ME/CFS patients are often under a great deal of pressure to “stay positive” and told to “visualize yourself healthy and strong again, and you will be.”
This type of “magical thinking” puts an unfair burden on a person who is already suffering terribly.
If they do not improve, then they may be blamed by others for “not trying hard enough” or “not wanting to get better.”
The unfortunate reality is that this very real, physical, disease process very rarely goes into remission.
It is usually an agonizingly slow downward spiral into what we call “the living death.” There are good days & bad days, good months & bad months, and sometimes, even the odd good year – relatively speaking (a healthy person would call it utterly horrible).
ME/CFS is complicated, and similar to a cascading system failure in a computer – it starts one place, but spreads to involve almost all the body’s systems.
It cannot be “wished away,” no matter how hard you try.
A few weeks ago, at the doctor’s office, the nurse, who was new, decided to go through the whole CFS checklist. It’s quite long. One of the questions:
“How are you doing on your goals?”
I was slightly dumbfounded. They never ask these things.
“My goal,” I told her, looking at Rhiannon, “is to stay alive until she is 18, so I guess I’m doing okay.”
The nurse looked at me with shock. Later, when she had me alone, she lectured me, about how I had to be more positive, and I needed to spend time imagining myself as vibrantly healthy, and then I would be.
However, I explained:
And yet.
I have continued to go downhill, so obviously it’s just not that easy.
The nurse got very quiet.
It’s not for a lack of “faith” or “belief.”
I’ve had several experiences with animals (a wolf cub and a beloved horse) that were terribly ill, and should have died. I opened myself to the Divine, and felt it move through me, into them.
They made recoveries that simply could not be explained. My horse, Cherokee, was even written up in a vet journal, so stunning was her recovery.
I have seen true miracles, and I know they can and do happen.
So while I continue to hope and pray for one, I know that miracles are few and far between, and I have to face reality.
Reality is, my body is in a precarious place, and I need to treat it as such, with extra tender loving care and caution.
One of the most important things a ME/CFS patient can do is to realize the reality of their limitations – exactly how much energy they can expend, which may be next to none.
This is called staying within our “energy envelope.”
In the beginning, almost all of us push ourselves to do more than we should. We try to keep up our former lives, not realizing that things have changed.
Work is usually essential, so we work (often with the assistance of stimulants), then crash – we sleep, and feel like we’ve been run over by a semi, who then paused, and backed up over us for good measure.
On the outside, we may look “fine.”
But I assure you, we feel anything but “fine.”
We are forced to pare things down.
We start to miss social events and family gatherings.
Because our energy level, and the intensity of our headaches and other symptoms, varies day to day, and even moment to moment, we become unpredictable guests.
Soon, we stop being invited, or expected to show up.
This is the beginning of the isolation many of us will face.
Eventually, most will wind up housebound, and often, bedridden.
The life expectancy of a person with ME/CFS is 57 years.
Many ME/CFS patients wind up alone, with little or no in-person support, having been abandoned by family & friends, who either cannot or do not want to understand the reality of this illness.
Perhaps they think we should “try harder.”
I don’t know how we could possibly try any harder.
Virtually all the ME/CFS patients I have “met” – dozens of them, online – have tried everything, and I do mean everything, in a desperate attempt to get better:
Some have taken out 2nd or 3rd mortgages on their houses, and many, like me, have asked relatives to help cover the costs of meds, experimental treatments, supplements, and medical care.
Sometimes, things help a little.
Sometimes, they make things worse, even much worse.
We virtually all stay on top of every tidbit of medically-related news, every droplet out of the research world that shows promise.
We desperately want to be well again, or, at the least, to stop the downward slide.
We all want to stay positive, especially those of us – and there are many – who are the mothers of children with ME/CFS.
There is precious little research.
Precious little money being thrown at this illness.
There are no “silver bullets” in sight.
Even if one were to come soon, those who have been sick for decades, and have so many systems involved, so much damage done, would be very unlikely to recover fully.
That is reality.
But.
Accepting the reality of our illness is essential to managing it, and to finding inner peace.
In November, I wrote this about finally finding acceptance:
“Acceptance doesn’t mean giving up. It doesn’t mean you stop looking for ways to return to health.
It means you stop fighting, stop struggling, and get on with the business of living your life, even if you have limitations you didn’t expect or want.”
It’s rather like a person who’s fallen into rapids: you can fight & struggle & probably drown, or you can give in to the flow of the river & let it carry you where it will.
