Manual Wheelchair, Kitted Out for Hospital…

Towards the end of last year I made crutch holders for my manual wheelchair. Then, later, bought a pair of SmartCrutches which, because of their radically different design, dragged on the floor. I’ve finally got round to fixing that.

clip_image002These are my SmartCrutches. As you can see they differ substantially from normal forearm crutches, not least in that the hand grip isn’t attached to the shaft. And no, I don’t have blue carpet and pink furniture – these were taken in the communal lounge.

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Disabled people need Out-Patient appointments that suit them, not that suit the hospital…

What follows is a letter to the hospital in a last-ditch attempt to stop them giving me OPD appointments that I cannot possibly keep as they are far too early.

The Vascular Clinic, in particular, is a serial offender. In 2013, as I was leaving the clinic, they gave me an 08.30 appointment. I said it was too early. They said, OK, 09.00. No, still too early – I can’t cope with anything much before late morning. If you insist on 09.00 I won’t be here.

They did. I wasn’t.

They dumped me from the clinic.

The letter has been redacted so that no-one can be identified, except me of course. But look, if you do manage to figure out to whom I’m referring, don’t put it in a comment, it won’t be published. I’m having enough trouble without pissing them off!

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Chunky Beef and Bean Soup…

I had a bowl of a well-known chicken soup a few days ago – 2 cans – because I had no home-made soup, and promptly went down with colitis the following morning. Then I stumbled across an article claiming that emulsifiers used in processed foods have been shown to cause colitis, Crohn’s, and similar conditions. At which point I swore off processed foods except in the direst emergency, and as soon as I recovered from the colitis, the anaphylactic reaction caused by Doxycycline that made me look like the victim of a back-street lip implant, and a mysterious rash, I resolved to make a fresh batch of soup. This is it.

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The Curse of ME Brainfog and Painfog…

I bought my first computer about 1991 (40MB HDD, 4MB RAM!). I currently have 7 (five tablets, a laptop and a desktop), and in the period from 1991 to now, I’ve replaced about a dozen desktops and laptop machines to keep pace with hardware and OS demands. I’ve built a couple too. All things considered, I know about computers.

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Goodbye Food-Induced Pulmonary Oedema, Hello Good Night’s Sleep…

The last of my Pulmonary Oedema “food triggers” has been laid to rest. This is good in that I can now put back into my diet old favourites that had been banished out of fear. If you’ve ever experienced Pulmonary Oedema you will surely, like me, be prepared to go to absurd lengths to figure out why and avoid another bout, not least because it’s potentially fatal and it’s a hideous way to go.

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Pulmonary Oedema – the cause at last?

Note: I’ve been up since 03.30 and can barely function, so there might be some typos I’ve missed.

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Among the notional causes of my Pulmonary Oedema, none of which have proven valid in the long term, was one which has proven to be the culprit. Quite early on I suspected acid reflux might be the cause, but dismissed it out of hand as there was absolutely no evidence to support it. Until now.

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The Future Quite Definitely Has Wheels…

It’s been only three days since I took to my wheelchair more or less full time, and I have no doubt at all that this is the way forward.

It’s not perfect – my flat is largely unsuitable but I don’t want to move as my neighbours are reasonably quiet – and if you’ve never lived in a flat, you have no idea how important that can be.

There’s another reason, too – I don’t have the spoons to survive a move. My last move, five years ago, wiped me out, and I’m a hell of a lot worse now than I was then.

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Are Pulmonary Oedema triggers a myth?

Well, last night I put the last of my Pulmonary Oedema food triggers to the test.

For those who missed previous posts on the subject, Pulmonary Oedema is a condition caused by excess fluid in the lungs, and is potentially fatal. It damned near killed me in August last year and has settled in as a chronic condition which usually strikes at around 04.00. The Mayo Clinic covers it in depth.

Over the last few months I’d identified various foods which would trigger an attack, by far the worst being chocolate. That’s what put me in hospital (pigging out on Jaffa Cakes), and other forms of chocolate have done much the same, but less severely. All fatty foods have triggered attacks too, as has Croft Original sherry.

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The Future Has Wheels – Part 2…

Well, I’ve spent the afternoon and most of the evening in my chair, and my pain has been greatly improved. In addition, the dramatic worsening that happens every night between 21.00 and 21.30 simply didn’t happen (though it’s setting in now, at almost midnight). For the second day in succession I’ve got by on two shots of Oramorph. Yesterday that was a major battle, today it wasn’t.

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