“I do not hope for a cure or a radical positive change in my condition; instead I believe in the possibility of pleasurable moments.” Carol Lefelt
I am overwhelmed by the large number of responses to my last piece about reaching the age of 70 and feeling that it might be time to stop my quest for the Holy Grail, i.e., the successful treatment. Thanks to all who took the time to consider my circumstances and describe their own.
- Is it Time To Give Up Trying? Thoughts at Age Seventy
- What Stops You From Trying To Get Better? An ME/CFS and Fibromyalgia Community Report
Carol’s blog asking if it was time to give up the ‘holy grail’; that sometimes seeming unreachable goal of a return to health, prompted many comments
Learning that there are patients out there in similar situations with similar reactions is truly helpful; I’m not sure why, but somehow life feels less out of control and less hostile. I really hadn’t encountered many stories of people my age before, and I discovered patterns that have helped me make more sense of my own experiences.
We all clearly mourn significant losses. Many, like “Whippet Lover” (aka Christine) describe “that cycle of desolation, hope, failure, disappointment and resignation” that accompanies the ME/CFS search for an improvement in health.
We “older” ME/CFS patients seem to be at different states of health, some more well than others. More fortunate ones like Darden Burns “found the therapies that brought about a gradual and real recovery.” The CPAP machine has improved the quality of Carole’s life. Jen experienced improvement with B12 and oxygen supplementation, Cathy Gee discovered Jacob Teitlebaum’s protocol and David says that treating a double snip at MAO A has resulted in “a bit of a quantum leap in my well-being”. (Yes, I’ve read Amy Yesko’s Guide to Neutrigenomic Testing but still can’t decipher the meaning of “a shortage of methyl groups in the body”.)
Nancy Henson is grateful for her doctors (Lapp and Bridges) as well as for acupuncture. The Methylation Protocol has also helped Steffi; Robert listed all the neurotransmitter and cellular supplements he takes, along with dosages; and Christine McLaughlin, who also shares her ME/CFS experiences on Health Rising, has been helped by Dr. Chia (See Could This Really Be Happening? One Year with Dr. Chia” http://healthrising.org/blog/2014/02/18/this-really-happening-one-year-dr-chia-chronic-fatigue-syndrome-patient-reports/).
I have an ambiguous reaction to these testimonies. On the one hand, I think, Look! There really are reasons to hope. And as so many responders have emphasized (to quote Darden Burns again), “hope. . .keeps us human beings going even in the most difficult situations.” Hope brings inspiration and encouragement. The many writers who have explored the role that hope plays in the ability of patients to endure serious illness seem to agree that loss of hope can be devastating to the possibility of rehabilitation/recovery.
Buoyed by news of the gains others have made, Carol still quails at the thought of another trial -and the possibility of more dashed hopes.
On the other hand, (as I’ve explained in previous posts) I no longer seem to have the psychic energy for this kind hope, after years of relying on so many unsuccessful (reasonable and unreasonable) treatments and remembering, like Brenda Brown Elliot, “the excitement of thinking we’d made a breakthrough, only to have those hopes dashed in various ways.”
I groan along with Sara R: just thinking about another possible protocol “makes me feel, Ugh!” Nathalie Langevin agrees:
“What hurts me the most is hope. I flew so high on its wings and fell so hard that I sometimes think that all those pains I have come from those imaginary bones I broke.”
What is hope? My English teacher soul reaches for the dictionary. Mirriam Webster defines the verb hope as “to cherish a desire with anticipation. . .to desire with expectation of obtainment. . .to expect with confidence. “ The noun is “the feeling of wanting something to happen and thinking that it could happen: a feeling that something good will happen or be true.”
Natalie flew so high on the wings of hope that when it disintegrated she fell equally as far.
In “Sources of Hope in Chronic Illness,” Catherine Garrett explains that “when our desire is cut off from the expectation of its fulfillment, we suffer. Chronic illness is a type of constant and continuing suffering.” When medical science does not find a remedy, hope, therefore, must come from something else.
That “something else” she defines as “healing”, which is a transformative process that includes the physical, emotional, spiritual and psychological self. She rejects the reduction of hope as an aspect of will, positive thinking, “as if hope allows one to ‘will’ a change in the course of the disease in the body. Blaming the victim for not being positive enough.” And encouraging the “victim” to blame her/him self, and spiral down even further into despair.
Garrett proposes we replace productivity at work when we’re ill with generating empathy and support for ourselves and others
Instead, Garrett offers an alternative to despair, an alternative to believing our selves as diminished, to measuring “self-worth in terms of independence and hard work, virtues difficult to achieve in chronic illness.” That alternative involves our increased awareness of the suffering of others through our own suffering, so that we find ways to reduce their suffering and take responsibility for each other. “We abandon the egotistical self for the far greater freedom and connectedness of the altruistic self.” Knowing that this transformation is possible through real examples from people’s lives “are the sources of hope.”
Wow.
I don’t know about you, but I’m not one of those people thankful for the insights and understandings and greater maturity and empathy and compassion and personal growth and humility brought on by my sickness. I think I was pretty mature and insightful and compassionate, etc. when I was well. I’m not grateful for ME/CFS. It hasn’t been a blessing. And I absolutely do not have the strength and vitality to physically help others, beyond maybe writing a check for a charitable contribution.
I don’t disbelieve that others have experienced this kind of transformation. In fact, in the 80’s, when I fell down the stairs and broke both my ankles and lay immobile and in pain in a hospital bed on the first floor of our house without a bathroom (try using a commode with visitors in the next room), I think I gained an awareness of the importance of community and caring (and a sense of my own resilience) that I hadn’t had before. BUT I RECOVERED. And I never felt my basic life energy sapped, which, I think, makes ME/CFS uniquely awful.
I just know that for me, chronic illness has not opened my eyes and my heart any more than they already were.
Yet I do believe in the possibility of reaching a kind of “accommodation” with ME/CFS when you are, like me and many of the responders to my last post, of a certain age and “approaching the giving up after many knockbacks” (to quote Hope). But I don’t think “hope”, in the common use of the word, is available to me.
I thank my friend Valerie Free for helping me work through my thoughts about “hope”. I agree with her view that “hope” requires mental strength and depends so much on your circumstances. These circumstances include your individual physical condition, your family, your friends, the society and culture you live in, and the state of medicine. Many of us face a daily battle in the midst of unrelenting physical illness, debilitating weakness, psychic malaise, and an indifferent or even hostile environment.
The lack of acceptance from the medical community and/or friends and family is a barrier to peaceful coexistence with ME/CFS that everyone faces
Other illnesses are validated by recognition, respect and research. We all know the ME/CFS story told by Hillary Johnson in Osler’s Web of the U.S. medical establishment’s long history of denial and unwillingness to provide necessary funding. And so many of us have been subjected, like Nan Talbot, to foolish doctors with their disbelief and condescension (“Your bra strap is too tight. You’re crazy. You’re a hypochondriac. You’ve obviously been abused. And some just sneered or laughed or yelled.”)
