Oooh I’m a little bit excited and I know I shouldn’t be…… it’s just so hard not to be!
I know there’s a cruelty in this condition where things can look up for a while only to find a crash follows but for now I’m going to err on the side of optimism and say…….our girl is looking really good!
First she coped much better in Japan than I was expecting. Then she didn’t really crash afterwards and now her energy levels seem fairly stable and she’s not as bone-crushingly weary as she has been.
How much of this is because of the pacing and expecting less and how much is because the illness has let up a bit I have no idea but either way it’s thrilling!
She has managed the 9 to 11:30am routine for these first 3 weekdays and tomorrow goes to the 2 to 3:30pm shift for Thursday and Friday so that she can be part of the ‘solar boat’ activity at school.
Just before we went to the exercise physiologist this afternoon (another positive session – I will post about it tomorrow) she and her brother started talking about the aerobics they’d done at school that day. I imagine my face was fairly comical as I took this in. She wasn’t sure how much she’d done but when I mentioned she should record it on her exercise sheet she guessed at 30 minutes! She’d also done a gentle 10 minutes on the exercise bike just prior to this information coming to light so I’m very interested to see (and slightly freaked out!) whether tomorrow or the next day brings a crash.
So I guess you can see why I’m just a little bit excited….
I hope you’ve all had a good day too x