A change is gonna come…

…HT Sam Cooke.

If my life doesn’t change, and for the better, things are going to go very badly for me, so I need to make a major effort to ensure that it does change.

Of all the things I used to be able to do – backpacking, photography, rambling, cycling, sea angling, fly fishing, even drinking and x-rated activities, only one remains remotely doable – photography. And yet I can count the photographs I’ve taken over the past year on my fingers, and still have a couple left over.

There are several reasons for that.
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A tweak to my profiling bed…

Check out this post first.

My profiling bed has proven invaluable in the past for getting a good night’s sleep (not so much now, but I’m hoping that will pass), and also for enabling me to sleep – or at least rest these days – without pain. And to elevate my legs to encourage the fluid to drain.

One thing it hasn’t changed is my aversion to the dark. Without light I become extremely disorientated, a problem that first made its presence felt about 4 years ago and is showing no signs of going away. So I have a nightlight, an 8W mini fluorescent bulb in a table lamp on a chest of drawers behind the head of the bed and to one side. Continue reading

Are you fat because you’re sick and/or disabled? I am…

And I’m tired of the bigotry.

I posted the following comment after this Guardian article GPs urged to send obese and overweight to slimming classes, to attempt to redress the rabid toxicity of the comments thread and of the article itself.

Just one question – why am I, last time I looked, the only one doing that?

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The Curse of Compression in Lymphoedema…

What follows is a letter to be handed to my nursing team on Wednesday.

***

Notes on Compression…

May 26 2014

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Let me start by saying that I feel very strongly that nobody involved in my medical care truly grasps just how much pain I’ve been in this past year, and with few exceptions, like today, still am.

It is, and I say this with no melodrama intended, a very rare day when, as a direct result of that, killing myself doesn’t seem a better choice than carrying on. There is simply no end to the pain, and I have barely slept as a result for almost 2 months. I seriously doubt my ability to carry on much longer if nothing changes. The only reason I’m still here is that I hope something will change. That hope is wearing very thin.

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Pressure-reducing Leg Rest for use in Lymphoedema…

I came up with this DIY design almost  year ago, but was too ill to make it myself. Looking at it you might wonder why that should be so, as it’s very simple – the question should give you an idea of just how ill I am (plus I only recently had the idea of using the toilet frame). Even now, and I’m very much better than I was a year ago, it was exhausting just fetching the frame from the bedroom and cleaning it up (it’s not been used for years – I have another in the bathroom).

I’m supposed to elevate my legs, particularly my right one which is worse, by far, than my left, and currently sports a blossoming ulcer (my nurses tell me it’s showing signs of healing – I hope they’re right). Continue reading

Spicy Vegetable Soup with Soya Beans and Shiitake Mushrooms…

Note – the soup is horrible!

It could be my sense of taste – it comes and goes. The soup really can’t taste of nothing – but it seems to.

I’ll know more tomorrow.

 

Today, winter has staged a comeback – it’s dark, dank, and dismal. No-one seems to have told the birds, though, and they’re singing their feathery heads off. Of course, what they’re actually saying is, “This is my tree/telephone-pole/TV aerial, and you lot can fuck right off!”. And one of them is doing a pretty fair imitation of geese and an angry squirrel.

Anyhoo, it’s definitely a soup day, and time for a new recipe.

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