Agents for Change: The 10th Invest in ME International ME Conference, 2015 - Part 1
The 10th Invest in ME International ME Conference (IIMEC10) was held, as usual, in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 29th, 2015.
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The Subverting of the ME/CFS Mind

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 23, 2013.

  1. Bob

    Bob

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    Yep, we all do what works best for us.
    I just do what works for me, but I don't always cope well.
    I often do find a way to 'process' my emotions, or work through them (i.e. try to find a way to live with them or accept them), but I can't offer any pearls of wisdom.
    A few months ago I had a huge crash, after which I experienced massive levels of negative emotions...
    Anger, bitterness, frustration, resentment, guilt, etc etc.
    And they didn't disappear quickly.
    But I felt that perhaps they helped me get through a difficult period.
    Being angry at the world is sometimes better than feeling defeated.
    They didn't seem like self-destructive emotions, so I went along with them, and I think they were even empowering.
    But, yes, negative emotions can eat you up, and I've had my fair share of long-lasting depression in the past, before I ever had ME. I couldn't 'process' (work through) the depression, and it did not go away. It was very destructive, very negative, and impossible to cope with. Nothing positive about it at all.
    So I guess I was only talking about my recent experiences with emotions, and not my general experiences.
    I hope my previous post didn't sound preachy. It wasn't meant to be. I've just read it back and it seems a bit preachy.
     
  2. Dreambirdie

    Dreambirdie work in progress

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    Bob NO, it didn't sound preachy. I know what you mean about letting emotions process through you. If I try to make them go away, it always makes them worse. The resistance amplifies them.

    Usually I am able to process my emotions the best through creative activity, like music and especially painting, which brings me enormous relief and release. I highly recommend process painting for anyone who is able to do it. It has saved me from despair and angst and agitated fury on many occasions.

    When I'm at my worst, and have no energy at all for creative pursuits, I will lay down and stare out my window at the sky and just surrender to death. I imagine myself out of my body, far far away from the earth and free of all the suffering of life. That almost always makes me feel better, probably because there's genuine relief in knowing that one day this physical existence and all the misery of this horrible illness really will be over. I don't feel morbid when I go into that space. In actuality I end feeling lighter and happier from the surrender of my angst. Strange how that works. More proof that resistance is one of the worst enemies to anyone in pain.
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think that there are a lot of people who do have a regard for others, but that modern society is so focused on acquisition and self-aggrandisement that it has become the norm not to think of 'invisible' sections of society. People can even feel embarrassed about deviating from this norm and going to someone's aid, especially a stranger. Modern expressions like 'do-gooder' and 'worthy' used in a negative sense are illustrations of this perverse norm.

    Instead of communities we have individual households, where the doors are closed and the TV and computers on, and people are blissfully unaware of what is going on outside their little nucleus.

    I like living alone, but hate the thought of dying alone, and the possibility was brought home to me in 2007 and 2010 when I had my episodes of severe hyponatraemia (almost certainly resulting from prolonged stress and repeated over-exertion). The first time I was left alone by the paramedics after an hour of psychologising, and I really feared that I might die alone, being unable to get a reply on the phone from any friends and having increasing difficulty in actually lifting the phone, dialling and speaking.

    The second time, I bypassed the GP who had been the source of the psychologising, and was taken to hospital, so at least I was no longer alone, even if the docs hadn't a clue what to do with me.
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Almost always, I would say. Anger can be very empowering, and if it's appropriately channeled can be very effective.

    I don't think guilt is a good one but does need to be faced and dissected. Why do I feel guilty? Should I feel guilty? I only feel guilty over a few things I have done that have hurt others over the years, and over which I think guilt is appropriate. The crucial thing is not to let it eat you up. Better to try to make amends in some way, if not possible re the affected individual, then by helping someone else in some way. It could be by just donating to a charity, writing to a politician, etc. But the guilt will still probably resurface. I know someone who was looking after a child when the child ran in front of a car and was killed. It probably wasn't her fault. She always greets you with a friendly smile, but she drinks to try to cope with that guilt. I'm sure it will never leave her. That moment changed her for ever.

    Yes, depression is a bastard, and all bad in my view. I think that the fact that you can't work through it is actually definitive. I've been there and it nearly did for me.
     
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  5. Tally

    Tally Senior Member

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    I was shocked how well you set down the thoughts that have been running through my mind.

    All the people who have disappeared from my life, who in all these years have not even once stopped, looked back and wondered why is there an empty chair beside them. The medical personal, who instead of working with me to help me have made themselves my enemy.

    I became bitter and cynical since I've been ill.

    Dying is scary, but everyone dies. Dying while you're still alive is something no one should experience.
     
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  6. SanDiego#1

    SanDiego#1 SanDiego#1

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    One thing that has touched me emotionally this last month is -We have had a close friend die every week of August of different things. Some quick, some unexpected, A Wasp sting (allergic reaction). Another Massive Heart attack at a family reunion-getting into his boat.This puts things in prospective. All of these people were wonderful friends and we are still reeling from their deaths. PASSION SEPARATES THE WINNERS FROM THE WHINERS.
    A LOT OF PEOPLE ARE WORSE THAN WE ARE.

    SAN DIEGO #1
     
  7. brenda

    brenda Senior Member

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    Jody thanks. Your writing touched and resounded in my heart, and what others have said here about being alone and fearing dying alone.

