Warning: do not overheat your lavender wheat bag

I've been wearing my lavender wheat bag like a stole these last few months, I have intermittent neck pain - I'll get a sudden creaking noise like a tree, and a short sharp pain, then toothache in my neck/left shoulder for the rest of day. Last night, I overheated the bag in the microwave, I scorched it - amazing it has not happened before, the scorching - it smelled like a singed dog. I used it anyway, took it to bed and woke up surrounded by wheat kernels, scattered like confetti. The scorched bit had burst. I am sad. I love this wheat bag, is excellent for back and neck pain, though sometimes it does burn your skin if you're not careful.  It feels like a pet has died. But time to get a new one.

In love with Robert Hass

I hurt my fucking back - again - this time taking laundry from the basket (the tiniest 'wrong' move can fell you, but you can't avoid it as you don't know what it is 'til too late), so I spent last night eating Solpadol 30/500 and reading Robert Hass. I have fallen for him bigtime, his poetry is splendid and I can't believe I had not heard of him before. He reminds me a little of Lydia Davis, another writer I recently discovered (and love).

'It is good to sit down to birthday cake

with children, who think it is the entire point

of life and who, therefore, respect each detail

of the ceremony... '

Robert Hass,  'September Notebook: Stories'

*

And I can't resist this new review of The State of Me. Always pleased when a reader comments on the writing as well as the (hugely important) message about the illness.

Three things

Three things I've learned:

• Balsamic vinegar is a bastard if you spill it, you get an ice rink on your kitchen floor.  

• My new printer (Christmas gift, old one was gubbed for six months, it was printing stripes down the margins) only works if I switch it on before laptop. Otherwise, I get relentless, rage-inducing messages about unsupported ports.

• Voltarol  deep heat treatment is more helpful than diclofenac tablets. I am pleased.

And sorry to be  a book bore, but I just saw this on Amazon.

Blowing your own trumpet

My back is fucked again, really it is getting ridiculous, I shouldn't be at my laptop but there are things to say.

Today is RLS day, wonderful Robert Louis Stevenson. This is the first official celebration.

I was,  many years  ago, shortlisted for the RLS Memorial Award on the strength of a short story. I didn't win, which in a way was good as I would not have been robust enough to go - everyone cycled through the forest to get their groceries - and that would have been  shattering, two stays in France being hijacked, my year abroad in 1982/83 when I first got ill, and this prize, two months in a remote, idyllic retreat.

But at least I was considered, my voice was heard, and that is what is maybe more important.

It strikes me again that here is so much pretense with this illness, you pretend you are more well than you are - for many reasons.

But in the end, you can't pretend, you can't keep up the mask. You can't sustain things.

And when you are in a severe phase, of course there is no pretending. Some people never get out of the severe phase: the wonderful Countess of Mar  in the House of Lords yesterday.

A pack of ME Research UK Christmas cards just arrived,  there are so many charities needing support, I always spread my choices over four or five. It can feel a bit like blowing your own trumpet when you send ME cards. My friends and family support me all year round and here I am reminding them that I am ill, but the money has gone to research so that is fine and dandy. But there are Amnesty International, Down's Syndrome Association,  Alzheimer Scotland, children with terrible diseases, starving children, children with no clean water, you would go mad if you thought about everyone who needed help.

And the abandoned cats in Greece (just saw an ad for them in The Big Issue).

Now I am off to do some cobras and corpse  positions (yoga).

Clanging

An MRI scan's like being in a dream state - hospital gowns and tunnels of white light - while surrounded by road diggers. It is so noisy it makes you want to laugh. And the 'bed' is actually very comfy. During the 'quiet' intervals I found the whole experience quite relaxing: in a capsule, cut off from the rest of the world. I could've stayed in longer after the clanging finally stopped.

All the fun of the fair (again)

*Fabulous response by Prof Malcolm Hooper to very misleading narrative in last weekend's Observer:

No right-minded person could condone any campaign of vilification against scientists (“Chronic fatigue syndrome researchers face death threats from militants”; The Observer, Sunday 21st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years.

** Max Pemberton's edited article which appeared in today's Telegraph (29 Aug). He blocked me on Twitter after I'd responded a few times to his lack of substance (he blocked others too), I have never been blocked or barred from anywhere online, I feel like an insurgent, I shall wear my Max blocking as a badge of honour. He has toned things down, the original, more offensive version here, over which I lost sleep on Friday - I'm sure many did - I was so upset by Max's little indiscretions. He also described the ME Association as 'disingenuous' simply for looking out for the people it represents (now edited out). Yes, they are weavers of fine tales, these blinkered medics. Purveyors of fine untruths.

*** Invest in ME have issued a letter to the Press Complaints Commission regarding recent ME articles in the media which have presented only one viewpoint.

I'm not sure what Simon was doing when I was in a neurology ward having a plasma exchange for my false illness beliefs in 1984, but I'm sure as hell Max was still potty training.

Am having an MRI scan tomorrow - sciatica - and one of my brothers told me it's a 'noisy clanging bastard' - the machine. Still, will be a pleasant change from the persistent din of Wesselymania.

All the fun of the fair.

Shapeless

With typical aplomb I hurt my back on Boxing Day - brushing my teeth. I was forced to stay in bed. At least - at last! - I finished Wolf Hall. Such relief! Am in a festive haze of NSAIDs and co-codamol. It suits the time of year, such limbo, no man's land, neither here nor there, everything is shapeless. I surprised myself by watching a whole episode of Top Gear, they drove across the Middle East. Tomorrow, I will be glued to Dr Zhivago and cry my eyes out. Then my nephews come, I hope I am in less pain. I leave you with a fine post from Digitalesse on self-help books. I still have one of Dig's photos on my kitchen wall, a beautiful white cup.

Balls

I bought three tennis balls today. Not to play tennis, obviously. And I only wanted one, but they only come in tubes of three. (And why are they sealed like tins?) I've discovered you can do self-massage with tennis balls, so decided to try as I am at my wits' end, having tried every back stretch known, and I can't keep taking 30/500 co-codamols. I feel like an impostor in sports shops, everything seems alien. Still, I told the woman why I needed the balls and pointed to some glittery ones I liked the look of. Those are for hockey, she said, those would break your back. Glittery hockey balls, I replied, we didn't have such a thing when I was at school! I heard myself sound like my mother and acknowledged (to myself) these are the kind of things you say in your forties.

A week

What a week, physio on Tue and eye hosp yesterday. And more snow. I really hate the snow by now. I want to shoot it or injure it in some way. I hope this weekend to finish reading The Elegance of the Hedgehog. It is pretentious as hell, but I am loving it. I am reading it in English, a bit too tricky for me in French. (I can read Amélie Nothomb in French, that makes me happy.) I learned that, for weeks, I have been doing a piriformis stretch which is too aggressive, I hope I have not made my back worse. My ankle has been numb for ten days, like it's been to the dentist and the injection is wearing off - I have never had anything like this before. And I am sick of NSAIDs and codeine. But my eyes are calm, well, kind of calm, not entirely calm, but calm enough and I continue to taper the drops.