I would quibble that CFS is A disease. It's a symptom set that can be caused by multiple different diseases. (Imagine doctors talked of runny nose disease.) For some, it's extended mono. For others it's a microscopic parasite. I am saddened to hear that it's genetic for your wife. That is true woe.
Thank you for the sympathies. My view is that CFS is a syndrome while ME is a disease with an adult onset mitochondrial pathology triggered by (usually) a viral injury. But the jury is still out. It's definitely something, though.
I do feel a bit bad about quibbling, btw, but I wanted to assure readers that there are other sources of Chronic Fatigue. I have an extended family member who suffered from this symptom set and was cured by an integrative medicine doctor who found microscopic parasites in the bloodstream. For some this information can be useful.
For your wife, likely not. Thus sympathy for woe. But I would note that according to YOU her mitochondria once worked. Since mitochondrial DNA is somewhat disconnected from other DNA, this indicates that under some conditions her mitochondria are capable of doing a better job. So perhaps there is reason for hope. Is it possible to recreate the conditions where her mitochondria did their job? I know not. But it might be....I pray for yes.
That sounds about right to me - CFS is a “syndrome” or collection of observable symptoms that seem to correlate but may not be all caused by the same pathology. My wife and yours have similar symptoms but different causes. We were fortunate to find a doctor in DFW who was most helpful in steering us through the various possible causes. As he said, my wife’s immune system is so challenged that she uses most of her energy just to combat simple infections. This doctor spent the 90s treating AIDS patients and had some interesting points about medicine as it is currently practiced. But I agree with you - in her case, “extended mono” seems right.
Most specialists tend to be “disease farmers” - they make their money off chronic diseases (like endocrinologists who work with diabetes patients). They just didn’t seem to be that interested in chasing down my wife’s issues. Her PCP, though, has been great. She has worked with us every step on the way, and she is receptive to integrationist approaches.
I'm sorry to hear about the condition, but heartened to hear that the new meds are having a positive impact. It really is unfortunate when people assume malingering or somatization, and tragic when a medical provider does it. I think we would all do well to get more comfortable with not knowing the answers and holding the most charitable assumptions about others we can. Even if a condition does have a psychosocial component (really everything does), this disposition is required if you have any hope to treat someone in a way that they'll believe you have any interest in helping them.
"We would all do well to get more comfortable with not knowing the answers and holding the most charitable assumptions about others we can." This is truth, right here. Unfortunately our configuration for social conversation rewards us for the opposite. Thanks for the kind words, I really appreciate them.
This touched me deeply. My wife has a related issue - CFIDS (Chronic Fatigue with Immune-Deficiency Syndrome). She has suffered from this for 20 years. In her case her IgG levels are very low, and she requires monthly IgG infusions to keep her immune system within the low end of "normal." Like you, we have had many challenges over the years with her being house-bound most of the time. Her condition started with a cat of adult-onset Mono that left her immune system devastated. My deepest sympathies for you - I know the challenges.
Greg, my sympathies to you as well, that is a heavy cross for her (and for you as caregiver) to bear. I hope that with treatment she regains lost quality of life. All the best to you both.
Thank you. I hope the same for you and your wife. Also, many thanks to the ordinary folks out there who donate blood - we are the thankful recipients of your kindness.
Wow. Thank you so much for sharing this. From my perspective I come here for insights from human beings who seem to share my basic values. Whatever you think it’s a good idea to write about, I want to read.
My (late) mother had this condition, at a time when it was far less understood and accepted than it is today. Doctors still do not understand this condition, because the medical profession is focused NOT upon quality of life, but rather upon preventing death— even at the expense of quality of life.
Hello, I'm subscribing just to write this comment. I've suffered from chronic fatigue for over 10 years. It's eaten up my youth, all of my 20s. It's been a very lonely and humiliating experience for me. I was a student always at the top of my class; yet because of this illness, I've not been able to get a Bachelor's degree, or hold down a job, or maintain a social life, or develop a romantic relationship. I spend most of my day in bed also. Of course, I have to deal with the ignorant suspicion that I'm just a lazy layabout—when I can't hold my concentration for three minutes without feeling faint and sick, and when normal levels of stress make me feel dizzy and exhausted. So naturally, I deeply sympathise with your wife. However, I'm not writing this just to express my sympathy...
