Me and My Hat

I have been meaning to put this up for a while - my heather-on-the-moors rainbow hat. It was made for me by a friend, she who also made a shawl of similar hues to sit on my shoulders, and it goes with me everywhere, on my head, apart from when the cold is really perishing in which case I put on the dense brown mohair hat that Son gave me for Christmas. Yesterday, as I sat in a fish restaurant in Worthing, sharing a platter of fish mezze with Mr. Signs, I suddenly became aware that rainbow hat was neither on my head nor by my side or in my bag. I projected myself astrally into the car's interior and did not see it there either. I felt uneasy, this not helped by the huge quantity of fish in front of me - cod, trout, salmon en croute, mackerel, prawns, and this after a mezze starter that included gefilte fish, deep fried calamari, halloumi and feta cheese salad. Plus, there was a giant-sized bowl of deep sizzled chips. It was all fabulous and all too much, and the too muchness of it had the effect of making me lose my appetite. I needed a double espresso after just to help digest the thought of it all, and I kept thinking about my hat. Cold rain bucketed down on the way back to the car and hat wasn't there. It's probably back in the flat, said Mr. Signs, but I remembered leaving with it on my head and I remembered taking it off in the car when I felt too hot. If I were a detective or investigative journalist (thinking about the Dragon Tatoo one) I would be one of those who needed ample time to just sit, think and allow whatever was living in the ether to speak to me. I don't know what made me unbuckle my seat belt and get out of the car. There on the roof of it sat my hat, no worse for the rain and smiling at me in a peep-oh kind of a way. Some good person had put it there. A bit mysterious, but that's how it is sometimes with these special things. My son, aged seven, nearly lost a much-loved cap (also rainbow, very faded) on Brownsea Island. But someone found it on a bit of deserted beach and handed it in to whoever was in charge, and one way and another it got back to us. Who says that things aren't people too?

counting backwards

I've been in Brighton for a week and have lost any real sense of time. I could have been here for a couple of nights or a month. There have been visitors so not sure why this is. But I have been to some extent immersed in the Writing. There is the great big window and masses of sky (more sky here than on forest terrain), the sense of being apart but also a part of everything, always something happening outside, just enough to feel oneself a member of this bit of world but not enough to be intrusive. Until last night.

Students who live in the house next door decided to throw a party which most of Brighton's student population probably attended, spilling out into the street at the front and the garden at the back, the air pounding with retro music (I recognised most of it from my own party days in another life) until about seven in the morning. Not much use plugging myself in to Paul McKenna's 'I Can Make You Sleep' CD. And why, in any case, does he insist that one counts backwards from 300 while listening?

Mr. Signs, who understands the subtle workings of the human mind - or at any rate he understands me - told me I was not a good subject for hypnotism. Always wanting to take issue with or about something. I can suspend that, I said, I can give it a go. But he was right. My nit-picky mind finds something to argue with and will not let me succumb to the drone that is Paul McK's hypnotic voice. It was the same years ago when I tried it in the early days of M.E., thinking that hypnotism might make me feel better. We were doing ok with the relaxation and the zoning out until Mr. Hypnotist began talking about ironing shirts, not just once but several times, he had a thing about it. I had to imagine myself ironing a (husband's) shirt and feeling very well and happy while doing it. Even before M.E. I never ironed shirts unless there was an extraordinary and pressing reason to do it, and my take on husband's shirts was that he could perfectly well do his own, and anyway most of his were drip dry and didn't show creases much. Hypnotist was insistent that I did as I was told and pictured the ironing. How many shirts, I wondered, did I have to in my imagination do? Because the thing was, I had orthostatic intolerance (though I didn't know the name for it then) and wouldn't be able to stand for long. And so on. We didn't get very far. He saw shirt-ironing as some kind of bench mark and it kept cropping up. Paul McK doesn't go on like that, he says a number of perfectly good things and I know for a fact he has helped a couple of people I know. But, but, but.

all you need is .....

