Why I can’t spend my life in bed . . .

For a couple of months my district nurses have been telling me I must rest in bed during the day.  They did it again today, too, and after my shitty night I was in no mood, and lost it! I said, angrily, look, I’ll take to my bed, no problem – you find someone to keep me fed and watered, how’s that sound?

Flustered retreat.

Intellectually, I know that Continue reading

Leg protection for wheelchair users, especially with Lymphoedema…

Though not restricted to Lymphoedema. In my long experience wheelchairs have many ways of knocking lumps out of your shins! Using my powerchair, for example, or my Quickie Ti manual, in the event of a collision, the knees and shins bear the brunt of the impact. Not that collisions are all that frequent, but it only needs one to take the shine off your day. Or week.

Although Continue reading

Addendum to I cannot – seriously – continue to live like this…

Yesterday ended in the worst pain-related crisis to far.

In the morning, when the scheme manager saw the state I was in, she went off to shout at the GPs again. She got the guy who had turned out the previous day, and was as unimpressed as I’d been. Luckily, in the afternoon, someone else came out.

We had a chat – was I really suicidal? YES!!! And what can we do about that? Fix my intolerable pain!

We kicked a few ideas around, and finally settled on Gabapentin.

As he was leaving I asked, if it turned out there was no medical solution Continue reading

I cannot – seriously – continue to live like this…

After years – decades – of begging for effective analgesia, I got Tramadol, prescribed by APH and continued once I was out. This took care of what I think of as my “old pain” – the pain that goes back to the lightning strike in 1983 which damaged almost all of my joints – but did nothing for the increasingly agonising pain of my lymphoedema.

Twice last night I woke up Continue reading

I appear to be in trouble – again…

As many of you know, I recently spent 6 weeks in hospital, having come very close to starving to death. Now, almost 4 months since my admission to hospital, I appear to be in danger of vanishing down the same rabbit hole.

The big difference this time, of course, is that I know it’s happening, and why.

Last time it sneaked up on me – I got too ill to cook, then too apathetic to eat ready meals (and sick of them, frankly), followed by the crisis-provoking period when it all snowballed and I was eating next to nothing, and what I did eat nauseated me and had to be forced down. Throughout, since Christmas, I was vomiting so much the puke bowl was a constant companion.

It also took its toll mentally (so I’m told – I Continue reading

The best way to help a wheelchair user…

…is not to – when they’ve asked you not to.

At the risk of seeming like a grumpy old bugger – I’m not, but I am in a huge amount of pain today, which inevitably affects my disposition – will the able-bodied please resist the urge to spring to the “aid” of wheelies (power or manual), who don’t ask for it? Or, at least, take Continue reading

My GP is either an idiot, or he’s trying to harm me.

Conceivably both. Or, equally conceivably, he simply doesn’t give a shit. Inexcusable, whatever the truth.

As regular readers will know, I’m suffering from Lymphoedema, Lymphorrhoea, and Cellulitis, and the last is the big problem right now. A few days ago it was swabbed and sent for analysis. The results came back recommending treatment with an specific antibiotic, Flucloxacillin.

This was first prescribed over a month ago. Not only didn’t it work – it had no perceptible effect at all – it’s an amazingly inconvenient drug to take, having to be take an hour before food, or 2 hours after,** As I tend to eat only when I’m hungry (rather than the traditional three meals a day, whether one actually needs them or not), this creates problems.

**Or, as has just dawned on me (which shows Continue reading