Bromides about the need for hope lead to the same ‘blaming the victim’ phenomenon described by Catherine Garrett above. When you are despondent and hear “Stay Positive!”, what are you supposed to do? Oh, okay. I’ll turn on my hope-switch.
I wonder, however, if there’s another possibility for us. Many of the responders to my blog talk about something they describe in different ways:
Pat has found a different kind of liberation:
“There is something very liberating, however, in not being focused on the outcome of a treatment but being focused instead on living the life I have in ways that bring me the most satisfaction. There is still great joy in loving and spending time with family and friends and being able to capture the moments with my grandchildren who are so filled with promise for the future. “
Making the best of what you’ve got; creating the possibility of completely accepting where you are – is another option
Vicki says,
“I think there comes a time in everyone’s life when you’ve got to stop looking for answers and try to make the best of what you’ve got – especially when you’re of a more ‘mature’ age (I turned 60 a couple of weeks ago) adhering to a specific diet which suits me, plenty of fresh herbs and lots of fresh water, slow walking on a regular basis 2-3 times a week and spending time with a hobby I love that has been the best treatment of all.”
Esther Siebert doesn’t expect a cure in time for her.
“This has brought me much peace – living the life I have rather than the one I grieved for so many years.”
Judy
“would like to share the optimism which others have, but I do not. Instead of hoping, I work on accepting.”
Dee explains that
“I am not giving up, I am just giving in. . .hopelessness is all too often a strong emotion that overwhelms me when I allow it to.”
Consciously changing your focus from despair for what you don’t have to gratitude for what you do have is another path
In an especially inspiring and articulate post, Linda Reed emphasizes gratitude and humor:
“Each day I focus on being grateful. And for the days when this brutal Wyoming weather has me on my knees, I count my small blessings. Some days it’s hard to find them. Always my husband and my omnipotent poodle. . .I don’t live in a war torn country, somehow I got disability the first time I tried. . .my bed-head, scare-hair has finally been subdued. I laugh at myself, I have to. . .somehow day by day, I’ve tied a knot and held on. And I intend to keep doing so. The days I think I can’t endure the pain, the IBS has me bathroom bound, my brain won’t function, and I’m unfit for human consumption, somehow something keeps me going.”
“After spending thousands of dollars and feeling intense disappointment after each new treatment, doctor, healer, diet, supplement, etc. . .” Barbara has “also decided to just ‘Be’. . .I cry when I need to, missing my old life and accepting this life.”
Nan Talbot talks of
“acceptance with a hopeful eye to the future. . .take care of yourself the best you can and watch the birds, listen to music, watch TV if that’s your thing – just do whatever it takes to enjoy life in your new diminished capacity.”
OM also has found that “My life is limited, but in many ways I have come to accept the limitations and enjoy my life within them.”
And Barb says, “Now I do what I can and then have a Shiraz.” (!)
Christian writes of an ‘alternative quest’; not the one you thought you would have, but the one, that find you’re on now.
Clearly, these writers rely on acceptance rather than hope. Though a negative reaction to this reliance might be an accusation of admitting defeat and “giving up”, Buddhists see things differently: They offer the solace and peace found in surrendering, in not fighting against a “what is” which cannot be changed. For Christian Godbout, this is resorting to “a spiritual way of living with this illness and nothing else. And that is not giving up, it is resorting to an alternative quest.”
But I still demur. Where is my “acceptance” button? My attempts to meditate haven’t achieved much beyond some quiet moments, which I value but which haven’t affected my larger mental attitudes.
I think that for me, acceptance is possible because I still experience pleasure, which is not a matter of my will: Pleasure from my 15 month-old grandson Ira who is just beginning to walk — no matter how lousy I feel, I still giggle spontaneously at his antics; from my sons’ hilarious banter; from my daughter-in-law Holly’s warmth and caring; from preparing a meal when I can; from watching a good movie with my beloved husband and a bag of salty popcorn; from moments of illumination during a book club meeting. (I actually can’t wait for tonight’s final episode of True Detective despite my plot-brain-fog.)
This pleasure or delight may not be as intense and uncomplicated as during my earlier healthy life, but it exists and is the source of my “hope” now. I do not hope for a cure or a radical positive change in my condition; instead I believe in the possibility of pleasurable moments. And I believe that this is a learned response. My body knows what pleasure feels like from my past life, and continues to feel it in spite of this debilitating chronic illness. I don’t really have to work at it.
” I am most open to feeling these (pleasurable) moments when I can stop wanting things to be different” Carol Lefelt
Carol believes in the possibility of pleasurable moments – which she notes tend to occur when she’s not trying to have things different from the way they are
This was not always true. During the earliest years of ME/CFS, I experienced pretty severe “anhedonia,” a depression in which a person is unable to feel pleasure at all. Time and the antidepressant Lexapro helped.
Even today, when a bad crash wreaks havoc, I can descend into some pretty deep misery, but experience has reinforced the conviction that relief will come with rest and that’s where I can hope – not for release from disease but from restoration of pleasurable moments within the life I have now. I am most open to feeling these moments when I can stop wanting things to be different, which helps me to overcome what Tory calls the “addiction” to the search for a cure.
I love Nancy Duray’s metaphor:
“So what do I do? I live like I’ve got a handicap (I do) and walk through the mine fields like a well trained military dog, sniffing out the IEDs, careful to ‘live’ the life I have and not step on a dirty bomb.”
Implicit in her metaphor is the truth that this is an endless process of learning and re-learning, not a complete and final transformation.
- Check out more of Carol’s blogs here.
Very well said. I agree. I accepted my disease after trying many things to get better. But seeing my life floads away is very hard. This disease is one of the meanist diseases with the lowest guality of life. You lose so much; friends, work, family, respect almost everything. It is very sad.
But in the end we all die. It is very important to die in peace and dignity!
Has anyone tried Moringa plant supplements?
as a 38 year old who got cfs me at the age of 18 and had to complete mplete high school and five agonising years at university, I find it particularly tragic that patients from the time I fell I’ll, have insisted on trying every speculative treatment under the sun without realising the opportunity cost of capital.
in other words every dollar spent on a vitamin or homeopathic treatment is a dollar less available to the small hard core team of medical scientists who believe in the seriousness of our illness and want to find a genuine treatment. this money could have funded an enormous international private research program, but instead the money was wasted on snake oil treatments and practitioners making promises they couldn’t keep.
I have funded research for 17 years but if less than five percent are going to participate, then we should expect to be in the situation we are in. my doctors are less believing in cfs, than they were 20 years ago.
Jeremy,
Perhaps if you tried some of the supplements you’ve been rejecting for so long, you might be improving?
Do you actually think that ME is a result of drug deficiencies?
The only people I know who are recovering or have recovered are people who use quite a bit of supplements to counter the oxidative stress and mitochondrial problems proven to exist in ME/CFS. Yes, some of them have also taken some antifungals or antibiotics, but the vast majority has been due to improving nutritional status via supplementation and diet.
