parentingcfs

Navigating adolescent CFS

The Rollercoaster July 20, 2011

Filed under: CFS Diagnosis,CFS Symptoms — parentingcfs @ 12:44 pm
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CFIDS is such a confusing illness.

Our girl has been looking good to me the last few days yet  the numbers she has given me to write down at the end of the day (1 to 5, 5 being the worst) have been 4s. And this morning she told me she shouldn’t go to school as she is still crashing after the big weekend and if I hadn’t made her go yesterday morning she might have recovered by now. (She spent 11 am onwards at home yesterday in a prearranged plan due to sporting activity at school) And I basically made her go today, even if she lay down on the couch in the classroom all day. However if she felt really bad she was to call me.

As with everyday, whether I keep her home or not, I ask myself the same question “Have I done the right thing?” Towards the end of last term I would have been more inclined to keep her home. This term, on tentative advice from professionals, I am more inclined to keep her as engaged as possible with the school community. But don’t imagine I don’t question this every single day! How engaged can you be lying in sick bay and does resting at school, where her public face may be called upon at any time, recharge her and help her recover in the same way resting at home would? As always the balance is between social and physical health and with this illness the two are so very intertwined.

Oh and just as another added bonus to the angst, she added sadly to me this morning, unprompted, that she’s finding it harder to concentrate in class and she feels her schoolwork  is suffering. Thankfully our girl is already ready for high school academically but apart from the frustration this horrible symptom causes in her it also ticks the last box of neurocognitive impact that was the last criteria of CFIDS that I wasn’t convinced she’d met.(But hadn’t mentioned to her for obvious reasons) http://mcwpa.org/what-is-mecfs/diagnosing-children/

With this illness, as a wise fellow mother of a CFIDS kid said to me yesterday, you have to forget everything you know about other illnesses. Some hours she seems so together even to me. Other times it’s clear even to outsiders that she’s not well.  And hence the title of this blog.

UPDATE: As you will see from later posts I never really ‘insist’ on anything anymore. I just listen to my child, ‘encourage’ certain choices, let her do what she wants and hope for the best. : )

How do you find balancing the needs of your child with CFIDS? Does it ‘do your head in’ like me or do you just get on with it?!

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2 Responses to “The Rollercoaster”

  1. Jo Says:

    YES!! Roller coaster is such a great way to describe it. I am always second-guessing myself about what to allow my daughter to do. Unfortunately, she’s had a couple of week-long crashes as we try to sort out what is possible. It’s so very frustrating! She was able to go to 2 classes at school today but then had to deal with many comments about “you don’t look sick” and disbelief that she really was mostly sleeping when at home. Her school has been great but it’s difficult for teachers to understand that even though she might look okay for a few hours, she pays dearly for those hours and it doesn’t mean she is ready to get back up to speed on her assignment. My daughter and I talk lots these days about finding the balance. Since she is 17, I want to allow her to make some of the decisions but so far that hasn’t worked very well. She was a very high-achieving, active teen with a strong will. She doesn’t yet understand that she can’t just bully her way back to the activity level she used to have.

    • Annie Says:

      Oh Jo yes it’s a such a struggle for them to come to terms with their new limitations…and the judgements and expectations of teachers and others do not help. And yes in some ways it’s so cruel that they CAN look so normal when they push themselves. It feels horrible to WANT your kid’s illness to be visible but in some ways it would make it easier for people to understand. I know in the beginning I found it so difficult to reconcile that my girl could go do some things that she WANTED to do but not regularly attend school. Now I understand but still can’t really explain it. So many of the kids with this are high-achievers…we’ve just been having a chat on Facebook about the number of engineers and other math/science related professional parents involved. I’m not but my husband is an engineer. What on earth can the link be..and, of course it’s there with autism too…


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