This last week has been a total bugger. Every time we thought we were facing the worst – something else would come along and hit us in the face. It became almost funny – waking up to news of bad tidings every day.
Almost funny but not quite. In the last 7 days Ms Fitty lost her place at college for being too ill. She started new, even more worrying seizures. She continued to have too many bog standard but dangerous seizures. We travelled to London to hear that she has literally tried every single drug for her condition without success. (So that limits hopes for the future a bit. A lot). A local hospital confirmed her shoulder injury will need an operation and she will continue in pain until this is done. But she can’t have an operation until they are guaranteed 3 subsequent seizure-free months. (Which means it will happen on 1st of Never. Ms Fitty’s not had three fit-free weeks since this whole malarkey started 13 years back. In the last 3 months she has had 27 bad ‘uns. Oops .. sorry, make that 28, as of now. Her knee injury of 5 years back is still undealt with for similar reasons, so on top of everything else, I have to keep reminding her to put on a caliper.)
This week – as every week – she has needed me to be supporter, advocate, carrier, organiser, witness, recorder, medical adviser, emergency nurse, resuscitator, diary, alarm bell, detective, dietician, energiser, personal trainer, lifter-upper, uplifter, adman and constant companion. Ms Fitty has her boyfriend, and the wonderful Sheena to come in for emergencies and I put upon a patchwork of good friends, but she needs someone with her all the time. And I mean all the time. Ms F has had frequent seizures in the bath, shower, down the stairs yada yada yada. Really I can’t do it all on my own.
Last year I finally got respite money and I’ve been advertising ever since. The trouble is, I can’t get anyone prepared to help.
In the middle of which I’m trying to work fulltime – largely from home – and manage my own health problems. Not neglect the poor neglected other two. And support my 89 year old mother to continue living in independence 70 miles away.
How do I do it? Well I don’t watch tv for starters. I sleep very little and I don’t have a social life. And I take Ms F for uplifting long country walks to stop myself going mad.
Now I do recognise that however awful things are, I’m lucky in comparison with the great proportion of the world. My tiny income (we’ve been living well below official poverty level for the entire millennium: career impact of full time caring on sole carer/lone parent) still puts me in the richest 8% of people in the world. We are lucky to live in the UK. We are lucky to have an NHS. I am personally lucky to have secured a roof over our heads, to be able to afford food and (just about) warmth. We are supported by wonderful doctors and a few good friends.
But in our last – horribly bumpy – 24 hours (I won’t bore you with the details of the dramas that make up routine everyday life for Ms F and me) I have most of all been helped by people whose lives are as bad as mine: the kindness of carers. The acquaintance who saw poor Ms F trying to hold me up when I collapsed on a station platform (you couldn’t make it up), and dashed across a bridge and missed her train because she could see we were in need? She’s looking after her 94 year old mother with Alzheimers. The closed Facebook group who clustered round when I poured out my despair? They are parents as badly off in every way as myself. The friend who made me laugh out loud by talking about erotic prints instead of sympathy? We met when our children were longstay patients together.
This Christmas, why not Adopt A Carer? Spare a thought for the invisible army – the people you see in passing who are coping so positively with parents, partners, siblings, children who need round-the-clock care and support. Many of us can’t get out or can’t get out unaccompanied. We are no different from you – tomorrow you may become one of us. Do as you would be done by. Come round with a bottle. Buy us a coffee. Take us out for half an hour, so we can get our shopping done. Don’t treat us like saints or victims – make us laugh.
That bright smile may well be plastered across an abyss of loneliness and despair.