Navigating adolescent CFS

Good things to say to a chronically ill person July 6, 2012

Filed under: CFS Treatments — parentingcfs @ 9:47 am
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Hi all.

Well today is our darling girl’s birthday and she’s horribly sick with a cold on top of the usual symptoms. So unfair after the year she has had but we are doing all we can to cheer her up.

I just wanted to quickly post a link to this article as I know how difficult it can be knowing what to say to someone unwell.

In the last week of school our girl told me about being offered a Twistie by a good friend and saying,” Oh thanks but I can’t have them because I am trying not to eat wheat or dairy.”  When asked she explained it was because of CFS and she told me,” It was so nice Mum because they were really sympathetic and said it was terrible.”  Such a few words can mean so much.

Thanks as always to everyone who supports and encourages our precious girl.



4 Responses to “Good things to say to a chronically ill person”

  1. Sue Jackson Says:

    I’m not sure what a Twistie is, but I’m sorry she can’t have them!

    I didn’t realize you’d cut out dairy and wheat – any particular reason or just trying it? Have you seen any changes from it? Jamie is dead set against any diet restrictions! I mean, we eat healthy, but he has lots of GI problems as part of CFS and Lyme.

    I hope she had an OK birthday in spite of feeling so rotten – I;m sure you made it special for her!


    Live with CFS

    • parentingcfs Says:

      A Twistie is a bright orange twisted snack … a variant on chips. Very addictive and I don’t go near them these days! Naturopath suggested H was showing dairy and wheat intolerance. Milk protein intolerance is very common in CFS apparently? Know I’ve read it somewhere! Also there have been indications of milk sensitivity from the paternal line (both my mother-in-law and husband can’t stand it)..and hey, let’s face it, we’re the only mammal that drinks milk after being weaned, it’s a bit weird!The one definite thing I’ve seen from the naturopathic advice/potions is that H’s stomach seems a lot more stable..she seems to have more of an appetite (though still small, frequent meals) And she is opting to stick to the rules even when presented with the option so I’m guessing her body is telling her to do so? She did have a few ice creams on holiday but then stopped.So nothing definitive I guess and if Jamie not interested it’s probably too hard. I’ve made the decision to only offer wheat free and non-dairy options at home and left the rest up to her. Incidentally wheat free is a lot easier than gluten free.
      Will let you know of any developments. Thanks for your comments as always. : )

      • Sue Jackson Says:

        Yes, food intolerances are very common in ME/CFS – you are right! I developed a dairy intolerance shortly after getting CFS, after a lifetime of enjoying lots of dairy and never having any problems.

        We are working with someone new – a biochemist and registered dietician. She is going to review Jamie’s history, diet, meds, etc., run a bunch of tests, and then make suggestions, including dietary suggestions, so we will see what she says. Only wrinkle is that if Jamie heads off to college next month, that could make eating a restricted diet very tricky!

        Ah, one day at a time…

        Glad the diet has helped H.


      • parentingcfs Says:

        Aaah, the biochemist/dietician sounds great. Do let me know what she says when you have time? Yes, Jamie going off to college will make things rather tricky. Though I guess if he has a chance to trial it before leaving he might notice he feels better and WANT to stick to it? Anyhow, we mothers can only do so much right? They must walk their own path I guess. As long as they stay hydrated, take their tablets, pace themselves etc etc!!!

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