Navigating adolescent CFS

Physiotherapy Part 3 September 6, 2012

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 5:41 am
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Bit of a grim start to the day with our girl attempting to go to school but not quite getting there.

She is in quite a lot of pain with her right knee which is a new thing and almost certainly the result of the clinical pilates she’s been doing. However it doesn’t fill me with the usual worried ache in my stomach. That’s because I call the physiotherapist and they listen and suggest tweaking the routine in ways that make sense to us and we feel someone who knows what they are doing is really listening to our girl’s body. Such a relief.

So, still no school, but today and yesterday many of her symptoms have been absent or less troublesome…just the knee throwing a big spanner in the works right now!

Off to RCH clinic tomorrow.

I am exploring meditation possibilities at the moment too, so do write in if you have any suggestions please!

Hope life is going well in your corner of the universe.




The joys to be found in poetry September 4, 2012

Filed under: General — parentingcfs @ 9:02 am
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I read this poem recently and have given a copy to my daughter. I feel it’s a beautiful reminder that we don’t always need to be going somewhere to be making the most of life. This post is for all the kids I know of doing it tough as life takes a path a little different to what they had expected…and to their parents. May you have days when you are well enough to enjoy the stillness. xxx



What is this life if, full of care,
We have no time to stand and stare.

No time to stand beneath the boughs
And stare as long as sheep or cows.

No time to see, when woods we pass,
Where squirrels hide their nuts in grass.

No time to see, in broad daylight,
Streams full of stars, like skies at night.

No time to turn at Beauty’s glance,
And watch her feet, how they can dance.

No time to wait till her mouth can
Enrich that smile her eyes began.

A poor life this is if, full of care,
We have no time to stand and stare.


William Henry Davies


Neuroscience and education conference September 1, 2012

Filed under: Uncategorized — parentingcfs @ 1:47 am

I’ve just spent two days at a conference on neuroscience and education!

It’s an area of great interest to me for many reasons and it’s the first time in over a year that I have done something professionally for myself .

I loved every minute. I even got to be the one wired up to check my brain’s response to stress!

And believe me I was listening out for every clue I could get about helping our ME/CFS kids too. Some of the presenters were really cutting edge researchers in the area of neuroscience. One of them taught us exercises for overriding the ANS (autonomic nervous system) so that it (momentarily?) resets the homeostasis in the body.

As you can imagine I was very motivated to learn about this as the ANS is so completely out of whack in ME/CFS.

I tried the first part with my daughter last night and it made her dizzy (she was in bed at the time so no falling)…I found that interesting because it obviously impacted in some way (my poor guinea pig girl!) The leading neuropsychologist whose work was most relevant also has a private practise so I’m going to make an appointment to see him myself and ‘pick his brain’ for want of a better phrase (and cos I couldn’t resist!) I don’t want to subject my girl to yet another appointment until I’ve really talked it through. As you know I’m always looking for ‘fixes’

There is more and more hard evidence coming through (now that we have more advanced brain imaging equipment) that we are at our healthiest when living in the moment. And the power of mindfulness and meditation are inarguable now. The science is in, it’s just going to take a while to get the word out so that it’s adopted into mainstream medicine.

I’m going to go right out there and hypothetise that (one of) the reasons this illness is seen predominantly amongst ‘driven’ people is that they have the wonderful brains that allow them to relive experiences and learn from them…and anticipate how to be more successful next time…and by doing this they are more often putting their bodies into a state of high alert (because of the chemicals the brain releases at the time) that makes them vulnerable to whatever the other trigger(s) are with this illness.

And that this would be why most people get immense benefit from employing mindfulness/meditation strategies?

Now I’m just putting this thought out there as a work in progress. I am by NO means arguing that this is not a physical illness, just pondering aloud that this may explain the demographic affected.

Any thoughts?