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CFS turned my spiritual life, and my church world, upside down

Discussion in 'Spirituality and ME/CFS' started by Jody, Dec 29, 2009.

  1. JustJack

    JustJack put on yer dancin' shoes

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    Can I echo and join in...

    Hi you beautiful women, suffering everyday with the same journey only different "fill in's" for what we did, who we were, and what we believed about the world and life.

    I was a theatre producer/director, actor, teacher and choreographer. I know that I can never have that again, but working that through is deeply difficult. I wake up everyday and think, I am not really sick, how could I be this sick, all the time, for so long, that it never stops and lets you "play the game of life."

    I feel like I pretend and show a good face to others, I mean, what can you really say, how can you make someone understand that has not either gone through this themselves, or family or a close friend, or lived, sequestered for any reason, for more than 6 mo to a year minimum at a time.

    Jody, you said that you poked your head back in and saw that the landscape changed, they had moved on, you were absent for too long. That's the problem, our continued absence. Whatever you started while you were feeling well enough got demolished the minute you crashed and there was not a chance of putting the pieces together again.

    Nothing can ever change what has happened to those of us that suffer from moderate to severe ME/CFS. I haven't been here long, and I am no expert, I am just a woman in her 50's who has been full blown ME/CFS since 1997 and now completely housebound for the last two years. And, I loved my busy, crazy, non-linear life. Now I plan for which room to clean in my house and when (since I have big OI and am wheelchair bound mostly), going shopping/doctors on Thursdays with my mother-in law and cooking dinners for my husband, who thank god loves me no matter what, and not turning into a complete vegetable.

    The women here in our age range speak almost like one. We chronicle the ravages from this illness with our collective stories. I can only pray that someday we are redeemed, validated and that studies on us will help stop this DD in its tracks.

    Thank you for allowing me to join your ranks and feel your spirits through this cyber world we have together.

    Hopefilled and Happy New Year

    Much love,
    Jackie in Sacramento
  2. JustJack

    JustJack put on yer dancin' shoes

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    Oh, I forgot...

    Thanks again for everything you are saying about spirit and God.

    With so much time, in the solitude, I listen and hear whispers and sense a flow to the world through us, around us and beyond us.

    If there is a blessing from ME/CFS, perhaps it is time and permission to listen in the quiet for the truth. It is there.

    Wishes for 2010:cool:
    Jackie in Sacramento
  3. spit

    spit Senior Member

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    This hits what I miss most, honestly. I was never what you'd call "type A", I actually tend toward mellower than most people can imagine, but I really took pride and comfort in the chaos around me. Liked roommates because they made my world messier in ways that forced me to think differently. Enjoyed that I had absolutely no solid plan or clear structure, and could still be confident that whatever came my way would be interesting to me and provide insight into things I'd never thought to think before.

    It's hard to have to think ahead about what I can and cannot handle, and find so much need to say no to things I'd love to experience. I'd never had to do that. I'm actually only 30, I feel much older most of the time. As in, really old. Older than dirt.

    But what the hell. I like dirt. It smells good in the rain.

    Sacto is my home too, and I've been enjoying the drizzly weather and the crows at dusk; that's still good stuff. Crows, by the way, were badly hit here by west nile virus in the last few years -- their population here is only now really recovering, and while that doesn't mean much of anything in terms of connection or relation to me specifically, it makes me that much happier to hear them in the evening, stronger than they were a year ago.

    Happy near year.
  4. Martlet

    Martlet Senior Member

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    My grandmother was that model. During WWII, there were some POWs forced to repair the railway line near her home. In spite of the fact that she and her family spent night after night hiding under the stairs while Nazi bombers dropped their payload, she once told me how she and her friends used to send cakes for the German prisoners - and this when they lived on miniscule rations. I asked her why. "Well, they were just bits of kids," she said, sure that they wanted no more of this war than she did.

    That same grandmother used to sit in the bathtub every night, praying out loud for every single person she could think of, by name. We used to sit on the landing and listen to her. Through her, we knew who was sick, who had died, who had financial trouble, and we children would then take these causes to Jesus in our night prayers.

    I had that same thought yesterday.

    My church was very different from what I have seen recounted so far. When I became sick, the church came to me in the form of visitors, and my husband was immediately signed up as a Eucharistic Minister - which meant that he could bring me Holy Communion whenever I couldn't attend Mass. When we moved over here, I was immediately placed on the sick list and when I couldn't attend, someone came to bring me Communion.

