS/me and other illnesses I have. I am back to reading more again but I go thru phases. Carol, all your articles are excellent!
Thanks, Carol. Glad you’re able to read again, if only for a while.
As someone who has only recently foraged into the confusing world of info surrounding this disease ( though having lived sick for many years), I have so appreciated cort’s work & carol’s sharing of her experience.
Ah! Lovely example of brain damage. Forage? When I meant to type foray
Actually, Ellen, I admire your use of “foraged”. You were “searching widely over an area in order to obtain something.” That’s a clever metaphor!
Ellen, I think “forage” works too, especially since Cort’s site gives us food for thought. 🙂
Carol,
25 years with Fibromyalgia and now CFS/ME
I have been reading all your blogs … you write with authenticity, humor and wisdom.
I will take ennui over fretfulness … sloth over ineffectual, senseless and uniformed prescriptions for ‘doing’ … any day. Medical land is filled with uninspiring practitioners and experts with uninformed facts … Continuous exposure to the lack of creative holistic thinking in the medical establishment … is enough to lead anyone to ennui … I, for one, am thankful that I have come to a place of self-knowledge, self-agency, self-wisdom and self-acceptance … If you want to call it sloth and ennui … I can live with that … To find sweetness in life … I choose to no longer tolerate one second more of prescriptions for doing from uniformed medical practitioners.
Your call for “creative holistic thinking” points to what I too have recently found so lacking. I see different doctors for different kinds of symptoms/ailments, and none has the big picture. Neither do they consult with each other (which probably wouldn’t help much since they know little about ME/CFS as they focus on their specialty.)
I have, however, found some who admit their limitations and demonstrate caring and some willingness to learn. I wish there were more avenues for the education of medical professionals.
As a 17 year, sudden onset …whatever/whoever…just spent 10 minutes trying to choose a word to describe me..your article described and made me aware of where I am also. It touched my heart in a way i seem unable to express. Part of it is age..I’m now 61. Part is having a chronic pain/energy illness. Another part is adding to the original illness such as a herniated disc. However, God has blessed me with a supportive team of a young GP who knew it “wasn’t in my head”, an incredibly gifted physical therapist who treats the whole body and a Dr. Of oriental medicine. My concern is when my husband retires and what treatments/medicines we won’t be able to afford resulting in a further decline. I know God has a plan for us and He will continue to provide for us, without Jesus they would have had to lock me up.
Carol thank you for your honesty, humor and openness.
FYI -my mother and daughter both have FMS/CFS. We were all diagnosed within a year of other.
Wow! All three of you! That’s something researchers must be interested in investigating. I hope you all are helped by those doctors you’re seeing.
I sure wish that the way these pages jump slightly up and down each time your rotating testimonials switch could be fixed. I miss reading Health Rising. Every time you post a link to a new article, I try, but I can only read a couple of paragraphs before I have to quit. It’s frustrating.
I have been going through a similar period myself, I guess it has to do with the 10th anniversary of the illness. Without doubt, I can call my ennui “depression”, although I haven’t given up trying to get better.
Thank you Carol, I think this is important. I have regained about 95% health, but I have priods of ennui and blahs… Lie On The Couch and Read days – and why not? We have been through various degrees of living hell. Our bodies – and spirits – deserve any time off we can offer them, in my opinion. I give thanks daily for any energy and endurance I can muster, and think back to when I was flattened by terrible symptoms and could do nothing. I continue to do brain work (see web site link) and I am living well now, but I really need to read in others’ words that it’s probably “normal” to have draggin’ days… Hooray for “normal”! That was out of reach for so long! (Hi Cort! Great job!!!)
If there was such a diagnosis in the UK I’d be slow onset ME because I’ve had problems maintaining activity levels for years. I didn’t seek a diagnosis and didn’t dash around frantically seeking a cure because after reading about the possibilities they didn’t seem to me scientifically based. I have felt the ennui you describe and consider it to be mild depression. Mine improves with vitamin C.
When I finally had to seek medical help because I was barely able to get out of bed I wasn’t able to get any treatment that would help (CBT and GET all that was offered, I live in the uk) so I turned (again) to the internet.
Some things have made a big diffference to my life over the years – treatment for reflux meant that waking in the night and “sinus” headaches both reduced. A gluten free diet made me so well for years I thought I’d found my solution. I’m now improving again on a modified version of the methylation protocol with N-Acetyl cysteine and Adenosine triphosphate (ATP) being important for me. I too worry that articles like this discourage people from getting better, and there seem to be a lot of such articles recently.