Accepting what is, even ME/CFS, helps us to have richer, fuller, lives.
Because I came to acceptance, I relish every moment of life:
The explosion of sweetness from every ripe, red, juicy raspberry I pop in my mouth, a gift from the Woods.
The incredible way the sky changes color every sunset from second to second, showing me gradient hues in lavendar, indigo, crimson, fiery orange…
The fawn we saw nursing its mama just off our deck, and the twin fawns running full tilt through the Woods this week.
I’m especially treasuring every smile I see on Rhiannon’s face, and the long talks we’ve had of late, on far reaching topics.
Everything is more precious, and fills me with more joy, now that I am no longer engaged in a war. This is just what it is, and I’m making the best of it.
The Dream
I’d really like to live long enough to see my grandchildren, and that is a longer-term goal.
In fact, I’d like to live to be as old & wrinkled as an apple that’s been stored for a year.
I’d like to be the crazy old lady who lives in the Woods. She can be seen out taking long walks, her dog at her side, ash-wood staff in hand. Her hair is long and white. Barefoot in all but the coldest weather, her clothes a wild mishmash, with beaded necklaces and bracelets, she looks every bit the crone, the wise woman.
She has a way with animals, and knows every plant, every wild herb and its use. She speaks quietly to the trees as she walks, and places a gentle, wrinkled, hand on them as she passes, especially her favorites: the great Mother Oak who guards her cabin, and the Ash trees who share her name.
She is the dream, or maybe, the ultimate goal, loved, nurtured, and carried inside.
What about you? Do you have any goals or dreams you’d like to share? Comments are very welcome, below the pictures!
Wolfdreams.... 
Oh Ash, This was so stunningly beautiful and true, for you and for all of us. Hard to read, hard not to cry, hard not to laugh in recognition. Wonderfully written, emotionally felt. I’m so grateful to know you. Thank you, Michelle for introducing us. That was a gift. Love, Laurie
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Thank you so much, Laurie! This was one of the hardest posts I’ve ever written, and took me four days of tinkering, editing, searching for images but not finding any that were quite right (except A Gentle Kiss – I adore that one), then trying to figure out how to put a gallery into a post on mobile wordpress app… but I think I was just stalling, because I wasn’t at all sure how it would be received. So it is with a grateful heart that I read your comment last night, and knew that you truly heard what I was trying to say 🙂
Thank you for being my friend, Laurie, for your love & support – it means a great deal to me.
*gentle hugs*
Love,
Ash
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Ash, This posting brings up so many emotions, especially since I miss you so much after our recent, all too short visit. At the end of your post, I wanted to say, “how beautiful”, yet at the beginning, I got a taste of the pain, anger, and frustration you have to face all the time with family, friends, strangers, and medical personnel.
I think people need to be educated, and you do it so calmly and clearly, showing perhaps frustration, but no animosity. You speak for so many people who don’t know how to respond because our culture does not teach us how to bear witness to others’ pain with open acceptance. We are taught to either fix things or blame and throw away what can’t be fixed. We do this with computers, phones, cars – and with people. A positive attitude is beneficial for one’s health; visualization can improve ones’ game, and they may both do much, much more. But at the same time, the most positive person’s body sometimes succumbs to cancer, while a curmudgeon unexpectedly experiences a “miracle”. Who knows why? It’s not fair, but it is what is.
Helping someone reframe a difficult situation, when asked, can be life changing for both parties, but so often advice comes across as blame, whether we realize it or not. And, whether we realize it or not, we really just want the situation to get better so we can stop feeling the discomfort of powerlessness to fix the situation and stop our loved one from suffering.
I worked with a Hospice client once whose religion included the belief that the Holy Spirit heals you if you are a true believer. This delightful man was in his 70’s with advanced pancreatic cancer. Despite his beliefs and prayers, his body was not going heal this time. The congregation abandoned him. They said he was obviously not a true believer because the Holy Spirit had not seen fit to cure him. They blamed him for his illness, but perhaps they also left him because he was a reminder that “The Lord works in mysterious ways,” which they really had no control over. Any of them could be next. Most of us would think that it was ridiculous and cruel for his congregation, his spiritual home, to abandon him in his hour of need AND blame him for their exodus, but most of us probably do the same thing in more subtle ways as our loved ones become sick and even die. It is so hard to just let things be as they are in each present moment. We don’t have to fix or blame or solve or run away or hover. We just need to love our loved one, accepting their pain as we acknowledge and accept our own.