    After four years of illness, when I had been on the Florinef trial and was now reduced to skin and bone, we attended a Mass for healing. Not my first one, I hasten to add. I went to bed for three days beforehand, so I would be able to make it, then on the day itself, spent ages applying make-up. Then I refused the wheelchair, walking in on my husband's arm. I wanted no charismatic priest picking on me because I was in a chair! But he picked on me anyway. :D Twice. That night, I soared. I ran around the church, no pain, no fatigue, nothing.

    Okay, you may be saying, why am I here? Well, I joined a healing ministry under the wing of our archdiocese but after several months of working within it, I realised that I had forgotten what it was like to be chronically sick and I prayed. I asked for some of it back because I did not want to forget what people go through, day in and day out. That was thirteen years ago and since then I have had my share of problems, but instead of operating at less than 10% I now normally operate at around 80% except on rare occasions - like now - when I get dipped back in for a jolly good reminder. And it was that reminder that brought me here.

    I am no longer in ministry because the wonderful nun who used to run it has long-since retired and it seems to have been handed over to people with "methods" and such, instead of relying on God's good grace and perfect will, but I pray. And - thank God - I am often reminded that, like Jesus, we are not called to just look at the sick, but to walk the journey with sick people. So, people might justifiably accuse me today of "not wanting to get well," to which my answer is, "I'd love to, but not until we can all have that hope - together." Until then, I'm at God's mercy. Laugh if you want to, folks, but that's who I am.
  5. Countrygirl

    Countrygirl Senior Member

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    More please, Martlet

    :D


    Hi Martlet,

    I've heard of this happening to a number of people with M.E. :) If it is not too personal and private, I,for one, would love to know more about your story. Were you immediately well? Was it a partial or complete healing at this time?

    Have you read Jen Rees Larcombe's book, Unexpected Healing where she describes her healing from severe M.E?



    And that is great. Thank you for sharing your encouraging story, Martlet.

    Happy New Year.
  6. _Kim_

    _Kim_ Guest

    That's what I'm talking about. Not just 'love thy enemy' - bake them cake. We are all one. We are all one.

    I don't know if I would choose to be where I am, but I do look for the grace to do good now that I am here. I get it, Martlet. I really get it.

    Dear Holmsey, you have given me more words for my way of being than I could have hoped for. I never talk about this stuff and always stay clear of religious discussions. Maybe I do have something to add to the conversation after all?

    A-ho, Amen, blessed be!!

    And it never is any other way, right. We forget about the flow and when we remember - voila - there it is! Everywhere. All around us and within us.

    This is why I cannot join in discussions here about the 'villains' of CFS - the Reeves, the Wesselys - it is not for me to judge these men, only to forgive them and let go. Bake them cake.

    Aaaah, Holmsey...you brought a tear to my eye. I'm so glad that you decided to give us another chance. We would have missed getting to know this you - this beautiful you.

    I don't consider my experiences amazing - rather simple and ordinary actually. I do feel blessed that I got a good moral compass from watching my parents. It would have been impossible to figure that out on my own.

    My family is very understanding of my illness. For Christmas, they chipped in and got me a memory foam mattress topper for my bed. They heard that I'd been spending a lot of time there and wanted me to be comfortable.

    I'm going to call my mom and thank her after I type this. I honestly never thought that my family was all that special - it just was the way of life.

    Oh dear Koan. Don't know what to say except we can have more people like me and my family. I tell people - feeling crappy? Try doing something nice for someone in need. You see, it benefits me too. If everyone knew how much grace I get from living this way, they'd all be baking cake for the enemy soldiers.

    Yes, they are supportive, especially my mother. When I told her that I was afraid that I wouldn't be able to take care of myself, she told me that she would take care of me. I could move in with her. In fact, she'd love that.

    Absolutely!! At least the way my family did it. If one of us was sick, we got put on the list. Kind of like singing happy birthday when it's your party.

    I will start a prayer thread - that is, after I call my mom and tell her what a great mother she was.

    I'll start the thread, then we can choose a day/time to pray and meditate together. I love this idea so much that perhaps we could start tomorrow, the first day of the new year. Start with prayer and peace.

    Yes!! this is good!!

    And thanks to Jody, who - out of an uncomfortable situation - created a place for prayer and for community.

