Where is my respite – from me?

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.)

4 thoughts on “Where is my respite – from me?

  1. Hi Ron,

    Threre,s no rest for the wicked Ron, so they say. No, unfortunately you can,t tell your infirmity to piss off, your stuck, nailed to your own cross, waiting and hoping for miricales. I just hope against hope something will turn up, that,s all that keeps me going, no respite,s not for the likes of us.


  2. I agree Ron. I think that better drugs and a bit more forward thinking by GP’s and consultants would at least be a step in the right direction. I know that depression and anxiety can be ‘non-conditions’ on their own, but, in order to get a once productive individual back in the ‘game’, some willingness to prescribe certain medications would really be the way to go in my case. As you have, I have been through the many dosage and medication changes that accompany any condition that warrants medical treatment, and we just want to get it right! FFS! 😉

    • I’m never getting back in the game, but getting out of my flat would be an improvement!

      Three weeks ago, I wrote a long letter to my GP, challenging the findings of a GP pretending to be a consultant (officially, “a GP with a special interest in cardiology” which is what I got instead of a consultant cardiologist), who, I believe, screwed up my echocardiogram interpretation. My symptoms, textbook for the aortic valve calcification and stenosis (and maybe heart failure, something else now in dispute), that they found, she wants to find another reason for. So I asked for a second opinion, as we have a reason, and that says I have maybe a year to live – two, tops – didn’t even get a reply.

      And people wonder why violence against doctors is increasing.


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