little by little, bit by bit (7)

after a rotten night, my daughter has had a better day today.

the images below complete a series taken over the past week. the goal, to get her on her feet, outside. she’s taken a photo each day and created a piece of work for school – the first substantial piece of work since all this began in January.

i was skeptical that anything meaningful could result from a situation of such disabling pain – quite literally having to drag her to her feet, and then keep her upright when the pain buckled her knees. i was worried that the effort would pitch her backwards.

but she did it. she’s a brave kid, and i am very proud.

i think her images are remarkable.

| day one | day two | day three | day four | day five | day six |

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2 a.m. red flag flying

pitched out of sleep half an hour ago by my daughter howling with pain: pain in her abdomen and dreadful pain along the top of her right thigh.

she had refused all pain relief yesterday.

she has settled with liquid paracetamol and ibuprofen and is asleep again.

i’m awake. the night stretches out, black and red.


decisions, decisions…

my daughter has gone to a friend’s house for an hour.

what should i do with the free hour i have? should i:

a. dash out to the shops?

b. write a two page summary of my novel?

c. go for a walk and remind myself that the world extends beyond the end of the road?

d. go back to bed?

e. weep?

f. stop and have a cup of tea with said friend’s mum?

(f) ­čÖé & with thanks to said friend’s mum for asking x


little by little, bit by bit (6)

the photos that appear here are building into a series, which my daughter began six days ago.

my daughter is in worse pain today and refusing to take the medicine she has been prescribed. she says she has had enough of it. she says it does not help.

i didn’t think i’d be able to post an image today, it was difficult getting her to her feet and dressed. but she made it to the end of the street and back, and came home with two images. the latter shows my arm – it’s as if she’s seeing me from the perspective of a much smaller child, (smaller than she is in relation to me). it made me cry.

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| day one | day two | day three | day four | day five |


4.30 a.m. red flags

it was after 11 p.m. before my daughter fell asleep last night.

she gets spasms of pain that jolt her awake. she’s had a number of bad evenings in the past week, the pain tipping her from sleep.

i remember after she was born, waking before she did in the night. i used to think it funny – a kind of trip wire. maybe that’s hardwired into me now.

it’s times like this when, cupped in silence, i find it hard to square my daughter’s symptoms with the diagnosis.

Determining whether CAP [Chronic Abdominal Pain] is physiologic or functional can be difficult. Although the presence of red flag findings indicates a high likelihood of a physiologic cause, their absence does not rule it out. Other hints are that physiologic causes usually cause pain that is well localized, especially to areas other than the periumbilical region. Pain that wakes the patient is usually physiologic.

The Merck Manual: Chronic and Recurrent Abdominal Pain

other red flags include: persistent pain that is localised in the lower right-hand quadrant and pain that is worsened by movement.

this characterises my daughter’s pain exactly, yet no-one has assessed how movement worsens her pain.

what’s our experience? once placed in the FAP box, it’s very difficult impossible to get out. it’s a deep, deep box. you have to haul your red flags a very long way before anyone will notice they are flying.


little by little, bit by bit (5)

we drove a short way from home today and returned with three photos and a video.

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it was good to get out and for a handful of minutes we had great fun.

| day one | day two | day three | day four |


Pain Less

a friend has pointed me in the direction of a new exhibition on the future of pain relief – Pain Less is curated by the Science Museum, and runs until 31st August 2013.

Pain Less explores pain from a number of perspectives – uncovering the stories of those who live with relentless, chronic pain (estimated to affect one in five of us), and those who, remarkably, feel no pain at all.

i had a go at the game Ouch – where you use a variety of strategies to zap pain – but i found this quite stressful as was so bad at it! still, it makes several points well – that pain killers become less effective over time, and the experience of pain can be modified by mood.

there are some further resources at the Pain Less blog, including a short video on the relationship between mood and pain – Pain in the Brain: