Navigating adolescent CFS

The silver lining to the very grey cloud. November 11, 2011

Filed under: General — parentingcfs @ 7:03 pm

Okay let me get one thing straight before I write this. I HATE that my girl is so ill. I wish I could take the sickness for her. I would chop off my right arm – I paused to think about this phrase and I really would! – if it would cure her. But it won’t. So instead I take it one day at a time and look on the bright side where I can because that is the best thing to do.

So I hope you’ll understand where I’m coming from with this post….

The upside to my gorgeous 12 year old having Chronic Fatigue Syndrome:

1) I get to spend lots of time with her.

2) I get to hug her more than if she was well.

3) She still likes me most of the time despite what her hormones are telling her.

4) I’m not worried that she’s out ‘experimenting’ with anything – except whether she can last another 30 minutes at school. (Hopefully she wouldn’t be doing this just yet anyway but let’s face it I know exactly where she is every minute of the day and most often that’s with me! And that’s unlikely to change anytime soon. But if it does that would be wonderful.)

5) I get to watch crap television (and some not so crap) that is occasionally fun and I know lots about the Kardashians…surely that’s a life skill?!

6) I never have to be on a crowded peak hour train at the end of the day just wishing I was at home..because I already am!

7) I never have to iron work clothes.

8 ) I’m learning to live in the now because it’s impossible to know what each day holds – well I guess it is for anybody but I’m only really learning that now.

9) I’ve learnt how to set up and maintain a blog and I get to write.

10) I’ve met a whole lot of lovely people in the blogosphere and become friends with two other wonderful mothers (of kids with CFS) from school whom I barely knew before.

None of this comes even close to making up for what my girl goes through.

However, it’s been a bit of a bleak week here while she missed out on Year 6 camp so I’ve got to hang on to the positives as hard as I can right now.

Any upsides for you? It’s okay to say, don’t you think? Because we all know it’s not an either or. It’s about being grateful for what we have.










8 Responses to “The silver lining to the very grey cloud.”

  1. Sarah Wilson Says:

    Hanging on to the positives is really important – it is about making a choice – to let the situation beat you or to survive it and learn. No justification needed, it is the only way to go. Hope you can keep that focus, even if it slips on a periodic basis!

    Lots of love to you – Sarah.

  2. Something I am still grateful for every time there is a big storm…is living in a house not a boat!

    Hang in there guys you are both doing really well. This isn’t forever.

    • Annie Says:

      Oh yes I can imagine that would be a nice thing running through your mind when the lightning is flashing! We have had some great storms here recently, mostly overnight and it’s always loving to hear the elements doing their worst whilst we are snug inside : ) Thanks for dropping by Sarah. Hope it’s a good day where you are.

  3. Jen Says:

    Annie, good for you! You are finding a way to grasp anything and everything positive from a very difficult situation. I would imagine that your daughter picks up on your optimism and that helps her as well. I laughed when I read about “..not experimenting” as I have had those same thoughts. As you have pointed out, we have to find the silver lining and hang onto that. All the best to you and Harriet.

  4. Sue Jackson Says:

    Well said, Annie. There really are positives…and one of them is that living with chronic illness makes you more aware of the positives. It has for me – I am much more grateful now for what we do have and much more appreciative. We have learned to find joy in the little things since many of the big things are out of reach. And CFS has forced me to slow down (a bit) and loosen up (a bit) my desire to control everything. I’m still working on it, but losing complete control over life does teach you that some things are just beyond your control and you need to go with the flow. It’s normal now for us for all plans to be tentative and when we have to cancel plans at the last minute (as we often do), it’s not a big deal. I think we’re all more flexible. And I know my kids are more empathetic for having lived with their own challenges.

    Another great, thoughtful post! You are a really great writer – sorry I haven’t been around much.


  5. Annie Says:

    THANKS SUE!! I love to write but am really only talking from a very personal viewpoint. Your blog is much more informative and hence helpful but I guess there’s a place for each of us!
    I totally get the slowing down and loosening up thing as you know…some days I wonder if the world actually stopped when I wasn’t looking?!!!

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