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The Subverting of the ME/CFS Mind

by Jody Smith

pixabay-shadow-ladyOf all the things ME/CFS is responsible for causing in our brains, this may be one of the biggest. Before I was lambasted by ME/CFS, I was an idealistic and trusting sort, loyal to a fault. I tried to see the best in people, tried to give the benefit of the doubt.
 
My soft malleable center has been pretty well kicked out of me over these many years of sickness. Along with the illness, there came a new world view, if you will. Because as the sickness settled in for a long stay, the people in my life gradually disappeared out the back door, never to return. And the Canadian government that prides itself on its humane safety net has let me down at every turn.
 
The fact that I am one among countless chronically ill people in my country, and the fact that there are countless more around the globe equally abandoned by their governments, only entrenches my shift from trust to cynicism.
 
When you know that your government will do nothing for you, and when you know that many of the people you knew don’t care whether you eat or starve, whether you have a roof over your head or you don’t … These pellets of hard truth left some pretty serious dents in my psyche as I was bombarded with them for years.
 
Even if I were to regain my health completely one day, with an income big enough and dependable enough to protect me from panic and sleepless nights, I am irrevocably changed. I will never see things the same again. And I don’t want to.
 
My son Jesse was a lot like me before he became ill at age 16. For the first few years of his illness, basic survival was predominantly his focus … if focus is a word you can use in connection with someone severely ill with ME/CFS. As his health improved somewhat, and his brain started working again somewhat, he also began to take a new and unpleasant look around. He also did not much like what he was seeing.
 
Way to go, powers that be. You have allowed thousands upon thousands of loyal citizens to see beyond your public relations, you have let it slip that they have no value to you. And they’ll never offer up their unquestioning loyalty again. Not to you.
 
It’s a common story, unfortunately. Solid citizen gets sick, no longer can carry their own weight, no longer can meet their financial obligations. The assumption for many people – and I was one of them – is that there is some type of intervention in place to keep them from plummeting to destruction.
 
But the safety net of welfare or disability pensions wasn’t there for me, or my family. And as the past connections in my life disappeared, and I was no longer able to see or talk to or work with old friends and family … well, there’s hardly anybody to even witness the decline that follows.
 
The loneliness can be excruciating, and I am saying this as a person with family members living with me. I can’t imagine what it’s like for those who must live alone. The realization of being entirely dispensable and not worthy of concern, or taking a look in on, causes a shrinking effect within and there is no one there to counteract it.
 
So when you don’t have enough money to pay your bills or buy your food, there is also no one there to be horrified for you, to be outraged or to sound an alarm on your behalf. If all you can do is drape yourself over your bed unable to lift a hand, then exactly nothing is going to happen. Period.
 
And the slow, inexorable, devastating ruinous cascade is set in motion. You cannot protect yourself and nobody is there to notice or to do it for you.
 
Nobody knows that you have lost so much weight you’ve now developed new medical problems. Nobody knows you can’t sleep and that this insomnia is heightened by an exquisite terror of what tomorrow will bring and how you will be able to survive it.
 
Neighbors may be passing by your house every day, going about their own business, unaware of or uninterested in the fact that you are losing the battle for survival. You are unable to call out to them and after a while you may begin to believe what everything around you is shoving in your face — that you really don’t have a right to the time, attention and ministrations of other busy normal people anyway. You have no currency with this world.
 
Our daily touch stones are fury and terror. Time does not make them easier to swallow. This is a slice of life that will change you from the marrow on out.
 
I have been very lucky. I have had some people clamber over the barriers to come get me. It’s still been unbelievably hard but it seems that the worst of the worst is behind me.
 
But there are so many who are sick with ME/CFS that are still bound and gagged in this twilight horror of a life. And they are very often without help of any kind from the people around them who could make a difference if they gave it any thought.
 
These fragile ones are often without assistance from the government that pretends to value its citizens and yet kicks its most vulnerable and helpless squarely in the teeth every day with no hope for anything better in the future.
 
Good work, governments of nations, if your goal was to create people who distrust you. They are multiplying daily, perhaps one day you will even actually see them.
 

