i am writing this watching a small plate of food going cold on the kitchen table opposite me.
today’s small step forward was to see if my daughter could eat lunch at the table. she’s managing to eat breakfast at the table, although is sore afterwards.
no, she said, she doesn’t want to, ‘it hurts me, i think you’ll find.’
i’ve left her to think about it. told her to let me know when she would like me to help her up so she can come through and eat.
when does boundary setting become behaviour management become punishment?
it’s a trajectory i am deeply uncomfortable with.
at our meeting last week, the psychologist said –
1) complete recovery is unrealistic
2) increased activity will result in a return of function
it seems to me that these take us in opposite directions.
her lunch is cold.
and i feel like a bully.
my daughter is determined to get back to normal. next week, she’ll be twelve. we’ve arranged a small party at home. she can do that.
then, today, a birthday invitation arrives to a friend’s party in a couple of week’s time. pizza – gluten-free too – at a restaurant fifteen minutes away. she says she’ll go if she’s up to it. so that’s a very definite maybe.
she needs a brace, her teeth are crowded and hurt. through all of this, we kept the appointment to see an orthodontist, she had impressions taken, and i booked follow-up appointments for her to have four teeth extracted. today, she should have had two teeth removed. at the last minute, she refused. she couldn’t go through with it. she raged in the car all the way home, furious at the pain within her.
i knew going to the dentist was a close call. and i was worried that if it all fell over at the last minute, which it did, it would set her back. crying worsens the pain.
i don’t know. there are days when close call follows close call follows close call.
we set small goals: eat breakfast at the table; dress herself; short walks out each day.
but life spins around her beyond that. she sees that.
she wants it back by the bucketful.
there was talk this week of needing to push through pain barriers. pain behaviour, boundary setting – tenuous terms that sat there, elbows out, in the discussion.
my husband and i came home from the second meeting with the hospital psychotherapist – shattered, relieved, troubled, wary. we talked. disagreed. argued. made up.
at the heart of this very difficult situation is something we both want dearly and need now to make happen. our daughter has to be able to stand up again without our help. if she could do this, it would break the seemingly vicious circle of dependency she has on us.
a friend called this morning and suggested occupational therapy.
the NHS has guidance on How to Access Occupational Therapy. they assess needs, provide advice on equipment to improve mobility, and will work with the affected person to help them recover their independence.
it is a moot point as to why the clinical psychology team did not suggest this.
coordinated, joined-up care? the hospital can’t provide that.
it is up to us, my husband and i, to make it happen.
patchwork. piecemeal. here, there, everywhere.
– is this the state of the NHS in the 21stC? or had i set my expectations too high?
i’m still trying to get my head straight after yesterday.
my daughter returned to school, her first visit since January. even a week ago, i was unsure whether this was going to be possible. we arrived when the other children were in class, and she spent half an hour with her home tutor looking at an exhibition about Anne Frank in the school library. we’d spent time the day before looking at online resources from the Anne Frank House museum, to help place the school visit in her mind.
my daughter has also had the support of a new friend, who suffers from chronic abdominal pain too – a girl who has already faced up to the experience of returning to school. she was able to say to my daughter that, yes, it was tough, but it was fun too. what had once seemed impossible for her, was possible. she’d managed it, and so too could my daughter.
whilst my daughter visited the exhibition, i spoke with her Head of Year, and we made plans – loose, flexible plans, to try and accommodate her return. another visit to school next week, this time to include meeting her school friends.
then, from there, we went to the hospital to meet with two clinical psychologists.
my daughter met with a psychologist separately. they discussed all she has achieved and used that as a basis to set new goals – eating breakfast at the table every day (she will be allowed to lie down after five minutes if necessary); agreeing what she could do to dress herself, continuing to go on short walks.
in the room next door, we talked about the limits of the gastroenterology service, whose remit it is now clear extends no further than diagnosis. they will approve a referral to Great Ormond Street Hospital Pain Service Clinic. pharmacological decisions become the responsibility of our family GP. clinical psychology support/therapy remains with the hospital.
