hope, patient, shame / Sunday, January 7th, 2018

Every Sunday morning I have a chore. It is just a small job, five minutes, maybe ten tops, but crucial. I have to refill my pill box for the week, and note down if there are any I need to re-repeat. It doesn’t take long, though it is fiddly.

It is also a useful thing to do. Sometimes the ritual throws up potential catastrophes before they happen. A box which felt full is actually nearly done with, and jumps to the top of the Repeat Prescription list, or worse a new brand arrives and I suddenly have four yellow pills and one white, and have to remember to wear my glasses when I get up so I don’t essentially sedate myself in the morning.

My Grandma had a box like this. I remember being fascinated, by it. The sorting and the segments, an ice cube tray with snap top lids. In her later years my mum and sister laboriously sorted them for her once a week, so she could keep her stack of boxes in the kitchen and keep track of what she’d taken and when. It might have divided the week into days, and the days into ‘morning pills’, ‘afternoon ones’, and ‘bedtime chasers’. Such an act of kindness and help.

Some weekends I let the nostalgia take me home. I do the sorting like I’m eight, playing pharmacist.  I remember child-me being fascinated by pills and their round blister casings lined up in first aid boxes and up high cupboards. They have such anticipation, pill packets, like bubble wrap. It can be quite soothing the snap-crack of the foil, the dispensing, and tense, you never know which ones will fly out, or worse snap and crumble.

The careful checking, the different shapes and colours, lined up day by day, a way of reducing the overwhelming size of my illness box to a weekly tube, so I don’t have to route around half a dozen boxes each morning.

I think of Damien Hirst’s pharmacy, a massive room sized installation, a TARDIS interior with shelves, and lights, and formaldehyde, and dead flies. I line my boxes up in neat rows, branded and unbranded side by side, a crazy book shelf of analgesia, disease modification, nerve blocking, pump inhibiting. They daunt me, with their complicated chemical names, lying in a pile on my bed like forbidden sweeties, though they will taste acrid as fuck, or stick to my tongue if I skimp on the water or try to take them dry like a cavelier youthful me who could manage paracetamol with no water, easy.

They lie on my bed, all from different shaped boxes, with different denominations, winking the morning light into my eyes if it catches the foil right.   If I’m not careful I catch myself with a plastic cut, deep and vicious under a nail or down a finger pad, or worse I’m  am shocked and appalled at the strange directions my life took. If I let it, the task can make me wobble, and feel overwhelmed. And old, very old, before my time.

I feel embarrassed too. Ashamed. To be taking up so much medical time and resource, to be not getting better in what should be a straightforward transaction – ‘Take a pill = GET BETTER!’ I’m touched by the shadow of illness shaming too. It is impolite to talk about being sick, it is attention seeking and grabbing, trying to create a dramatic centre of attention you.

But illness is now a part of my life, sometimes it is what takes up the vast majority of my time. Sometimes it is all I have to offer if people ask what I have been up to. It obliterates my social self, leaves nothing left than a tired mummy doing tired mummy quiet things. A distant friend, someone who can’t come out, cancels late, has missed the latest show or exhibition. Not to mention other people’s health lives are boring too. Boring and infuriating. Especially rambling ones with no easy answers like mine, which mean I sound like a naysayer to genuine and kind offers of help or positivity, like I am trying to shut other people’s good hopeful ideas down because I’m belligerent, or negative, rather than because my illness doesn’t follow an ordinary, easy trajectory.

Other times I can’t be so fanciful, or maudlin. I haven’t got time. I’m busy,  I’m sick, or I’m just sick of being sick. The refill reveals bad days, like ones where I’ve forgotten a dose so they lie, languishing in last Friday’s box taunting me with my own ineptitude and slovenliness, because I got home late, fell asleep and woke too close to my next dose to double up. Or worse, I have orders to add in more tablets to the mix. Sometimes cut in half, sometimes in their own special weekly strip. That’s the biggest insult, so much more to remember, just when you feel like you mind is full of icy fog.

There can be such beauty in the functional, in such simplicity as this pill box though. A sharp knife, not a wrecking ball to wrestle it all into something manageable, broken down, contained. A neatness to remind me of simple good luck. For that’s what these represent.

Good luck to have access to healthcare, including specialists with a grasp on how to play with drugs to change disease course as well as cure or alleviate. Good luck to have access to medicine too, for many people might know what they need but simply can’t afford it as they aren’t lucky enough to have health care available to them for free.

Luck in the luxury of time, time to at least try and forge some beauty out of it. Finding the simple happy with a phone, and a filter, and a spare five minutes as the breakfast clatter builds downstairs and the day begins.

And failing that I can take the route of wry amusement, as noted by a doctor I know, that my pill box knows me so well it could be personalised. And can see that any week descends from order into WTF by Wednesday.



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