A day in a life with chronic illness and disability…
Posted Sep 24 2012 12:05pm
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 cooking every day just can’t happen, and ready meals really suck – I eat just once a day, so it has to be something I enjoy, not simply endure. I did manage to get to the pub last Monday, but I’ve been in dreadful pain ever since – running up against the law of diminishing returns, then – whatever I get from going out increasingly has too high a price.
Remember, boys and girls, that this is a million miles away from what I want it to be – like very many others, I simply don’t have a choice:-
06.00 Take first meds of the day. Go back to sleep, hopefully.
Later – how much later varies, usually before 10.00 – get up, by which I mean move from couch to computer three feet away. Take inhalers.
Drink water as needed throughout day. And in between meds I’m usually online, writing, reading, or spending too much money.
10.00 Take diuretics – pee as needed.
12.00 More meds.
13.00 And inhalers.
15.00 Or thereabouts, refill filter jug in fridge.
17.00 More meds.
18.00 And more inhalers.
19.00 Eat. Leave computer for couch, switch to iPad. Read and/or watch TV.
21.00 Yet more meds (antibiotics for which the need varies). Refill filter jug for morning.
23.30/00.00 Last meds of the day, including inhalers. Put together first batch of tabs and caps for tomorrow. Sometime between then and 03.00 I’ll get to sleep. Currently not sleeping much at all.
Repeat ad nauseam.
So, really, is it any wonder that, like so many others, I’m depressed and, at the moment, suicidal, and have absolutely no desire to talk to anybody because I simply don’t have the energy to spare?
Yes, I know I write blog posts and spend time on Twitter – that’s a different, and as yet unaffected, part of my brain which still functions reliably. The part labelled “Conversation” is, right now, an echoing void.
And there’s an immense attraction in the idea of taking a whole tub of DHC, and just bringing the darkness down…
I’m not going to, though, no matter how tempting it is, because I still cleave to the belief, against all the evidence so far, that tomorrow, next week or next month, might just be better.
And also because it would be, in a way, selfish, in that it would upset too many people, some of whom seem to feel, rightly or wrongly, that the world is a slightly better place with me in it.