Best of luck to you.
I would love to exchange emails and experiences, marilyn , age 62
Thank you so much for this follow-up piece. I hope I can find some balance between still looking for real improvement in my health, with an acceptance of my limitations and pleasure in the things I can still do (many from the couch). This article and the comments from other patients has been one of the most helpful things I have read since becoming ill 5 1/2 years ago. And now, at age 62 I hope to be able to see the flowers bud after this terrible winter – a sign of renewed life.
Beautiful insight, Carol. Each phase and stage of life and of illness seems to offer a different perspective which helps to get us by. You speak about a gentle and realistic place for many of us to rest between bouts of trying – or not. I have noticed quite a difference in my attitudes at 50+ years as opposed to my onset at 30 years of age.
I simply did not feel that I could afford the luxury of this type of acceptance early on because with a family, my spouse’s busy business, and a child to raise; as well, my physical survival seemed at stake due to illness severity. Maybe that is the joy of ageing with the illness: acceptance seems more likely with a little less fight and flight and more space to accommodate it. Thanks for writing.
I can relate. I am 39 with 2 children (16 and 4). So in this season of life , dealing with ME/CFS feels like an urgent search for a cure so my kids can have a healthy mom…. yet even in my short 3 years of treating and searching for a cure, I have experienced disappointment after disappointment. But still continue the frantic search (which doesn’t help the body with constant fight/flight). It’s so hard to reach a bit of acceptance with little ones depending on you. I so yearn to give my kids a healthy mom… Maybe I need to reassess that seemingly unattainable goal.
In the early years of the disease, I wonder it’s possible, or maybe even wise, to “accept” the life sentence of ME/CFS without first learning about it, seeing specialists and trying treatments. People are helped, some even cured. Who knows what might make you better?
But even so, If only we could avoid getting frantic about the process. It’s hard when you are so stunned by the sudden devastation in your life.
Is there a balance between fighting and letting-it-be?
I have a friend who says “You never know when something wonderful is going to happen.” I try to remember that. Thanks for the post Carol.
Excellent! As one who has been sick since 1980, I long ago came to accept that” this is what is..” Yes, family and the medical community has made being sick with CFS so much harder, almost impossibly harder to bear, but what choice do I have, really, but to “soldier on.” I still read with great interest the new research going on, and am excited, once again, about the vagus nerve being involved, but, then, I am prepared for another let down. And so, I just walk on. Back in the 80’s, I found for myself that the only way to survive was to actively look for the “gift” that was there in every difficult turn in the illness. Doing that kept me sane.
Beautiful piece. Reminds me of “Radical Acceptance”, a distress tolerance skill of Marsha Linehan’s work with DBT.
Ironically, “Radical Acceptance” is supposed to keep pain from turning into suffering.
Ironically, Radical Acceptance is supposed to keep pain from turning into suffering.
This piece has really hit home as I embark on a new hope filled quest for a cure with Dr Montoya’s clinic… after many let downs in 3 short years. I find myself wondering what would be better: spending everything I have to get to yet another expert? or take that money and take my family on a vacation and make a few happy memories?
I’ve been going back and forth on that one. I guess I’d opt for the clinic, at least to see what Dr. Montoya offers. But if I were in good enough shape to enjoy the vacation, well, it sure is a tough choice.
So enjoyed this article, great to hear ideas and feelings that are so similar to mine. I have had CFS for almost 17 years, now 57-I live in a small rural area with very limited options for access to a specialist in this disease. I try to eat healthy, get exercise when I can and enjoy my life when I can. I get wonderful support from my husband, he is so accepting of my limitations and just knows when he looks at me how ‘tired’ I am on any given day. When I want fun and have energy I go to my sisters house and play pool and listen to music and dance and laugh. I can accept the next days of fatigue after having a play-date. I listen to audiobooks so I don’t even have to open my eyes when I ‘m tired. Great to share here, first time for me.
Thanks for sharing your cheerful voice! Kudos to your husband and sisters
for their empathy and support, and hooray for play dates.
I could really relate to Carol’s “Giving Up” article. I don’t believe I have met anyone who truly understands this ME/CFS. Not doctors, friends, strangers or so called experts and I was first diagnosed with it in 91. I had it long before that but no one knew what to call it. Honestly when I was younger, a regular fitness program using weights and swimming kept me reasonably well but as I aged it crept up on me like a rash that slowly moves from one area to another while nothing seems to work at stopping it. I am the unusual 10 or 20% of those who have this, I have heard both estimates on who have this insidious illness. In other words I am a man in a situation that demanded a level of fitness of energy and strength that most do not have to have. I was a police officer for 35 years, doing all of the demanding jobs, I even worked as a bomb squad technician and then commanded the unit for my final five years. I was also an instructor and spent 20 years as a martial arts instructor and survival expert. Along with all that I spent a total of 27years of service with the military both active and reserve going from the very lowest level in the Navy enlisted as a Seaman Recruit until I retired after changing over to the Coast Guard as a Commander assigned to Port Security and Counter Intelligence with Port Security Units. You can only begin to see the demands I placed on myself, maintaining all of these jobs at the same time and coordinating my abilities to the benefit of each. I finally gave up when I was 55, I had enough to retire and I just couldn’t maintain what I had been doing. The pain and depression was getting worse and by this time the VA had not only recognized the FM but also diagnosed me with PTSD and depression. They gave me everything, drugs that made me feel crazy and those that made me feel more depressed and almost suicidal until they finally gave me “Escitalopram Oxalate 5mg (Lexapro) and Gabapentin Tabs 600 mg 3x day for the neuropathy I have especially in my hands and elbows. This took them 13 years of experimenting with different drugs. The VA gives the cheapest they can find but bless them for they do try with what they have. I finally met a local Physical Therapist who would take my Medicare and understands the pain of Fibro and cervical disk problems. She has magically helped to clear up the massive muscle spasms I get in my shoulders and under the scapula with the clavicle and trapezius muscles. I have fewer fibro days with all of this but now at 67 years old I have lost my wife of 33 years, all three of my sons because they say my shaking hands (family tremors) is a sign of drug abuse and they don’t want to be around me or let the grand kids around me. It has almost killed me. I spend a lot of time with self-help books and I have been on transdermal patches of “Fentanyl” at 75 mcg’s for the pain but that is the only narcotic and I am very careful with how I use it, I intend to get off of them beginning my next doctor’s visit via a slow reduction of the amount I use for several months. They do help my pain but if my family is calling me a drug addict I will get off of them while staying with the non-narcotic substances. It has been hard, especially losing my wife the way I did. She was my life and I tried the best I could giving her everything until I had no more to give and when she started calling me crazy and making rude faces and finger motions at me I couldn’t handle it anymore. She was 11 years younger and just did not want to put up with a husband who was constantly in pain and didn’t feel like getting out much. It is hard to keep a smile on and feel happy when you are suffering with the FM.
