It occurred to me, talking to someone on Twitter, that carers can get respite breaks, so that they can get away from their charges for a while. Fair enough, no doubt many of them thoroughly deserve – and need – a break, but what of the rest of us? Where is our respite from ourselves?
Like very many disabled people, I have to look after myself, take care of my own medication, keep myself fed, keep myself clean, and do my own laundry (though I gave up on ironing a long time ago – can’t even lift the ironing board now!).
I have to do all this no matter how ill I feel, no matter how much pain I’m in, or how hard it is to breathe (I get breathless typing, FFS!), or how tired I am, and no matter just how fucking fed up with the whole shooting match I might be. I’m also expected to do my own cleaning, of which there is not the tiniest chance in hell. The kitchen’s clean – no point in poisoning myself – as for the rest…
Where the hell is my break? Not to mention the breaks of the many thousands of others in the same boat?
Do doctors even understand, on any level, the degree of despair** caused when every day is just as horrendous as the one that preceded it, and the one that will, inevitably, follow it, for as long as we have left to live? I really don’t think they do, simply because the vast majority have no conception, beyond the purely theoretical, of what it means to be chronically ill and in constant, severe, pain. And without even the option to say “Sod it!” and just stay in bed all day, because it’s just not feasible if we want to eat, and drink. I haven’t slept in a bed for 5 months, never mind spent the day there, and I’d sell my soul to be able to. Others, of course, are worse off than I am, which is no consolation at all, frankly!
**And I’m not talking about depression, that’s entirely different and on top of all the other shit we have to deal with, for many of us.
After 27 years of this, I’m getting pretty close to my limit, and being housebound simply ramps things up enormously.
As regular readers will know, I have a suicide kit. It’s there for when life becomes utterly intolerable. It also, right now, serves the same purpose as the recovering alcoholic’s hidden bottle of scotch – a daily, hell, hourly challenge to stay away from it.
And some fail.
(No, not a suicide note – just making a point – that those who need respite the most are denied it, and the consequences of that might well be terminal.)