Bigster had blood tests done today. We went to the children’s hospital and we parked one level down from where we usually park, and we went and we had this crazy long wait … and I realised that this has become routine for us. She and I are spending so much time at the hospital these days, it’s become a new kind of normal.
And I hate it.
May 4th, so my calendar tells me, was the day we took Bigster to the doctor. She’d been sick for a week with a mysterious run of the mill virus.
And then the doctor said she thought it was glandular fever, and sent the Bigster for blood tests … and then we saw another doctor who noticed that she had lost over 15% of her body weight in 10 months or so … and then the rollercoaster began.
And since then we have worried about (and eliminated) various conditions, mostly things we had not considered until the doctor tested for them, including but not limited to
- glandular fever
- brain tumor
- crohn’s disease
- coeliac disease
- some sort of nasty facial tumor thingy.
And she has had tests including
- at least three rounds of blood tests
- a CAT scan
- a gum biopsy
- weird facial photography.
And I know that it is a REALLY GOOD THING that she doesn’t have any of those horrible and terrifying diseases.
But also, I wait. Because we have to wait for the doctor to come up with new things to test for, because there is definitely something very wrong with my beautiful girl, and I am so so afraid of what that might mean.
The latest theory is that it might be some form of narcolepsy. Because apparently she doesn’t fit the profile for chronic fatigue, even though she is tired and lethargic all the time. So we had a genetic test done today to check for that. And meanwhile we are meant to be restricting bedrest – so by 7pm she is completely beyond anything approaching manners, and begging to be allowed to go to sleep.
She’s not done a full day of school since the start of May. Even with her shortened days (she comes home at lunch time), she’s not done a full WEEK of school either. We pick her up between 12:30 and 1:30 – and then I try to spend some time with her, see how she’s feeling, and then I collect Otto from school, and then I collapse and sleep for a couple of hours because I was up till 2 or 3 trying to finish the previous day’s work - and then I start working again at 8:30ish once Otto is in bed, and I work till 2 or 3 again.
I took this week off work, hoping to go away and at least to spend some time with the girls. But it turned out that we couldn’t go away because even 2 hours sitting around at the hospital had her exhausted and cranky. These holidays were meant to improve her health somehow, but they’ve made no difference at all. I need to clean the house, because that doesn’t happen when things get on top of me, but that’s just one more thing to add to the long list of things that won’t get done. And I need to clean her room because Fraser thinks that she has an old lunchbox hidden somewhere in there that might be a biohazard – and I catch myself wondering whether OMG THAT OLD LUNCHBOX is the reason why she’s sick – and what impact the meter changeover might have had (the smart meter is on the outside of the house near her pillow) and other crazy nutter-like stuff. And seriously, I would feed her tofu and quinoa and those other “superfoods” except that there is no way she would eat that stuff.
And while on that – we have good medical advice which I am
happy with confident in.. I am venting, not looking for suggestions or for scary stories, because I am quite good enough at making them up myself thank you.
And Fraser will tell me that it’s because it’s 2am that I am fretting like this, and there is a certain truth to that, but when I go to bed at 10 or 11 I just lie there and worry and can’t sleep and pretty soon I’m back down the corridor, sobbing on the sofa with only the cats to keep me company.
Because “chronic illness” is 3 months or more, so we’re just round the corner. And what comes after that? What’s the next trigger point? And how much school – and how much social life – will she have missed by then? She’ll be 14 in a little under a month, and right now she can’t think of anything she wants to do for her birthday, because she doesn’t think she’ll have the energy to do it.
And I try to be upbeat, because honestly, I just CAN’T believe that it is something so serious that it will affect her forever. But then I look at the trouble she has staying awake for even nine or ten hours, and I just wish I could do something to fix it.
And that is why I haven’t been blogging much. It’s hard to be upbeat and chatty right now.