Chronic fatigue/me

[Sezza123123]

My daughter has just been diagnosed with chronic fatigue syndrome/me she is 15 she is in pain most days and exhausted she has reduced her timetable at school but still finds it really hard each day. I have agreed to hone educate her and do functional skills which should make it easier but she has a couple of friends and she is scared of losing them if she leaves school, I have said she can invite them to ours and go out with them etc but she said they won't do that as she's left school has anyone else had teenagers with cfs or in similar situations and how did you go with it? Thanks

My son was diagnosed at 15 with chronic pain syndrome & cfs (he's 17 now)
I wont lie, he lost all his friends. Whilst they were beginning to spread their wings & experience things, my boy was bed bound or in a wheelchair.
How open would she be to groups for young people with the same condition? My son wasnt but he did find a lot of support online. Unless you have it, you can never really 'get it' but interacting with other young people with the same/similar conditions has been vital for him.
He did manage to sit his GSCE's but they weren't great. We are now doing functional skills from home.

Thank you it's so hard for them isn't it 😔 I'm not sure she would be open to groups at first she's not very good at socializing she finds it really hard especially with people her own age. It's a really difficult decision but she's in pain so much of the time I feel she is going to miss out on a lot of things as well.

It's awful. & not being able to 'fix' it is soul crushing.

It's ok to grieve as a mum too.

I'm not ashamed to say that I myself am having counselling to cope. The future I imagined for him looks a lot different now.
One thing I have learned is to give him his choices (no, I dont always agree) but allowing him to make decisions gives him some control over his life. Also, they have to learn the hard way! So many times I have stepped in or tried to when I know that a choice he's making is going to have consequences. Micro managing is instinctive but not helpful.
As harsh as it sounds, she WILL miss out on things, she will not have the experiences you'd imagined. It's ok to grieve that. But the alternative doesn't have to be bleak.
My son is so strong, so resilient & I am beyond proud of how he faces everyday in pain & carries on. It's the things I let him figure out for himself thats important.
I know its very unmumsnetty but sending you massive hugs!