I'm writing to recommend that you and your wife begin saying prayers of deliverance/exorcism daily. I don't know what your religious beliefs are, or if you really have any, but I recommend it anyway.
Please don't take this as any form insult or insinuation. I know that in bringing up demons / evil spirits, people assume that I'm making some form of moralistic judgement—that your wife has committed some sin, or that she's being punished by God. Absolutely not! This isn't a matter of morals whatsoever. And I am certainly NOT saying that your wife isn't suffering from a real physical illness with real causes in her body; and the furthest thing from my recommendation is the thought that it's "all in her head" or that she's "making it up". I know she isn't, because I've suffered like her... I know what it's like to wake up from a 10 hour sleep and feel like you've just finished hard labour down the mines, how frustrating it is to feel that you're useless and a burden, etc. Evil spirits often work in the spiritual domain like viruses in the material; hence why C. S. Lewis calls the demons in his novel, That Hideous Strength, "macrobes". It isn't a moral issue, and it has nothing to do with your wife being a better or worse person than anybody else. (I imagine that she's rather a good person. In the Christian tradition, it's often the holiest people who are most harassed by malign spirits in fact.) Sometimes "getting demons" can be just like contracting a disease (and to extend that metaphor, prayer is what strengthens your immune system).
I'm saying all of this for two reasons: my personal experience, and the experience of actual exorcists who have reported that chronic fatigue *can* be influenced by evil spirits. You can look up the opinion of the exorcists yourself, but as for my personal experience: there have been times when I have been absolutely crushed, suffocated with exhaustion, and saying an exorcism prayer has almost immediately lifted it off me like a weight from my shoulders, with an extraordinary sense of relief and feeling of being delivered. This definitely isn't a psychosomatic trick either; it's not as if the exorcism prayer is a roundabout way of "psyching myself up" or "thinking positive thoughts" or "seizing control of my life", and all that self-help advice. I've been suffering with this for over ten years. I've spent countless hours trying to pysch myself up, motivate myself, and all the rest of it; I know the difference of trying to push through the fatigue like a thick bog or a hard wall on the strength of your own willpower and psychological determination, fighting for every inch of space, and saying an exorcism prayer and within a minute feeling like a weight has been taken off your shoulders, the air around you feels cleaner, and your mind feels less cramped and crippled. It's a marked difference, so much so that it can't be put down to mere auto-suggestion.
I'll post a prayer that I recommend below, but before that—I of course am not saying that your wife needs to give up any treatment she's being recommended by her doctor, or that she needs to radically shift from a physical understanding of her illness to a spiritual one. That would be a fanatical and stupid thing to say. The human being is a complex creature that has spiritual and bodily parts, which should be treated holistically. But I've come to believe that the modern secular West has way too dogmatic an understanding of illness as physical ailment. I think a lot of our diseases would not happen in a place like Africa, because as soon as it starts materialising they start praying, and it is warded off. I'm actually quite annoyed by it, because I think if our whole medical system wasn't so dogmatically materialist, and incorporated prayer as a normal part of its therapeutic devices, I would have been cured long ago, or never have had the disease in the first place. In any case, I know the disease has real roots and determinants in the body, and it goes without saying that your wife should continue with whatever's helping her and whatever is recommended by her doctor. But growing up and living in the modern secular West — and especially having a Master's in biomedicine for goodness' sake! — the tendency to see the disease as an 100% physical problem, and turning heaven and earth upside down looking for a physical explanation and a physical cure, must be overwhelming indeed. I'm not saying our modern medicine isn't great or that you're unwise to look for physical causes and conditions, I'm just saying it's one-sided, and happens to be guided by dogmatic assumptions buried deeply within our culture. I fully understand the suspicion that to involve demons in any way would be to trivialise the disease, or make it seem less real or serious than it really is—but again, it belongs to our western secular assumptions to reserve everything public and serious to the material. I know this disease has a real physical component to it, and I don't doubt that some are more prone to it than others based on their genetic and developmental makeup: but anthropologically speaking, if man is not a wholly physical beast, but rather a complex of soma, psyche, and pneuma, then we'd expect there to often be a complexity of material and spiritual causes in the etiology of disease.*
Anyway, here's the prayer that I recommend:
Spirit of N., I bind you in the Name of Jesus, by the power of the most Precious Blood of Our Lord Jesus Christ and by the intercession of the Blessed Virgin Mary, St. Michael the Archangel, the blessed Apostles, Peter and Paul and all of the saints, and I command you to leave N. (Name of person or object) and go to the foot of the Holy Cross to receive your sentence, in the Name of the Father, the Son and the Holy Spirit. Amen.
