parentingcfs

Navigating adolescent CFS

CFS Therapy Part 6 November 17, 2011

Filed under: CFS Treatments — parentingcfs @ 9:16 pm

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.

Any thoughts?

 

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4 Responses to “CFS Therapy Part 6”

  1. Sipora Says:

    It sounds great that she is able to have a school routine! Being out of the house and around people is so important! And the exercise is great too! I walk a lot cause I live in a city, but haven’t really started pushing myself yet. Hopefully soon I will be able to start some yoga- build endurance 🙂

  2. Annie Says:

    Thanks Sipora! Yes the school routine is a huge thing if she can keep it up. It makes such a difference to her getting out and about..and seeing different faces. Good luck with the yoga..but try to take it slowly..!!

  3. Sue Jackson Says:

    I totally agree, Annie. It is SOOO important to figure out your limits and stay within them. If you constantly go past your limits, you constantly crash…and it seems many people worsen that way. It sounds as if you and she have found the right balance for her for right now.

    One CFS self-help class teaches that you should “stay within your energy envelope,” and it sounds like that’s what you have discovered, too.

    Sue

    Ha! I’m caught up!! Now for the other 100 blogs I haven’t had time to read…

  4. Annie Says:

    Ha I’ve caught up on replying to your comments!! Yes I think the energy envelope analogy was from one of the first documents we read online ( and the whole program still makes a lot of sense to me..it’s just that it’s not my body and I can only recommend things…)

    Look forward to your next visit….!


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