'I was completely lost and in the dark before I found this website. I can never express what this place means to me.' Phoenix Rising forum member

 

{ 74 comments… add one }

  • PaulBe August 26, 2013, 3:50 am

    Jody, I´m so sorry for what you´ve been through. I also fell through the social safety net in Canada (and received an email message saying I was lying when I posted this on another board.) I´d paid high taxes, employment and government disability premiums, but have now gone over 20 years without employment income. I think it´s important for Canadians with ME who aren´t yet on disability benefits to save their medical records, as they might be very useful when applying again in future. Medical records in Canada are often destroyed by staff. As for the friends and family we´ve lost, I´m sorry, but we must manage without them. I have some optimism though, for our future. Some ME people are managing to find ways to make themselves function at a much higher level again. The cases I´m familiar with mainly are people who live close to tropical seas or practise scrupulous mould avoidance. Thanks for your heart wrenching article and sincere best wishes to you and all sick ME people.

  • rosie26 August 26, 2013, 3:57 am

    Does anyone else notice that they have to pace their emotions as well. ? I always know when my ME is deteriorating as I start feeling very tearful.

    I find I can only allow myself to cry for a wee while otherwise it inflames my ME even more, same as all the other emotions anger, etc .

    I usually try to distract myself by going for a very slow short walk or talk to friend on the phone. You have to have strategies in place for these times.

    So most times I can't allow myself to feel the full emotion at length.

    (Just trying to make it easier reading by doing the paragraphs)

  • MeSci August 26, 2013, 10:20 am
    Bob

    I used to practise a lot of mindfulness meditation before I became ill.
    It teaches you to become fully aware of your emotions but to avoid feeding or escalating them.
    I've kept some of the lessons with me, which can be helpful in every day life.

    A key part of mindfulness meditation is to allow your emotions to exist, but not to not to feed them or pursue them.
    You learn to observe your mental processes in a slightly detached way, so that they don't own you.
    You start off by a simple technique of labelling any arising thoughts or emotions. e.g. "that's a thought", "that's an emotion".

    In my own practice, I've found it helpful to gently 'encourage' emotions to exist which means to fully allow them to be freely expressed (so, not suppressing them), and to allow them to take their own course… This doesn't mean stoking the fire or to encourage them to develop, but just to fully acknowledge your thoughts and emotions.

    In mindfulness meditation, the key is not to latch onto thoughts and emotions, but to simply acknowledge them, label them as an emotion etc, and then allow them to drift on their own, not feeding into them or stoking the fire.
    One useful trick I've found, in meditation practice, and in every day life, is not to be fearful of emotions. (More easily said than done!)
    In my experience, being fearful of negative emotions, compounds them, and increases their power, and stops them from being understood and processed.
    Not being fearful of them means to gently face them head-on without fear stopping you from doing so… To fully acknowledge them.

    Obviously, this is an approach that I've found helpful, but it wouldn't be helpful for everyone, and I wouldn't find it helpful all the time. And as I mentioned earlier, nothing worked in terms of processing my depression, although mindfulness did help me deal with emotions that are associated with depression (e.g. guilt, fear, etc.)

    For positive emotions, I try to bring enjoyable and entertaining things into my life, and this tends to bring positivity with it.
    So I surround myself with things that keep me entertained…
    A computer for news, videos, entertainment, online socialising, forums etc…
    Books… Tasty food whenever possible… I grow some indoor plants…
    A short walk whenever possible… A phone chat whenever possible and when in the right frame of mind.

    I'd recommend a pet to anyone who thinks they could look after one…
    My late cat was a very close companion.
    She even understood the word 'cuddle', and would run ahead of me to the sofa, ready to jump onto my lap, when ever I said "do you want a cuddle?".
    She brought me many many days of happiness, unexpected love and meaningful companionship… Far more than I had expected from a cat!
    :cat:

    I have developed something like mindfulness over the years, but I sometimes wonder whether it is more due to mellowing with age! One emotion that can be impossible to acknowledge fully is grief, as it can be so painful.

    Cats – love them, and they can be extremely companionable and affectionate, as well as making me laugh. For me, they make a house a home. I would not want to live without cats.

    I have :cat::cat::cat:

  • meandthecat August 26, 2013, 1:02 pm

    Subvert- to overturn or overthrow from the foundation : ruin. 2. : to pervert or corrupt by an undermining of morals, allegiance, or faith………..

    As I read this definition my mind reels with the implications. I usually feel responsible for whatever happens to me, you take the cards you're dealt and after that it's up to you. So I got ill and….so.. I.. deserve to be ostracised and face the rest of my life as an outsider?

    Well No…..I grew up in a European social democracy and think it is an efficient and good way to run a complex society, a balance of rights and responsibilities with some accountability. It promotes a social responsibility where membership of the society is valued for what it gives to all it's members. These societies grew out of the horror of the world wars and the knowledge that gross inequallity breeds violence and brutality.