I wouldn’t encourage anyone to dash frantically after a cure but to be selective. And when you are resting do get into the sun as people with ME often don’t get enough vitamin D.
Yes, selectivity is crucial; it’s just hard to discriminate among possibilities when you’re feeling so sick. . .and loopy. It’s great that you’re finding relief and improvement.
Hey carol, can totally relate to the weariness & just wanna say how much I appreciate you posting.
You know when a high school teacher & judge’s wife from New Jersey can’t get well & has to deal with the same kind of crap from doctors as the rest of us.. I don’t know, it kind of validates your experience, you know?
(I am not a big fan of the legal profession….but it kind of screams respectability to society at large is what I am trying to say here>)
Ok, so normally I don’t post but I want to share what has helped me recently and freed me from zombie land.
I want to say up front that I do think there are subsets to this illness, so this may not help everyone & this is not medical advice & I have absolutely fucked myself up on occasion, so caveat emptor or whatever that saying is.
( who knew that B6 was toxic if you took large injected doses for 3 months?)
So I am 46 now. Acute viral onset in mid 20s. Downhill all the way. Fatigue, unrefreshing sleep, insulin resistance, horrible cognitive dysfunction, low blood pressure, and I *think low blood volume are the major symptoms.
So anyway, I was living in a fog but it has lifted & it’s 2 things really that have done it: amphotericin B & EDTA for nasal mycotoxins (Dr Joe Brewer’s protocol) & chloride dioxide enemas for endotoxins from the gut.
So basically treating mycotoxins & endotoxins.
Early days yet. I;m not sure if these therapies will eradicate the endotoxin or mycotoxin load, but at least I am participating in life again. Sick 20 years, unemployed for 10. So this is a big deal for me & they are cheap therapies.
You can google for more info on Dr B’s treatment. I did the Realtime Labs test. Positive for all 3 classes of mycotoxins, but mostly for aflatoxins.
I think the co pay is $30 a month so cheap.
The next thing is more controversial, and everybody needs to do their due diligence. Chloride dioxide. CD formerly known as MMS.
I do Kerri Rivera’;s protocol. Sort of. I do concentrace minerals instead of ocean water, even though i really like ocean water, but for the moment i have some concerns about purity.
I do think CD can be dehydrating and I think I have a problem with low blood volume so I do Kurt Rowley’s oral rehydrating solution which is based on some World Health formula for a cheap rehydrating formula for the Third World. You have to email him for the recipe. He’s on Phoenix Rising.
I also think it probably strips minerals so you have to watch that & I dunno if replacing them through ocean water and/or Concentrace is sufficient, but in my book,this is great stuff.
The CD enema seems to really help… I did the oral doses for a year and they helped a little but the larger dose in the enema seems to have a more obvious effect.
Kerri Rivera has a book, curing the symptoms known as autism, and a couple of facebook support groups.
I suppose you could just take Rifaximin for the same effect. Kenny de Meirleir rx’d this for me every couple of months, but I think I need something every day.
I am also seeing Dr Simon Yu in St. Louis Missouri for parasite treatment and other things. Too early to say anything there….. but yeah, it seems I have parasites as well as everything else.
I was pretty skeptical about the whole parasite thing initially… but you can’t ignore the evidence.
Just throwing it out there for what it’s worth.
Should mention that some people react really strongly to CD intially… nasty headaches etc… but you can antidote it with any citrus juice or antioxidants I am told….and of course they start you out at a drop a day…
It’s definitely something you build tolerance for. Like I say, just fyi, fwiw. Not recommending that people do this.. don’t wanna get into a heated debate about it….so don’t friggin jump on me, ok folks?
Do it. don’t do it. Whatever. Just telling you I’ve been on it a year and I like it.
Full disclosure: the FDA doesn’t like it & you can google what they say about it.
I used to do amino acid Ivs, and they gave me a great brain boost for about an hour or two. I would do them again in a heart beat, esp. if i had a hickman or picc line.
I also got a boost from heparin, but I’m told heparin is not indicated for my problem.. I have a massive Fibrin problem per David Berg. Just don’t seem to see much with the enzymes.
I recently tried Hbot but it seems to cause oxidative stress or some unpleasant brain sensations….maybe less pressure, fewer sessions would help. who knows.
