How do Children Deal with Mum's ME?

Discussion in 'Fibromyalgia Main Forum' started by Tiffin, Feb 26, 2003.

  1. Tiffin

    Tiffin New Member

    Hi everyone,

    I have had ME since my little boy was born almost 8 years ago. (I got rubella vaccine which bacfired 3 days after hewas born).

    I feel that his life has been very much affected by me not being well for all his life - except for the odd spell when I can do things with him. He is a terrible worrier, when it comes to me and gets all sorts of nervous habits if I'm not well. I can't fool him at all as he can read me like a book.

    Because of the ME, we weren't able to have other children so being an only child means that I am even more important to hime than I might be. My husband is great but for my son I am 'everything'.

    Has anyone any tips on how to help a child through this. How much should one tell, what do you do if you can't have his friends in because of exhuastion etc. He won't go places without me when I'm bad as he seems to be afraid to leave me.

    All replies really welcome as he means so much to me and I want him to have as normal a life a possible.

  2. Hippo

    Hippo New Member

    I can't do much with my kids, either, and I got mentors for them. It makes a world of difference. They take the kids places I can't go, and then I get a rest while they are out.

  3. layinglow

    layinglow New Member

    Hi Tiffin,
    I think children are best, if thoroughly informed. I have a wide age range of children (I have four). All are knowledgeable, on the aspects of CFS/ME. I think this helps them to understand, the symptoms you are experiencing, why it limits you at times, and most importantly, that although it is a chronic disease, it is not fatal, and mom will be there for them.
    Certainly, I think it's important to make this information, understandable in terms that the child's age necessitates.

    Along with being informed, comes security, a sense of trust (you are giving them the whole story), and compassion can be learned. You did not mention your child's age, but I think this is common to all children. The basic need for love, and security is there no matter the age. A couple of my children, try to take on the role as caregiver, and mender for me. I always tell them, I am so thankful for there concern and care. I appreciate the tasks, that they do, so that I am not taxed. I do want to make sure they partake in the fun things in life, and just like my spouse, they need time away from these disorders. I think the mentor mentioned in the above post is an excellent idea. If the child bucks the idea, of leaving you, wanting to cling, explain that Mum needs some alone time, to help her recoup and rest. That it would also do her good, to see her child doing fun activities, and would help her feel better. Insist on a full accounting at their return, delighting in all the fun things she or he did, showing that in fact, it has elevated your spirits. This will take some time. I have found it to work with my own children, though.
    Best wishes, LL