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Suffering and spirituality 2

Discussion in 'Spirituality and ME/CFS' started by Nielk, Aug 27, 2011.

  1. Nielk

    Nielk

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    Hi Ember,

    Thank you for reminding me! As I was reading my own words that you kindly quoted, i had an aha moment. I gave myself great advice and then went on and acted totally differently. The only reason that I can give is the pressure of the gravity of the holidays.
    I was debating whether I should post this dilemma that I found myself in but, now I am so happy because you guys are helping me see what I couldn't.
    Letting go of the ego - I'm back on track.
    Thank you Ember
  2. kurt

    kurt Senior Member

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    Nielk,
    Glad that thought resonated well, that's interesting about the familial spiritual history, I know that can be a burden. My own heritage has a famous ancestor also, a religious leader, so I know exactly how that feels, you can never measure up (in your own mind). We don't have to compete with ancestors, or even our extended family. How would ancestors have fared if they had ME/CFS? I suspect some of them might have faltered were they in our shoes, who knows...I think we each leave our own mark on the world, and doing what we reasonably can is enough.

    BTW, I think Jill raised a good point that pollens or seasonal allergies (or maybe a virus) might also be involved, sometimes inflammation can be a tipping-point in creating ME/CFS symptoms, adding to the other load the body (and spirit or mind) is battling.

    Jill,
    Have you ever tried NasalCrom? That seems to help some highly sensitive people, and it is not a drug, does not alter anything in the metabolism, simply an allergen binder. I know a person with MCS who actually has decreased MCS when she takes NasalCrom during pollen season. Most major drugstore chains carry NasalCrom, although some might be out of stock during high allergy season.
    Nielk likes this.
  3. Nielk

    Nielk

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    Jill had a very good point. I don't know why I didn't see her post till this morning. The allergy season is definitely spiking now. In addition, the past few days have been extremely windy and that always affects my allergies. So, thanks for pointing that out Jill. I hope you start feeling better. I did start with Nasalcrom spray a month ago but so far it hasn't had much effect on me.
    I have an appointment this morning with my kineologist. Hopefully, he can help.
    When we feel worse, EVERYTHING seems so dark. It's like you are looking at the world with dark glasses.
    kurt
    You are very right about the carrying of a burden because of our ancestors. I usually try to be aware of it and not have it affect me. You are right - we are judged on our own merit and on our own capabilities. When I crash physically, it is hard to keep my inner self in check. It all goes back to my initial topic of suffering and spirituality. I think there is a difference though when you are in the throngs of pin - in that moment, I find my answer is different than when I come out of it a little. It's anyway hard to think about anything clearly when you are in such pain.
    Thank God, today, I feel a little better. The winds have abated. Thanks to all for your help. This help is indispensable. I don't take it for granted. I am so appreciative!:hug:
  4. Wayne

    Wayne Senior Member

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    Hi Nielk,

    I thought I would share somewhat of an axiom I've run across over the years regarding spirituality. I've seen it expressed in a number of different ways, but as I remember, the essence goes something like: "The door to greater spirituality, or God, or Spirit, or the inner worlds.... opens inwardly". The inference is that when we "push" for greater understanding, or insights, etc., we're actually pushing on the door that is meant to be opened inwardly.

    I "try" to keep this in mind as I go through my own struggles. Singing HU (as I mentioned in a previous post) has been very helpful for me in this regard. It almost always seems to relieve an inner tension, and allow me to reorient myself when necessary; which is quite often! :Retro smile:

    HUgs :hug:

    Wayne

    P.S. Kurt, excellent post. Thanks for taking the time to share your insights.
    Nielk likes this.
  5. Wayne

    Wayne Senior Member

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    Hi again Nielk,

    Your above comment reminded me of another "axiom" I've run across. It goes something like, "greater spiritual insights have a tendency to wear off". The inference being that we often have to experience any number of things a number of times for us to finally integrate it into our everyday consciousness.

