where are we at? where are we going?

i started this blog four weeks ago.

since then, my daughter has been to school twice. she’s on her feet each day for a short walk. she’s eating one or two meals daily at the table. that’s progress.

she has gone from taking 10mg amitriptyline to 20mg to 30mg (with option of upping to 40mg). her mood is brighter. she’s got her chatter back.

she’s in worse pain in the morning and in the evening. her pain is managed with paracetamol (1000mg three times daily), ibuprofen, and tramadol as needed.

we’ve had two meetings with the psychotherapist, one with an anaethetist. we are progressing with psychotherapy, all other care goes back to our GP.

we have referrals in place to the pain clinic at Great Ormond Street hospital, for paediatric physio, and for occupational therapy.

we face the fourth month of this with the realisation that any improvement in her condition is slow, but hopefully incremental.

i have to suspend my disbelief. at the moment, function = pain, yet we are told that a return to function = pain will go away (one day).

just not any day soon though, that’s clear.



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.

of course.

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?