I have had enough. Forever…

NB: To spare any misunderstanding, this is NOT a suicide note.

***

Ambition: Not to wake up one morning. Lurching from crisis to crisis almost daily & no end in sight. Really don’t want to live like this.

The plan was to post that on Twitter this morning, but I thought maybe it needs some clarification – very much not a cry for help, but of exasperation; desperation, too. I’ve been seriously ill for 65 of my 67 years, but thanks to an innate bloody-mindedness I’ve never once thought about just giving in to it.

Until now – Continue reading

Spoonless in the Kitchen – Update…

It was, as it turned out, remarkably foolish, yesterday, to do what I did just to demonstrate a point – that despite all the scrounger rhetoric, for chronically sick and disabled people, often the simplest of tasks is an uphill, frequently unwinnable, battle.

I knew I’d pay for it today – I’m not an idiot – I just hadn’t realised how Continue reading

Spoonless in the Kitchen – Making Vegetable Soup, the Hard Way…

This, by the way, is not an extended whinge. My intention is to demonstrate to the doubters, of whom there are far too many, just how difficult, for those of us who are chronically sick and disabled, something they take for granted as quick and simple, can be – like making soup.

And for cynics who say, and some who really should know me better have done so “If you’re as sick and exhausted as you claim, how can you write?” the answer is simple Continue reading

A day in a life with chronic illness and disability…

There’s a recent trend for chronically sick and disabled people to describe their lives online, in an effort to make the public, the DWP, and Atos, understand what life is like with a chronic, incurable condition – or conditions, quite often. In no particular order, the biggies are ME/CFS, COPD, O-A, FMS, heart failure and aortic valve calcification/stenosis, tachycardia, hypertension, plus a raft of less serious crap.

So, this is a look at what my average day entails, always assuming I’m not well enough to be able to get out to the pub (increasingly rare), or able to break the monotony by being well enough to cook for the freezer, because Continue reading

Cooking with a chronic illness – the reality…

 

Next week I need to cook, I’m getting a bit low on frozen meals and, frankly, I have a deep-seated need to do one of the things I do best, even though I can’t do it very often. To do this, I need to be able to rest as much as possible between now and then.

I have a new problem, fresh in this week, in that I can’t eat normal-sized meals** – I have to force them down, and then feel dreadful for hours after – so what I’m aiming for is well flavoured dishes that make me want to eat them, even if it’s only a small portion.

**And as I have only one meal a day, this is not a good thing.

The first job is to Continue reading

A question eternally asked, and eternally unanswerable.

The question, of course, is “Why me?”

I have to say that this is one question it’s never occurred to me to ask. One might as well ask, with equal validity, “why not me?”.  It simply doesn’t matter. Shit, as our transatlantic cousins are wont to observe, happens.

I might as well ask why I’m shorter than average. Worrying about why I’m not tall (it’s Continue reading

Some Ideas for Living with Chronic Illness…

About which all I can say is, they work for me…

A few days ago I was accused – in a nice way – of being too bloody-minded to die. It is, I suppose, quite true. At least that was also my late aunt’s view, and she’d known me all my life, so who am I to argue?

Of course, when your time’s up, it’s up – bugger all you can do about that – but I believe that the attitude with which you take on life can do quite a bit to make sure that day doesn’t arrive any earlier than it should, and hopefully quite a bit later – and that process begins in your head.

The opposite is also true.

So, having lived with serious illness, and disability, for all but my first 2 years, I thought that Continue reading