Saturday, 17 August 2013

@ Anonymous

At first I felt slightly offended when I read your 5 word comment "stop sending her to school"... I thought "what do you know about our situation ... it's not that easy"...  but then I realized ... that is exactly what needs to happen.

So thank you for the comment ... I've been contemplating bringing Eden home for months now ... but I've finally made up my mind this weekend after Eden's hit yet another flare ... and I can't bare seeing her suffer like this emotionally and physically .... so time to bring her home.

Will see the school principal this week and make arrangements to home school Eden for the rest of the year and probably all of next year.

Time to comfort this girl ... she's in a lot of pain.

I dabbed her down with warm water this evening and immediately dried her off and put epizone ointment on ... gave her meds, hot water bottles and put her in bed.

Now she's relaxing and getting ready to sleep for the night.

Good night all.


  1. sry for having been blunt. thank you for considering my comment nonetheless. i know it's not easy, but with a bare glance at Eden's pics, and as someone who's suffered tsw, i very strongly feel you've made a good decision. emotional and physical stress, stunted sleep, risk of infection (even a cold will suck tenfold), retarded healing, outside comfort zone, too distracted to study, etc. besides, any other vital organ and it'd be a no brainer.

    now that she's not attending school, you may want to take measures against cabin fever and loneliness. on a more general note, all kinds of anxieties develop, one upon the other, from the grossly unnatural state of one's body and lifestyle... as with any animal in prolonged distress. thing is, theyre hard to recognize and delineate, let alone describe to someone healthy. they go away as the symptoms abate, but while they're there they can make the condition exponentially worse to endure. this is "the untold story of tsw". anxiety became 60% of it for me. in my case and apparently many others, it was the fear that x object or activity will cause extra discomfort leads to habitual avoidance, reinforcing the fear. this may or may not happen with Eden, but it is something to keep in mind.

    pain and "fed-upness" are separate things. my worst symptoms were in month 3, but anxiety took hold later. when things are bad, remind her that she's the one in control of her emotions and her body, and if her fear gets the better of her, it's because she's letting it, and that's ok. and on rare occasions it's better to admit that the effects of tsw are indeed too strong, but treat this attitude as a luxury. losing one's sense of agency and the narrowing of one's context is what makes anxiety crippling. saying "i won't do it" is fine, but saying "i can't do it" is one's worst enemy; vigilantly discourage this mentality, while knowing tsw is very effectively providing conflicting proof.

    all said, the simplest antidote is to periodically break routine, thoughtfully engage in something normal, and come away from it with a fairly positive attitude. this will be an effort, since as long as the tsw is bad, there will be fear, but the key is to not allow it to swell.

    best of luck you two! i understand it's not easy.
    xo, anonymous

  2. Big hugs to brave Eden. You have to do what feels right during TSW. I think you have chosen the wisest path as I know how tough TSW can be and I certainly would to have wanted to go to school on my bad days!

    Hopefully her withdrawal will be quicker than us adults and she will be back to her normal life in no time. I love reading your blog and this you are a lovely family.

    Bless you all. X

  3. The decision is a sound one as long as everyone is OK with it. Eden will miss her friends for sure, but the stress of seeing them with her skin flaring and the stress of school itself will be abated for a bit, giving her time to cope and heal. I homeschool my 3 kids - if she ever wants a pen pal, I have 2 daughters ages 8 and 10 who love to write!

    1. Thanks so much Anonymous, Louise and Tracy ... really appreciate the advice and encouragement.
      This is not an easy experience ... but helps so much to know (or indirectly know) people who have been / are going through this with us.
      Tracy that is a great idea!! Eden's email is:
      Eden's mom