I hope I haven’t bored you with this. I just suddenly saw the opportunity to vent with a group that share somewhat similar experiences and can relate to the difficulty life can offer with these problems.
Thank you and I wish you all continued good opportunities and a strong will to deal with your issues. JIM
I went through that horror show of trying different anti-depressants too. Amazing how they can turn your already dizzy, muddled brain into the sight of Armageddon. It sounds as if you finally did find something that helped through the patience of the VA.
Venting also can help. Good luck with the Fentanyl patches.
Wow Jim. Thanks for sharing. As if the disease wasn’t enough to deal with… lack of compassion among those who are “supposed” to care, stings like a knife. You are not alone.
gosh Jim,
I have read a lot of stories, but the pain of hearing how uour family have turned you away brings a new dimension altogether.
Congratulations on surviving the ‘grief’ that you have endured x
I have heard so many stories that are similar to yours, Jim. My story is similar, too. Pain, pain, pain, docs ignore me, lost family, friends, home, so sick I stayed in bed for 4 years and another 3 in a rented room. My dad was dying so I moved 1’000 miles to be with him despite our not having a good relationship (abusive). Now, I can’t find a soul who knows anything about CFIDS. I try to find Fibro docs but they do not like to give narcotics. Unfortunately, I have a handful of prescriptions. One is a narcotic. It’s the only thing that allows me to function. I have a disintegrated back disk, too. The DFA has cracked down on doctors. Any pain management I go to wants to “cure” me of my pain by ignoring my successful medical plan. They want me to start all over with the old drugs, have me do biofeedback, water exercise. Exercise!!?? Clearly, they don’t get this illness.
I’ve tried different PM? All require drug tests. I feel like I am In a police state. And yet, I never get the medicine I need. I’ve been on it for 20 years with no problems of dependence or addiction.
I don’t know what to do. I’m starting over. I hate it. Is it worth all my explanations and nearly begging for someone to listen to me? I don’t have the energy to start down this road -again. I am suffering. So are others. I’m tired of it. I am willing to be positive, follow doctor instructions, but I am back to square one after 20 years.
Jim,
I understand your situation. I was a Deputy Sheriff in corrections for 18 yrs before FM took my career, friends and family. I was forced to take disability retirement. After four years of getting worse each year, I changed my diet to a stricter form of the Paleo diet. This helped with the pain enough that I was able to stop all medications allowing me to lose the weight that I gained from the meds. The fibro fog improved to almost normal and so did the sleep. No more acid reflux either. The fatigue improved but not nearly enough to have my old life, but taking a shower is no longer an Olympic event. The fatigue is still my biggest problem and I am now “chasing” a connection with adrenal fatigue. If you would like some additional info, respond with your email address. Stay safe.
Thanks Liza and congratulations on getting better and good luck at further improvement.
Hi Liza,
I wonder if you would describe more specifically what you mean by a stricter form of the Paleo diet. Sounds worth knowing. And thanks for posting.
Very interesting.
I particularly liked Catherine Garretts below article which was referenced.
http://www.tasa.org.au/docs/conferences/2001_11/301101%20Garrett.pdf
Hi Al,
You asked me a question in the comments section of the previous article on this topic. I posted the following answer today when I discovered I had failed to respond promptly to you: I hope you see it. If anyone knows how to send this to Al, I would appreciate it.
Hi Al,
I was just rereading this article because of the new one posted today. It appears I failed to respond to you and I’m very sorry. The gastroenterologist who treats me is in CA and not here in Tennessee.
It may be possible to find a gastroenterologist here who is familiar with Dr. Pimentel’s work on IBS being caused by SIBO. My suggestion would be to read up on Dr. Pimentel’s work and protocols and take them to someone who specializes in IBS and SIBO. Even a short course of Xifaxan at 550 mg 3X a day will tell you if it will work for you.
If you get worse again after going off of it, then you can consider long term treatment. You may have to go off and on a few times before your doctor will consider giving it on maintenance. Or she may want to try Dr. Pimentel’s protocols on you. The reason I need it on maintenance may be because I have gastroparesis which contributes to making the SIBO worse but that might not be the case with you.
If at some point, you want your doctor to speak to mine in CA, please email me at siebertesther@gmail.com and I’ll share his contact information with you. I’m afraid you may not go back to read this so I’ll copy and post it on the new article in hopes you will see it.
I have so far not been able to find anyone in Nashville, including at Vanderbilt, who treats ME/CFS. If you know of anyone, please let me know. I apologize once again for not responding promptly.
Just looking around Wall-Mart, the flea market and the Mall, I see many, many people I would not want to trade places with, but nevertheless, I keep asking the Master for just a couple of years of normal life before I forget entirely, what normal was. I find it impossible to stop looking for “the cure”, or, at least something to substantially mitigate the symptoms.
It’s been forty years!
Forty years is a long time to be searching, Rich.
It’s also a very long time to be wasting your mental energy in despair and frustration .
I don’t believe you need to stop looking for a cure necessarily, but I do think it shouldn’t take up all your time and energy and focus. It’s almost like someone with ‘a chip on their shoulder’ due to the anger and resentment of a childhood failure.
Time to start pacing and enjoying the small pleasures in life – surely?
I follow a couple of blogs of people who have spinal injuries and are quadriplegic or paraplegic and they have made great successes in their lives despite their accidents. One is regaining his upper body strength and through training and physio actually went on a holiday with friends and went kayaking. Can you imagine the power of their minds that took them so far?
This meditation has really worked well for me. I got it from someone associated with EST and Landmark Education
“There’s no such thing as right or wrong. There’s now way that things should or shouldn’t be. There’s simply the way they are”
That has been such a freeing meditation for me to do. I now see that I often get upset because I think things should be different or should be a certain way.
I just kind of repeat the phrase to myself and see what pops up. What often pops up is relaxation 🙂
For me, it’s not so much that I think things should be different, but more that I WANT them to be different. I don’t WANT them to be like this. But maybe it all amounts to the same thing.
I can see how that meditation would offer a kind of release into what is, a way to disengage from the wanting. Thanks, Cort.
Honestly it’s a real release. I didn’t realize there was so much I wanted to be different :)…
Thank you so much for this wonderful blog (and for including me). There are so many wonderful insights from others too, expressed so beautifully. I certainly can relate to this from you: “I think that for me, acceptance is possible because I still experience pleasure…” That’s absolutely true for me too, Carol. The pleasures are smaller now but not insignificant by any means. Best to ALL of you!
“I do not hope for a cure or a radical positive change in my condition; instead I believe in the possibility of pleasurable moments.” ~Carol Lefelt
Thanks for this Carol…love it.
