Wednesday, June 29, 2011

vegetable wars

I like my new Health Practitioner. This is good because I feel committed to this road I have unexpectedly taken, and may be with her for some time. I have nothing to lose except money, and she is better value than Shrink, whatever the outcome. M.E. god is offended and fighting me with every means at its disposal. I am fighting back with vegetables and a conviction that things have got to be better than this, and will be. I am not sure where the conviction comes from. It rather goes against what one knows about M.E. But I am nothing if not open-minded (just don't remind me about the Lightning Process). I am changing the environment of me, the inside of me I mean, you know - guts, tubes, intestines and whatnot - working from the inside out. I'll keep you informed.
So this is the project right now. Mr. Signs is away in the States on business and I have given myself body and soul to my own business, which is food preparation and trying to get the eating of it (timing, quantities) right. The cat is happy because I spend more time in the kitchen, which she likes, or in bed. She never did like me staring at a screen and tapping keys.

I met a woman in the village today who I haven't seen for some years. She said, you used to write all those - things, didn't you? I don't know if she had actually read or heard any of my things, but I suppose one has a reputation. She wanted to know if I was still doing that. I said yes. Because it's still what I'm for, the Writing, and will be - when I get stronger.

Monday, June 27, 2011

Finding Susan

So - I promised I would shout if there was any improvement. Reader, I can't even give you a squeak. I was in a bad way before the new Regime and I am still in a bad way, just differently. No electricity - good, very good; more fatigue, fog-in-the-head and general M.E.malaise - not brilliant.. It is of course early days. With the exception of some lovely time spent with Daughter on the weekend, most of my waking time and available energy is given to the getting and preparing of the food concoctions I'm supposed to be having. I can safely say that vegetables and I seem to get on ok but I don't know about anything else. I'm not really thinking about sugar any more, haven't touched it in a while - craving is all directed at getting better. I feel as though I have gone backwards into the earlier years of M.E. This is perhaps to be expected, but I was scared then because I was frantic about what had happened to me and desperate to be well enough to look after my baby and toddler; I have spent this year mostly housebound and do not want any further deterioration. On I go - hope is my middle name. Actually, Susan is my middle name, as I revealed here before. It means 'joy of life'. Yes.

Sunday, June 19, 2011


If my tone has been brash of late, it is because there has been no real possibility of touching base, coming down to earth, to home ground. We who live with chronic illness find different ways of managing to live with it. Mine has often been to fly above it, at some level. There are benefits to this - one connects to another winged, or at any rate less encumbered, self. But in doing this one also leaves the suffering and disabled self lonely. For if we who suffer (I use the word to mean 'put up with') chronic illness cannot be alongside ourselves, then we become bereft. It is hard enough to be so long in the world, substantially cut off from life and living, without bereaving ourselves of ourselves to boot. I picture myself at the foot of my bed looking down on the person lying there in her red and white, tinsel-threaded pyjamas (June but still cold in Blighty), saying:
look, I'm sorry but I can't come here any more - ok? I really like and respect you but it drags me down and, to be quite honest, it's boring. You only get up to do essential things like washing and preparing your increasingly dull meals - we don't do enough fun things together. I've got stuff to do. I'll send a postcard - bye.
Before you go, I say, what actually are you planning to do?
She scratches her head, distracted. She is wearing my Purple Trousers, Weird Fish hoodie and Adidas trainers.
Long walks on the South Downs - I want to get a dog, did I tell you? Staying with a friend in her caravan in Scotland. Signs Cottage needs attention, plan to sort that out. Theatre, poetry gigs, concerts - and swimming again, in the sea this time.
Sounds good. What else? Anything you missed out?
Writing, she says. Lots and lots of writing - my novel, and poems.

And then the truth strikes. She needs me for that. Wherever she flits in the astrality, if she wants to write, she has to come home to the ground of her being, which is the person lying there in the pyjamas.

I am seeing a nutritional therapist and am on a really impressive hardcore regime, almost everything you can think of cut out, morning smoothie includes linseeds, quinoa flakes, rice milk - you get the picture. The therapist is a medical doctor who was herself chronically ill for ten years. She comes recommended. Any substantial improvement, I'll be shouting about it.