(The Holstee Manifesto - go Google)

1. Thanks for the advice, I bet you love giving it and go around dishing it out often.

2. I don't like simplistic pronouncements that pretend to tell the truth about life. Good enough?

3. How do you even know how much TV I watch?

4. All emotions are not beautiful. Some are very ugly, get over it.

5. I have a ghastly premonition about your inspiring dream, but fire away.

6. I don't want to travel often, I have M.E. and Brighton is close.

7. Share my passion? You'll be lucky if I even share a packet of Monster Munch. Pickled onion flavour, if you want to know, very nice - for those that like that sort of thing, which I do. There, I've shared something.

Ah, cobblers.

oh sugar!

I wrote a long and diverting post all about seagulls and fried doughnuts (with vanilla sugar) - and somehow it has got itself disappeared and I can't restore it. So you will just have to imagine what it is that I have said, and perhaps what you imagine will be better than the post actually was. Though nothing can beat the actuality of a hot fried doughnut on Brighton Pier under a smoke-gry sky with a needling wind in your face.

PACE Disgrace

Not surprising that I am doing the Night Watch, with all the crap in the news about PACE trials and their bogus findings in favour of Graded Exercise Therapy and Cognitive Behaviour Therapy for people with "CFS/ME". Where to begin to take issue? Action for M.E. and the M.E. Association have clearly spoken against these findings and concern has been expressed about the way in which the results are being reported in media headlines as it is bound to lead some doctors to advise inappropriate exercise regimes that will cause a serious relapse.

This is not a good day for people with ME/CFS.
They have a complex multisystem illness that requires a range of treatment options based on their individual symptoms as well as the stage and severity of their illness.
(Dr. Charles Shepherd, Hon Medical Advisor at the MEA)

Interestingly, the subjects chosen had to name fatigue or lack of energy as their main problem in order to qualify. This should already sound loud alarm bells because, as any PWME fule know, fatigue and lack of energy is only one of the symptoms - and is almost certainly not the most serious one! How much longer do we have to shout this out?

Or did they just choose people with post-viral or other fatigue-related conditions?
Or did they decide not to discriminate between those and people with M.E.?

I have barely been able to crawl up the stairs recently. But that is not the point. Sometimes I walk for forty five minutes at a stretch, sometimes I swim - yes, last year I conducted my very own graded exercise experiment. Findings? If you have M.E. and do aerobic exercise you are playing with fire. I knew this, but. The point is that even when I am able to walk and swim I have symptoms that make it impossible for me to go out to work and do things in the house most people who can walk and swim would take for granted. As I have so often said: I am one of the lucky ones, only moderately afflicted, but - I am daily in pain, have muscle spasms and take prescription medicine for that and for autoimmune malfunction affecting my eyes, thyroid and liver, suffer a clutch of bewildering symptoms and sensitivities (to certain kinds of light, noise, smells) that have constantly to be monitored and accommodated - this is down to having an incurable (at time of posting) neurological disease and no amount of CBT or GET is going to address that particular issue.

Thank goodness for this response by Professor Malcolm Hooper.

Five million smackeroos of tax-payers' money was spent on the PACE shenananigans. Why? The simple answer would be to say that in the long run it will save money. I suspect there are other darker, more complex reasons also, but for the moment the simple one may be enough and, as Professor Hooper has pointed out, "Professor White and his co-Principal Investigators all have financial links with the health insurance industry..."

Tired now.

p.s. And excuse me but - "fatigue" is not a word that represents the terrifying (do I use qualifying words for no reason?) malaise and exhaustion that all PWME have to negotiate to a greater or lesser degree.

I have spoken.

dickory dock

Time to venture out of doors, though I cannot stand or walk for long periods. Friend-from-the-village came to clean - strange how the atmosphere in a house changes after floors and surfaces have been given attention. Into the village for lunch in the community centre where they dish up a roast lamb dinner. I have it but don't like the sensation of chewing on meat, think of the animal, the flesh, the deadness of it, remember myself as a child when first encountering English school dinners, dead man's leg stew etc. Afterwards, a trip to the Co-op for a few provisions but I begin to feel dizzy, orthostatically unstable, and blood sugar swing sends urgent Get Sugar Now messages. Why are there no cut-price post-Valentine chocolates? The shelves are stacking up, already preparing for Easter, the Lindt reindeer having morphed into bunnies. I buy a box of over-priced Black Magic, get into the car, tear off the cellophane and eat several at once. A man with a bycicle and a woolly hat sees me through the car window, bares his teeth at me and chuckles.
"That bad is it?"
I bare my teeth back at him and nod. Is what that bad? The Black Magic do their work but leave me jittery and the fruit creams hurt my teeth. Worth it, though.