This prayer is taken from the book of the traditional Catholic priest and exorcist, Fr. Chad Ripperger, "Deliverance Prayers For the Laity". It's a good book, and Fr Ripperger has resources online you can look up, and many interviews on YouTube as well. If you are a Protestant and don't want to invoke the saints, feel free to trim the prayer down; I've often done that. You can also trim it down to the very basic, "Spirit of N., I command you to leave me in the Name of Jesus Christ." That also works. The first N. in the prayer above obviously refers to the kind of spirit you wish to be delivered from, and in this case it would be "Spirit of Chronic Fatigue / Exhaustion / Sickness", etc. The second N. is the person you wish to deliver, and if you're saying the prayer for yourself you can just say "me". My crucial tip for saying this kind of prayer is: don't strain yourself saying it. Again, with Western presuppositions, we tend to equate the spiritual with the subjective, prayer with the psychological. That's not wholly the case. This kind of prayer has a surprisingly *objective* power and effect. It almost seems to work by its own strength, as if merely saying the words has an effect (though I don't suggest bumbling them off thoughtlessly). Though this isn't shocking, given that in the gospel accounts the mere invocation of the name "Jesus" seems to inflict excruciating pain on the evil spirits, and the whole exorcism tradition of every religion in world history has tended to assume that words/rituals have an objective power beyond what's in the mind of the agent at the time. I say this especially for your wife's sake, because if she says it she needs to avoid the mistake of exhausting herself with it, straining herself under the mistaken impression that the harder she prays, the more powerful it will be. That isn't the case in my experience, and it's important to pace yourself. If you and/or your wife do start saying this or a similar prayer, I recommend that you say it repeatedly for an absolute MAXIMUM of 5 minutes, although going at it for 1 or 2 minutes is usually enough, and without straining your concentration or imagination while doing so (you don't need to do that). I'd say it's analogous to taking your medicine. Just say it once or twice a day, and whenever your symptoms are particularly bad — but don't overdose, or you'll just wear yourself out. If your wife tries this and does experience some very real and obvious relief from it (which I wouldn't be surprised if she did, given my experience), I'd caution getting overly excited by it and seeing it necessarily as an instant or miracle cure, and going overboard trying to make it perform immediate wonders — that's not my experience, and she'd likely be disappointed. The experience of exorcists seems to be that in cases of demonic oppression (which is what having a serious health condition like this would be, if it indeed had demonic participants) it is often a case of it being a prolonged healing process, analogous indeed to physical healing. Sometimes it works instant miracles just like physical medicine does, but that shouldn't be counted on.
All the best to you and your wife. God bless you both.
Thank you for this very kind prayer. My wife has often said she feels as though a dark cloud or spirit loons over her. Part of the reason I have recovered some of my own spirituality (which I've documented on the blog) is through trying to come to grips with the suffering of it all.
Any time where she feels most down, most trapped, most hopeless, most desperate, most harassed or confused—is when I would most recommend saying this prayer. That's when it's been at its more clearly potent for me.