    I've certainly found this to be true for myself, and so I try to remember to write out some of what I consider my most important insights. I also put a lot of post-it sticker markers in some of the books I read that highlight important reminders for myself. So when I need to make an effort to move out of a "stuck" state of consciousness, going back to these reminders can be extremely helpful.

    More HUgs... :hug::hug:

    Wayne
    Nielk likes this.
  6. Nielk

    Nielk

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    Hi Wayne,

    Thanks for all your advice and hugs!
    The chant of Hu stuck in my mind the first time you talked about it and I sometimes use it in my quest to meditate which I started to do daily for the past six weeks.
    It's also interesting about the post its and underlining things you tell me about. The healer who is helping me with my meditation and healing, lent me two books to read (by Dr. Judith Orloff) and the books are full of post its and many things underlined.It's a great way to reference back to important parts. I like your explanation about when trying too hard, it's like pushing the door shut. This is also what I'm reading in these books. I guess it's a skill that has to be learned. It certainly does not come naturally to me. I am told though that most people struggle in the beginning and that practice is the only way to get there. Thank you Wayne for your good advice and for your caring,:hug::hug::hug:
  7. Nielk

    Nielk

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    They say: "Do net let this illness define you"

    It always made sense to me. We are so much more than this cruel disease. We are caring, feeling, loving human beings. Yet, I am having a very hard time with it lately. The reason being that I feel I can't be myself when this illness puts so much limitations on me. I want to paint because I define myself as a painter but, I can't lately - I'm in too much pain. I define myself as a caring, giving person. My grandchildren are off from private school this week and I know my daughters needed me to help watch them I couldn't. I was in too much pain. I define myself as hospitable. Another two day Jewish holiday is starting tonight. I want to invite my family over - I can't. I'm in too much pain. I define myself as a compassionate person. A neighbor is in the hospital, in bad shape. I want to go visit her. I can't. I'm in too much pain. I want to write uplifting comments on this thread which i started for that purpose. I can't. I'm feeling too down. I feel like this illness is robbing me of "my self" I don't need sympathy. I know all of you are going through similar or worse things. I'm just saying, I have a hard time lately "not" having this illness define me, because I feel that there is nothing left.
  8. madietodd

    madietodd Senior Member

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    Oh, Nielk, I'm so sorry. I feel your refrain of "I'm in too much pain" and I want to know more about how you manage your pain; what kind of support you have. Because I know how awful I feel when my neck seizes up and that's absolutely nothing in your frame of reference. Will you share what you've tried and how that works?

    :hug:sending hugs:hug:
  9. Nielk

    Nielk

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    Hi Maddie,

    My pain is mainly in my head and sinuses. When I'm crashing like now, I get very severe sinus/migraine like pounding unrelenting headaches which in turn makes me over sensitive to everything. Laying down in a dark quiet room with a cold wet towel on my forhead and no motion at all (with painkillers) makes it a drop better. Otherwise, I want to jump out of my skin. the thing is that I never know how long it's going to last. It's been now one week. It could get better tomorrow or it could last another couple of weeks. I take painkillers, anti histamines, nose drops and homeopathic remedies.
  10. Nielk

    Nielk

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    maybe a picture can explain it better.
    some mornings.jpg

    or this one-self portrait when I feel this way.
    IMG_1402.jpg
  11. Nielk

    Nielk

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    Someone just posted this on my facebook page. Not someone from this forum.
    failures.jpg

    coincidence?
  12. jenbooks

    jenbooks Guest

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    Hi folks. As I thought about what is causing my flare, the first in several years, I had to place the tripping mechanism in the brazil nut milk (raw) I drank, it REALLY spiked my hormones. I felt it strongly. I googled "brazil nuts phytoestrogens" and got my answer, they are very high, and I was essentially drinking a 16 ounce bottle of just the "milk", no pulp, so it probably was the equivalent of quite a bunch of brazil nuts. Boom.