A couple of people have asked me if I don't go stir-crazy from being in the house so much. No, because I have had many years of practice and sometimes there are times like this. Also it is good to look out of the window and see evidence of the forest, the natural world all around me. I remember visiting a woman with severe M.E. who mostly lay on a sofa and looked out of her window at the sky and noticed all the different cloud shapes. Her husband left a plate of sandwiches and a jug of water so that she would have something to eat in the day. To be upright, even to sit, made her dizzy. She asked me to bring some leftover soup, if I ever made it. She missed the taste of fresh vegetables. It was too difficult to read or listen to radio. She had been refused disability allowance because she was seen to be able to take herself to the lavatory and back. She had appealed and was waiting for a response. Meanwhile there was the window and the shape-changing clouds. Whatver the life you have, you live it. Usually that is how it goes.

I am still cancelling - no poetry workshop on Saturday. A few days in Brighton. And then, next week, begin again. That is the hope.

tick tock

Virus thing is hanging around and I almost have the sense that it is trying to re-boot. I am being, perforce, patient. Goodness knows if I have not learned that much in twenty five years then it would be a pretty poor show and it does not come as a surprise to find myself almost completely grounded with most reading and writing privileges denied on account of neurological disturbance. Blogging, it seems, is ok - in small doses. Apart from the pre-Valentine lunch on Sunday, I have not left Signs Cottage for a week and a half. I have cancelled two choir practices, two writing sessions, dentist, book group, weekend visitors, Brighton, a poetry reading. It suddenly feels as though my life - for a PWME, at any rate - has become too busy, though I am careful to have spaces in between things. For now, though, everything has stopped. If there were an old-fashioned Grandfather clock in the house I could listen to its tick and tock. Times when one watches the moments, listens to them as they pass: tick, and tick, and tick.

The solitude imposed by these times, in spite of the restrictions, is by now a familiar guest - a friend, almost. I would prefer it to come alone and unencumbered, without the attendant symptoms.

A present came through the post today: a white key in a black box. It looks beautiful and potent, talismanic. To unlock the space between tick and tock, slip through. Find the point of exit, of entry.

red carpet

I watched most of the very ghastly BAFTA awards thing, mainly because I wasn't properly up to doing anything else. I should have just gone back to bed and read the papers but I knew if I did that I might fall asleep early - and then I would risk waking in the small hours and doing the night watch . Now I should go to bed but feel wired and restless. I blame BAFTA and the state of heightened boredom it induces so that one feels obliged to chew through the best part of a box of wine gums. Paul McCartney looked in a shocking state, I thought, as though innerly propped up by something or other (drugs?) but not really in himself. In a thin voice, he promised us a "rockin' evening." The closest we got to that was Helena Bonham Carter hogging the space to receive best something-or-other (King's Speech etc). Bad behaviour does, after all, promise a measure of intrinsic interest. But she also looked in a bad way, as though on some kind of disorientating medication, not in herself but still up herself. Am I being a grumpy old blogger? Good.

The truth is that as far as I am concerned, nothing could be right after the glitz parade of designer frockage at the beginning when they all arrived and spilled themselves onto the red carpet. I know it is part of what happens, what one expects and what, presumably, every single person in the whole world apart from me really wants to see. But every time I allow myself to watch something like this I wish that just one of the actors would decide to turn up in the equivalent of my purple shell-suit trousers. It is very unlikely that I will ever be spilled out onto the red BAFTA carpet but if, for some unfathomable reason that none of us can forsee, this does ever happen I promise to you, my brothers and sisters who carry the torch for true artistic (not to mention aesthetic) integrity that I will not under any circumstances be dressed in designer clothes or any other glitz-schmatter that leaves my shoulders and most of my boobs bare. It is February, forsooth! I will be dressed in my Purples with matching cashmere jumper, string of pearls and grey hoodie if it is raining, fake Uggs on my feet or possibly Crocs with striped purple socks showing through the holes. So no-one will be able to accuse me of not having Style. But there will be none of the dreary glitz we were subjected to this evening.

