The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Illness is not our true self/soul

Discussion in 'Spirituality and ME/CFS' started by Gingergrrl, Jul 10, 2014.

  1. SeaShell

    SeaShell Senior Member

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    @Gingergrrl43
    I have written this offline in bits and pieces...couldn’t manage otherwise

    We need to find coping mechanisms to survive – there are the bad days and sometimes the good days. Of course “good” day for us is a relative term. Just as we stock up on the medicines and supplements we need for our bodies, we also need to get supplements in stock (= be prepared) for the emotional bad days.

    To deal with the guilt: On the “good” days let the people you know, know you care about them. Let them know that when you have bad days and say or do nasty things, it is nothing to do with them and everything to do with something going wrong in your body. If you are able to, write them a note or make a simple card (nothing fancy, fold a piece of paper in two and draw or write a message) and give it to them (even if you live under the same roof). This is all you can do in this situation. Try and take off the guilt coat - you are not deliberately wanting to hurt your loved ones. And if they care about you too, which seems so; they will understand when you have bad days. And remember “Those who matter don’t mind, those who mind don’t matter”.

    When you have a bad day, be kind to yourself. Get yourself some “me-time” ...find a quiet corner or shut yourself in a room..... some of these can work for physical crashes too. I read your posts and decided to put together some of the methods I use.

    1. Do you like reading?
    I get myself a stack of books ranging from very light reading to not-so-light (all from the public library). But definitely not the gory crime and bloodshed variety! Depending on mood and what I can cope with, I may try to read. Sometimes, I turn pages without being able to really take much in. Doesn’t matter .... I’m just trying to distract myself.

    2. How about some relaxing music? Will that work?
    Of course, listening to music can be passive and one can get even more emotional with some kinds of music – in which case, it’s no good.

    3. Deep breathing can be relaxing and therapeutic.
    Focus on the breathing In and Out. Repeat the In and Out or count numbers.

    4.Meditation mantras
    When you are having a good day, find a few mantras and write them on a sheet of paper and keep it where you can find it. The mantras can be a word like “Peace” or “Shalom”, a phrase like “All is well”, a quote, or a prayer or a short poem or a verse from a song or a psalm, the serenity prayer .... a universal affirmation like “Everyday in every way I am getting better and better and better” or you can use the words your husband said to you or make up your own. Anything that is positive .....

    Get a prop (you don’t need one but I find it helps to keep me focussed) or you can use your fingers or something like a necklace with several beads, or a rosary or something similar. Recite your chosen mantra and count off the beads. If you get distracted and think of something else, say the fight you had, it’s ok, as soon as you can, come back to your mantra. If you start crying, cry, it’s ok, then come back to the mantra and continue. Keep at it for as long as you can. Over time, it will have a soothing, calming effect. You can repeat the mantra like a robot or you can reflect on the words as you repeat them. Whatever is helpful. You can stick it on the wall opposite your bed so you see it often and the subconscious absorbs it.

    I use the mantra method anytime I find I can’t cope. I am trying to get about with the little I can do whether it is cooking or on my way to get groceries and start to have some reactions, I think of a mantra or inspirational song and keep repeating it.

    5. On a good day, when you are on the internet, instead of spending all your time related to health issues, take off 5 minutes and search the internet for stories of inspiration, songs and poems and quotes that will cheer you up. When you find something you like, copy it in a 'Scrapbook' document.

    Find some good jokes and cartoons ... you’ll get some on the PR site as well. If you find some really good ones that appeal to your sense of humour, copy them in another 'Jokes' document. The jokes may be corny or cute, wicked or weird, childish or highbrow ... if you find them really funny and fits in with your sense of humour, great.
    Now on your bad days open these documents, if you are up to it. You may find one of these stories or poems lifts your spirits. Check out the jokes .... if you are in low spirits they may not send you into peals of laughter, but maybe they’ll just get a small smile from you, and that’s good enough.

    What you are doing is trying to stay calm and sane under difficult circumstances. You don’t want the monster to get the better of you. So, do what you can to win each battle, even if winning the war is some way off.
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    @SeaShell Thank you so much for typing me such a detailed and beautiful description of how you cope. I will respond in more detail when I am more alert and going to bed shortly but I love the mantra idea. One thing I really like and have used in the past is "Breathe in love, breathe out fear." My problem is that when I am feeling really bad physically or am really afraid, all my grounding techniques can go out the window. I need to write them down when I am feeling better so I can access them on bad days. Thank you again, you are amazing to type all that for me (and the rest of the board.)
     
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  3. NK17

    NK17 Senior Member

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    @Gingergrrl43 just woke up and read this thread full of pain and suffering, but also of human kindness, true caring and practical suggestions.

    What can I say that hasn't been said yet?

    We are thrown against our will down the rabbit hole into a world of pain, suffering, odd symptoms and misunderstanding of the true nature of ME/CFS.

