For those of you who have been following our experiment with exercise therapy, this is a rather overdue update.
Back in October our exercise physiologist, who is a fabulous, supportive, entertaining guy, went on leave for a little while and hence we had a little break from seeing him.
Prior to his departure he had helped us immensely as:
1) Over a month we carefully documented our girl’s daily activity. This helped us assess how much our girl was capable of and got us into the mindset of how much she could plan to do each week. Essential stuff.
2) He introduced us to the idea of so-called ‘green’ activities, activities that are enjoyable yet don’t tire our girl out. (BTW our colouring books through Amazon finally arrived…they’re great!!!!)
3) He made us laugh and we all know how essential that is when dealing with chronic illness…. well anytime really!
While he was away we continued trying to establish whether our girl could do a set amount of exercise eg 10 minutes on an exercise bike going very gently. What we learnt was , no, she couldn’t. Even in the school holidays we found she was continuously crashed. So we pulled right back and decided that we would try to establish a school baseline (see post) and ignore ‘exercise’ for the moment.
It was a HUGE relief to get a school routine happening, even though it only resulted in 7 hours of school a week. You can’t ( or maybe can! ) imagine how great it was for our daughter and us to have some kind of certainty back in the weekly plan. Oh, and actually the plan has only worked for the first 2 weeks as after that there was the big fete/ solar boat weekend then Halloween, then school camp (which was, of course a no go). This week we should have been back on track but our girl had a mucked up sleep Monday night so didn’t make it to school Tuesday. However, in my gut, I know we’ve got something generally manageable worked out here. (Bottom line: the 7 hours of school is only manageable if the weekends involve very little activity)
And the exercise? Well, when it came time to see our EP again our girl said, ” I really like him, I just don’t want to do what he wants me to do.” Hmm, well, that was pretty clear, and you know what, I think she’s right. We’ve learnt what we needed to from him for the time being. Without seeing him I don’t think we would have come to grips with the baseline idea so quickly. We also know she isn’t up to any more exercise for now.
Our conversation with our paediatric CFS specialist earlier in the week confirmed what I feel we have learnt. It’s more and more obvious that (very gentle, carefully tailored) exercise therapy is possibly only worthwhile where People With CFS (PWC) are badly de-conditioned. Our girl still walks a block to school when she goes …not to mention covering a remarkable distance (albeit at a leisurely pace) when she gets to a shopping centre. Aaah yes, the Annie shopping genes are alive and well! It’s possible the local Westfield will soon have to re-floor the route between our favourite car park, JB Hi Fi and Just Jeans….. just saying!
It’s my understanding that even some exercise physiologists are now saying that just getting to school is enough ‘exercise’ for our sick children. That makes perfect sense to me. It seems to me the best research is coming out of the Pacific Fatigue Lab in California but it’s difficult to find the extent of it documented on the web and I’m still trying to get my head around it. How I wish I had studied more biology! Research 1st has just documented some of the important stuff here.
In the meantime we will chuff along with where we are now and enjoy the calm as much as possible before the high school storm hits! We have a meeting with the school next Friday. I’m optimistic that all will go well.