The good, the bad and whatever else happens

Histrionics aside, my body is losing against this infection. I refuse to say ‘losing the fight’ because I have an uncomfortable relationship with the militarisation of illness and death. But no matter what I put into my body, ‘it is winning’,  as my doctor said this morning. He also wanted to re-admit me back into hospital, but I asked – begged – for two days grace. I now realise that was a mistake, so I’m returning as an inpatient tomorrow morning for whatever they can throw at me. More intravenous antibiotics and maybe steroids. Drugs that are going to make me even sicker. Drugs that will make my body hurt more than it already is.*

After coming home on Friday, I had what can only be described as a miserable weekend, and if I’m honest with myself, I’ve not improved a skerrick. If anything, I’m worse. Not having the energy to go for a walk, let alone drive, my Dad delivered some supplies to me yesterday and was worried about how I looked. I was very pale; a little grey. Across the weekend, there was nausea, shocking headaches, dirreahea (so hot, I know), rigours/fevers and I struggled to walk to the bathroom or eat. I finally ate on Sunday night. Carbed up. Lots of pasta. Late yesterday, I mustered the energy to watch Harry Potter and the Order of the Phoenix which I’ve had since I’ve been home, but I just haven’t had the mental capacity to concentrate. Last night I watched Dumbledore die in the Half-Blood Prince. Snape, you cunt. I was too tired to even be bereft about his demise.

So why did I ask for two days grace? It’s simple. I have an event I’m running on Saturday called ‘Dying to Know Day’ and I don’t want to let anyone down. DTKD is all about creating death literacy in the community and getting people ‘death aware’, thanks to an amazing initiative by The Groundswell Project. Just as I was getting ready to cancel the event, my great mate and colleague Bruce – who did a brilliant job as celebrant at my grandmothers funeral back in June – has oh, so kindly offered to step in, so not all is lost. I’ll be able to get to the event, but I just won’t be my usual hyperactive self. Because talking about death and helping make people feel empowered makes me feel alive. Oh, yes it does.

So amongst all this (what I perceive as) bad stuff, I’ve been blessed to be on Baxter bottles (say that five times fast), which saves me from having to scrub up, draw my antibiotics up three times a day and then push them in a collection of syringes, which takes about an hour for each dose. Instead, I hook these babies up to my CV line (the neck jewellery I’m desperately trying to not accessorise, because a quad lumen CV line is ENOUGH), and the balloons within slowly deflate over a twenty-four period. If I didn’t have the Baxter’s, I would have had to stay in hospital because my fatigue is so beyond what I thought it was going to be. So this is my daily set up. Breakfast. Grubs up …


A late dinner ….


The balloon in the bottles shrinks over twenty-fours so I get a constant supply of the antibiotic. So flippin’ clever …


My woollen backpack. Attached to me except when I’m sleeping. Which was a lot over the weekend …


After my appointment today, Mum took me to the book store where they had a copy of the Deathly Hallows waiting for me (thank you, universe). Then we had some lunch (thanks Stu at Avid for the pumpkin and ginger soup), and then to a couple of other places where I saw other various favourite people until I was ready to collapse. Then I came home and did LAUNDRY (it really is the small stuff).

And so, I have this message for the universe …


*I need a massage.

5 thoughts on “The good, the bad and whatever else happens

  1. A rollercoaster from hell, what a week. Carly I hope life gets better soon. I was thinking about your struggles today, when I hear people complain about stuff thats not important. You are an amazing woman, I have never met you but am blown away with the battles you have endured.


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