When we strive to do our best with the hand we are dealt, we will have a better overall outcome. This for me, doesn’t mean I appreciate the crash or having to live every single moment of my life in pain, some days unbearable, but it does give me hope that tomorrow I have tools that will help me see my cup as half full. We are much more than physical beings. I lived a go-go-go life, type A, despite pain since childhood. Now, I have learned to appreciate the good days more than I did before, because I accept that this may be as good as it gets, and how ever I feel today, in five years (I used to say ten, but age is upon me), I could feel worse and look back at these days as the good days. I want to know that I did the best with what I was given, including my time and talents.
I agree. So the hope is for the possibility of enough remissions in this relapsing/remitting disease to experience and enjoy the better days.
I just want to say thank you to both the author and the commentators. What a rich dialogue.
Have had FMS/CFS has a life companion for 29 years. Thought it was just a short interlude but it has dragged on and on. Gave up the dream of going back to work in my field and gave my professional materials to a young woman just starting out. This winter she was diagnosed with a very serious form of cancer.
I follow her blog and hear her saying many of the same things I have struggled with over the years. She who was so young, vibrant and incredibly healthy now suddenly shares my perspective. However, she has a disease for which there are standardized tests and treatment protocols and options. The supportive response from our community to her illness because of the word cancer in her diagnosis has made me feel sad about the years of largely isolated struggle I have experienced.
That being said….it does make me realize that acceptance of my lot in life releases me of the need to spend energy looking for a cure and savoring that which is good and wonderful in my life. Thanks to you all and the power of the internet when THE reason and THE cure is found I will hear about it.
That’s what I assume: if there’s some big breakthrough (hopefully more productive than the XMRV hullabaloo), we’ll find out through the Internet. It won’t sneak by us.
I’m sorry you’ve experienced that isolated struggle so common to ME/CFS sufferers, but glad that you also can treasure ithe good and the wonderful.
I think the ISOLATION is the worst aspect, oh is it?
oh I don’t know
but it has truly been difficult for me to alter in my set of circumstances
but every day I 🙂 again
I am 67 and have had ME for 27 years. During those years I sought to learn everything that I could about the condition and tried meditation, all manner of psychological exploration, naturopathics, homeopathics, acupuncture, specialists of every stripe, had all my amalgams replaced with porcelain, many, many diets, had treatments for Epstein Barr and Candida and have spent a fortune on treatments and supplements which may or may not have had effect- who can really tell? Is what you’re doing or taking actually working, or would the changes that come and go- the improvements, the relapses- take place as a sort of natural progression of this malady, regardless?
During this time, like many living people with this THING (do we even actually know what to call it- a disease, a syndrome…what?) I have lost my profession, my way of life, my marriage. My family still don’t understand or even believe that ME is a ‘real’ and that I am somehow just ‘malingering’ for effect. When I’m really sick and spending most of my time in bed, no one sees me, I don’t want anyone to see me, so all most people ever see of me is the ‘well, you LOOK okay’ phase.
Now, I can no longer afford to travel to see doctors, I don’t have money to spend on specialized treatments or even, at times, supplements. There are no doctors where I live that have the slightest idea about ME or what to do for me. I read with envy about people whose doctors send them for esoteric blood tests:)
Hope, hope, hope. Yet another 4-letter word it seems. When I first got his I was philosophical, spiritual about it. I felt as if the universe had given me a gift- an precious opportunity to learn from this many lessons about acceptance, patience, the nature and importance of life itself. Now, although I would like to join in on the ‘hopefest’ it feels to me as I’m just waiting to die. I’m so sick and tired of being sick and tired. And poor. And isolated. And somehow ashamed that I’ve given up, that I no longer have the money, strength, will or hope to do battle or to accept.
This is hard to admit but there it is. And I wonder- are others out there who feel this way? Do you keep it to yourselves because you don’t want to be one of the ‘hopeless’ amongst the ‘hopefuls’?
Della Mae,
I admire your honesty! I too have suffered for many, many years, and initially was hopeful. I tried every treatment I could…diets, food plans, holistic approach, acupuncture, etc. I spent a LOT of money, but haven’t made any progress. If anything, I seem to be going backwards even though I am being seem by one of the best. My family and yours seem to be of the same ilk. I too am waiting to die, and quite frankly, contemplate “leaving” by my own hand at least a few times a week! I am seeing a psychologist but I already know what she’s telling me…the only one I can change is myself. I’m sooooo tired of being sick and tired!!
Nancy-
Thank you so much for your reply. I’m not the only one! I ‘came out of the closet’ with my feelings because I think this- the hopelessness, the despair, the feeling that there is nowhere left to go, and no stamina or resources left with which to go there, even if there were- I think this is the level that many of us are reduced to.This is like a physical depression that descends like a suffocating smog. Although support groups and psychiatric practitioners can help, certainly, it is sometimes just, simply, too much to bear. How many of us contemplate ‘leaving’ or do? I, personally, only know one who has- a sad, bitter end, to a long and painful struggle….
and a hug for Nancy too
o
all I can do is send you a hug
o
brave lady
I strongly agree that it’s so hard to tell if some treatment is actually helping. There are so many damn variables. You also point to the crucial need for a supportive social, financial and familial environment. In addition to the burden of the physical illness, many of us have to endure such painful rejection and isolation that just increase despair.
I hope the ME/CFS community will find more effective ways to reach the general public. And that those of us who have for so long been “sick and tired of being sick and tired” can at least not feel shame about our reactions.
Carol, thank you, and well said. It is that shame- the shame of not only having found ourselves in poverty- both financial and personal- but the blame that society (even our own ME/CFS society) and friends and family can bring us to. It is ‘all in our heads’, we haven’t done enough to find the right diet or treatment or chemical or psychological solution to our illness. We have given up when we should simply and gracefully have accepted our fates. We’re merely lacking in stamina, or character or ‘acting the victim’. Emotionally unstable. Even accused of playing the ‘Get Out Of Jail Free Card’. Those of us who’ve battled long and have ended up depressed and defeated, feeling that we no longer have anything left with which to go on are considered weak and blamed for having come to feel the way we do.
The losses are great and continue to mount with time and though we may well go through periods of acceptance (I certainly have- years of it- grateful for the insights and opportunities for learning that ME has afforded me) we may come at last to despair when it finally seems that there is no way out, or, if there is, that we cannot afford to take or it will have come too late. Rather like a ‘psychological crash’.
I wonder: is suicide considered as one of the mortality ‘consequences’ in Lenny Jason’s CFS Mortality Survey?
Thanks for your honest post, it was helpful. I feel this way at times, and I have a strong support system.
I pray you have some “pleasurable moments” today. 🙂
Best, Tami
I too have reached 70. I was diagnosed some 20+ years ago, but have had CFIDS/ME since my 20s…spent a bunch trying to find someone who would not tell me it was “all in my head”…took me 30 years. I read your blog with a bit of envy! You see, my significant other passed years ago and I have no energy to go out to “look”. My family is not supportive (my daughter-in-law sent an email to me stating that my ME is bullshit, and that I don’t get to stuff…in this case Christmas dinner, because I won’t get my sorry ass out of bed! All of my close friends have either passed, or have moved to be closer to their families. I am very much alone. I tell myself it could be so much worse, but it’s difficult to maintain that attitude when I’m in constant pain and alone!
