A quick update before we head off for our next appointment with the exercise physiologist.
Our girl’s been crashed for a while although not too badly from what I can tell…..
She’s managed school except for Monday just gone, after she did a little too much on Sunday I suspect. She spent 2 hours with her little cousins and a friend in the morning, then went to a festival for an hour in the afternoon, then a birthday party for an hour. I suggested she didn’t go to the festival which only served to encourage her to add a new phrase to the list of comments she doesn’t like, “I think you should stay home and rest.” ! (It’s irrelevant that I was probably right!)
Not having as much energy as she would like to spend time with her 3 year old and 1 year old cousins who, luckily for us, live just a couple of blocks away is one of the impacts of this illness our girl feels most greatly so I guess Sunday fits into the category of tiring but worth it and sometimes it just has to be that way.
Tuesday morning I made the prospect of school more exciting by acceding to a request to purchase a DVD of Pirates of the Caribbean 1! She has just discovered this movie and is watching it (and the sequels) every time she gets tv time at the moment!
We have made a concerted attempt to make increased salt and fluids as attractive as possible by stacking the pantry with pretzels, chips and soda water. (She is not an overeater so this is not as dangerous as it sounds!) There is actually juice in our fridge and often more than one type! We also explained very carefully to her why she needs to stay hydrated and consume more salt and we seem to be having more success. No clear signs that it is making her feel better yet. We’ll give it another 3 weeks before we start pushing for Florinef which seems to work for some adolescent CFS sufferers.(Right now I’ve just unplugged her from the tv and unwisely reminded her to drink at the same time – why do I fall into that trap??!! Hopefully she’ll return to a state of equilibrium before we leave the house…)
As for the exercise she has just done 12 minutes (gently) on the bicycle for the first time since Saturday. She feels her crash comes from school attendance and not the exercise which is interesting…and confusing as always. We shall see how this next week goes….
Thanks to all you lovely people who are still / have started reading about our journey. I treasure all your support and love the comments x