I came back from the pharmacy today with a mega bag of pills. You wouldn’t believe it, but in the next six weeks I’ve got to take 973 prescription tablets – and that’s if I don’t need the odd paracetamol or aspirin. I’ll also have to have 3 different sets of blood tests to check whether the more scary of these pills aren’t poisoning me. Erk.
I have high blood pressure. I have inflammatory bowel disease, with add-ons. I have epilepsy. I have developed all of these within the last six years - and I’ve now got further tests planned to see if I haven’t developed a fourth nasty..
I eat healthily. I walk, I swim, I cycle every week. I don’t smoke. I drink alcohol, but not to excess. I have a happy and cheerful disposition, plenty of friends, a family I am fond of. I am even friendly with my ex.
BUT I am a full-time family carer for my wonderful, clever, funny and kind Ms Fitty, and have been since the start of the millennium. Which means that over that time alone I have worked more years of European Working Time Directive weeks than I have been alive.
In term of other carers’ lives, it’s not unduly onerous. I have other work which I’ve been able to fit around it. I have 14hours respite a week. MsF is mobile, thoughtful and cheerful – we get on pretty well for a mother and daughter. But I am permanently scared and it takes it out of me. And she is scared, and it takes it out of her – and me too. Six years ago I was a different person, healthwise. Run ragged as a lone parent and sole carer, but fit as a fiddle. Finally, it has all caught up with me..
Ms F has taken to choking and stopping breathing, generally in her sleep. If I hear a strange noise, day or night , I run to her and pummel her back and she stops choking and starts breathing. But do I hear her every time? I don’t think so. Imagine never, ever, waking up without wondering whether your child might be dead?I wonder that , every morning that I wake. She does horrible things like having seizures in the bath (you are 16 to 18 times more likely to die in the bath if you have epilepsy – but she adores a bath so we make accommodation). She will drop down the stairs at a moment’s notice. I am pretty certain that one thing worse than having horrible intractable epilepsy is having horrible intractable epilepsy, and being quadraplegic. Her short term memory isn’t good. She microwaved a pie in a metal case for 4 minutes top whack today, before I stopped her. For one reason and another, she can never, ever be left alone.
Basically MsF has a choice of a safe life wrapped in cotton wool or the life she would rather lead – and the stress of supporting the latter is very hard.
So, who cares for carers?
Over the last six months I have been tweeting asking for support from prominent social activists, and not a peep.High profile ANGRY people, silence, my dear, silence. Well-known feminists. We female carers might as well be invisible. (Being a carer is not sexy enough for them to make their column inches, I guess). Newspapers, radio, tv – ditto, ditto, ditto. Care organisations, government departments, health professionals, charities, political parties, unions. Nada, nada, nada, nada, nada,
Lets face it, fellow carers. We might as well be invisible
So where do we go from here?
HOW can we shout and be heard when everyone around us, the whole of society, is playing the three monkeys as hard as ever they can?
Are we carers only to survive on the kindness of carers?
Only 469 carers have signed up to the Carers’ VIrtual Strike to date – a tiny proportion of our dispossessed and demoralised and unrepresented and uncared for whole – but to replace just these few would cost the state over £61.6 MILLION a year!
And unless someone cares enough to support me sensibly I will be one of the number that the state will have to find permanent cover for – a tragedy for me and for MsFitty – and a horrible expense to the UK.
At which point – particularly if the circumstances were tragic enough – all the social activists and angry people and well-known feminists and media and care organisations and government departments and health professional organisations, charities, political parties, unions blah blah blah will suddenly stop navel gazing and start talking of our plight because they will see in our plight something for themselves. Leeches!
So, carers, SHOUT OUT if you care for carers. Try and embarrass this form-over-substance world of virtual activism that doesn’t care a damn about the little people like you and me into caring. Not as much as we care, obviously. But even a little bit would do.. Get them to say to the world #ICareforCarers – (and then ask them what they mean by it!)