Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Discussion in 'Lifestyle Management' started by Nielk, Jul 13, 2011.

  1. Nielk

    Nielk

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    I have been in a crash for a long time now and lately I have been feeling very sorry for myself.
    I have been thinking how UNFAIR my life has been.
    Too many tragedies to mention in my past history.

    When I first fell ill which was subsequently diagnosed as CFS, I had no idea that it would take over my life for nine years.
    I have been complaining that I am getting worse as time passes and I have become more and more limited as to what I can do.
    I have been complaining how hard it is to watch everyone else go on with their life while all I can do is lay in bed and almost feel lifeless.
    I have been complaining about being misunderstood by the "normal" society and by some medical doctors.
    I have been crying a lot lately....

    Monday, a little angel by the name of Leiby Kletzky - a 9 year old Hassidic boy from Brooklyn, NY was missing. He was supposed to walk home by himself from the local camp. His mother made up to meet him half way. He never showed up. There has been a frantic investigation and thousands looking for him. The whole Jewish community was saying Psalms for his sake - to find him safe and sound.

    I woke up this morning to the horrific news of the finding of his dismembered body. May his name be sanctified.

    They arrested a man who lived and worked in Brooklyn - seemingly normal.

    What kind of world do we live in?

    I feel ashamed of all my complaints. How could I be so selfish to complain about my state?
    I can't imagine what the family of Leiby Kletzky is going through. That is unbearable suffering!!!!! May God comfort their souls.

    I have grandsons of the same age.
    It puts things into perspective. I have been too involved in my own misery. It's not a productive place to be in.

    There are things i can do, I realize now.
    I can sit up in a rocking chair instead of bed. Mentally, you feel less sick when you are not in bed.
    I can listen to inspiring music.
    i can meditate.
    I can pray.
    I can read.
    I can look and enjoy looking at art objects.
    I can call my aunt who is sickly and cheer up her day.

    I have to concentrate on what I can do, instead of feeling bad about my limitations.
    I actually got that advice from a friend CFS sufferer yesterday.
    I have to have good thoughts. (Husband's advice)

    Why did it take such a tragedy to shake me into sense?
    Oh How i wish this tragedy away!

    Nielk
     
  2. maddietod

    maddietod Senior Member

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    My heart cracked open, overfilled with your courage, and beauty, and love, and compassion.

    Thank you.
     
  3. Nielk

    Nielk

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    I don't deserve praise...but,
    thank you!
     
  4. ahimsa

    ahimsa Sick since 1990

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    NielK,

    What a sad story but what a blessing that you were able to take something positive from it.

    I wish you the ability to hold on to a positive attitude and gain some comfort from it. It is very hard to feel grateful for small things when so much has been taken from us. I often say that trying to keep up my spirits while dealing with this illness (I've been sick since 1990) is often worse than dealing with the physical and cognitive symptoms. (and those symptoms are no small thing.... )

    Sending you many :hug: HUGS :hug:

    There's a saying about taking things one day at a time but that's way too ambitious for me. My goal is closer to one minute at a time. ;)
     
  5. Nielk

    Nielk

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    In the spirit of counting our blessings, I would like to use this thread as a place for people to share whatever blessings they have.

    I am the biggest culprit in complaining about all the difficulties I have encountered in life, especially since I got sick with ME.

    It is very easy to fall into the role of victim and outlook of unfairness that we are facing. We have every right to those feelings. They are certainly valid. I am not asking of anyone, including myself to stop communicating about our dismal plight. It is healthy to get it out of our system, especially on this forum where we understand each other.

    I know that since I have been ill for a while - being so isolated, in pain ant not having much to look forward to, it has been very hard to even notice the goodness in life.

    Lately though, I have started to notice and appreciate the little positive things that are happening in my life.
    I should give credit here to Toni Bernhard and her book "How to Be Sick". The book helped open my mind to a different way of looking at life and to the sensitivity of appreciation. (If you haven't read her book yet, I highly recommend it)

    I feel that because the majority of my life now includes suffering, if I open my eyes to it, any positive, beautiful, heart warming event that I experience, really sticks out like a rose in a bush of thorns.

    It's that one rose that I would like to concentrate on.

