Showing posts from July, 2014

My brainfog (and I'm not even the one with the chronic fatigue!)

This morning we clean forgot that #4 child needed to be at band at 7:15am.  We've only been taking a child to this band for, I don't know, like SIX years!

I've forgotten a lot of things recently.  On Friday I forgot that I actually had one child at school (the primary kids were all at home for most of last week sick) and had to rush down to school and pick him up.  Why is my brain malfunctioning on basic routine-type stuff?

I was pondering what was taking up my brain space instead.  This morning at 7:15am I was thinking about what time we needed to get J up so she could be ready in time for her half day at school.  I was thinking about whether or not she'd actually be well enough to get there.  I was thinking about what I might need to do to push her to get up and dressed.  I was thinking about how I'd cope if she started crying and complaining that she felt too tired (she always feels too tired).  I was thinking about what I could say that was going to help her g…

But wait…there's more!

If you feel that you are up to speed with our tale, then you would be wrong.

Last week our appointment at the children's hospital was great because it was the first time in six months that we had been given concrete direction on how to move forward.

One of the steps in the plan was that we had to find a psychologist ourselves.  So I dutifully went along to our GP for a recommendation.  She called the first practice she could think of that would deal with adolescents.

Turns out that Headspace actually run a fatigue clinic for adolescents in Camperdown that is affiliated with the University of New South Wales.  When I rang them to ask for an appointment and told them our story, they expressed surprise that Westmead even helps with fatigue because as far as they know, they, and UNSW, are the only organisations in Sydney that run official fatigue clinics.

Amazingly there was an appointment slot free the following day which we took, even though we felt that we were doubling up on i…

A plan (finally)

After my post last week about J's health, I've received a lot of messages from folks asking how the appointment went and what the outcome was.  Some of the messages were showing general concern but a number were also curious about what happened in the appointment and how they plan to manage J's fatigue.

We met with a pediatrician and a psychologist for about an hour.  In that time they met the whole family, spent time talking to J alone and then they talked with Rowan and I alone.  What I appreciated about the appointment was that they were very straight with us.  They weren't critical and were in fact quite encouraging about different things we'd already tried (like waking her up before she'd naturally wake up, getting her to do a small amount of exercise each day).

But they were very clear about what she has to do to get better and explained the plan to the whole family. They also said that some of her other symptoms (like sore knees, a sore tummy, headach…

A touch of the weariness about it all

Today I feel war weary.  Weary from the war of medical visits and doctor's opinions and rearranging our life to make it happen.  I feel weary from talking about it.  I feel weary from the anxiety and helplessness and the sense of failure.  I feel weary because hey, life is just tiring anyway isn't it?

The good news is that I had two weeks off from that weary feeling.  It's definitely an environmental, circumstantial weariness.  Two weeks away at the beach, with good friends, lovely food that we mostly didn't cook, long bike rides, bush walks, sits on the beach, knitting, reading, sleeping, laughing with our kids. All the good stuff, the refreshing stuff of life.  J was happy to be out of the house, distracted by the other kids, even managed a few short walks.

But as the time came closer to come home we could feel all the anxiety returning, the tensions, the stress, the uncertainty about what lies before us in the second half of our year of less.  Even J crashed more …