ME - the horrible, hidden disease

I have friends who suffer from ME. Most of them, I haven't met, even those who live nearby, because it's so bad that some of them have to live most of their lives cloistered in darkened, soundproofed rooms.

People don't know about this disease, or if they do, they only know a little about it. Until recent years, my own perception was that it was characterised by an overwhelming sense of exhaustion, making it impossible to do very much, and the more you did, the more exhausted you felt. And yes, there is that. But there is so much more, that I knew nothing about.

I've asked some sufferers to describe their own experience of living with ME, in their own words, and I'm going to reproduce what they've said on some new pages on this blog. Please read at least some of this, especially if, like me, you weren't aware of some of the symptoms.

I'm a musician, and I have a lot of friends who are also musicians. Last Christmas we did a fundraiser in our local village hall for those who'd been affected by the Cumbrian floods. It was a great success, and the audience thoroughly enjoyed themselves, telling me they'd be happy to come to more events of the same sort. I've been meaning to do another one ever since. Well, now I have a charity that desperately needs funds - ME Research.

Please have a look at their website and consider donating to research for this poorly-funded, and little-understood disease. You can read the official explanation  here: WHAT IS ME?

I haven't set the date for the fundraiser yet, but the first one should be at the end of September if things go to plan. I'll print out our sufferers' statements and plaster them round the walls, and make sure everyone who comes along knows exactly what we're fundraising for.

In the meantime, please read. I'll copy and paste patients' statements as I get them.
You'll find links to these pages on the right --->

Thank you.

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Things from our attic (1)

I was up in the attic over the Easter holidayss, trying to sort out the jumble of boxes and stuff. Here are 4 bowls which belonged originally to one of my ancestors - one of the many James or John Robertsons - not sure which one. Probably an uncle rather than a direct ancestor - my grandfather's brother was James Robertson, and he also had uncles James and John. The bowls are made of ebony with engraved ivory inserts; they live in little bags, one of leather, and one tough brown cloth with a leather handle.

The leather bag was lined with a piece of hessian sacking, and although I've often taken the bowls out to look at them, I've never examined the sacking before. It's quite interesting, as you can see from the 3rd photo. I don't think there's any particular connection with the bowls - I think my granny (Allison Robina Robertson), to whom it's addressed probably just used it to line the bag for whoever was using the bowls at the time. Can't help wondering what was sent from Melbourne to Edinburgh, wrapped in hessian sackcloth. I recognise the name "Newcombe" - I think she was a friend of my granny's, and of course Granny's twin sister Hellen had married an Australian and moved to the antipodes with him, so there's a connection.

My Perthshire Robertson ancestors (the male ones, anyway) were keen curlers in winter, in those long lost days when the lochs used to freeze solid in winter; in summer they'd take to the bowling greens.

ALLY'S BIZARRE MISHAPS: No.4

On Friday - on this Friday, of all Fridays - I was punctured, twice, by thorns.

First thing in the morning, up the veg garden with with the dog, my peace was disturbed by the next door geese (those big white farmyard geese - they have a large flock of them) having a bit of a barny, and making even more noise than usual. So I nipped up on top of the dyke, where there's a hole in the hedge (this is where we stand to take photos of auroras) to get a better view of the local Goose War. It was interesting watching several of them ganging up on another one, chasing it with wings flapping furiously. Fine. Curiosity satisfied. But on the way up on to the dyke, I very slightly lost my balance, wobbled a wee bit, put my left hand out to steady myself, and managed to puncture it on a big thorn in the hawthorn hedge. It hurt! It bled! I took it back into the house, cleaned it up, put a plaster on it, and more or less forgot about it.

And then, thorn attack No.2. Later in the afternoon, on a walk with the dog, we were crossing one of those impossibly narrow footbridges that cross drainage ditches in Lakeland fields. I put my right hand out to brush aside the overhanging vegetation, only to discover too late that it consisted mainly of brambles. So: thorn injuries on both hands now.

Only then did the significance of the day occur to me. Good Friday - crown of thorns. Hmm... Was somebody up there trying to tell me something? Maybe I was supposed to be in church on Good Friday afternoon?

Well, I dunno. But the injury on my left hand is still hurting, and I think it may be infected as it's swelling up a bit, and the doctor's surgery doesn't seem to be open at weekends, and since Monday's a bank holiday I may have to wait until Tuesday to get it seen to. By that time my hand may be the size of a balloon, which will make playing sax for the morris dancers on Easter Monday a bit tricky. I'll try doing some phoning in the morning and find out what one's supposed to do in these circumstances. It's not bad enough to go to A&E, (not yet, anyway!) and besides I think I've heard the A&E at our nearest hospital (Whitehaven - not really near at all!) has closed now. You can see I don't have much to do with doctors or hospitals - I'm very much out of touch with procedures.

Guess I should have gone to church....

POETRY CORNER

It's a while since I wrote a poem (as opposed to a song).  It might end up with music, but right now, it's a poem. Click here to see it.