Navigating adolescent CFS

Holidaying in the heat with CFIDS September 6, 2011

Filed under: CFS Symptoms — parentingcfs @ 9:15 pm
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adolescent chronic fatigue syndrome Hello everyone!

Sorry about my lengthy absence. We’ve been on holiday again! Once again this had been booked before we really understood our girl’s illness (hmmm,  I still don’t understand it but I guess I understand a little more!?) Anyhow Andrew and our son were off to NZ to ski and a girlfriend and I thought we should use the opportunity to travel with our daughters. We were thinking of the NSW coast or something similar but then there were all these cheap deals to lots of places and well….. we went to Japan!!

It was very exciting as it was my first trip back since I lived there for a year, 14 years ago, and my first chance to show the country to my girl. Thankfully my Japanese was still good enough to get by and it was lovely to be able to use it again.The Japanese were extraordinarily welcoming as always. They are struggling economically and spiritually after the terrible events earlier this year and I urge people to visit this beautiful country. We went to Kyoto, far away from the radiation and electricity supply issues and it was a great place for a family holiday.

As for the CFIDS, well it interfered with our experience but only up to a certain point. I’d decided before we went that anything our girl said she didn’t want to do, or any time she said she’d had enough, I’d pull the pin and our travelling companions knew this and were supportive. It was very hot and HUMID so keeping hydrated was even more of a priority (always is cos of the Orthostatic Intolerance). Luckily, as those of you who know the country will remember, in Japan you are rarely more than 100 metres from a drink vending machine. So hydration was manageable. At one point we tried a little walk and had to pull out but as always a taxi went past a minute later and we jumped in. Kyoto is actually a beaut place to travel with CFIDS as taxis are plentiful and impeccably clean and their drivers kind and friendly. But most importantly of all, they don’t mind driving you only a short distance as there is a minimum fare of 640 yen. How nice is that when you come from country where drivers are put out if you aren’t going to the airport???

I know we’re very lucky as our girl can still manage outings most of the time, provided they are ‘managed’. It’s a lot more than many people with this terribly confusing condition. My heart goes out to those of you to whom what our girl was able to experience this last week sounds like a dream come true. We got to a temple or a department store most days and ate out most days too. Much more than I was hoping for.

We got back yesterday and our girl slept 14 hours last night. For once I didn’t wake her in the morning and when she did get up she was reluctant to go to school. I asked her what exactly was so tiring about going to school. She said, “I have to think.” So we had a big chat about how she didn’t have to always strive – just being at school for the fun stuff is enough at the moment. ‘Less doing, more being.’ I know I’ve written before about how she’s struggling with her identity at school as she feels she isn’t performing as she used to. I’m hoping today’s discussion will help…but we all know how words are just words and it’s hard to change the habits of a lifetime ….even if that lifetime is only 12 years!

So, in summary, I’m really thrilled that she was able to enjoy the holiday. She definitely went her peculiar shade of white (indicates very tired) by Day 4 but hasn’t really, really crashed. That is AWESOME! Of course I should know by now not to get my hopes up, but surely this is a very positive thing?

Hope you’ve had a positive time while I’ve been away and thanks to everyone who checked in…..



2 Responses to “Holidaying in the heat with CFIDS”

  1. Looking forward to seeing some more photos of Japan. I hope she has a great day at school!

  2. Karina Says:

    Sounds wonderful and so good for both of you to have positive memories of this time in your lives! And yes all our children should do more being and less acting…. so much on them all….Loved the picture – looks so peaceful…. I remember when you were in Japan – was when we moved to Vic and went and visited your husband missing you so much! Chin up and thinking of you

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