Oh, Nancy, it sounds- feels- all too familiar. So here’s an online hug for you…..
Here’s another gentle ((((hug))))
Thanks for shining a light on hope and acceptance, and on the experience of this blog-reader’s experience with it.
Much love and well-wishes,
Johannes
This blog specifically has so much unnecessary fodder for fueling misery regarding Me/cfs. Every day it’s something new: is this it? is this it? Needless to say I did not read this article, but noticed it was about giving up. Great idea!
Dave, “unnecessary fodder for fueling misery regarding Me/cfs”? How can you assume this if you didn’t even read the blog? If you had actually read it, Dave, you would have discovered that it’s NOT about giving up, but about those of us who are older, living and enjoying the final years of our lives to the fullest extent possible while accepting the hand we were dealt after YEARS and YEARS of struggle. It’s not as if we immediately gave up after being DX, never seeking medical advice, never trying half the drugs and supplements and other treatments known to mankind. We’ve all searched for the holy grail of treatment we assumed was buried out there somewhere, if only we kept looking, but are wise enough to know when to say UNCLE! We take the few supplements, drugs, and treatments that offer SOME relief now but are done with spending another dime to seek out more experts, more treatments, unless the holy grail is finally unearthed. (I think I must have Indiana Jones on the brain….or Monty Python. 😉 ) I see so many healthy seniors out there who never crack a smile, never find anything to wonder at or rejoice over, so the fact some of us can still find a bit of joy and humor in this world despite being ill for decades is truly miraculous. I hope you’ll take the time to actually read this uplifting…yes uplifting blog, Dave. Thanks again, Carol.
oh Dave you really need to expand your vision or clamp your tongue – sorry but my clamp failed!!!
I hope you ticked notify
xx
M.E. needs no fodder for misery.
Wow. Just wow. Thank you for your honesty.
I so relate to all you wrote. I turned 70 this last year too and it altered my thinking about my 13 plus years living with CFS/Fibromyalgia. I too spent so much money on trying to improve my health but to no avail. I have accepted more of the Buddhist way of thinking which has helped me a lot in dealing with the ups and downs of this illness. One thing I have noticed though is that it is a human quality to hold on to
HOPE. Even trying to live with a greater sense of balance and acceptance, I still bought a new shovel in the hope that I will be able to work in my garden again this Spring. As long as we are alive I think we hope. How could we go on without believing that something good will still happen and isn’t that HOPE?
Hope is my online name…and my life word. My kids have bought me the word in wood, fabric and plastic to put it where I can see it. Although I no longer spend the effort or money to search for the holy grail I am waiting with great curiousity for this study from Alabama to be released because I have an adult child who is also permanently disabled by this disease and only to work at a simple job way below her education part time. For her and myself I HOLD on to HOPE.
Beautiful piece. I’m 66 and have been thinking along the same lines for a couple of years now. I’m immensely helped by writing daily on a gratitude blog. I start the day wondering what I can experience that is beautiful, and I find so many small things to be happy about, even if I’m doing nothing and going nowhere. It’s really changed my life and given me something joyful to do every day.
Join us at http://www.graceinsmallthings.com
That’s great Sue – thanks for sharing that 🙂
I loved article one, but two – WOW
the collective ability here is amazing
much love to all
xx
I wanted to add my thanks for Carol’s article as well as the sharing by others. For myself, I feel it is best to try and live in the present, to let go of yesterday for that is already a memory, and tomorrow is promised to no one. So, all that anyone of us have is today – try to seek and savor the simple moments/blessings of each day.
Wow. Reading this blog and responses has been my gift for the day. I didn’t know how many of you are , like me, 69 years old and living with CFIDS for well over 35years. It has been a progressive disease,one that like many of you, I muscled through, looking good,except when no one saw me at home for days, sleeping as long as I could. I got to the point where I had to stop my consulting work about 10. Yrs ago. I got cancer, which seemed easy because as some of you said it has a protocol and I could take a clear path to fight it. I couldn’t handle chemo or tamoxifen…so I go for my mammogram each year with some fear. People had such concern and empathy for cancer, and as you know
Have no concept for CFIDS.
Many of you have written about your conclusions and coping practices. Your words are mine. I am too tired to write so eloquently. I Have a practice of three 5 minute yoga poses on the floor, followed by 5 to 10 minutes of meditation . I work on a gratitude list. My goal or maybe I should say “survival” this year has been to find acceptance. Maybe some peace.
Thank you all. Until now I thought I was the only one who has lived with CFIDS so many years. I take some solace in having a tribe who understands and speaks my language.
With love and gratitude ,
Patty
You’ve written eloquently without trying! Thanks for being one of “the tribe who understands.”
Carol,
Thank You! This is marvelous. You articulate a struggle for which there is no single answer. The hope/not to hope conundrum applies to all CFS patients, regardless of age. I am 46-years-old, but the exact questions you raise are the ones I am grappling with these days. But I love your take on the issues — your hard-nosed defiance of keeping up one’s “hope” when, in fact, letting go of it just a little bit might lighten the load. I think as patients we almost fear admitting that we do not hold on to hope — healthy people might consider that a form of giving up. I think it’s more of a realistic view — it allows you to enjoy salty popcorn and watch a movie with more pleasure than even the healthy person who takes such moments for granted. Seems to me that there is far more risk in trying to be relentlessly hopeful or upbeat. Barbara Ehrenreich wrote a book a few years ago entitled “Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America” and I read it with delight because she dared to express something very close to what you have said in this blog — illness is not necessarily, (or maybe ever) something for which we should feel grateful. Maybe, just maybe by being truthful about the real pain of disease we allow ourselves to be closer to others who can give support. At the very least, to be simultaneously ill and without hope, but still determined to endure; maybe from that comes some form of healing. Maybe.
I look forward to reading the Ehrenreich book. Thanks for the reference.
I enjoyed “Bright-Sided,” It was refreshing.
It’s good to read how others feel. I’m in my early 70’s and seem to be giving in more to this illness. Lately I’ve been going back to sleep after breakfast. Very unusual for me. I seem to need more bed time. Maybe it’s because I had bronchitis for three weeks, and my energy is especially low. I’m not fighting it now, just giving in.
It’s good to have a warm bed, a husband who helps. My kids are all grown, one still living with us. If this is how I must live, I can do it. I can enjoy what I do have, though the loss of another kind of life is painful. What I coulda, woulda, had my health held up. I send a gentle hug to my friends with all this suffering. Thanks for sharing so much. Abby
Thanks Abot
This is without doubt for me the most thought provoking blog I have been involved with.
I didn’t listen to my body today and went to the golf course to play nine holes on my buggy. I ‘hit the wall’ after about six holes and had to drag my sorry ‘you know what’ back home to sleep it off.
