Hope is the thing with feathers
That perches in the soul
And sings the tune without the words -
And never stops – at all Emily Dickinson
I love these words and today I’m clinging to them particularly fervently. Because, dear readers, today I’m feeling a little hope-less.
I shouldn’t be – today’s been pretty good. Sun shone blue. Council sent me back a sizeable chunk of overpaid tax, hurrah. Cleared out junk room and made it a respite carer bedroom. (And because I am fortunate in misfortune I didn’t even have to worry about the bedroom tax while so doing) Lucky lucky me.
All’s for the best in this best of all possible worlds, yes?
Poor MsFitty continues in a bad way. Its not the seizures, more the mental confusion and strange pathways her brain is taking. And she’s not exactly seizure-free – she’s had six or seven corkers over the week and spent 9 hours in hospital when she was supposed to be on a birthday treat. I could weep..
And then I’m beleaguered by the many, many things that need to be done, that have to be done, that she wants to be done, and that she cannot do alone.
I’m helping her catch at the coat-tails of the education she still wants – and which our local authority is finding disgracefully impossible to supply.
I’m trying to track down the missing care promised by the health authority which vanished like some ethereal flower wasting its bloom upon the desert air.
I’m trying to help MsF manage to balance her interim meds (four separate scary drugs to hold things in place until she goes back to hospital as inpatient). 25mg too low and she fits for England; 25mg higher and she’s a zombie – only aware that she hates not being aware. Vile balancing act!
(Oh, and I’m tracking down the tertiary hospital appointment, come to that.)
I’m working out when I need to be away and finding and booking cover.. Lucky among carers to have found (poorly paid) work that can be done while caring for someone as un-leavable as MsF, I find working around the clock while caring around the clock leaves one all limp and floppy and isn’t good for the health.
My own epilepsy has required a recent change of meds – until they kick in, the sunlight slaps me in the face and knocks me down like a playground bully. Just as well I don’t drive.But in this car-centred world it makes a lot of things still harder.
And while this is going on my light bright, bubbly, enchanting daughter is become lumpen and apathetic – weighed down with chemicals and errant brain impulses. It would break the heart of a wheelbarrow.
And so many things make me angry. An MP claims £1600 for curtains for his second home. A DJ pretends he’s a used car dealer to save paying £1m tax. A twinkletoed footballer is worth £300,000 a week.
And a family carer is STILL worth nothing unless they earn under £100 a week, In which case they get £59 carers’ allowance.
Priorities in this country stink to high heaven.
So folks, I need to cling to that thing with feathers because blind hope is the only help available.
Family carers are going on - virtual – strike in June. Please sign up to support us. Actions speak louder than words – but for carers, words are all we have. We can’t withdraw our labour without endangering those we love! Give us some hope, please