Our girl went happily to see the Exercise Physiologist last Thursday – our second visit. It sure helps that he is a funny guy who entertains her whilst asking all the right questions. As I’ve mentioned before activity is so much easier for her if it’s enjoyable.
During the hour long appointment the EP reviewed how the last week had been for her…answer: unusual due to Japan trip but still gave him some idea I guess… both verbally and by looking at the schedule she’d filled in and coloured. Yellow for really tough, blue for moderately tough and green for easy. Advised her to colour in according to the effort required, regardless of whether the activity was so enjoyable she didn’t notice the effort required at the time…. Here’s where I feel slightly uncomfortable because I think she’s been making some progress by focusing less on how she’s feeling and more on having fun. However I can see he’s approaching this from the physiological point of view so we’ll go with it where necessary. He also took her blood pressure several times, and her heart rate and explained to her why she feels slightly dizzy every time she stands up as her blood vessels are not constricting quickly enough. We also talked about anxiety and, when I raised it, school. He supported my earlier encouragement of her to not constantly strive at school. In his usual style he stated that ‘he didn’t care if she went to school and got dumber’. Yay someone who gets it. Apparently the cognitive function is the last thing to return to ‘normal’ and it certainly seems to be the aspect giving her the most trouble these days….since she’s not expected to do much exercise.
We left with a plan to go to school 9 to 11:30 everyday (except Fridays when there is an activity she wants to be a part of from 2 to 3:30) and exercise for 10 minutes a day. Our girl also needs to make a list of ‘green’ activities ie; those she can do and not feel significantly more tired afterwards. Sleep doesn’t count apparently! (Not that she ever feels refreshed after sleep…. I can’t imagine what it’s like waking up just as weary as when you went to bed…every day.)Plus she has some more charts to fill in.
I feel relieved to have someone listening to her and telling her what to do. I feel like this guy is really on ‘our team’. He asks all the right questions and obviously ‘gets’ her. I’m concerned the 10 minutes of exercise is a little randomly assigned but I am prepared to think that may be my issue with ‘preciseness’!
We have an appointment to see the entertaining EP again next Wednesday. CFS paediatric specialist Monday. We’re busy with appointments these days. The school told me Thursday they’re pretty sure our boy had an asthma attack at the end of a game of footy.. ( He said oh yeah, it happened once at footy training too and once before at school! Do you think he might have mentioned it?????) So we’ve been to the doctor for him too. Honestly, we’ve gone from hardly using the health system to around 3 appointments a week! At least Andrew seems fully recovered from the shingles episode! And we have many other things to be grateful for.
Hope all is going well in your world.