Navigating adolescent CFS

So far so good this week… July 27, 2011

Filed under: CFS Treatments — parentingcfs @ 2:01 pm
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Well, for those of you who clicked through yesterday you would have noticed a title with no post here. Wish I could tell you what happened but I can’t as I don’t know. Will attribute it to the new mysteries of blogging and continue!

A quick summary of what I wrote about yesterday:

1) Our girl is having a good week. Half days Monday, Wednesday and probably today. Full day Tuesday. Full days are witnessed by me with mixed feelings as they can cause her to crash and not make school for the rest of the week which is what happened last week.

2) I’ve given her total say in how much school she does. Tuesday I went at lunch as instructed by her and she said she wanted to try to stay for the afternoon provided she could call me if she wanted. I said yes and skipped gaily off to have a life…ooops did I say that? If the last weeks are anything to go by giving her control helps her immensely. I suppose I would have been starting to learn this lesson around now anyway, as she gets older, but really it’s a completely different ballgame to having a well kid.

3) The reality is that when even the experts can’t agree on the best treatment for CFIDS – except maybe the importance of sunshine and keeping up socially – how on earth can I insist on her doing anything? I thought I had already got to this place but then there was that morning early last week when I really encouraged her to go… I don’t think I would do that anymore. Of course I can’t ignore that how I was feeling that morning probably influenced my decision. I think I’ve accepted better now the temporary hiatus to having any kind of plans for myself that can’t be changed at the last minute.  Quick cuppas at the local cafes with friends and family are a lifeline right now. Really grateful for everyone’s support.

How’s your week going?



9 Responses to “So far so good this week…”

  1. Marnie Says:

    Annie, it has been really interesting to read your thoughtful blog. Has made me realize I need to learn more. The constant cry of the generalist – about most things!! Keep telling your story and make sure there is still some time to nurture yourself through this rollercoaster ride. Mx

    • Annie Says:

      Thanks SO MUCH for your comment and encouragement Marnie. You can’t imagine how much it means. Can’t wait for the mystery to be solved. Big hugs to you all. xoxo

  2. Kerrie Says:

    Annie, I’ve been reading your blog for a while now and I’m blown away by your honesty and devotion. You’re doing such an amazing job and H is lucky to have you as her mum. Sending you all my good vibes and best wishes and hope we can catch up for a coffee sometime soon. Give me a call anytime, I have student flexibility. xK

    • Annie Says:

      Hi Kerrie! Thanks heaps for letting me know you’re reading! Really great to hear from you and to hear you’re not finding my ramblings too self-indulgent! Coffee sounds great- I’ll be in touch! x

  3. Roddy Says:

    Makes me think – and I’m not even the parenting type! Hat off to you as this comment really made me think “skipped gaily off to have a life”. Although you joke about it, I’m staggered. Having to ‘look after’ a ‘healthy’ kid is not my cup of tea at all and here you are ready at any time of the day (or night) to stop everything and help her – that’s LOVE! Of course, I’m sure you wouldn’t have it any other way, but I’m …’impressed’ is not the right word…so I won’t try to rephrase it but just say it’s nice not to be alone, Harriet’s not and either are you, we are all there for each other and I think that’s what it’s all about.

    • Annie Says:

      Gosh thanks for that comment sweetie. I guess love is what it is and I’m just so grateful not to HAVE to work full-time to feed us and pay the mortgage. As Dad would have said,(can’t remember who he was quoting!) “This too will pass” ….. and in the meantime we all do the best we can. Big hugs for being there. Oh and I think Andy Schleck’s time will come….he’s got years in him yet!xo

  4. Sue Jackson Says:

    Annie – I tried to sign up to follow your blog, but I got an error message that there was no feed for it. Can you check and make sure the options for a feed are all turned on? I don’t want to miss anything!


  5. Jo Says:

    Your comments about letting your daughter be in control are challenging me to think more about what I do with my daughter. I really do struggle with this as severak of the times I’ve let her decide, she has crashed big time–like for a week. I always let her rest when she says she needs to but still feel the need to set limits on her activity level. She is a gymnast and would choose to push herself to go to practice, move equipment and compete in all events if I let her. The last time I went against my better judgement and let her compete, she wound up in a very dangerous situation on the balance beam and then we spent the next day at the hospital as she developed an incapacitating migraine. She was again crashed out for a week. And yet….. I admire the confidence you have in your daughter and it makes me want to be very cautious about making any decisions for my daughter that she can make for herself. This is so very hard, isn’t it??

    • Annie Says:

      Aaaah Jo that must have been a horrible experience with the balance beam. It does make it harder for you to step back if there is gymnastics involved! My girl had her school fete last Saturday and then a Grade 6 activity all day Sunday and she wanted to be at both so she hasn’t made it back to school this week and probably won’t until next week. It’s easier for me to be calm about this at the moment as she’s still in primary school. I really have no idea what’s ahead for us and I’m quite worried about high school next year as nobody there knew her when she was well etc etc….. Did your daughter learn from the balance beam incident? I just work on the theory that if my daughter can learn her own limits she’ll police them much better than I can and also it will be better for our relationship…

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