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Will I ever get used to exhaustion that seems to come from nowhere? I don’t think there’s any one cause – it’s probably a combination of the diabetes, thalassemia and depression. But even when I think I’m managing my activity loads okay and making sure I get enough sleep, I’ll be hit with a day where I can’t seem to make my brain focus. Today is one of those days.

Even sitting down to write this post, the cursor just blinked at me for ages as if to say, “well? What did you call me here for? I have things I could be doing, you know.” But I try to push on and write, if only to try and wrest some control back from my foggy brain and prove I can string a sentence together.

Although I don’t have chronic fatigue syndrome like the writer of this article (“To survive chronic illness, I needed permission to grieve for myself“), a lot of what she said resonated with me, particularly the idea that you might grieve the loss of the person you were before, what you used to be able to do, and that the grief in itself is a complicated feeling. “To grieve was to give up, and there was shame in that – a sense that I was shirking the responsibility of becoming well again through sheer force of will. I could be ill for a time, but eventually enough would be enough, and I was expected to go back to my old life.”

I still rail against it, even though I have struggled with this tiredness for years. Why shouldn’t I be able to have a couple of days of relatively low-stress activity and still be able to function like a normal human? Saturday I did some gardening. Sunday I went to church and had some meals out. Monday I took the car to be serviced, wandered around town for a bit, worked, went to symphonic band. None of these are difficult things. None of these are especially tiring; I mean yes, it’s more activity than just lying on the couch for three days but it’s not unmanageable. And yet today I feel like doing anything more than staring out the window is a challenge, even though I have piles of things I need to be getting on with. I do work in fits and starts, feeling the slight desperation of noting time slipping away as the day rolls on and my jobs remain unfinished.

Basically my mental capacity on days like this extends to Candy Crush. Staring at a screen and moving coloured blobs around with my finger is about my limit before it starts to feel like I’m trying to walk up a hill dragging a cow carcass behind me. (Cow carcass? Yeah I don’t know. It just popped into my head. I went with it.) Focusing on something like that simple game means that it breaks the incessant negative chatter that happens, telling my I’m wasting time, I’m letting people down, I’m failing at life in general (which is so obviously not true!).

Brené Brown says: “talk to yourself like you would someone you love.” I realise that on days like this, I really don’t talk to myself in a loving way, which makes it all worse.

So instead of thinking about failure and hopeless, I am going to commit to enjoying the remedial massage I have booked for this afternoon (good accidental planning, past Bec). I was going to go in to the Tasmanian Artisans Shop while I’m in town to drop off some more scarves that I’ve made, but even that interaction seems like too much effort, so if I feel like I can’t deal with that, I’ll do it another day and won’t beat myself up about it. I will soak up some vitamin D in the sun. I will listen to uplifting music and read a psalm or two. I will not feel beaten down by this body.