Navigating adolescent CFS

Have we found a baseline? October 15, 2011

Filed under: CFS Symptoms,CFS Treatments — parentingcfs @ 4:15 pm
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cfs therapy

End of the first week back at school and I’m wondering if we might have found a baseline, ie; a level of activity that our girl can sustain without wiping herself out.

Monday and Tuesday she went to school from 9 to 11am, no school Wednesday, then 2 until 3:30pm Thursday and Friday.

The different times at the end of the week have come about because the Year 6s have been working on a special group project but, coincidentally, it seems to be potentially a good routine for our girl. This is because at the end of the week she spends 30 minutes less at school each day and doesn’t have to try to rush in the mornings.

I’m particularly happy to see her not crashing as Wednesday didn’t turn out to be very restful due to lovely and very welcome visitors and an appointment.

Also…wait for it……our girl had a piano lesson! You may remember me mentioning last term that she wondered if she might be able to start piano again. From 8 to 11 years old  she had weekly piano lessons, then at the beginning of the year she wanted to try violin. Whilst she loved violin too, she has found holding the instrument too tiring and stopped lessons reluctantly back in May. She hopes that piano will be more manageable. As I wrote about last week we are on the lookout for more ‘green’ activities and she has played the piano for around 10 minutes each day since the lesson with evident enjoyment! She played for around 10 minutes in the lesson too and said she really started to vague out at the end but thoroughly enjoyed herself. We are keeping it as low key as possible by not doing regular lessons. Her wonderful teacher contacts us if she’s had a cancellation and if our girl feels up to it we go. Pretty perfect huh? I can’t tell you how wonderful it is to hear her at the piano again.

We have steered away from any formalised exercise least temporarily..while we work out the school baseline. It just gets so complicated trying to work out what’s causing the crashes otherwise. She has been on the Wii fit for a few minutes and done incidental walking but that’s about it.

Of course, she still feels unwell – fatigued, nauseous, etc but this week’s shorter, planned school attendances have given her some feeling of control and , of course, the essential socialisation. We have cut out recess or lunch presence because she was finding it too much. If she still feels well with the current schedule in a couple of weeks we will add in a recess or two. Or not. Who knows!

We also had our first visit this week from a ‘Visiting Teacher’, funded by the Department of Education and Training. She can come weekly to see our girl for up to an hour. If our girl doesn’t feel up to working on anything she just needs to tell the teacher when she arrives and she goes away! No pressure but some more support. Good stuff. Also this teacher can follow our girl though the system as long as she needs her and advocate for her at school. Next year she will run an information session with all the Grade 7 teachers. (Though we still suspect our girl will only be doing one or two subjects at this stage…)

So. all up, a positive week.

Hope life is good with you. : )


8 Responses to “Have we found a baseline?”

  1. Wow, that all sounds really great.

    I am very impressed by the ‘visiting teacher’ concept, that’s fantastic. What a wonderful support structure.

    It just strikes me as so ridiculous that H has to go through this, me/cfs should be renamed the ‘ridiculous’ disease. I hope this is ‘it’ her base line, fingers crossed for you all.

    Go the piano. 🙂

    xx Sarah
    ps I’m having a pretty good week, a great day today. I’ve really upped the detail in my activity/sleep/symptom recording which is making me more aware and hopefully, now that I’m stable and not getting worse anymore, I can also get my baseline right (and stick to it).

    • Annie Says:

      So great that you’re having a good week too Sarah…perhaps the CFS/ME stars are aligned right now! No, seriously, painful as it is, I do think recording activity helps immensely. Before H was even diagnosed I read Bruce Campbell’s self help document from go to whoah so I had some handle on the idea of pacing but I find it has taken time for us to get it down to this amount of detail…and we can thank the exercise physiologist for that…even though we’re not following the actual exercise part right now!
      Good luck with the baseline..and the beading -sounds fun. xo

  2. Cheri Portelli Says:

    The “Visiting Teacher” sounds like a wonderful concept. Will it be the same person every week? Hope it’s someone H can really bond with xx

    • Annie Says:

      Yes it’s great when you find out the government funds some really good stuff! It’s just nice for H to feel like people care and have a new face in her life…and if she gets some work done it’s a bonus! x

  3. Sue Jackson Says:

    I am behind and trying to catch up, as usual!!

    How wonderful that she has found a weekly routine that seems to work for her! That is fabulous, and it sounds very well-balanced. With Jamie, he is often either up or down, and when he is down (as he has been again this week), he is totally incapacitated and can’t get up off the couch, let alone go to school at all. The severe crash weeks (and weeks) get depressing and hard to deal with.

    And how great about playing piano again! It sounds like she is really excited about it – fabulous!


    • Annie Says:

      Is it because of the Lyme that Jamie can’t establish a baseline or am I just dreaming that it’s possible to do so? (Of course she’s home this week because last weekend was a big one so we’ll see if we get back to the routine next week…..)

  4. Jo Says:

    What great ideas I’m getting! Thank you! Our school recommended that G begin either homebound services (sounds similar to visiting teacher) or online schooling so that she doesn’t have to keep trying to go to school, which is not working very well right now. G. was very against either of these as she actually likes (or used to!) school and enjoys the social aspect. I am going to check to see if we can do some kind of combination of the homebound and attendance when she can. I also like the idea of having G track her activity level and crashes. I’m only just now learning the connection between the two and have begun to keep a journal for the doctors. However, asking G to do this in a concrete way might meet some of her needs for organization (a skill that she feels she lost since this began) AND give her a sense of control. I LOVE YOUR BLOG! Thank you!

    • Annie Says:

      Hi again Jo! The people in the Facebook group will be able to help you with ideas about homebound etc as you will have found many of them have some experience of this and are in the US like you of course. As for the journal keeping, we found it really helpful……and yes the feeling of having some kind of control back is amazing….. Not foolproof unfortunately but it’s a start.
      I’m SO glad my blog is helpful Jo. Hope your day is going well : )

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