But soft ye now, for we are almost in Valentine's day, and today being Valentine's Eve (it's almost another Christmas as far as hotels are concerned, so why not?) Mr. Signs and I went out to stuff our faces with sunday lunch at the local posh hotel. The pianist played right through the Sound of Music and followed up with the Godfather and Twinkle Twinkle Little Star. Mr. S ate rare roast beef and I my fillets of plaice on a bed of crushed new potatoes followed by poached pears and chocolate sauce. The French waiters (yes, all French) hovered and spun around us while outside the wind and rain lashed at the high bay windows and for one brief moment it might almost have been possible to imagine that we were in some well-rehearsed play in which we played our parts beautifully. We laughed and we love each other. Bring out the red carpets.

Am I going mad or is this some kind of revelation? My inner DJ, as you might expect, has been cranking up its (genderless) endeavours, as though to make up for my almost bed-ridden and totally housebound state. My inner DJ is a constant source of wonderment to me and the tactics it employs leads me to think that it is probably more sophisticated than I am though we do, at any rate, share a sense of humour. When I was in the process of separating from my first husband it played Tammy Wynette's D-I-V-O-R-C-E and Hold Me Close by David Essex on a continuous loop. Why? I had never paid any attention to Tammy or David, far less owned any of their music, but inner DJ made sure that those two numbers are securely held in the recesses of my inner jukebox. One scratch and they will replay.

So you will be wondering what the music is right now: it's South Park, the movie - one track in particular. Recent loft excavations unearthed daughter's old CD and I have been playing it through, remembering how much I loved South Park and thinking that a few wall-to-wall sessions of this might be just what I need. I am still (taking it slowly, perforce) on Candia McWilliam's new book and almost thought of getting Jane Shilling's memoir of middle-age but a) I can't get it (or anything much that I want) on Kindle, b) I suspect it's going to feel a bit insubstantial after Candia and c) perhaps I need something completely different. And what, you are asking, is inner DJ's response to this and the predicament of my enfeebled condition?

Here, for your delectation:



Looking for this on Youtube threw up all manner of interesting variations. There was the German version:



and a heart-stoppingly beautiful remix with images - which I now cannot find.

And so back to bed.

Notebooks

Clearly I'm not ok and I hear that the virus is a nasty one - the effects linger. I hunker down with bell, book and Kindle, little black radio, cat purring at the end of the bed. I should just lie back and let it all be, really. But I don't. I am not comfortable being there for too long, even though the bed itself is fine, the mattress good etc. Apart from the fact that too much lying down in the day usually makes my muscles feel worse, the room, already too small for the stuff that is in it, fills up with my restlessness. Get up, go downstairs, fetch hot water bottle, shiver, crawl up stairs but I have forgotten to bring a drink - down again, up again, listen to Jenni Murray on Woman's Hour and have no idea what anyone is talking about. I catch sight of myself in the mirror in my red and white pyjamas and grey V neck pullover that I probably found at the same time I found my purple trousers, in a charity shop. I look cool - yes, even in my reduced state - dramatic dark shadows around my eyes and the unmistakeable silver/grey halo framing my head, real roots, old brown Uggs on my feet.. I am still the Queen of Grunge.

Why have I got so many old notebooks lying around the place? I was trying to find something in them but damned if I can remember what. Something to do with teaching classes, I think. Open one at random and read an entry about encouraging students to keep writing in the holidays. I feel as though I'm spying on myself:

"They asked me what they should write about. I am weary but don't show it. Write about the candle you noticed bleeding wax onto the shag pile carpet. Write about the pine needle lodged in the arm of the sofa. Write about the crack in the turning of the year when things don't quite fit together and angels slip through and young men become werewolves howling in the forest and the girl in red treads a path through the trees. Write about your grandmother picking her teeth. Write what you see, write what you don't see, make believe. Pretend. Or don't pretend. Just watch. I don't believe in magic either but I pretend I do. Or rather, I do believe and pretend I don't and the pretence is killing me. That's why I write, to keep alive - what's your excuse?