Ash, we have been friends since I was in 3rd grade and you in 4th, but I find myself not always feeling like the greatest friend. It is hard seeing you in so much pain and wasting away. It is hard feeling helpless. I can understand your nurse’s desire to offer a way to “fix” things because I want to be able to offer that too. Sometimes I hesitate to write about all of the things I’m doing because I feel almost guilty that I am running around the world doing this and that, while you, someone so incredibly intelligent and talented, are confined to a bed in chronic pain wondering if you will live till your daughter’s 18th birthday. So sometimes I don’t write when I really want to. Your blog posts help so many people who are chronically ill find hope, support, and a way through the medical maze, but they also educate all of us who love all of you. They remind us that, though we may want to distance ourselves through words or actions, to dull our own pain and impotence, we really can help. We may not be able to fix, but we aren’t impotent. We can educate ourselves about your needs and your way of seeing the world so that we can be there for you in the way you need support. That is not exactly fixing the situation, but it is a positive way of “doing,” and a way of showing our love even though we can’t fully understand what you are going through and even though we still feel our own pain. I do not want to be like the congregation that blamed and retreated. I don’t want to be like the nurse who was well-meaning but ignorant. I want to be a loving friend, illness or not.
Ash, your quotation about acceptance isn’t just for those who are sick, but for us all –
A slight rephrase: Acceptance doesn’t mean giving up. It doesn’t mean you stop looking for ways to support your loved one. It means you stop fighting, stop struggling, and get on with the business of living your life, even if you have limitations you didn’t expect or want.
Thank you Ash!
Love, Daphna
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Daphna… Your “comment” is so much more than a comment… I will treasure it always. Right now my heart is so full.. of Love, the love your words show me you feel, the love I feel for you; of Gratitude, for the great blessing of having you as my friend for as long as I can remember, for the wonderful words of wisdom you have shared with me and us all…
I will write more later – I know you are off to your retreat. Thank you, Daphna, for the great blessing you are, and the great friend you have always been. Namaste.
Much Love, and Happiest Birthday wishes!
Ash
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@-}-}-}—-
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Hi, I was referred to your blog by my good friend and neighbor, Kathy J. I also suffer from CFS/FM and my sister has chronic Lyme. I could totally relate to your experience with this type of illness – thanks so much for writing your blog. Although I wouldn’t wish this on anyone, it does help in a way to know you’re not alone. That your feelings are very much like others who deal with a chronic, debilitating illness. It really is a journey, kind of like going through stages of grief. It is a loss really, a loss of your former health. So it stands to reason you would go through a process, starting with anger and denial, where you finally come to a place acceptance. I know this was true for me and I see my sister going through the very same thing. Anyway, I thought you would enjoy this story called Spoon Theory, if you haven’t seen it already. My own sister shared it with me and I hope it will have meaning for you as well.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Diana P
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Hi Diana,
Thank you for “stopping by!” Kathy is a dear, dear friend, and we were at her house in early June after my daughter’s father died. She told me she was going to pass my blog along to you, and I appreciate your reading and commenting – your words are so true!
It *is* quite the journey, and we do have to grieve and let go of our “past lives” – in the online patient community I am a part of, we often refer to that as “The Before Times.”
I am blessed in that I led a full & active life before I became too ill, with years of organic gardening, raising goats & sheep & other livestock, and many years horseback riding. I think Kathy said you have/had horses – Many of us were riders, oddly enough, perhaps because Bartonella, which is usually a tick-borne disease, has been found to also live in horseflies. This is a very recent discovery.
The Spoon Theory is very touching – a friend passed it on to me last Fall, at a moment when I was down to that one last spoon, and I wrote a blog post about it, Always Counting Spoons, and how it related to my life. I think you would understand what I was expressing more than most.
I know just what you mean about not wishing this on your worst enemy – I wouldn’t, either. I’m sorry you’re one of those whose lives has been changed by it.
You & your husband, who I understand is quite ill, will be in my thoughts & prayers. You are not alone… there are so very many of us out here.
Take care,
Ash
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Hello Dear Ash,
You are, and always will be, the crazy old woman who walks the woods with me.
You are, and always will be, present within the circle of gentle woodland beings and wise crones that gather and beckon me.
You are here with me, and always will be, and I bow with great respect and thanksgiving to you… dear beloved sister Ash.
