the day today

I don't know about you, but I can't wait to hear results of Rituximab trials for people with PBC and M.E.  If you don't know what I'm talking about that's probably a good thing.  There will be a time when people look back to this as a very dark age, before lovely Research blazed a trail that found methods of treating symptoms of those with delinquent immune systems.

Meanwhile, I am back in retreat-mode with post-exertional neuroimmune exhaustion.  The view from the window is good but my camera is out of battery and Mr. Signs and his iPhone are not here.  Beside me are several packets of Christmas cards and the latest issue of Mslexia magazine.  Downstairs are rooms full of mess and muddle and a chicken that is hoping to be roasted tonight, but right now standing up does not feel like a good idea.  I am not sure if anything other than lying flat is a good idea.
Actually, yes - eating chocolate-covered marzipan is a very good idea, even if only in the short-term.
Poetry workshop tomorrow is out.  Choir practice is a don't-know.  Family party for my niece's birthday on Saturday.  If I am to make that I will have to pay beforehand with sufficient non-activity.

No vegetables to go with the chicken but no way to get to the shops today.  Damnation.  But perhaps there is a stick of celery, one sweet potato and a few beetroot.

Advent now.  I do want to send those cards.

This Li'l Light

We find ourselves in birthday territory again.  I say 'we' because sometimes I find I think of myself as a plural, almost as though there is the 'I' that carries on with the business of daily life and another 'I' that observes it.  A morning of writing with two writerly friends with whom I have met for many years.  We meet, if we can, once a week and write without workshopping.  We do this for about an hour and fifteen minutes and then share what we have written.  We honour each others' birthdays - so the lit candle in the scone is for me.  There is my hand holding the knife, my hard-backed turquoise notebook in which I will soon (after eating the scone) write three pages of words, mostly inspired by thoughts about the moon because of the birthday cards (here is one).

The writing did not come easy, the inner flame, compromised by my unwelcome but faithful companion Fatigue, was low and it is easy to lose the plot.  Poetry is sometimes forgiving about this because the plot of a poem is always just whatever is happening in the poem and one doesn't even need to know what that is.  Sometimes, even with the meanest measure of vitality, it is possible to find oneself carried along with the flow of words.  And then there is this magic, that where there was nothing, now there is something.

It is that small candle, though, that has stayed with me.  A flame is a flame.  I have been thinking about the many extraordinary people I have come to know - those who live with the more severe kind of M.E. Whether they have been made extraordinary by the fact of having endured conditions that most people would find unthinkable, with little support, scant respect and an uncertain future, or whether they were already extraordinary I don't feel the need to speculate.  I just feel lucky to know them - see how they shine.

How Things Are in January

I have decided to be kinder to myself. If a family member, friend or (come to think of it) anyone were to commit to doing something and then couldn't, I would not berate them. I would not treat them as I have treated myself, pushing them to keep going as though kicking a poor, worn-out donkey. Shame on me for having done that. I am as deserving of consideration as the donkey. A digression: in our family the donkey has a special place. My daughter and I both had donkeys as our special stuffed animal transitional comfort creature. More than transitional, they accompanied us through childhood. We love the donkey and support the Donkey Sanctuary. Son used to send them his pocket money. End of digression.

I have not been strong or well enough to consider working on my novel project right now. It will have to wait until things change for the better. I am carrying on with poetry work though this too is circumscribed, for at the moment my bed and dear little Macbook Air is the centre of operations. I do get up from time to time - for essentials plus writerly engagements - but the earth's rotation and gravity have to be negotiated.

Signs Cottage is not necessarily the best place for me, it has stairs and other inconvenient things. But Mr. Signs works from home several days a week, and cat is here. Life, still. Sweet.

Tomorrow is the mater's 89th birthday bash (meal in a local posh hotel). She does Pilates and aqua aerobics and is in rude health and sprightly as a pixie.

Back soon with posts from the front. They will be short, pithy - and unspeakably heroic.

(The title of this post refers, quite shamelessly, to the title of Ros Barber's poetry collection: How Things Are on Thursday)

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.

Life Goes On - Bra

I recently went to a shopping mall - I had to, the bra situation wouldn't wait any longer. I went to the M & S lingerie department for a "fitting". A nice woman, softly-spoken with a look in her eyes that suggested she had seen it all before (the state of my underwear, my soul, me) took my measurements and brought me a selection. I tried them on for size, decided they would do and bought the lot because, as I told the nice woman, I didn't want to be coming back for another three years or so. There was a depth of understanding in her nod. You have to be in the right frame of mind for a bra-fitting, she said. Which I never am. Nor in the right frame of body, and I am not talking about the size of my Bristols. If I had spilled the beans right there in the cubicle, about the sheer cliffs of fatigue and how the mere notion of shopping mall finds me perpendicular in Babylon as I remember Zion (may the words of my mouth, O Lord, be acceptable in Thy sight), she would have sat with me and wept. At such times one depends and projects mightily on the kindness of strangers. But anyway, the story does not end there, for when I got home I found that two of the bras did not fit and had nasty hard plastic things that dug into my armpits, so back I go today for refund, for swap. Business concluded I return to the car and find myself trapped on level five for forty five minutes, it is a quarter to five, everyone wants out and there is gridlock. I telephone Mr. Signs who telephones the shopping mall who promise to alert Security. The situation resolves eventually, as things do.
Brighton tomorrow, taking mother shopping the day after, meal out with writerfriends on Thursday, curry night with neighbours on Friday, carol concert Saturday - life really does go on. And my story too, bursting to be written and asking for my undivided attention.