Son of a Beehive! How did I miss this? Yes, not only CFS/ME, but also Fibromyalgia... actually the entire gamut of Chronic Pain *Itself* is both poorly understood and poorly treated by the Medical Establishment and the Public at large. (To be continued when I get another keyboard that wasn't made by a sadist.)
Okay, backup keyboard seems to work well enough. Time to spew-
Actually, I know darn well *why* I missed this- Because my brain is turning into Oatmeal, bit by bit.
That's not hyperbole. Studies done over the last few decades have shown that uncontrolled Chronic Pain (from ANY source) does indeed cause brain damage. The specifics may vary, but the overall effect is the same- Too much negative input causes parts of the brain to shut down & after a time, those parts die.
This coming July I will 'celebrate' my 30th year of CP. I am 52, so now the entirety of my adult life I've dealt with this. I could write an entire novella on the journey, the struggles, the horrors, the effects its had on my life, especially going 20 years without even knowing the cause, despite seeing nearly a dozen specialists over that time. (Spondylolisthesis L-4, Inoperable, as it turns out.) Perhaps if it had been caught when I first went to my Doctor back in 1995 that may not have been the case, but it didn't turn out that way.
What I have learned over the last 15 years though, is that no matter how much the body can hurt, the heart can hurt more. I don't want to go too much into it, but my experience being married over that time & dealing with this has been almost the exact opposite of Alex & Amy's. All that needs be said regarding how my Wife deals with my disability can be summed up as follows-
A number of years ago, I asked her if she ever felt Like the Biblical Job's Wife, wanting me to, "Curse God and Die." Her exact response?
"I would never say anything THAT cruel to you."
I have so much respect for Alex, for picking up this burden with Amy and not turning it around on her. For not making her responsible, blaming her, trying to make her into 'the bad guy', so he could feel better about distancing himself.
That's true heroism, Ladies and Gents, as great as any hero of Legend.
My deepest sympathies to you!
I would quibble that CFS is A disease. It's a symptom set that can be caused by multiple different diseases. (Imagine doctors talked of runny nose disease.) For some, it's extended mono. For others it's a microscopic parasite. I am saddened to hear that it's genetic for your wife. That is true woe.
Thank you for the sympathies. My view is that CFS is a syndrome while ME is a disease with an adult onset mitochondrial pathology triggered by (usually) a viral injury. But the jury is still out. It's definitely something, though.
I do feel a bit bad about quibbling, btw, but I wanted to assure readers that there are other sources of Chronic Fatigue. I have an extended family member who suffered from this symptom set and was cured by an integrative medicine doctor who found microscopic parasites in the bloodstream. For some this information can be useful.
For your wife, likely not. Thus sympathy for woe. But I would note that according to YOU her mitochondria once worked. Since mitochondrial DNA is somewhat disconnected from other DNA, this indicates that under some conditions her mitochondria are capable of doing a better job. So perhaps there is reason for hope. Is it possible to recreate the conditions where her mitochondria did their job? I know not. But it might be....I pray for yes.
I certainly pray for that, too. Thank you!
That sounds about right to me - CFS is a “syndrome” or collection of observable symptoms that seem to correlate but may not be all caused by the same pathology. My wife and yours have similar symptoms but different causes. We were fortunate to find a doctor in DFW who was most helpful in steering us through the various possible causes. As he said, my wife’s immune system is so challenged that she uses most of her energy just to combat simple infections. This doctor spent the 90s treating AIDS patients and had some interesting points about medicine as it is currently practiced. But I agree with you - in her case, “extended mono” seems right.
Most specialists tend to be “disease farmers” - they make their money off chronic diseases (like endocrinologists who work with diabetes patients). They just didn’t seem to be that interested in chasing down my wife’s issues. Her PCP, though, has been great. She has worked with us every step on the way, and she is receptive to integrationist approaches.
I'm sorry to hear about the condition, but heartened to hear that the new meds are having a positive impact. It really is unfortunate when people assume malingering or somatization, and tragic when a medical provider does it. I think we would all do well to get more comfortable with not knowing the answers and holding the most charitable assumptions about others we can. Even if a condition does have a psychosocial component (really everything does), this disposition is required if you have any hope to treat someone in a way that they'll believe you have any interest in helping them.