I am still hurting. I phoned my wife to say I was coming home very tired and got a sarcastic reply which she regretted almost immediately. She is a saint for putting up with me for so long but there are times when I wish it was just me so I wouldn’t have to see and hear the disappointment etc. I have become so sensitive to it it is like being punched in the stomach.
Yet ‘hope springs eternal’
My understanding of it now is that I was always programmed to fail and it didn’t really matter whether it was a virus, heavy metal, stress etc. Looking at the genetic map of my methylation cycle something was going to tip me over the edge eventually.
In a way it has given me some peace of mind to understand that and to give myself a little pat on the back for achieving what I have done against the odds. I’ve stopped looking for a magic bullet (antiviral etc) and am concentrating on simply bypassing the faults where possible and supplementing appropriately. I can hear the groans from here (UK) 🙂
I so relate to your empathy for your loved-one/caregiver. My husband too has been by my side from the beginning of my illness, 15 years ago. Like you, I really need to overlook lapses (a sarcastic remark here and there?) and understand how much he is sacrificing, even though that understanding boomerangs back upon me as more of my own loss. How bad we feel that we are making them feel bad, that this illness limits their lives as well as our own.
Ugh, what a mess. But, hey. . .six holes! And enough strength to write and post this response!
Thanks David and Carol. The urge to feel sorry for my supportive husband is a challenge I confront nearly every day. I’d like a “better” life for him.
I caught an upper respiratory infection from him a while back, (rare for me to get “real” illnesses), I said to him, “Oh my gosh I feel awful!”
The look he gave me made me burst into giggles. It was like, “Oh really, and what else is new?”
Carol,
It amazed me to read your words, “I absolutely do not have the strength and vitality to physically help others, beyond maybe writing a check for a charitable contribution.”
BUT YOU DO. You wrote this beautiful blog post (and many others), which is an invaluable gift and makes more difference than you know. Your post really resonated with me. I understand why you’re “not thankful for the insights and understandings and greater maturity and empathy and compassion, etc.” (me neither!) but WE are grateful for you, and the way you so beautifully and honestly share your struggle.
There’s no doubt that as I get older and my struggle with this illness gets longer (18 years and counting), hope feels increasingly hard to come by. But your words and the wise words of others here have given me hope today.
Thank you, truly.
Lisa
Indeed – Carol has been opening up important areas for discussion since she began blogging on HR. Quite a contribution!
Thanks Lisa and Cort. I appreciate the forum I’ve been provided, and I treasure the opportunity to read and respond to the reactions of others.
Perhaps this will help someone out there. I think it can. It sure has helped me function……………..
I read Carol Lefelt’s articles with interest. I have been a long-time ME/CFS patient (25 yrs) and have seen everything and lost everything. But, about 5 years ago I took a new approach that has made life so much more liveable, so I thought I would share.
It is my basic opinion that the brain gets confused – simple as that. Back when we got super sick at the beginning, our ‘fight or flight’ kicked as the brain felt under ‘threat’ from that 104F temp or whatever. Now due to some mechanism not yet understood, our constant immune load (genetic predisposition, environmental, already infected with retrovirus etc.) has this ‘fight or flight’ kick in remarkably easily now, again and again, staying there for days. If we are in a stressful situation, the ‘fight or flight’ stays on hyper-sensitive since it feels under this ‘threat’. It stays for weeks and months at a time, if not relieved or calmed. The body starts to scream at the brain to demonstrate it is under ‘threat’. Consequently, every little thing becomes even more sensitive, more of a ‘threat’, perpetuating the cycle and causing us to spiral down. I believe that all of the rest of our other problems stem from this core problem. I also think it is why we have different illnesses that have started our individual life spirals.
So, I tested my theory. By constantly studying in the past, I was keeping my subconscious brain keyed up. And when keyed up, hyper-sensitivity ensued causing ongoing issues. Each time I got ill, I examined my theory for a possible cause to that day’s problems, and every time it seemed obvious in hindsight as to what had happened. When the brain perceives a ‘threat’ (even when you don’t consciously), it kicks into protection ‘fight or flight’, shutting down non-essential systems not required for running from the sabre-tooth tiger. Digestion and sleep are the two most non-essential, and affect us a lot. Some people start to have trouble walking and talking. I myself lost ALL hearing in my left ear for 12 days. So weird.
Now this perceived ‘threat’ can range from from an infection, to dealing with an actual threat, to dealing with a jerk to literally worrying yourself sick. Cold can feel like -40F, warm can feel like +40F. Rashes become more sensitive, scratch them and perpetuate the ‘threat’. Go into a social situation you are dreading and your symptoms will be worse. Go into a very bad situation, and behave like a 3-year-old girl in order to get the ‘threat’ stopped as quickly as possible. If it sounds too goofy to you, try it for awhile. I think when you look back, you’ll start to see a pattern. For the past 5 years, I have done better by avoiding things that can be perceived as a threat by my subconscious. And only in those situations I couldn’t control, did things go badly.
Do NOT for a moment think I am saying this is a psychological illness. The chemistry of the cortisol, ACTH, adrenaline dysfunction is evident in Judith Light’s study and that piece of our hardware is a bit wonky. They already know that we stay in ‘fight or flight’ for days, when others are back in about 20 minutes. Yet, people have tolerance for any other body part getting sprained, but if the brain misfires in any way, they consider us ‘nuts’. Well, the brain has more electrical pathways in one cubic cm that there are stars in the Milky Way, so why wouldn’t it have difficulties?
I also have to stay smart about pushing myself, since pushing a bit too far can kick things in and before you realize it you are causing the ‘threat’ to yourself. Another key piece of advice is to NEVER stay in bed longer than 5 – 6 hours. After that, you just start getting sorer again. Get up & moving, even if you have to go back in an hour. I have a 2 -hour nap every day to make up for it, and life is possible now. And yes, napping on schedule is (mostly) possible for me now.
You can continue to do the things you feel help, provided they don’t cause your subconscious to worry. As an example, for many years I was extremely hyper-sensitive to many foods. Dairy, beef, fruit etc. and the more I thought about it, the more I was affected. We’re talking 16 hours vomiting at a stretch, a year and a half of diarrhea etc. My new approach of not worrying about them, makes it so I don’t exacerbate the problem causing a ‘threat’ to myself, and I can eat all of them again. Really. You CAN worry yourself into being worse. Relax and calm is the only answer to keep that ‘fight or flight’ problem from kicking in.
Of course, it is too complicated to go into all of the details, but start with this new approach. By taking Carol Lefelt’s advice of not constantly chasing the cure, you can begin to strive for calm in all things. And it works. Others will say ‘But that’s not me. I’m more serious than him. I need my this, that. or the other thing.” Well, I can assure you that I have been as sick as anyone, but part of why we all stick so strongly to our belief of ‘what helps us’ (Naturopathic stuff, faith, marijuana, quiet etc., etc.) is we perceive that it is the only thing that brings a modicum of calm. And calm keeps the ‘fight or flight’ from making your immune system hyper-sensitive, thereby avoiding the spiral. You don’t need the ‘this, that or the other thing’. You just need to recognize what is triggering you.