Moving my Eyeballs

A couple of weeks ago I had a session with someone who showed me how to lie on the floor, breathe and move my legs a bit whilst doing some boring pelvic floor thing reminiscent of ante-natal classes. Anyway, I thought I’d acquitted myself rather well so felt justified in saying I was now doing Pilates. Today I went to a class in a local sports centre, dressed in my trusty purple trews, having been told that the class would be gentle as it was for Older Women – and yes, they did all look older than me. But even in the warm-up session I could tell that these babes were not just fitter than me, I wasn’t even in their league. Just holding my arms out to the side for more than a second was a challenge, let alone the other things that came after. I lay on the mat while Pink Floyd played on the CD player. I felt like Edina Monsoon from Absolutely Fabulous who got herself a personal fitness trainer but found that the only thing she was able to do was move her eyeballs. I could have done with Pats at my side to tell me well done when, after ten minutes, I grimaced my apologies and crept away. Which just goes to show that you can’t always tell a book from its cover (though these days, actually, you often can). I mean I look, you know, more or less ok. The muscles will not have it, though. I am living a double life, the mind seeming to do one thing and the body another. Of course, I’m used to living a substantial amount of time out of the body, else I’d have gone quite bonkers before now. But stone me, it’s unwelcoming when I go into it.

Also, I am quite done in with lack of sleep. Some say the moon has been playing tricks, what with the recent eclipse and all, and that this accounts for everything. But then everyone would be walking around bog-eyed, and I can see they are not. The moon just has it in for me, as I suspected all along.

Words in Limbo

I have composed a number of blog posts in the last few days. You will never see them, though, because they were not written down. What happens to unwritten blog posts is the same as what happens to unwritten poems and stories: they hang around and you breathe in the essence of them and then they evaporate, dissipate, do whatever it is that smoke does when it goes. And then they go to a place that we will call Limbo. I like Jack Kerouac's notion that only first drafts are preserved in heaven. But words that do not make it to first draft must also surely go somewhere, and Limbo is the very place for them, for they have been conceived but are not yet born. I will come face to face with them, I have no doubt, when I have shuffled of this mortal coil and am on my way to meet Saint Peter face to face at the gates of heaven. It pains me to have to say this to you Signs, he will say, but there are a few matters outstanding for you to attend to before we can even begin to consider your application. I will know at once that he is referring to the unwritten stories, poems, blog posts, words that are waiting for me to give them form and substance.
But Saint Peter, I will say with outstretched palms, I have done my best, I just got tired.
That's as may be, he'll reply, but rules is rules, and it's more than my job's worth etc. etc. (you can imagine the rest).

Dear Reader, pray for my immortal soul, now and at the hour of the blog post's conception, that I do not lay up a pile of trouble for myself in the hereafter.

(and Saint Peter, if you are listening: two poems in one week - and I mean words on paper - has got to be worth a few gold stars).

Message in a Bottle

The situation is this: I am, post-shingles, or very nearly, rather more debilitated than usual. To re-iterate my idea of chronic illness being like living in another country, I have moved further abroad. I am trying not to let it feel like exile but, let me put it this way – you don’t want to come here, really. Let’s imagine I am here so you don’t have to be. Anything you want to know, I’ll tell you, I can still write – a bit. Short sentences, and if I suddenly trail off in mid sentence or thought, you will understand. So, no, don’t come here: there’s no night-life, not much day-life either, and you can’t move around much. The food’s rubbish, just marmite sandwiches (ok, and fruit), and whatever else is around, you won’t fancy it. Books, yes, but you won’t be able to read them for more than ten minutes at a stretch. Friends are those dots on the horizon that wave to you and shout things like hope you’re better soon. In reply you are allowed to send them smoke signals. I saw one today in the doctor’s waiting room and ignored her in case I ran out of steam mid-conversation. However one explains, it always makes a bad impression.

It’s not so bad once you get used to the light. You have to get new spectacles, obviously, to carry on reading the signs and see what’s around. My neighbour’s tree is full of small cherries. My apple tree already heavy with fruit. I hear the floods have been very bad. News reaches me.

Hitting the Wall

Some women say that after childbirth they forget all about the pain and that this is nature’s way of making sure you go on and do it again.. Or that the love you feel for your children makes you forget, or you just do because otherwise you would go mad thinking about it. Perhaps it’s just the way I’m wired, but I never forget anything: the good, the bad, the ugly and the beautiful is all imprinted, scratch me and I’ll sing. It is this way with everything, I have extraordinary powers of recall for the way things were and the particulars thereof.

The exception to this is M.E. I stood in the supermarket today and hit the wall. The wire basket on my arm was becoming too full to carry and I knew I couldn’t go outside to get a trolley because that would mean walking up an incline and I fucking couldn’t. Added to which there was a duvet drying in a launderette machine up another incline and how was I going to get the shopping to the car, deal with the duvet and get myself home? It is like a recurring nightmare where you suddenly realise that you have been here before and actually if you try hard you might be able to wake yourself up. Never mind how the situation was sorted – strategies. But still, after all these years, I am taken by surprise. I get myself into situations that I should know from experience will lead to this. I commit to things I shouldn't. I forget about the wall. Perhaps that is in itself a strategy.

Twenty years in and I am surprised by incapacity. This does perhaps contradict what I said before about having come to terms with things as they are. It's the other side of the coin: the crazy expectation that I will "take up my bed and walk", or a knock on the door will come, a tap on the arm that says, you’ve done your time. And sometimes I wake up, it's a new day and I forget to walk the line.