    No matter how small or seemingly trivial it might be, I find it constructive to seek out that one rose every day and write about it.

    My wish is that others here will use this thread too, in order to write about the rose that they notice in their life. No matter how small or fleeting, if we really search, we can find it.

    Using this particular thread is doubly meaningful because it would be in the light of commemoration of the soul the little innocent boy, Leiby Kletzky who was so brutally murdered.

    I'll start with the first Rose.

    Two weeks ago, my husband took off a few days from work and we took a mini vacation to Vermont. (if you live there - count your blessings!)I am very limited in walking or standing but, sitting for a while is fine.

    Every day, my husband drove me on scenic tours around the countryside. I am a very visual person. The beauty of the nature there brought tears to my eyes! Just seeing the mountains, lakes, farmland etc.. was so relaxing. Even through my pain, I felt so lucky that #1 I have a husband who does this for me and is so happy to see me smile. (it doesn't happen often. #2- there is so much beauty in nature around us and I was able to enjoy that even through my pain.

    Who else has a rose to share?
     
  6. Nielk

    Nielk

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  7. cgstar4

    cgstar4

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  8. Tristen

    Tristen Senior Member

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    Great thread NeilK. I guess it was my escape from the abyss of severe me/cfs that gave me a perspective of gratitude. I'm grateful to tears over escaping that dark pit. I feel so bad for people still there (and know that I could return if not careful).

    Today I have some things that I could only pray for a few years ago. I hoped and prayed:

    That I would survive just long enough to see my girls grow a little older. I did.
    That I could recover just enough to spend time with those most important in my life. I did.
    That I could recover enough cognitive ability to once again be able to choose my perspective. I did

    I have disability and health insurance without which, I would be screwed
    I have family property that provides me with a home and spring water. I have all the food I need.
    I have transportation.
    I have family that helps with my medical needs.
    I have meaning in my life without which, there is no life.
    I now get to participate in the things that give my life meaning.
    I can walk in trees
    I'm still sick, but know how much worse it can be.

    Grateful for such simple things now.
     
  9. Nielk

    Nielk

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    Tristen,

    Thank you so much for sharing your progress!
    It gives the rest of us who are not there yet hope that there could be a better future for us.
    It's great that you are thankful and appreciate what you do have.
    I wish you continued improvement and sharing of more great news.
    Nielk
     
  10. taniaaust1

    taniaaust1

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    Sth Australia
  11. maddietod

    maddietod Senior Member

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    Tania - thanks for the pictures. I have a smile plastered on my face!
     
  12. Nielk

    Nielk

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    Tania - How precious! those children are beautiful! what a blessing.
    Thanks so much for sharing. I'm sure your daughter and these cute grandchildren give you strength of spirit.
    They are precious.
     
  13. Graham

    Graham Senior Moment

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    This isn't quite the same thing, Nielk, but when those of you who are severely affected write as you do, you are doing a tremendous amount of good to those of us who are not so badly affected and yet take for granted the things that we can do. You may think you are just letting off steam, but actually you are making all of us re-evaluate our own attitudes. I am able to do so much more, and know just how lucky I am.

    My son went down with ME when he was 8, and now, aged 30, can't ever remember feeling ill. I went down with it 10 years later, and just thinking of what he has missed puts things into perspective for me. He is my hero when I start to feel sorry for myself.
     
  14. Nielk

    Nielk

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    Thanks Graham for sharing your heart warming thoughts. It's great news about your son! It gives hope to everyone to hear about recoveries like these. As a parent myself, I understand very well how you feel. You know what they say about a parent.
    While we try to teach our children all about life, our children teach us what life is all about.
     
  15. Graham

    Graham Senior Moment

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    I'm an utter idiot! Put it down to brainfog. I meant that he can't ever remember feeling well. That's why he is my hero - despite all that, he still looks out for others, and has a very caring and balanced outlook on life.
     
  16. Nielk

    Nielk

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    It's amazing how one word switched in a sentence, changes the whole meaning. Maybe it was a slip of the tongue for wishful thinking. Your son is a hero. To get sick at such a young age and still be the inspirational person he is, is amazing. I can understand why you are so proud of him. I think the meaning of my "parent" quote still stands.

    Thanks for sharing.
    Nielk
     

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