Thank you for sharing your gifts of expressive writing. I have sat in the woods with you… reflecting upon, and feeling the depths of your words and the other beautiful sharings that arose in the comments within this circle.
My heart breaks knowing what a heavy load you, and others, carry as you go about living with ME/CFS, FMS, Lyme, and the other related chronic conditions that arise within the cascading patterns.
The feelings that swirl related to my own grief and sorrow about your suffering, the effects on Rhiannon, etc., and my inability to make it all go away are very difficult to express… but tears are sliding down my cheeks.
I’ve experienced some of the patterns you describe personally and have also served on the threshold as a Hospice and Palliative Care Nurse with individuals, families and their friends seeking to find a way through similar situations where there are no cures, no easy fixes.
In many ways, what you describe is similar to what folks have expressed about getting to the point in a terminal illness, like cancer, when curative treatments are no longer desired but family members can’t let go, can’t accept reality for reality. Saying things like just be positive, just keep trying, just keep fighting…don’t give up. People can’t deal with their own stuff so they project it onto others even though it may cause tremendous heartache and more suffering at a time when quality of life, quality of relationships are what counts.
But, that being said, I know that living with ME/CFS, FMS, Lyme, and the other related chronic and cascading system challenges is in a whole other league.
Unfortunately, many folks have been around someone struggling with cancer and our medical professionals have a pretty good grip on what is happening. But, the arena of ME/CFS, FMS, Lyme, etc., is a much more complicated, insidious and poorly understood disease process.
We have huge knowledge deficits related to the disease process in particular but we also have huge knowledge and skill deficits in general, e.g. the interpersonal, psychosocial arenas of empathy, communication and grief.
So, I give great thanks for the service that you and others are providing …for helping to give voice for all who are going through similar things and for letting folks know that they aren’t alone.
In addition, you and others are helping those of us who seek to understand the reality, develop our own skills of acceptance and communication and to get better at just “being with” when attempts to fix or cure are beyond our reach.
I agree that magical thinking, i.e. just be positive and you’ll get better, places an unfair burden on people who are struggling with physical, mental and/or emotional challenges.
But, I also understand that people say such things, i.e. “if you would just be more positive you will get better” because they are ignorant and lack essential interpersonal skills.
I’m not making excuses for people, just sharing that I think what your gracious sharing reveals so eloquently is that HUGE knowledge and skill deficits exist in our society. If we want to live in a kinder, more compassionate, just and equitable world…we simply have to address such things.
We, as a society, have distanced ourselves from the close knit communal lifestyles that used to expose people to such things while growing up. We have not compensated for this lack of experience with adequate educational programs.
Hopefully we are still educating our kids about the facts of life, the birds and the bees and the need to practice safe sex. Seems to me that we should also be including a section in the facts of life course work about
– what to do when our preferred bubble of reality is threatened
– what to do when a person tells you they are very sick and you don’t want to believe them
– what to do when a problem can’t be solved, a disease can’t be cured,
– what to do when just being happy and positive isn’t possible or effective. – what to say and do when a friend tells you they are getting ready to die and/or thinking about committing suicide, etc.
You know all those hard, but very real things we often encounter in life but have been programmed to deny and sweep under the rug. Things that friends used to be able to ride out with friends but now appears to be taboo in many social circles.
Our shallow, individualistic lifestyles, heavily influenced by the media with an emphasis on beauty, easy fixes and magical thinking and the rise of the professional counselors, therapists, etc., have hampered our ability to process our own feelings and really communicate deeply with each other.
We are like little ones who haven’t learned how to walk very well…we haven’t progressed past the automatic, knee jerk reactions of anger, denial, bargaining along with the standard “shift the burden of responsibility” way of coping so we don’t have to deal with things.
You know things like:
– “I don’t believe you’re really sick, you’re just coming up with excuses so you don’t have to work.”
– “I understand you have an illness but it’s your fault cause if you would just be more positive you would get better.”
It’s much easier to say such things than to have to deal with the alternative.
It is scary for folks; it requires that they also face their own fears, vulnerabilities, mortality, etc. and to deal with the fact that sometimes you just can’t fix a problem or cure a disease and/or that you can’t deal with the fact someone you love is suffering and is going to die.
I often recommend that folks participate in a hospice volunteer training if they are at a point in life where they want to address such things and develop the skills needed to better interact in such situations.
And, it’s not just a problem in the general populace either.