"We would all do well to get more comfortable with not knowing the answers and holding the most charitable assumptions about others we can." This is truth, right here. Unfortunately our configuration for social conversation rewards us for the opposite. Thanks for the kind words, I really appreciate them.
This touched me deeply. My wife has a related issue - CFIDS (Chronic Fatigue with Immune-Deficiency Syndrome). She has suffered from this for 20 years. In her case her IgG levels are very low, and she requires monthly IgG infusions to keep her immune system within the low end of "normal." Like you, we have had many challenges over the years with her being house-bound most of the time. Her condition started with a cat of adult-onset Mono that left her immune system devastated. My deepest sympathies for you - I know the challenges.
Greg, my sympathies to you as well, that is a heavy cross for her (and for you as caregiver) to bear. I hope that with treatment she regains lost quality of life. All the best to you both.
Thank you. I hope the same for you and your wife. Also, many thanks to the ordinary folks out there who donate blood - we are the thankful recipients of your kindness.
Wow. Thank you so much for sharing this. From my perspective I come here for insights from human beings who seem to share my basic values. Whatever you think it’s a good idea to write about, I want to read.
Thanks, Mark. I really appreciate it.
My (late) mother had this condition, at a time when it was far less understood and accepted than it is today. Doctors still do not understand this condition, because the medical profession is focused NOT upon quality of life, but rather upon preventing death— even at the expense of quality of life.
I'm so sorry to hear your mother had to suffer through that. You are 100% correct about the medical profession, we've seen it too.
Hello, I'm subscribing just to write this comment. I've suffered from chronic fatigue for over 10 years. It's eaten up my youth, all of my 20s. It's been a very lonely and humiliating experience for me. I was a student always at the top of my class; yet because of this illness, I've not been able to get a Bachelor's degree, or hold down a job, or maintain a social life, or develop a romantic relationship. I spend most of my day in bed also. Of course, I have to deal with the ignorant suspicion that I'm just a lazy layabout—when I can't hold my concentration for three minutes without feeling faint and sick, and when normal levels of stress make me feel dizzy and exhausted. So naturally, I deeply sympathise with your wife. However, I'm not writing this just to express my sympathy...
I'm writing to recommend that you and your wife begin saying prayers of deliverance/exorcism daily. I don't know what your religious beliefs are, or if you really have any, but I recommend it anyway.
Please don't take this as any form insult or insinuation. I know that in bringing up demons / evil spirits, people assume that I'm making some form of moralistic judgement—that your wife has committed some sin, or that she's being punished by God. Absolutely not! This isn't a matter of morals whatsoever. And I am certainly NOT saying that your wife isn't suffering from a real physical illness with real causes in her body; and the furthest thing from my recommendation is the thought that it's "all in her head" or that she's "making it up". I know she isn't, because I've suffered like her... I know what it's like to wake up from a 10 hour sleep and feel like you've just finished hard labour down the mines, how frustrating it is to feel that you're useless and a burden, etc. Evil spirits often work in the spiritual domain like viruses in the material; hence why C. S. Lewis calls the demons in his novel, That Hideous Strength, "macrobes". It isn't a moral issue, and it has nothing to do with your wife being a better or worse person than anybody else. (I imagine that she's rather a good person. In the Christian tradition, it's often the holiest people who are most harassed by malign spirits in fact.) Sometimes "getting demons" can be just like contracting a disease (and to extend that metaphor, prayer is what strengthens your immune system).
