Resources for kids of parents with ME

Fainbrog

Fainbrog

Senior Member (Voting Rights)
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.
 
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

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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.
 
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Amw66 said:
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 )
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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
Amazon" said:
Meet Mollie – a woman with an illness called ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome), and her family, Mike, Ellie and Eric. Mollie and her family help readers to understand what ME/CFS is, what it is like to have it and how it can affect their family life. Mollie can't always do things that other mums do because of her illness, which can sometimes be frustrating, but they share strategies that help them all to cope. The family also explain how ME/CFS can affect different people in different ways.

This illustrated book is an ideal introduction to this often misunderstood condition. It shows family, friends and anyone who knows someone with the condition how they can support someone with ME/CFS, and their family.
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Fainbrog said:
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.
Click to expand...
I've found this one
Amazon product ASIN 1508510369
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
5.0 out of 5 stars Wonderful, understanding book that will be very helpful
Reviewed in the United Kingdom on 14 August 2019
Verified Purchase
I've been searching for something to help my 3yo understand why mummy can't do a lot, and needs lots of rest and help.

This is a wonderful book and explains the disability simply but succinctly. It is so kind and thoughtful that it made me cry, it's rare to find anything this understanding about ME.

My little one is a bit young yet, but I'm very glad I've got it ready. I think I'll be trying to persuade friends and family to read it to her too, as it's hard to understand ME.
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