    I have known a sense of rejection since I can remember, since my family said I was a hypochondriac, refusing to understand my sickness was due to mercury poisoning as a baby (not innoculations). Since I can remember, I have had immune and endocrine disruption, frequent chest infections, foggy brain, joint problems and depression. When I said I felt ill, I got 'that look' and would be told to take an asprin. Even when something serious happened, like when a dentist had to resuscitate me after administrating nitrous oxide, no investigations took place to see what was wrong with me. Later when I grew up, people disappeared one by one or treated me with disdain until I was left in total isolation.

    I don't want it to destroy me any longer. I don't want to use up the energy that I need to survive, on of grief and despairing emotions . I want to feel anger for others in my situation but I want to find peace for myself that does not depend on recovery. I will continue to do what I can for healing, with diet and supplements, but it might not happen. Sixty three years is a long time to be sick.

    Other people have been transformed in terrible circumstances with no hope. Like in concentration camps. It has helped so far, to put some beauty into my life. Listening to J S Bach's sacred music has lifted my spirits. Taking a short walk each sunny day, barefoot across grass to a playpark where a tire swing gives me the chance of some sun exposure, and a relaxing ten minutes swinging, then picking and smelling a rose on the way back, gives me great pleasure.

    I know I can be transformed, and find peace and have faith that God can help me. I have had many spiritual struggles, trying to make sense of my life, but I see that I must put that behind me now.

    For all of those people including family who have deserted, I must let them depart in peace. I can feel that it is possible. Acceptance is the key. It's not what happens to us but how we react that counts and my sickness is not going to win.

    It really helps to hear of the same struggles from others. I am angry that people can be just left to rot. But for me, I must let it go to overcome it. Thanks agin Jody I am happy for you that you recovered.
     
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  8. Wayne

    Wayne Senior Member

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    Hi Brenda, thanks much for your post. Many of your thoughts and sentiments seem very similar to some of mine. I’ve not really had a lot of instances where I felt a lot of anger for the way others treated me regarding my health challenges. In the early 1980's when my challenges began in earnest, there was far less known about CFS by the general population than there is today. And I somehow got it very early on that most people were never going to understand what I was going through, and so my expectations were always very low to begin with.

    But I’ve had other situations occur in my life that have stirred a lot of anger and sense of betrayal for me, mostly from mean-spirited actions by some of my siblings. But like you, I don’t feel it’s beneficial for me to hold onto that anger, and feel it’s important to look for ways to restore my own sense of peace and harmony in whatever ways I can. 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.

    There’s been several references to dying on this thread. I’ve read [and believe] that what we’re thinking and feeling at the time of our translation to the other side to a large extent determines what our experiences will be once we arrive there. If true, my choice would be to find myself in a spiritual environment of love, upliftment and adventure. My hope is that I’ll smooth over enough of my own rough edges to have earned this. So I strive to find as much love, harmony, and laughter in my daily life as possible, and to feel a genuine gratitude for what I do have. It’s not always easy, especially on my more difficult days. But I try not to be too hard on myself if I don't always cope as well as I would have liked. If there’s one thing I feel I’ve learned from this illness, it’s to take life moment by moment. And to give myself [and others] as much leeway as I can muster along the way.
     
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  9. Wayne

    Wayne Senior Member

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    So sorry to hear about your dear friends. This would be hard enough to deal with if a person were healthy. It's even more difficult to deal with when we're so ill. --- My condolences for the loss of these wonderful people in your life.
     
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  10. Bob

    Bob

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    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 at times, 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:
     
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  11. alex3619

    alex3619 Senior Member

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    Mindfulness does not necessarily require meditation, but it does require self observation. I used to be into breath meditation, but my mindfulness is largely self taught and I do it while in normal consciousness. This fits me better than meditation, I had to give up meditation in the 80s. What you do in meditation that is described as mindfulness is possible at other times, though you do have to stop and reflect. Its also something that needs practice, just like meditation.

    I too have deep anger and trust issues about how we have been treated, even though I have not been treated as badly as many and so this is less about me than about all the people I have talked with. I would call it a righteous anger - it arises because of a deep sense of injustice. However these feelings can be moderated by the kind of mindfulness that Bob was talking about. I also address it as a rationalist - I am always asking the question: is how I am reacting rationally justified? Sometimes it isn't.

    I am currently seeing (in real life) how someone with fibromyalgia is currently being treated by doctors. This person is being given the usual run around, and the doctors do not seem to know any of the recent science, and one missed a very important blood test that should have been done. They do however now have an official diagnosis of fibro, after being told for years they had depression or anxiety. Doctors have serious limitations in what they can do, and all too often we do not accept that, or worse, they (the doctors) don't accept that.

    Doctors do not deserve to be put on a pedestal, but it must be appreciated that a lot of this is not easy. One of our biggest issues is we don't have our own specialty - though of course rheumatologists claim fibro, its now very clear that there are neurological and immune aspects to it. So fibro, ME etc. really need neuroimmunoendocrinologists as a specific certification for medical specialists, and we don't have that yet. Nor is the science evolved enough for the experimental findings we have to be fully translated to clinical practice.
     
  12. PaulBe

    PaulBe

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    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.
     
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  13. rosie26

    rosie26 Senior Member

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    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)
     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    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:
     
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  15. meandthecat

    meandthecat Senior Member

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    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.


     
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  16. Wayne

    Wayne Senior Member

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    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".
     
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  17. Dreambirdie

    Dreambirdie work in progress

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    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.
     
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  18. rosie26

    rosie26 Senior Member

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    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
     
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  19. xks201

    xks201 Senior Member

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    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.
     
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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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