Navigating adolescent CFS

“It’s just not my time Mum” October 19, 2011

Filed under: CFS Treatments — parentingcfs @ 9:48 pm
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cfs therapy

I love my daughter to bits.

This afternoon she and I sat in the exciting spring sunshine (never guaranteed here in changeable Melbourne) watching my son training for his beloved sport of cricket. The under 14s were training also and my daughter was identifying the boys from her class, in a sort of roll call fashion, to me.

Perhaps thoughtlessly, I was moved to comment that it must be tough for the boys we know with CFS not to be there, training.

My gorgeous girl looked at me, astonished, and said, “Mum, you just don’t get it do you? We’re all right about it. We get it’s just not our time right now.”

Then she smiled her beautiful smile and carried on, ” That’s why it’s so exciting to hear other people’s news like (some class gossip she told me yesterday) because nothing’s happening for us. So we like hearing about others.”

Now I’m pretty sure the boys don’t actually feel like that but ,wow, I sure am glad she does. Even if it’s only temporary. And I’m going to keep colouring in those colouring books with her and okaying trash tv because we must be doing something right. Or maybe it’s all just due to her enormous heart embracing her world in the best way possible.

You have to love the way sunshine makes us feel. x


6 Responses to ““It’s just not my time Mum””

  1. Sarah B. Says:

    That’s a gorgeous post Annie. Thank you for a little sunshine.

    I love Harriet’s outlook. It’s true that me/cfs is bad but it doesn’t mean we can’t feel happy.

    I also really delight in hearing how other people are doing because
    a. it’s interesting and let’s face it nothing much is happening in my life at the moment.
    b. it makes me happy to see people happy. (never under estimate the power of transferred happiness)
    c. they do funny things.

    It’s hard to feel like this all the time, but I think I can safely say, that mostly it really is okay, especially with a supportive (if a little nutty) family in the background.

    You two are doing so well. Keep up the great attitudes and the colouring for a cause.

    🙂 Sarah

  2. Annie Says:

    Thanks for your lovely comments as always Sarah. Yes I was thinking today as yet other Kardashian drama went down that I can see the attraction for H getting to watch other people’s lives unfold! As long as she comes to terms with the fact that we can’t afford quite as many diamonds…..and that 3 wedding dresses for one wedding really is ridiculous.
    I think supportive and slightly nutty families are the BEST!
    Started beading? I think you could make some gorgeous stuff.

  3. Sue Jackson Says:

    WOW! What an amazing, mature, and optimistic thing for her to say. She is an amazing kid, but I guess you knew that. Yes, you are definitely doing something right!

    I wish Jamie could feel that way, but he is really grieving right now. I think because he was able to sort of get by for the past 4 years – he struggled but be mostly attended school full-time, played soccer once a week, etc. – and now he is finding himself totally incapacitated again. He really feels like he is missing out on everything. I think it’s also because its his senior year of HS. He sees all of his friends doing so much – driving (he knows how to drive but rarely feels well enough), going out, staying up late, school activities, etc. – and he seems them all excitedly planning for their futures. His future is somewhat up in the air right now, though we are hopeful he will improve with treatment for Lyme and the other infections. He’s in a bad place emotionally right now.

    So happy to hear your daughter is so happy and well-adjusted!!!


    P.S. Did you see the message I sent you on FB? I had an idea on how to get around your problem getting into the group.

    • Jo Says:

      Oh, how I wish my daughter had the peace that your daughter seems to be experiencing. Unfortunately, she is grieving in a similar fashion as Jamie and struggles mightily with what she is now unable to do. G. has a strong will and is used to being able to “power” her way through difficult challenges. That just doesn’t work with CFS. It’s painful to watch her frustration and anger as her best intentions fall so far short of her ability to follow-through with activities or plans. It’s like she needs to learn to navigate in a whole new world. I’m hopeful that learning to balance rest and activity will result in a new, lifelong skill that will be helpful in future endeavors, for both of us! It’s so helpful to hear about others’ experiences and I wish all of the children and parents the very best. Thank you for sharing.

      • Annie Says:

        Jo, I’ve no doubt that my daughter is in a comparatively good place just because she is younger so it’s much easier for us to kick back and say’ don’t worry about school’. Also I guess she was only just starting to grow away from us a little so it hasn’t been such a big shock to be limited to family time etc. I’m sure it’s incredibly frustrating for your daughter to feel so restricted but as you say they will surely emerge stronger as they learn to acknowledge their bodies limits…… We can only hope.

  4. Annie Says:

    Oh Sue, yes I so feel for Jamie right now and that must be nothing compared to how you feel. I have no doubt H’s optimism is due to where she’s at in this and, of course, every fibre of my being hopes she won’t still be struggling with this illness at the end of high school like your precious son. However, if she is, I just hope I’m as good a champion for her as you clearly are for Jamie. I’m sure everything you are trying, and just the support he gets, will lead on to better times. Hugs.

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