I'm saying all of this for two reasons: my personal experience, and the experience of actual exorcists who have reported that chronic fatigue *can* be influenced by evil spirits. You can look up the opinion of the exorcists yourself, but as for my personal experience: there have been times when I have been absolutely crushed, suffocated with exhaustion, and saying an exorcism prayer has almost immediately lifted it off me like a weight from my shoulders, with an extraordinary sense of relief and feeling of being delivered. This definitely isn't a psychosomatic trick either; it's not as if the exorcism prayer is a roundabout way of "psyching myself up" or "thinking positive thoughts" or "seizing control of my life", and all that self-help advice. I've been suffering with this for over ten years. I've spent countless hours trying to pysch myself up, motivate myself, and all the rest of it; I know the difference of trying to push through the fatigue like a thick bog or a hard wall on the strength of your own willpower and psychological determination, fighting for every inch of space, and saying an exorcism prayer and within a minute feeling like a weight has been taken off your shoulders, the air around you feels cleaner, and your mind feels less cramped and crippled. It's a marked difference, so much so that it can't be put down to mere auto-suggestion.
I'll post a prayer that I recommend below, but before that—I of course am not saying that your wife needs to give up any treatment she's being recommended by her doctor, or that she needs to radically shift from a physical understanding of her illness to a spiritual one. That would be a fanatical and stupid thing to say. The human being is a complex creature that has spiritual and bodily parts, which should be treated holistically. But I've come to believe that the modern secular West has way too dogmatic an understanding of illness as physical ailment. I think a lot of our diseases would not happen in a place like Africa, because as soon as it starts materialising they start praying, and it is warded off. I'm actually quite annoyed by it, because I think if our whole medical system wasn't so dogmatically materialist, and incorporated prayer as a normal part of its therapeutic devices, I would have been cured long ago, or never have had the disease in the first place. In any case, I know the disease has real roots and determinants in the body, and it goes without saying that your wife should continue with whatever's helping her and whatever is recommended by her doctor. But growing up and living in the modern secular West — and especially having a Master's in biomedicine for goodness' sake! — the tendency to see the disease as an 100% physical problem, and turning heaven and earth upside down looking for a physical explanation and a physical cure, must be overwhelming indeed. I'm not saying our modern medicine isn't great or that you're unwise to look for physical causes and conditions, I'm just saying it's one-sided, and happens to be guided by dogmatic assumptions buried deeply within our culture. I fully understand the suspicion that to involve demons in any way would be to trivialise the disease, or make it seem less real or serious than it really is—but again, it belongs to our western secular assumptions to reserve everything public and serious to the material. I know this disease has a real physical component to it, and I don't doubt that some are more prone to it than others based on their genetic and developmental makeup: but anthropologically speaking, if man is not a wholly physical beast, but rather a complex of soma, psyche, and pneuma, then we'd expect there to often be a complexity of material and spiritual causes in the etiology of disease.*
Anyway, here's the prayer that I recommend:
Spirit of N., I bind you in the Name of Jesus, by the power of the most Precious Blood of Our Lord Jesus Christ and by the intercession of the Blessed Virgin Mary, St. Michael the Archangel, the blessed Apostles, Peter and Paul and all of the saints, and I command you to leave N. (Name of person or object) and go to the foot of the Holy Cross to receive your sentence, in the Name of the Father, the Son and the Holy Spirit. Amen.
