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 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.
Do Tymes Trust offer anything, or is their focus solely on children with ME? I'm guessing it is. In case it's of use, Action for ME offer a Young People's forum, https://www.actionforme.org.uk/get-support-now/our-forums/get-connected/, although I would guess again the focus is on young people with ME.
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 )
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
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
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
thread https://www.s4me.info/threads/telfo...children-understand-adult-illness-2019.12502/ eta: see tag 'book' for other threads on books.