Monday, June 13, 2011

more sugar

Lawks! This is one of those untranslateable words - a bit like the Anglo-Saxon Hwaet! that you might find at the beginning of a narrative poem. The literal meaning of Hwaet is 'what' but what it really means is right then, folks, listen up! Wiktionary says that Lawks is an expression of surprise, a stereotypical utterance of a cockney house-servant in literature, particularly 19th and early 20th century. Whatever. I use it to mean something like, oof - well here I am again!

Or, perhaps - here I am, still, having absolutely nothing to declare but my genius! This is perhaps stretching the Lawks a bit, especially if one hasn't actually done anything in particular to prove one's genius. Never mind, I am testing the boundaries of sugar addiction. I am alone in Brighton with a packet of sweets - mint crumbles - that a friend left lying in the cupboard after her stay here as a gesture of appreciation. Actually, she left walnut whips and booze as well. Alcohol gives me such a headache these days it is easy to leave that alone. Mr. Signs ate the walnut whips as I sat and shivered. He is not here right now and I have eaten a mint crumble - just the one. Instant bliss, and a kind of shine hovering around. There is elevation. It will not last for more than half an hour and is very interesting to observe. I used to work in a drugs crisis centre where people were withdrawn from whatever they were on before going on to long-term rehab. Withdrawing someone physically from a drug is actually the easy part. If an addiction is established, the deep, visceral longing for a drug is written into the body and won't be so easily erased. For a sugar-sensitive person, sugar affects brain function the same way that heroin does. First the sugar high - the feel-good rush that addicts crave, then the withdrawal. I am learning all about it, remembering how, over twenty years ago, I told a homeopath I was seeing that I was concerned about the amount of sugar I seemed to need. She said it was ok - if you need sugar, then have it. But the feel-good rushes grow less over time, you need more of the stuff, a steady supply that increases. Then the insulin receptors become deranged and mere anarchy is loosed upon the system. The centre will not hold, the falcon will not hear the falconer - etc. My guess is that W.B. Yeats probably knew something about blood sugar disorder.

This is all so rockanroll, isn't it? Makes a change from boring old M.E., at any rate. Not that boring old M.E. has moved out, but looking on the bright side, I have something else to bang on about now - the pain and ecstasy of it all. More pain than ecstasy, but - Peeps, I can feel a Youtube coming on.

But laptop - or something - won't allow me to embed. Bugger.

"I'm waiting for my man ....."

Friday, June 3, 2011

sugar me

It's been all go here at M.E. Central. Picture it like this: I've been assigned to a particularly long and arduous project that takes most of my time and energy. There is no remuneration or job satisfaction, it's boring and unpleasant, but - well - I've been chosen, and my employer has made me an offer I can't refuse. It's not much of an offer really: either knuckle under or risk feeling even worse. Still, one grabs a moment here and there to look at the sky which, at time of speaking to you, is as blue as sky can be, and I am in Brighton by the heavenly windows.

My London Smoke-and-Writer friend came for a visit and we talked about The Writing, which for my part has mainly been going on in my pea-souper, pillow-pressed head. I have not put finger to keyboard for a month or two but had some pages scrawled in an orange A4 Silvine notepad (I like Silvine, we go back a long way), so I read that out, and in spite of the clear first-draftiness of it, the place of story is there, waiting for me. It is as though M.E. Headquarters got wind of this and has hit back hard. It is, as I have said before, a jealous God. Ah well, I have been here before, though not quite this bad for some time, and have lifted up again. The worst symptom is the feeling of electricity in head and limbs. Well, it is not just a feeling, there really is electricity: I have seen it go into the dials on a wristwatch which went whizzing round. One of those weird things - don''t ask. I'm not the only one. Walking barefoot in the summer is good, helps it to discharge.

The new food regime is going slowly. I am making myself have proper breakfast every day. First steps. And the sugar does, of course, have to go - though I do, of course, love it so, being addicted to the White Lady. Letting her go now. It will be better so.