Action for M.E. often hears from parents who have found ways to cope with their M.E. at the same time as raising children.
Here’s some of the things mums and dads have told us:
“Knowing others who have M.E. and who are in similar situations helps. I met three of my closest friends via an M.E. forum several years ago and without them I would have been a bit lost. We all now have children too so being able to offload to people who understand is a massive help.” (Alison)
“My tip to any new or pregnant mum would be to accept any help available in the first months, be it someone to put the washer on, make you a meal or just watch over baby while someone runs you that bath – any way you can conserve energy, really. I think it’s also important to remember your little one won’t remember what you can’t do with them. I used to lay my son beside me on the bed and just look at him. When my M.E. was at its worst, I would put toys and books round us on the bed.” (Joanne)
“I always feel like I haven’t been a super mummy. When my daughter wants to do energetic things and I just don’t have the energy, her dad reminds me that she is resilient and that as long as I am having that one-to-one time with her then that’s all that matters. It’s so nice to hear that – and he is right.” (Jenny)
Joanne told us:
“My children were four and nine years old when I was diagnosed. They have been great. The best way of pacing I found, especially with my youngest, was to play games that were easiest for me. For example, I would suggest a puzzle or watching a film, so I was playing with them but still resting. Kids are more resilient than you think and mine now understand what I can and can't do.
“We put a lot of pressure on ourselves as mums even when we’re not ill, so it makes it harder when there are so many restrictions. My son now asks me to play games that just involve me watching what he is doing, or he gets me a cushion to sit on the floor and we play cards. I try and do more energetic things when I am able but limit how long I do them for, then at least I have joined in with him."
“Don’t feel guilty: your children love you and sometimes being there to observe is enough.”