Our nursing and medical schools are getting better at providing such education but at a very slow pace. Many doctors still think their job, in combination with medical wizardry, is about curing disease. Many still don’t know what to do or say when a situation is incurable. Many aren’t comfortable making the shift to palliative care with a focus on symptom management, grief management and ways to enhance and deepen one’s quality of life. Many don’t know how to help empower folks to get the most out of the time they have left in terms of relationships, experiences, dreams and visions.
I have to admit that I am disappointed that the new nurse you encountered had not been provided a better orientation to the psychosocial aspects of providing service to folks dealing with chronic, debilitating disease processes. But, I’ve heard that ‘new’ nurses aren’t at all like the ‘old school’ nurses and that the educational ‘teach to the test’ format is a contributing factor.
So, I greatly appreciate the effort it took to communicate with her, and the rest of us, and can only hope it will help us all open our eyes and hearts while prompting us to further develop our skills of communication.
It is not only unfair for people to place the burden of responsibility on the one suffering in terms of ‘if you were only more positive”, but it is also not fair for those who are living with such challenges to be placed in the position of an educator.
So, I know that it is not fair and that it is not always easy to speak up in such situations, especially given the limited energy available. But if more and more folks who are living with these challenges can bring themselves to let doctors, nurses and loved ones know what this debilitating disease process is really like and how attitudes, words, etc. affect them… it may help us address this great educational need in our society.
Every time one of us speaks up about such things, it is not only helping us to process our situation, it is doing a service to those who may come behind us. In addition, informing a nursing supervisor or a doctor about such interactions may also help enlighten them to a need for an in-service, a continuing education program regarding ME/CFS, FMS, Lyme, and the other associated chronic illnesses and the interpersonal skills needed, e.g. communication, palliative care, grief, etc.
And, if you do decide to speak up more, don’t let anyone try to lay a trip on you as if you are just complaining or trying to get the ‘new nurse’ or other person in trouble.
You input and feedback is vitally important given the huge educational and experiential knowledge deficits that exist in our health care system and our society as a whole.
I certainly don’t want to place any more burdens on anyone dealing with such conditions. I just want to encourage you, to emphasize how important it is to keep speaking up, not only for your own health and well-being but also for our society and future generations.
Sure, these things aren’t easy but at some point we all need to take the steps to grow up and evolve as a society.
So, thank you Ash and everyone who is helping to educate the rest of us, helping us to understand what it is like to live with ME/CFS, FMS, Lyme, and all the other cascading symptoms and diagnoses that arise as a result of system wide involvement.
You are helping us, as a culture, develop our empathy and our communication skills so as to better love and care for others around us who may be living with similar challenges.
I can’t thank you enough.
And, even though some types of magical thinking can be damaging, expressing dreams, visions and goals and practicing visualization, prayer, etc., have been proven to be highly effective when moving through life’s transitions, i.e. managing symptoms and coping with chronic illness, death and the naturally occurring patterns of grief.
And, the non-dominant side of our brain also allows some of us to experience and interact with our dreams and visions in a way that is just as “real” as our perceptions and interactions during our day to day activities.
So, Ash…you are the wise woman of the woods and you always will be. I know your body is no longer up to the hike down to the holler with me but none-the-less I am here, I am still kicking, and I feel you with me every step of the way.
I know there is a special Ash growing here who is offering up just the right wand, just the right staff to send to you.
Now it is my job to listen and to feel my way to it.
I love you Ash from the depths of my soul.
Please let me know how my writing comes across to you.
Is it empowering to encourage people to speak up as a way to address these weak links in our society or is it just another burden being placed on an already overwhelmed system?
Co-heartedly,
k
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Oh, Kathy, your words, your voice, your spirit, are the cool breeze on a blistering day, the rain on the parched Earth… you have given me such a gift here, one I will return to again & again. I hear you speaking these words to me, softly, as if you were here… and I remember being there, feeling the rush of the Woods rise within me, being One with the Earth overlooking the ravine, the cliff, feeling that Rise within me… what a blessing that was, to feel that again, and yes, I will always be there with you, as I will always be here, too, a part of the Woods, one of many of the Ash spirits. 🙂 simply One. One with All, One with You, One.
It has been a very difficult couple of days, and I must stop typing as my shoulder hurts a lot, but I will return to respond to your incredible comments as I can (and Daphna’s, too). But just remembering that few moments when I stood there on the edge of the cliff, my feet firmly rooted, energy streaming through my trunk and up to the sky, has brought tears of joy to my eyes. Blessings, my sweet sister, blessings…
-Ash
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