Author Archives: Ron

About Ron

I'm an ME survivor (so far anyway), 27 years and counting. I'm - at the time of writing - mostly housebound. This restricts me to mostly sedentary pastimes - reading, blogging, my website www.ronsrealm.me.uk and cooking, when I can. I also have severe COPD, the precursors of which - asthma and bronchiectasis - resulted from simultaneous whooping cough and measles at age 2, either one of which was capable of trashing my lungs. Together, I was seriously screwed, When I'm able to get out my primary interests are birding and photography (film and digi), as they fit my current abilities. There used to be others, like camping and fishing, but for now they're out of reach. I used to write a magazine column, about computer issues, for people with ME (CFS if you're American), but now I put all my effort into my website. I also operate an email advice service for people with ME and computer problems. I've been running this for three years and have only been stumped once. Thanks, Steph!

The View From Bed 3 – Part 3

These documents will form the first line of defence against the staggering degree of incompetence I experience on a regular basis in hospital. I consider this necessary because, if you extrapolate what happens to me across the entire patient base, people must be dying as a result, and I’d rather not be among them. This, of course, is no guarantee that I won’t be, but I don’t know what else I can do.

I thought it appropriate to start by providing a list of all that is wrong with me, as I strongly suspect – in fact I know** – that my records are incomplete.

**I have an unredacted record of my stay in 2011, during which my heart failure was diagnosed but not recorded. It includes a copy of the ECG, which clearly flags multiple anomalies, but there is no sign of my diagnosis, Finally, though, after 3 years of denial, I’ve finally got a referral to the Heart Failure Nurse service. My first appointment is next Thursday.

Continue reading

The View From Bed 3 – Part 2…

That’s a bit quick I hear you say, querulously.  Well, yes, but some people have read the first part by now, so adding to it would mean they missed the addition, so there.

Anyhow, a nurse said to me, that my GP had phoned with instructions that my Oramorph should be titrated down to half the dose. I exploded, she scurried off and got me the full dose. And I thought WTF does he think he’s playing at? He has no idea what state I’m in, how much pain – a hell of a lot as it happened, far more than at home as the toilet was so much further away – and yet he’s interfering. Or is he? Continue reading

The View From Bed 3…

Apologies in advance if some of this is a bit rambling – whenever I’m in hospital my brain turns to mush. That’s not Bed 3 above, of course, that’s my Clockwork Bed at home which, in terms of essential adjustability is vastly better than Bed 3.

If you’ve had the misfortune to be in hospital, you’ll know there is little to do but watch and listen to the passing show – particularly the interplay between patients and doctors – which, in my case, is The View From Bed 3. Continue reading