Last year at Epiphany I went to hear the a poet who said he had woken up that morning with words speaking in his head from a dream. I took the words home and wrote them in my book with leather covers. They seemed like a key to something, or perhaps they were just words. Putting the words down on paper is important - a subversive act, especially if you don't get money or fame or nobody sees the words in your notebooks. At the end, when you are asked to account for yourself, you will have the notebooks along with the time you gave the last biscuit with jam on it to someone who looked sadder than you. Jack Kerouac said that only first drafts are preserved in heaven. In other words, the notebooks that never see the light of day."

And so to bed.

I have picked up some kind of throat virus - mild, but it just adds to the general difficulty of doing anything at all. I am not easily able to leave the house, the wet, cold and wind take stamina, or something that at present I do not have: substance. I like that word. I feel thinned-out, not that you would particularly think so to look at me. I am like a purse without coins, constantly on the forage for some other kind of currency to get me through the week. Things hurt. Body feels electric, not in a good way. All familiar, and to utter these things helps to get the measure of them.

cake therapy

No, I give in, I can't overcome the essential dreichness of the day. I know the weather is outside, gusting its grey murk around like an interminable wash-cycle of grubby clothing, and I know that I am inside the walls of dear old Signs Cottage and can, after a fashion, create my own climate-of-the-innerspace. But dreichness has seeped through the cracks and got under my skin. This is more likely to happen when there has been a night of disrupted sleep; and I have got myself over-tired (as if I'm ever under-tired) and overwrought. I drove to Brighton and back yesterday in order to meet with a friend and let her into Brighton flat, and lovely it was to see her, we haven't met for some months and she is a long-standing friend, but it follows as surely as night follows day that there will be payback for such extravagance; and today I have simply been unwilling to lie back and count my blessings or zone out on muscle-pain reducing medication. I have been trying to push on with the writing to no great effect as I began it too late in the day.

But - but - a potent smell of oranges is in the air because I have a couple of them simmering, the plan being to make one of my (Claudia Roden's) orange and almond cakes. I have been reading recently (I think it was in one of Julia Cameron's books) that it is impossible to make a cake and feel suicidal. Not, I hasten to add, that I feel suicidal. No. Beneath the myalgic invisibility cloak I am the same ray of sunshine as ever I was, the very incarnation of Polyanna. Wait. It is beginning to sound as though I am protesting too much. But I can prove what I say: for already the thought of cake begins to work its magic and I haven't even begun the mixing and stirring yet, and I am chewing a piece of Nicorette gum instead of rolling a nice tube of Golden Virginia. No-one who was even remotely suicidal would be doing that. Just take my word for it.

February

We are out of January - good. I woke early today and sat with my cat in the kitchen, she with a saucer of Whiskas cat milk, me with my home-brewed latte and notebook. Yesterday I talked with the Daughter about writing because this is what she is doing, with projects on the go and deadlines, and coming up against the things that writers face from time to time - the sabotaging sabre-rattlers that fill you with doubt. Of course we all know that the only way out is through - writing through it, that is. But sometimes it helps to be reminded of that and to get a little support. So thank you Natalie Goldberg, Julia Cameron, Annie Dillard and a few others who sit on the shelf above my computer. My very first book about writing was a slender thing called Becoming a Writer by Dorothea Brande, written in the thirties. It is probably still the best and the one that got me started. As I spoke about the importance of writing first thing, I also reminded myself of this. The notebook is a lovely thing. Keyboard will never take its place and my back hurts when when I sit at it too much. But I am still drawn to the idea that the screen is a kind of Narnian door I can walk through.
In the morning, the silence here on Edge was beautiful. But I became aware of an absence of birds. There was a bit of twitter and song, a lone bird sending out tweets but nothing came back in reply. It led me, though, into the substance of my story, the project I am now working on. Then suddenly an intense fatigue came into me, it was not yet nine o'clock, and so much still to do, and I realised: so often I avoid doing this because I have to dip the pen into the ink of my vitality to get the story down. Still, because I began first thing, a decent writing session, and later on more of the same at weekly writing meet-up.

Prepared spiced chick pea supper, slept in the afternoon, sang Mozart's C Minor in choir later. Mr. Signs exceedingly busy with much on his plate. We are all, it seems, working hard.

Tomorrow I get my first Able and Cole fruit and veg box - Daughter's suggestion, to help simplify my life. I ordered milk, eggs, fish and cheese from them too. If all goes well this (plus slow-cooker at weekends) will significantly help with time-management.