~To your health everyone.
Cheers
Charlotte
Wishing everyone the best.
I had sudden onset of CMV & Parvo b19. That was 20 yrs ago. I was Dx by a CFS expert who has since retired. I was healthy. A runner. Training for a marathon. Then one day, fever, rash & never recovered. I’ve been living the same day for the last 6 yrs. food, Netflix, sleep & pain. I also have Fibro. I’m miserable. Completely alone now. Wondering how long I’ll stay another day. I’m a chicken I guess. I’d rather not be breathing. This isn’t life.
Penelope,
I am so sorry you are currently enduring so much hardship and suffering. At the worst of the worst moments … this illness can and does effect our psyche … Psychological perspectives and emotional afflictions of distress, devastation and despair … are not uncommon or atypical … sometimes … they are “just the facts”
… ordinary responses to such difficult prolonged hardship. I would not use the word ‘chicken’ to describe what you are experiencing. I would use the words … strength, endurance and courage.
Sending you healing vibes,
Betty
Dear Penelope,
Like Betty Herman, I believe that your post reveals courage and strength. I appreciate and admire your honesty and endurance and believe you have nothing to feel guilty or ashamed about. If you have no one to share these feelings with, I hope you’ll consider writing about them in a journal. I find that just putting my struggles into words brings some relief and helps me to cope. It also helps me to recognize, acknowledge and even enjoy those moments that are actually less painful and more life-affirming.
I’ve found that contact with others and moral support helps, even if that contact is only through the Internet and discovering people in similar situations who understand what I’m experiencing. I’ve also learned that the only constant is change: I think something will last forever, but then discover it was a phase – a phase that might last a day, a week, a month, even a year – but then one day just loses its grip. This applies to physical symptoms (a severe stiff neck, insomnia, stomach cramps) as well as emotional symptoms (the “ennui” I describe in this post, irritability, the feeling of being isolated from the rest of the world.) Change might also result from more investment in ME/CFS research.
I wish you continued inner strength and healing.
Carol
Where do u get ATP adenosine try phosphate? I have been sick with ME for 12 years & have tried many things trying not to just try everything but being selective my worst symptom is the post exertional exhaustion (malaise just does not describe it!!) I think that ATP is part of this…
I get mine (uk ) from here http://www.healthmonthly.co.uk/swanson_ultra_peak_atp?gclid=CJXlv6f69r4CFfMZtAodxnYAUw but here is a US one http://www.amazon.com/Douglas-Labs-ATP-20-60-Tablets/dp/B000SVIO4A
Some people use d-ribose instead as direct ATP supplementation has been said not to work. Seems to help me, though and di-ribose didn’t.
I can so relate to ennuie and this entire conversation. I feel grateful in times when I no longer crave the doing of things I can no longer do – skiing… hiking…camping…gardening. It has made things so much easier.
I’ve had CFS for over 15 years, slow onset, no hint of infection… I went downhill for years and finally started to stabilize when I was able to stop even my part-time work. After years of working with trauma and nervous system patterns (this is my particular area of interest in the origins of my chronic illness), I am finding myself in a new place this summer.
I’m stable enough, with no new or big symptoms. And the “comforting” familiarity of the ongoing old symptoms. I’ve been feeling increasingly resistant to more searching and trying. And I’ve decided to take a break. A rest from all the work of keeping an eye out. To stop worrying about those temptations you guys so articulately refer to about what has worked for someone else.
Instead, the word and concept that came to me was to let myself “Coast” for a while.
It’s feeling wonderful.
And I’m feeling grateful to have this respite to be able to do this without some intensifying symptom that motivates me with the anxiety of needing to “DO” something.
Happy spring Carol and Cort, and to all my fellow travelers.
Glad you have reached this stability.
Thanks for the inspiring response. I like the idea of “coasting”!
I am 67 yrs. old and living in a retirement community where nearly everyone is oldidleneto be my parent. My daily life consists of reading, watching TV, computer games, knitting, eating and sleeping. After struggling with fibromyalgia and chronic fatigue for 14 yrs. I no longer have the strength or stamina to maintain an independent life or to engage in outside activities and relationships. I hope someday there will be supported living available for those of us under 80 who have pain and fatigue related disabilities. I have not had a severe pain episode in the four months that I have been here. I’d rather be idle and bored than to suffer. Nothing else has worked.