    We carry a Beast on our backs, an invisible beast. If we are lucky, when we get hit by it, we are in a good enough relationship, with another decent human being. But decency is not enough sometime, because the level of sensibility needed to deal with a previously healthy partner is, at times, out of this world. The type of care and scientific understanding of what is happening to our bodies is daunting. And then there are all the lost parts of our previous lives (careers, physical abilities, social, emotional, spiritual, sexual) everything that makes us what we are; everything gets lost and we are asked to face a tempest.

    All I can say is that in the past few months since I joined PR, I have reclaimed my true self, I have learnt to shelter my core trough the exchanges that I've with my fellow sufferers.

    I don't feel alone anymore, I feel stronger and empowered by all of you; while this cannot erase the actual worries that relate to my future health wellbeing and my financial soundness, it is in itself a great accomplishment.

    Our disease steals away our socializing ability and man is a social animal, it is human to feel lost, angry and sad, but it also very human to persevere and go against all odds.

    I hope your day today will be a bit better than yesterday. One step at the time is how we climb the mountain, so they say. The problem with us is that we're falling down from a tunnel, but trust me when I say that at some point you'll hit the ground in the middle of a meadow, surrounded by strange and unknown things and that one day soon, you'll start to climb that mountain too.

    You'll suffer setbacks, but you'll somehow continue climbing.

    We are in this big mess, but together :hug:.
     
    Last edited: Jul 12, 2014
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  4. ahmo

    ahmo Senior Member

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    @Gingergrrl43
    Totally!!

    A few days ago I fell into a hole of misery. I could see it was triggered by sorting, at long last, through a box of papers from my past. But nothing helped me out of it. And then, I had an experience to remind me just how transient that, too, is. Stuck in ruminating mind, filled w/ misery...then after my second coffee enema, I felt fine....When I changed my biochemistry, the layer of misery was gone. truly.

    Thankfully these days my irritability and agitation come and go, instead of being the default position. And gratefully we have this space to be in our individual big messes, together.:love::hug:
     
  5. gretac

    gretac

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    I love the themes in this thread from over a year ago. Your comments, @ahmo remind me that "This too shall pass" can be a great mantra, too - for me it's actually helpful whether I'm doing well or poorly: obviously when I'm doing poorly it's helpful (especially when I remember to take my Magnesium! - my equivalent of your coffee enemas, ahmo). But also when I'm doing well and tend to forget once again about pacing and not using up all my energy, "This too shall pass" is a really helpful pacing reminder!
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @gretac thank you for reviving my thread from over a year ago and I had forgotten all about it! I am glad that it still resonates for people and it definitely still does for me. In some ways I have grown since writing that thread and in others I am still completely stuck so it was interesting to read.

    I shortened my screen name last year to remove the number so in case you (or anyone) were to tag me it is just Gingergrrl without the 43.

    And shortly after that thread I bought and read the Toni Bernhard book that Andy recommended which was excellent but I lost it along with all my hundreds of books and all our belongings when our condo was contaminated by toxic mold. But maybe some day I will buy it again and it had some valuable lessons.

    Thanks again Gretac for reviving this thread and it brings back a lot of memories!
     
    Last edited: Aug 10, 2015
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  7. gretac

    gretac

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    @Gingergrrl I was so drawn to the title of your thread! It's such a good truth to remember/be reminded/remind ourselves of: yes, this illness is not our true self/soul. We are much bigger than that, our core self is. That's what keeps me going through all the fluctuations - that there's a core that is steadfast, that doesn't go up and down with the illness. Like the still point at the center. So thank you so much for creating this thread! :)

    Oh, and yes, I love the Toni Bernhard book, too!
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @gretac I am so touched that my thread affected you so deeply and it is moments like these that really make my day b/c I feel like I have done something useful! Welcome to PR, and I am not sure if you posted an introduction and I missed it, but in case I did... I wanted to welcome you and am glad my thread from a year ago brought you some peace :hug:
     
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  9. gretac

    gretac

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    @Gingergrrl thanks for such a warm welcome! I probably never did post an introduction, just plunged in. I've been on and off (mostly off!) these forums for several years, but very intermittently, with big gaps in between (like months or years, probably!) It's been a long time this time. I get drawn back in by a political issue, or a medical question, or, like here, looking to share in some spiritual support. What a great community!

    And, yes, it's so nice when we can feel like we've done something useful, right?! which you certainly have :)
    And even when I don't feel like I am able to be useful, I try to remember what my father has told me: No time spent alive is a waste.
     
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  10. digital dog

    digital dog Senior Member

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    I used to say that my soul is crying as it is not able to penetrate my physical body.
    Sometimes my soul comes to the forefront and I see the real me. The enthusiastic, grateful, soulful, charitable, happy person.
    I LOVE those days (or hours) but they happen so infrequently.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @digital dog Wow, thanks for finding and reviving this thread I started last year and it always helps me to re-read it. I relate to everything that you just shared.
     

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