    Namaste
  7. spit

    spit Senior Member

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    This is a really trite and random response to a very thoughtful post and thread generally, but this:

    made me smile because I just watched a documentary about Dr. Bronner. You know, of the castile soap with the ranty labels about all one spaceship earth.

    Kooky dude. Don't agree with everything he said, and his interpersonal life seems to have been very, very hard. But damn, I love those labels, and the sincere good intentions of them make me smile every time.
  8. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    Hi Kim. *So* looking forward to meditating/praying with y'all.

    One thought on something you said:

    I'm sure you realize this, but there is of course another way of working - even fighting - for change besides using judgment, or resentment, or hate. A favorite quote:

    Power at its best is love implementing the demands of justice. Justice at its best is love correcting everything that stands against love.
    -- Martin Luther King, Jr.


    Happy new year to you and to all.
  9. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    All one! Dilute, dilute! :D
  10. Koan

    Koan Be the change.

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    I love Dr Bronner and his crazy lables and his crazy soap...

    and this crazy, crazy ride

    on spaceship earth!
  11. Koan

    Koan Be the change.

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    hahahahaha

    haahahahahah

    hahah

    ah yes, 'tis good.
  12. Marylib

    Marylib Senior Member

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    Dr. Bronner

    I remember first encountering these labels in California in the 70's. Used to stay in the shower far too long marveling at what I was reading. What a trip, as they say. Loved them.
  13. _Kim_

    _Kim_ Guest

    Thanks fresh_eyes for adding that. I'm a fierce defender of anything that stands against love.

    spit: :D:D:D:D:D:D:D:D:D:D
  14. Jody

    Jody Senior Member

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    Martlet,

    I have been brushing the cobwebs off of that part of my brain ... it is a slow process.:rolleyes:

    I'll start with this, excerpted from a book by Carlton Pearson. Whatever one's views on Pearson might be, he references some of the early Church history that can be researched by anyone interested in this topic.

    Here is a link to an excerpt from one of his books on the subject of universalism. http://search.barnesandnoble.com/The-Gospel-of-Inclusion/Carlton-Pearson/e/9781416547938#EXC
  15. spit

    spit Senior Member

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    Hee! HAHAHAHA! Ha! *sniff*

    If there is a God or whatever out there to hear it, I think laughter is maybe the best prayer of all.
  16. Koan

    Koan Be the change.

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    Amen to that!
  17. Martlet

    Martlet Senior Member

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    I was immediately and totally well. On past occasions, I had experienced a temporary relief of pain, but on this one everything was gone. My husband said that as it was going on, he thought, "I don't know how, but our lives will never be the same." But I am a tester, a sceptic, and I kept expecting it to come back. It didn't. Not until months afterwards and not until after I had asked for a taste of it back. The person whose illness had me whisper that prayer was suffering from severe CFS and the moment I touched her I knew that I had forgotten her pain. Of course, I was not expecting these really bad spells, but I learned I could not dictate the terms. :D

    Yes, I did read that book, right after it came out.

    I must admit, I felt a bit silly posting it here. Until now, only that particular priest and my very closest friends know about it. Well, unless you count my doctor.

    And you too.
  18. _Kim_

    _Kim_ Guest

    Awwww, I just made my mom cry and laugh and cry and laugh again. You know what she said when I told her how much I learned from her and my dad about being a Christian and caring for those that are sick - She said, "I guess I got that from Pops (her dad). He never talked about God, either. He just helped those he could and prayed for the sick."

    So thank you Pops [who was put in a Christian orphanage by his mother because she couldn't afford to feed him. He stayed there from the age of 7 until he turned 18. He lived until he was 94 and died with a smile on his face.]

    I'm going to start the prayer thread now. This one's for you Pops.
  19. Martlet

    Martlet Senior Member

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    And now you are making me cry.

    What a blessing for your mother to hear this, and on New Year's Eve. And yes, this one is for your Pops. I bet he is still smiling
  20. Jody

    Jody Senior Member

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    Martlet,

    I know that silly feeling. I have had it before, talking about these types of things. It's an odd kind of ... nakedness, isn't it? Or at least that is what I have felt.

    I have seen the type of thing you're talking about. I have also had it happen in my family, at home, more than once. So, I have no doubts about what you've described.

    It's good that you shared it here I think.:)

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