    The raspberries had caused a mild/moderate hormone response. The plant estrogens...can stimulate the general hormone response, estrogen causes mast cells to burst more strongly as opposed to progesterone calming them down, my bladder is a weak spot with probably low grade chronic inflammation anyway, that is always waiting to flare. Then my ragweed allergies, which most people around here have as there are so many fields of it, probably had also primed my system.

    I have to say, what is frustrating is that the "mistakes" are so little...that send us careening the wrong direction. Why am I so sensitive to hormones? I have no idea. Maybe I'm a genetic poor detoxer of estrogens as Rich Van has said some women are. Probably. Who knows. None of us can live in a perfect environment, or be "mistake" free. Seasonal allergies should not cause such difficulty for someone that they get lots of migraines.

    Kurt, I did try nasalcrom years ago, and I didn't really like it. I have been using a neti pot which is helpful. I don't mind the allergies, but I suspect they primed my system. Now they are improving as it's been raining a lot and it's colder, but a first frost in Georgia might not come until November.

    Right now I'm sitting in a cafe where I usually feel good, but their heating system is on, I'm getting head pressure, a slight headache, and lung "soreness". That means their hvac system is moldy and dusty. I guess regular people don't react to this stuff.

    It's very frustrating, I agree. But it is not that we are spiritually inept, or being punished, or pushed ourselves too far spiritually.
  13. madietodd

    madietodd Senior Member

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    How awful. Have you started threads about this type of headache? In case somebody has found a little-known thing to try. What does your doctor know about it? Sending virtual chocolate (which absolutely nobody is allergic to).
    Nielk likes this.
  14. Nielk

    Nielk

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  15. Ember

    Ember Senior Member

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    Whoever can no longer be Nielk just keeps on giving! Thanks for reminding us to forgive ourselves.
  16. madietodd

    madietodd Senior Member

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    Nielk, how are you doing today?
  17. Nielk

    Nielk

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    Hope is like peace. It is not a gift from God. It is a gift only we can give another.
    -Elie Wiesel


    I feel like this is what we are giving one to another on this forum! Seriously, I don't know what I would do if I didn't have all this support here. It is a life saver for me. This is the only place I can come to where people REALLY understand what I'm going through. When I'm down or crashing, this is the place I come to for understanding and support from my friends here.

    I have been posting on the thread about the upcoming cfsac meeting in Washington DC in November and how much I would like to attend but, am afraid that it might be too much for me. Two people wrote in that I shouldn't take a chance with my health. I was so moved. They are more concerned about my health than about what I could possibly be accomplishing by going. That's really caring. That's looking out for each other! I am very touched.

    There is a nobility of character that I see here which is unusual. I believe that the difficulties that we endure, make us more sensitive to others who are suffering. There is a connection here that's on a different level. It's most extraordinary and I am very thankful for this - for all my friends. :hug:
    jenbooks likes this.
  18. Mary Poppins

    Mary Poppins PJ Princess

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    Nielk, what a lovely post :hug:
  19. Nielk

    Nielk

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    :hug::hug::hug::hug::hug:;)
  20. allyann

    allyann Senior Member

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    :hug::hug::hug::hug::hug: to all

    I have been looking at the question of this disease defining me again in the last couple of days. I was reminded by my guides that my specialist said 'pushing yourself when needed won't kill you'. Sometimes I wonder if it will....

    I think though I have learnt to define what is really important to me vs what I think I should be doing. If I feel guilt over not doing it than it is most likely something I should not do.

    It is like my niece having her 18th birthday party on the 23rd December. Her birthday is actually a month earlier but right in the middle of her exams. Being three days before Xmas, and two weeks before giving birth I feel bad about saying that I don't think I'll be up for it. But in reality she will be having such a good time with her friends she would hardly miss me. I will arrange some special time with her one on one instead as I will be able to handle it better.

    I think it is hard not to let it define us as we are so limited in what we can do
    madietodd likes this.

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