Recognize what is kicking in YOUR ‘fight or flight’ and avoid it, or those people. or that situation, or that infection. Stop studying obsessively. Try to think of anything OTHER than your illness. Lose the difficult people in tour life. You’ll start to see your worst times are caused when you aren’t able to do these things. And don’t expect instant results. It will take awhile to figure out what triggers you and just how easily. You are the cool flowing river, and all that junk.
So, it is now in our nature to hyper analyze, and I expect everyone will begin to pick apart what I have said. It’s far from a cure. But it works. Just try it. Doesn’t cost you a dime (and I have spent thousands).
I hope this helps even just one person function again, like me.
Perry
you have given excellent advice on your post on this blog.
When I began to not engage with toxic relatives, and to avoid their phone calls or emails that would push my buttons..
I felt better.
you are so right in that one can overthink their illnesses and just have their mind rotating the same thoughts over and over..
Discussing them too often on support groups can cause you to
get down in a well of despair.
I belonged to support groups on line and that was okay because I tried to be understanding and give compassion to others.
I learned from others who saw the leading specialists and tried the medications they prescribed because I could not afford to do so
However there is a fine line where we have to calm ourselves and have some acceptance of an illness and its limitations
and just realize that there will be a day that we will have a few good hours to enjoy or a day or two..The light will penetrate the darkness…with a ray of joy…
even if only briefly.
thanks for sharing your thoughts, you wrote them down so well.
Beautifully written Sheri!
Recently I started on a beta blocker for POTS to lower heart rate and sympathetic nervous system overactivity. For first time in 15+ years heart rate is normal and I do not feel ridiculously wired and on edge in my body. I didn’t invest a lot of hope in the medication, having been sick for 20 years, but am thankful it is helping with some of my symptoms. Still very sick but I will take any improvement. Radical acceptance enabled me to be more detached (on my better days I can do this) and try new treatments without desperate hope.
On a more negative note, I have no one where I live who is sick with ME/CFS/FMS, POTS, etc and that is isolating. And my closest friend here, who has been so helpful, recently commented twice that my thinking and memory seem fine (NOT!). Things like this are hard, especially because I have shared a lot with this friend about how these problems affect me. I am trying to let go of this kind of stressful interaction, but it happens so much…. I guess the most important thing is that I know my truth, my experience of living with this illness day to day, moment to moment. Hoping for others to understand that is unrealistic. To her credit, my friend does seem to understand my other disabling symptoms. And perhaps accepting the reality of my cognitive problems is sad and scary for her. I know she cares about me tons and that is precious.
Like you, Laura, I’ve had others praise my memory and thinking. They don’t perceive, as we do, the contrast to the way we used to be able to understand and remember. I can’t explain the kind of blank brain I experience so often. And they certainly aren’t with me, like my husband is, when I’m in the midst of a crash and can’t even read a newspaper.
I’m glad you have the friend who is so caring, and that the beta blocker is making life a bit better for you!
I have adopted an approach to therapies that some may find useful in the context of this discussion – it is not about giving up but being realistic. I take meds and supplements that are demonstrably needed – hypothyroid 🙂 synthroid, hypogonadism 🙂 androgel, low carnitine 🙂 L-Carnitine etc. Such as I find necessary to survive at my current low level of function. I have difficulty walking 🙂 I use a power wheelchair. I think of this as accepting my physical condition and adopting strategies that help me to engage and connect with the people i am with and do some of the things i am interested in.
Hope, on the other hand, i dont have much use for. Dictionaries aside, hope is wishing things were different than they are, like other forms of denial it can be a huge drain on mental energy. Someone in this thread mentioned Buddism,i am here now with 45 yrs of meditation practice so you may appreciate my point of view is different from those who are aligned with the dualistic ideas that dominate our culture. There is a buddist writer whose work is very accessible,Pima Chadron, whose work could be useful to anyone coping with chronic pain. One thing she said that sticks with me “pain is inevitable, sufferring is optional”.
Nothing is categorically true – sometimes pain is overwhelming, mostly though it is just part of the physical landscape (yeah like the Rockies or Himalayas a Big part). Sufferring is our mental reaction to pain, and reactions can be changed. We can point our awareness in another direction.
We are not lessened because we have ME or Fibromyalgia – we are changed, but in this situation we can love ourselves and the people we care about and have a full life as much as anyone. Different than expected, yes, me, i am living my full life as a hermit now, mainly housebound, but at night i can go outside and have the moon and stars and when i put down my sorrows there is joy.
What a beautiful post gbcoyote. Thank you. Did you know that Pima has or at had ME/CFS for quite some time?
Dear Carol,
While I empathize with the idea of acceptance, I can’t help but offer hope in the way of things that helped me. Either route you take…I send you compassion beyond measure. I would tell you, if you haven’t already done so: get a food sensitivity test from Enterolab.com, do a candida cleanse, do a parasite cleanse, and get your sacroiliac joints and tailbone checked for dislocations…by a PT who specializes in pelvic health. Pelvic dislocations can pull on the dural membrane that surrounds the spinal cord and brain, causing a complete shut down of the nervous system, chronic fatigue, headaches, and vision problems.
Wow, thank you for such an insightful article!
I’m only 29, but I’ve been working on acceptance, and balancing on the line between living the life I have, and searching for the life I want.
I am 61 years old and I have had fibromyalgia, CFS or M.E. and multiple chemical sensitivity illness for 30 years, diagnosed finally years later..
I have not spent a lot of money because I did not have it on supplements, specialists across the usa and therapy.
I did join groups and keep up with the ones who spent 100 thousand on their illnesses
and not one of them has gotten well seeing the best specialists, taking medications etc.
I do have some joy in life, I enjoy photography, flowers, my wild deer , cats, and nature
helping others when I can at the nursing home, and my personal relationship with Jesus Christ.
I like Carol, have not given up but I am not going to drain what joy and what little energy I have
anymore in trying to get well. I am going to enjoy what comes my way and what I can make happen in my daily life to bring joy to someone else.
the isolation is hard, as I am a people person, and like to make others feel special.
I was a hard working, deternined individual , compassionate, affectionate, encouraging to strangers and those around me….and certainly not lazy
I do not think that this illness had taught me anything I did not already possess.
So I have not had to l earn through this illness to be a better person, I have had to learn to
be less hard on myself and not beat myself up for not being able to accomplish physically what
my mind wants me to do.
Sheri
To Jim from March 22, 2014: please, please share as to how your physical therapist “cured” your muscle spasms in back, neck, trapezius muscles etc. Mine are agonizing (I currently get shots of Botox & trigger point injections but they don’t last long) and although I have been thru PT and massages, nothing helps for more than a few hours. If anything (other than ME/CFS, FM, migraines, severe weight loss, etc.) makes me give up, it will be the muscle spasms. The pain is unrelenting. I’d be happy to send you my email address. Thank you.