Navigating adolescent CFS

‘School’s so hard Mum’ – the neurological impact of CFIDS August 15, 2011

Filed under: CFS Diagnosis,CFS Resources,CFS Symptoms — parentingcfs @ 2:25 pm
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Our girl has been a voracious reader since she first put vowels and consonants together. She read quickly…all the Harry Potters in Term 2 of Year 2…and mysteriously sometimes 5 books seemed to be on the go at once…something I’ve never been into. So you can imagine how much it hurts to hear her say that reading isn’t as much fun as it used to be and..horror… sometimes she has to read the same passage over and over. And that it is just so hard to concentrate in class.

Last night’s bedtime conversation was me reassuring her that everyone understands that she’s sick and it’s okay not to be able to finish work to her usual standard…just being at school is enough. Of course, it doesn’t matter what I say, she is the one having to deal with the frustration of having a brain that doesn’t work as it used to. Her whole school persona seems to be challenged by how she perceives her work in class….and she ain’t happy with the changes. What can I do but reassure?

The reassurance wasn’t enough to get her to school today but she was also a bit sniffly and her brother was staying home with a cold…. Sigh. Maybe tomorrow…. Actually, there is so much nasty stuff going around the school at the moment (including whooping cough that even immunised children are having to take antibiotics for) that it’s probably a good thing she’s barely been there in the last fortnight. Aah one looks for the upside!

The Young Action Online document “Guidelines for Schools” that comes out of the UK..thanks to my friend, April, for alerting me to the existence of this… states that ‘an adequate period of sick leave is essential at the the onset of this illness’. Shame I have no idea what an adequate period is…but I think we’re having it now! Then again maybe this is still the effect of the Uluru experience 2 weeks ago. Who knows?!

The good news is we were on a waiting list for the orthostatic intolerance test appointment and the surgery rang this morning to say we could come in this Friday rather than waiting to Sept 16th. Yay. I think.



2 Responses to “‘School’s so hard Mum’ – the neurological impact of CFIDS”

  1. Fleur Says:

    Good luck with the appointment – thinking of you all!

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