any remaining expectations we had of coordinated, joined-up care were absolutely dashed.
we spoke at length about pain behaviour – pain the bully; pain the piper that makes the whole family dance its tune.
what emerged from the discussion is the importance of not falling, unwittingly, into patterns of caring that reinforce dependency. it took a little while for the implications of what was being said to become clear. it’s very very difficult as a mother to step back, to step away from a child in pain. what crushes me at times is this absolute sense of being locked into a situation we cannot break out of. i know my daughter needs to do more for herself. the more she is able to do for herself, the more likely she will be able to cope. from that comes control, and the ability to push the pain further and further away from herself. it does not mean she will be pain free. it means the pain will no longer be in control of her.
well, at least that is what we were told. at times i felt as if i was being read to from a textbook. presented with an equation that always balances.
and yet there are limits. my daughter cannot get out of bed, she needs help standing up from sitting down. she cannot sit up from lying down in the bath. if she had a hoist, maybe she would be able to pull herself up. but where on earth do we get a hoist?
chronic, debiltating pain reminds me of the Ouroboros, the mythical creature locked in an endless cycle of consuming itself.
here is a striking modern interpretation:
i look at this image and it makes me think. i need to do all that i can to help my daughter bring her pain under control, but i need also to be sure that the care i provide does not perpetuate a cycle of dependency. the whole family, her friends, herself – all of us need to be part of breaking the seemingly endless cycle that chronic pain presents.
but i cannot stand by as my daughter struggles to get out of bed. there are limits. she is my daughter. i am her mother. the relationship is inevitably one of dependency too.
today, i felt it. as if someone was pushing on my throat.
my daughter goes back to school tomorrow for an hour, her first visit since January. she wants to go back, but she’s worried about what the other children will think of her. when i told her that it’s only an hour, and that the other children will be class, she burst into tears.
‘You don’t understand!’
after school, we have an appointment at the hospital to review progress. we’ve been asked to write some notes on goals, including any issues we’re struggling with.
so i’ve made notes. listed goals and issues, and sent them on, in advance.
i’m not going to think about what tomorrow will bring. i could imagine it any one of thirty forty fifty different ways.
i’ll deal with it as it comes.
but i know that feeling, the feeling of pressure at my throat –
Bubbles in a bottle, 25/04/13
i’ve just uploaded a photography project to my daughter’s school – i’ve published these images on a separate page. it was her first major piece of schoolwork in over three months.
photography does not make her pain go away, but it’s a kind of daydreaming – her world glimpsed through bubbles in a bottle.
i started off this post wanting to discuss an article – a piece of research from The Royal Alexandra Children’s Hospital in Brighton – that looked at a number of children with chronic abdominal pain, localised in lower right-hand quarter of the abdomen. appendicitis had been ruled out in these children, (as with my daughter), but they continued to have disabling pain for months, sometimes years after that. the hospital decided these children should be offered an appendectomy after all – and, in something like 80-90% of cases, the pain resolved post operation.**
can i find this piece of research now?
my firefox bookmarks are in one long, jumbled list.
looking through my bookmarks makes salutary reading. they go from listing things such as How to Cook the Perfect Yule Log, The Universal Language of Lullabies, Descartes and Cartesian Coordinates, and Did Manet Have a Secret Son? to bookmarks almost entirely focused on pain – causes of pain, types of pain, pain relief, therapy. from the third week of January, any preoccupation with cookery or Descartes or art or music ends. it’s all set out in one simple, stark list:
…i could go on…but i won’t.
**i found the article, published in 2010: Diagnostic Laparoscopy and Appendicectomy for Children with Chronic Right Iliac Fossa Pain – An Aggregate Analysis – ‘Symptomatic improvement can be expected to be 88% immediately and up to 100% in the long term.’ published by the Journal of Paediatric Surgical Specialities