    We have forgotten, we have been duped. I live surrounded by Thatchers children and the crass vulgarity that there is 'no such thing as society'. Most of us are on the treadmill, running to stay still; those of us less able to run fear dropping off the end.
    A piece attributed to Martin Niemoller seems relevant
    First they came for the communists,
    and I didn't speak out because I wasn't a communist.

    Then they came for the socialists,
    and I didn't speak out because I wasn't a socialist.

    Then they came for the trade unionists,
    and I didn't speak out because I wasn't a trade unionist.

    Then they came for me,
    and there was no one left to speak for me.

    Then they got rid of the sick, the so-called incurables. – I remember a conversation I had with a person who claimed to be a Christian. He said: Perhaps it's right, these incurably sick people just cost the state money, they are just a burden to themselves and to others. Isn't it best for all concerned if they are taken out of the middle [of society]?

    We have been here before
    We thought that we lived in a society that cared we discovered that we didn't, it is not just our lives that have been subverted, it is our society; our changing status merely highlighted the fact.
    The contempt and disregard shown to us, 'the incurables' is nothing new it was mediated by medicine then as it is now.. What was once ameliorated by a sense of moral duty will now be tempered by technology.When they can sell us a cure we will once more be included.
    Subvertion seems to describe a process of physiology, of relationship with peers, with authority and of a group within society.
    Gordon Bennet Jody, you picked a word there.

  • Wayne August 26, 2013, 4:50 pm
    Bob

    I'd recommend a pet to anyone who thinks they could look after one…
    My late cat was a very close companion.
    She even understood the word 'cuddle', and would run ahead of me to the sofa, ready to jump onto my lap, when ever I said "do you want a cuddle?".
    She brought me many many days of happiness, unexpected love and meaningful companionship… Far more than I had expected from a cat! :cat:

    Hey Bob,

    I enjoyed your story and some of your reflections about your late kitty. Thought you might appreciate the following quotes from the author of the book, "Animals are Soul Too".

    If you have a pet, you are aware of the bond of love between yourself and your pet. This bond of love exists because you are Soul – a particle of God sent here to gain spiritual experience. Ultimately, to learn how to give and to receive divine love.
    What most people don’t realize is their pet is also soul. Animals are soul, too.
    Soul exists because God loves It. It’s very simple. And when two souls set up a bond of love, it is stronger and more enduring than eternity. It doesn’t matter if the two souls are human beings or if one of them happens to be a bird, a dog, a cat, or another animal form….

  • Dreambirdie August 26, 2013, 7:09 pm
    rosie26

    Does anyone else notice that they have to pace their emotions as well. ? I always know when my ME is deteriorating as I start feeling very tearful.

    I find I can only allow myself to cry for a wee while otherwise it inflames my ME even more, same as all the other emotions anger, etc

    Hi rosie26–I have become aware that there are three kinds of emotion at work in me: one is emotion in response to experiences I have in present day life that evoke various feelings, and that I would have even if I wasn't ill, second is emotion that is the result of past trauma, which was repressed and is coming up to be processed and released, and the last is emotion that is actually caused by my illness and by the imbalances in my brain and nervous system, due to viral and environmental toxins. Unfortunately the three of these can sometimes get all mixed up together, and that definitely makes things complicated.

    What I've seen in observing the dynamics of my emotions over the years is that when I feel more "normal" and not as ill, then my current day emotions pass through me like weather… They come and they go, and it's easy to feel them, respond to them, and move with them, without having them get "stuck" in a recurring loop in my mind.

    The emotions of past trauma are more difficult to deal with. They require a clarity that I often don't have on my bad days, but putting them off to a good day doesn't always work. As I have witnessed many times now, emotions come out when they are ready, and not necessarily when I am ready for them. When this happens, I end up painting my way through them, and that helps me process the trauma emotions better than anything else. Of course, therapy can also be helpful at those times, but that costs considerably more money than painting supplies and isn't nearly as satisfying.

    The emotions that are caused by my illness are the worst and the most difficult to process, mainly because I start thinking that I need to process them… :aghhh: and confuse myself into a whole lotta trouble with that. In those moments pacing and distraction seems to be the best antidote, along with certain supplements and herbs that help to ease the discomfort in my brain. Until my brain gets into a better place, these kind of emotions will just keep churning away. I have made a note to remember that, and to try to not get too identified with them.

    It would be SO NICE if this was simpler, but at least I'm getting better at discerning what's what in the emotional weather forecast of each day. Just knowing that is often a big relief.

  • rosie26 August 26, 2013, 8:15 pm

    Thanks Dreambirdie xx you put that very well, I will use that bit information, thanks for already thinking that one through so well. I think when the 3 emotions (past, present and emotion caused by illness) are all happening together I will recognize it in future and distract as it is too complicated to work out especially for our brain when in ME deterioration. :) xxx

  • xks201 August 26, 2013, 10:48 pm

    http://www.dailykos.com/story/2013/06/22/1218031/-Presented-Without-Comment
    What is worse is how our country the usa deals with veterans who risked their lives for the country who came down with similar diseases. There was a very touching suicide note here.

  • Sushi August 26, 2013, 10:54 pm
    xks201

    http://www.dailykos.com/story/2013/06/22/1218031/-Presented-Without-Comment
    What is worse is how our country the usa deals with veterans who risked their lives for the country who came down with similar diseases. There was a very touching suicide note here.

    Your link isn't working….

  • alex3619 August 26, 2013, 11:48 pm
    xks201

    http://www.dailykos.com/story/2013/06/22/1218031/-Presented-Without-Comment
    What is worse is how our country the usa deals with veterans who risked their lives for the country who came down with similar diseases. There was a very touching suicide note here.

    I have read this before. Some of the commentary is interesting too. That this can happen at all is a real problem. Medicine by political ideology stuffs up everywhere I see it, though to be fair I probably see it only where it stuffs up.

  • August59 August 27, 2013, 12:07 am

    Amen!! Jody – I was never a big reader before I became ill. It might seem odd, but I find it refreshing to read a lot of the fitness magazines just to remind myself what my body used to be capable of and possibly again someday.

    Many of the travel articles and interview articles of many of the people that you probably will not see interviewed anymore help take my pain and sick feeling away. Occasionally, there will be an article that is science related that may touch base on our plight for a cure or just some relief.

    Read a recent article about 4 college graduates that adopted wild Mustangs and recruited experienced guides and trail riders. They are going to ride from Arizona to Montana on Public Land through the Grand Canyon and Yellowstone. They are also wanting to bring attention to the approx. 47,000 Mustangs just corralled in pens so they will not graze on grass land used for private cattle ranchers and the approx. 37,000 still roaming free. Going on a trip like that just occupies my mind for a long time.

    http://houston.culturemap.com/news/travel/01-16-13-modern-adventurers-four-texas-am-grads-set-out-to-ride-wild-mustangs-3000-miles-to-canada/

    Recently read a wonderfully written article and interview about Keith Richards of the Rolling Stones which was a period in which I grew up in and it brought back memories of times when I could enjoy myself.

    The pain that hurts the most was not being able to be a critical part of my children's life and not being able to save my marriage.

    So, yes it really hurts to be all alone to a horrid disease that for the most part is shunned by the medical community and I really believe many of them are afraid of tackling the vast amount of research that will be needed to cure many of the diseases with unknown etiologies.

    At some point the socialized medical programs in the world will have to address research very had instead of just treating symptoms to feed big pharma.

  • Jody August 27, 2013, 1:27 am

    So many responses to this article ! I have been reading them all, so sorry to know about all the bad experiences, fascinated by the different trains of thoughts and ways of handling things.

    I normally try to respond to everyone who speaks directly to me, but there are so many I am overwhelmed.

    There are some wonderful writers in this community, so expressive and articulate. You should all be writing articles.:)

  • Rrrr August 27, 2013, 1:59 am

    the article you wrote, jody, is great. and the comments are even more powerful. so sad to read it all. i think of myself, of course, because i can relate to much of it, and also my bedridden friends who are often on the verge of either death or suicide due to this disease. and i think of my friend who did in fact take his own life after 17 yrs with me/cfs. (rest in peace, sweet patrick. i'm thinking of you right now.)

  • Rrrr August 27, 2013, 2:01 am

    the article you wrote, jody, is great. and the comments are even more powerful. so sad to read it all. i think of myself, of course, because i can relate to much of it, and also my bedridden friends who are often on the verge of either death or suicide due to this disease. and i think of my friend who did in fact take his own life after 17 yrs with me/cfs. (rest in peace, sweet patrick. i'm thinking of you right now.)