This prayer is taken from the book of the traditional Catholic priest and exorcist, Fr. Chad Ripperger, "Deliverance Prayers For the Laity". It's a good book, and Fr Ripperger has resources online you can look up, and many interviews on YouTube as well. If you are a Protestant and don't want to invoke the saints, feel free to trim the prayer down; I've often done that. You can also trim it down to the very basic, "Spirit of N., I command you to leave me in the Name of Jesus Christ." That also works. The first N. in the prayer above obviously refers to the kind of spirit you wish to be delivered from, and in this case it would be "Spirit of Chronic Fatigue / Exhaustion / Sickness", etc. The second N. is the person you wish to deliver, and if you're saying the prayer for yourself you can just say "me". My crucial tip for saying this kind of prayer is: don't strain yourself saying it. Again, with Western presuppositions, we tend to equate the spiritual with the subjective, prayer with the psychological. That's not wholly the case. This kind of prayer has a surprisingly *objective* power and effect. It almost seems to work by its own strength, as if merely saying the words has an effect (though I don't suggest bumbling them off thoughtlessly). Though this isn't shocking, given that in the gospel accounts the mere invocation of the name "Jesus" seems to inflict excruciating pain on the evil spirits, and the whole exorcism tradition of every religion in world history has tended to assume that words/rituals have an objective power beyond what's in the mind of the agent at the time. I say this especially for your wife's sake, because if she says it she needs to avoid the mistake of exhausting herself with it, straining herself under the mistaken impression that the harder she prays, the more powerful it will be. That isn't the case in my experience, and it's important to pace yourself. If you and/or your wife do start saying this or a similar prayer, I recommend that you say it repeatedly for an absolute MAXIMUM of 5 minutes, although going at it for 1 or 2 minutes is usually enough, and without straining your concentration or imagination while doing so (you don't need to do that). I'd say it's analogous to taking your medicine. Just say it once or twice a day, and whenever your symptoms are particularly bad — but don't overdose, or you'll just wear yourself out. If your wife tries this and does experience some very real and obvious relief from it (which I wouldn't be surprised if she did, given my experience), I'd caution getting overly excited by it and seeing it necessarily as an instant or miracle cure, and going overboard trying to make it perform immediate wonders — that's not my experience, and she'd likely be disappointed. The experience of exorcists seems to be that in cases of demonic oppression (which is what having a serious health condition like this would be, if it indeed had demonic participants) it is often a case of it being a prolonged healing process, analogous indeed to physical healing. Sometimes it works instant miracles just like physical medicine does, but that shouldn't be counted on.
All the best to you and your wife. God bless you both.
* I recommend reading philosopher Shandon Guthrie's paper, "How Not to Object to Demonic Realism," https://www.mdpi.com/2077-1444/13/7/610
Thank you for this very kind prayer. My wife has often said she feels as though a dark cloud or spirit loons over her. Part of the reason I have recovered some of my own spirituality (which I've documented on the blog) is through trying to come to grips with the suffering of it all.
Any time where she feels most down, most trapped, most hopeless, most desperate, most harassed or confused—is when I would most recommend saying this prayer. That's when it's been at its more clearly potent for me.
Wise words indeed.
Son of a Beehive! How did I miss this? Yes, not only CFS/ME, but also Fibromyalgia... actually the entire gamut of Chronic Pain *Itself* is both poorly understood and poorly treated by the Medical Establishment and the Public at large. (To be continued when I get another keyboard that wasn't made by a sadist.)
Okay, backup keyboard seems to work well enough. Time to spew-
Actually, I know darn well *why* I missed this- Because my brain is turning into Oatmeal, bit by bit.
That's not hyperbole. Studies done over the last few decades have shown that uncontrolled Chronic Pain (from ANY source) does indeed cause brain damage. The specifics may vary, but the overall effect is the same- Too much negative input causes parts of the brain to shut down & after a time, those parts die.
This coming July I will 'celebrate' my 30th year of CP. I am 52, so now the entirety of my adult life I've dealt with this. I could write an entire novella on the journey, the struggles, the horrors, the effects its had on my life, especially going 20 years without even knowing the cause, despite seeing nearly a dozen specialists over that time. (Spondylolisthesis L-4, Inoperable, as it turns out.) Perhaps if it had been caught when I first went to my Doctor back in 1995 that may not have been the case, but it didn't turn out that way.
What I have learned over the last 15 years though, is that no matter how much the body can hurt, the heart can hurt more. I don't want to go too much into it, but my experience being married over that time & dealing with this has been almost the exact opposite of Alex & Amy's. All that needs be said regarding how my Wife deals with my disability can be summed up as follows-
A number of years ago, I asked her if she ever felt Like the Biblical Job's Wife, wanting me to, "Curse God and Die." Her exact response?
"I would never say anything THAT cruel to you."
I have so much respect for Alex, for picking up this burden with Amy and not turning it around on her. For not making her responsible, blaming her, trying to make her into 'the bad guy', so he could feel better about distancing himself.
That's true heroism, Ladies and Gents, as great as any hero of Legend.