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Resources for kids of parents with ME

Discussion in 'Relationships and coping' started by Fainbrog, Nov 12, 2021.

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  1. Fainbrog

    Fainbrog Senior Member (Voting Rights)

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    Hi all, not sure if this is the best place for this post..

    Our 8 year old daughter is currently really struggling with the fact that I am ill, which is utterly heartbreaking. I was wondering if anyone had come across any resources for kids to help them come to terms with a parent who is ill?

    I think it’s just every now and again that it hits her how much I can’t do (same for the wife and our eldest who is 13 - but they are better able to express how they feel and rationalise it all to an extent), but youngest is really struggling with some of the adjustments that we have had to make - such as my picking her up from school a bit late on a Friday as I can’t handle the walking that is required..

    Hoping the experience of some folks here will be able to help. I’ve only been ill for 2 years, so it’s still relatively new for us all.

    Thanks.
     
    Fainbrog, Nov 12, 2021
    #1
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  2. Hutan

    Hutan Moderator Staff Member

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    What a good question. I found this booklet for families with MS, but I'm not aware of anything similar for ME/CFS. It covers some useful ideas.
    https://nmsscdn.azureedge.net/Natio...eone-You-Know-has-MS_-A-Book-for-Families.pdf

    Screen Shot 2021-11-13 at 12.34.42 PM.png
    Perhaps we need someone to make a book.

    I remember reading a really lovely article written by a young woman whose father has ME/CFS. She acknowledged the difficulties but also talked about how she had been able to spend more time with her Dad than she might have otherwise (who had been a busy doctor when well), and had learned a lot because of it. (Lots of healthy Dads do not pick up their children from school, a bit late or otherwise.) That young woman reflected that she had learned good things because she had a parent with ME/CFS, including independence and flexibility.
     
    Last edited: Nov 12, 2021
    Hutan, Nov 12, 2021
    #2
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  3. Andy

    Andy Committee Member

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    Andy, Nov 12, 2021
    #3
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  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    From memory there is a book written by a parent with ME for kids ( I will try and find a link over next couple of days )
     
    Amw66, Nov 13, 2021
    #4
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  5. Ravn

    Ravn Senior Member (Voting Rights)

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    My memory is telling me the same thing but I can't find the one I vaguely recall. However, searching for it I came across this:

    Can I tell you about ME/Chronic Fatigue Syndrome?: A guide for friends, family and professionals by J. Rayner
     
    Ravn, Nov 13, 2021
    #5
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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I've found this one


    What Is M.E? A Guide For Children: Explaining The Illness In A Way Children Can Understand Paperback – Large Print, 18 Feb. 2015
    by Hayley Green (Author)

    one review
     
    Sly Saint, Nov 13, 2021
    #6
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  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    That's the one !
    Thanks @Ravn
     
    Amw66, Nov 13, 2021
    #7
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  8. Ravn

    Ravn Senior Member (Voting Rights)

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    And I was actually looking for the one @Sly Saint posted :rofl: Well, between us all we got there.
     
    Ravn, Nov 14, 2021
    #8
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  9. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    I haven’t read this one myself, but I have seen it mentioned positively.

    How Many Marbles Do YOU Have?: Helping Children Understand The limitations of Those With Chronic Fatigue Syndrome and Fibromyalgia
     
    Wilhelmina Jenkins, Nov 14, 2021
    #9
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  10. Tia

    Tia Senior Member (Voting Rights)

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    I've heard this one is good
     
    Tia, Nov 15, 2021
    #10
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: Nov 23, 2021
    Sly Saint, Nov 22, 2021
    #11
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