  • rosie26 August 27, 2013, 3:10 am

    I agree Jody, there are some amazing writers and thinkers here, great expression of thoughts. I have realized that I am not so hot at it myself. :)

  • brenda August 27, 2013, 7:52 am

    Wayne, thanks.

    "I read once, and have come to believe, that the consequences of holding onto “justifiable” anger are no different than holding onto unjustifiable anger. The body, mind, emotions, etc. are pretty much affected similarly, and not in a good way.

    Speaking for myself only, I’ve realized that holding onto any kind of anger is akin to “an expensive luxury”. It may make me feel better temporarily, and perhaps even give me a sense of recovering a power lost, but I’ve generally found these to be fleeting experiences. Even more importantly for myself, I’ve come to a firm belief that if thinking of somebody causes me to become angry, and/or disturbed in any manner, then I’m in a sense giving them control over my life. This is the very last thing I want to do, especially since some of these kinds of people have the profile of an “energy parasite”, who often, whether consciously or unconscsiously, try to feed off of others’ anger."

    I agree entirely. Some say that we need anger, even if it is for others before we will take action but I don't know about this. As you say, our bodies don't know if the anger is righteous or not (nor whether laughter is real of forced). For me the solution must be spiritual.

  • xks201 August 28, 2013, 4:23 am

    the link works for me.

  • Erik Johnson August 29, 2013, 4:31 am

    Paulbe isn't kidding. What he says is true.

  • currer September 11, 2013, 12:11 pm

    Thanks, Jody for an excellent article which must have been painful to write.

    Like you I have become more politically aware since becoming ill, and I am horrified by the attack on humane values that is going on in all Western societies at the moment.

    To be sick is not a crime, so why the attempt to portray the sick as hateful. In a capitalist society to be economically inactive is to be despised and unwanted. These attitudes have arisen before and always led to politically driven crimes against the citizen.

    I am concerned by the current attempt in Britain to change the stance of the Royal College of Medical practitioners on euthanasia. In societies where the disabled and sick are despised this is a very dangerous stance. http://pjsaunders.blogspot.co.uk/2012/11/rcgp-chairman-glare-gerada-moves-to-gag.html
    Claire Gerada and Fiona Godlee? familiar names!

  • Jody September 17, 2013, 8:40 pm
    rosie26

    I agree Jody, there are some amazing writers and thinkers here, great expression of thoughts. I have realized that I am not so hot at it myself. :)

    lol Rosie! You are hotter at it than you think.:)

  • rosie26 September 17, 2013, 9:06 pm

    😀 Jody x :)

  • Izola January 29, 2014, 2:01 am

    Thank you Jody. Thank you all. Iz

  • Jody January 29, 2014, 2:09 am
    Izola

    Thank you Jody. Thank you all. Iz

    You're welcome, Izola.:)

  • SanDiego#1 January 30, 2014, 5:52 pm
    August59

    Amen!! Jody – I was never a big reader before I became ill. It might seem odd, but I find it refreshing to read a lot of the fitness magazines just to remind myself what my body used to be capable of and possibly again someday.

    Many of the travel articles and interview articles of many of the people that you probably will not see interviewed anymore help take my pain and sick feeling away. Occasionally, there will be an article that is science related that may touch base on our plight for a cure or just some relief.

    Read a recent article about 4 college graduates that adopted wild Mustangs and recruited experienced guides and trail riders. They are going to ride from Arizona to Montana on Public Land through the Grand Canyon and Yellowstone. They are also wanting to bring attention to the approx. 47,000 Mustangs just corralled in pens so they will not graze on grass land used for private cattle ranchers and the approx. 37,000 still roaming free. Going on a trip like that just occupies my mind for a long time.

    http://houston.culturemap.com/news/…t-to-ride-wild-mustangs-3000-miles-to-canada/

    Recently read a wonderfully written article and interview about Keith Richards of the Rolling Stones which was a

    period in which I grew up in and it brought back memories of times when I could enjoy myself.
    August—-
    Sometimes leaving a marriage saves you!!!!!

    San Diego #1

    The pain that hurts the most was not being able to be a critical part of my children's life and not being able to save my marriage.

    So, yes it really hurts to be all alone to a horrid disease that for the most part is shunned by the medical community and I really believe many of them are afraid of tackling the vast amount of research that will be needed to cure many of the diseases with unknown etiologies.

    At some point the socialized medical programs in the world will have to address research very had instead of just treating symptoms to feed big pharma.