Navigating adolescent CFS

Cycling! January 5, 2013

Filed under: Uncategorized — parentingcfs @ 7:10 am

The view from the upward side of the roller coaster is so nice. I love it here. Can I stay? Please? Please? Although getting to the top and staying there would be even better!

As you can guess things are still going well here! Summer holiday time and all that so it is the time when things are most likely to be good….because of the weather and relaxed environment. Actually I don’t really know exactly why..just guessing!  However it’s far from guaranteed that our girl can do more at this time, especially after the terrible winter, so we are revelling in this (hopefully not temporary) improvement. (Power of positive thought and all that..from me not the gorgeous girl who is nearly always positive)

The big news is….drum roll please….that after the outdoor Christmas Day we haven’t really looked back. We’ve had a couple of necessary quiet days but she rallies quickly and has left the house more than she has in months.

And….wait for it…she rode a bicycle for two days when we were visiting our favourite holiday island!!!!!!! Like…. AWESOME!!!!! The second day was ridiculously hot and we tried to persuade her to settle for a short ride but no, she wanted to go to a different beach 5kms away, up hills. By the time we got there she was not in great shape. The whole two days we found frequent reasons to stop and insisted on rehydration but this ride really was too much. Anyhow, we lay in the calm, cool shallow sea for an hour and pondered our options. We were a little stuck. 39 degrees celsius and rental bikes. In the end our brave girl decided she could probably do it with her iPod music in her ears… And she did do it, luckily mostly downhill on the way back so lots of coasting (or gliding as she renamed it!)

The next day was a quiet one but no massive least from my point of view. I’m sure it was really important that we prioritised fluid and food the whole time, and had the BP medication and the new herb regime. Without any one of those I suspect it would not have happened. 

Anyhow, here we are 5 days later. Yesterday was a quiet day in, this morning we all went to see some old friends for a couple of hours. It is hot again today and our gorgeous girl has just decided she’ll skip the movie we’re off to see with her beloved big cousins shortly.  So I must rein in my enthusiasm and remember it’s all baby steps. Baby steps forward are just so welcome, I can’t tell you.

Shout out to our lovely friends the Barnies who hosted us this morning. Our girl seems glad she came and we all loved the catch up. Happy gardening and see you at the cricket! x


2 Responses to “Cycling!”

  1. Sue Jackson Says:

    Oh, wow, that is all such great news!! Biking 5 km – that is truly amazing! You know what else helps, besides hydration? You mentioned cooling off in the water – cool water is really great for OI – it supports our vascular system, helping to better pump blood all over and the cool temp causes the veins to constrict. Just like hot water is really bad for OI.

    So thrilled to hear she is doing well and enjoying her summer break!!


    Live with CFS

    • parentingcfs Says:

      Oh yes Sue I know. I’ve tried to get her in the water as much as possible these holidays. Increased reports of shark sightings over here are not helping but have managed a few times!It helps her so much..whether river or ocean. She seems to have backslid a little this week but grateful for the things she has managed to do. : )

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