I realise I have failed to mention the first resource that really helped me when our girl was finally given the CFIDS diagnosis…..2 and a half months ago now. It was Bruce Campbell’s Recovery from CFS document.
I revisited this document again today and am very glad I did. Apart from the hopefulness of his story, and the strategies contained within, the document also links through to some other recovery or improvement stories which I sorely needed to read. In the last few weeks I have met a few people who have known of an adolescent with chronic fatigue who is still living with it 10 or more years later. Interestingly each of these people seem to think their friend is a special case because they are still sick….and you can imagine where I go with this kind of anecdotal evidence….I want to know where all the kids who HAVE recovered are and why aren’t people telling me about them?!
I have been fortunate enough to hear from the sister of one of my best friends from high school, whose daughter was diagnosed with CFIDS at 8 and recovered 9 months later through the use of Reverse Therapy. This mother has been extraordinarily generous with her time, replying to all my questions and giving me a lovely solid example that a quick recovery is not impossible. Our girl is doing something similar to Reverse Therapy as I understand it. I call it joy therapy where we incorporate fun stuff into her days so that the focus shifts to what she can do/have, rather that what she can’t. Some of you may remember me going on about a book I read 2 years ago called The Brain That Changes Itself by Dr Norman Doidge. I was fascinated at the time by the new developments in neuroscience…called neuroplasticity in the book…and how we could use them to help children with learning difficulties. The book essentially recorded and explained some pretty amazing stories of how neural pathways can be retrained so that people can recover from strokes and other medical difficulties as well as covering some of the educational possibilities. It also talked about retraining the brain so that chronic pain isn’t felt. Amazing concept huh? Unfortunately it is still very early days with this stuff but the potential is massive and it’s clear the learnings in neuroscience are going to impact more and more on our lives…improving them…over the next decades. I am guessing, but I could be completely wrong, that the reason Reverse Therapy works for some people with CFS is because the brain is retrained in some way.
If you haven’t read the book, I highly recommend it. Fascinating stuff.
Our girl has also started a course of prolonged release melatonin – the hormone that occurs when we sleep – on the recommendation of our paediatrician to help her get to sleep. Last night she was asleep by 10 for the first time in 8 months. It was such a relief to know she wasn’t just lying there feeling miserable – and trying to help her with reassurance, special teas, heat packs etc. Her symptoms are often worse at night, I assume because her ‘normal person tiredness’ is there as well as the CFIDS fatigue? Who knows really? Only one test has been done on using melatonin with children as far as I can find out but it’s being used on critically ill children I know and many doctors seem to be prescribing it for CFS adolescents so let’s hope there’s no long term effects!
School musical 3 nights next week. Our girl helped write it so is supposed to go every night – performing 2 nights and bowing at the end each night. She is determined not miss the fun…
Meanwhile we have our OI test tomorrow…… and I’m hoping it won’t make her crash just in time for the musical!
What’s happening in your world?