Category Archives: words

Out of the swing of the sea

So, I did come down sick again: maybe some explanation for this swing down which is continuing. I’ll spare gruesome details, but it’s gastric and has been continuing for 3 days, so I’m losing yet more weight. And it may have been my own stupid fault. My new private Doctor who specialises in CFS/ME, Dr Myhill sent me a confection of minerals in powder form to dissolve in water (tastes like what I imagine washing up water tastes like: I haven’t tried), and, not finding the specified “scoop”, I thought “coffee scoops” and doled myself out a soup spoon full on Thursday, to immediate gastric reaction. I’m told my body may be in shock mode now. We found the scoop today at the bottom of the powder – it’s like a lilliputian’s teaspoon.
The result (if that’s the explanation) is feeling very sick, tired and anxious and stuck in bed. But I’ve had repeated gastric episodes of a yucky variety in the last six months: the first coinciding with my loss of hearing and cochlea damage. I hope it’s understandable that I’m anxious right now about more “idiopathic” damage and deafness, and doesn’t signal a descent into being yet more pathetic.
So this has to be a snatch of an entry, and I’ll use others to provide content. For those who don’t know the (agonising, ridiculous, soul-destroying) state of CFS/ME healthcare in the UK, which I’ll still have to put off for another time, please please just quickly look at my own private doctor’s take on the “organic illness vs. you’ve convinced yourself you’re ill” debate. I like a straight-talking doctor:

CFS Psychological or Physical?
This seemed such a stupid question that I never bothered to consider it.

Also her article on “Dealing with Doctors“:

Most doctors do not distinguish, indeed do not want to distinguish, between fatigue, frustration, sadness and depression. If you burst into tears with frustration at the total lack of understanding, that merely reinforces the universal diagnosis of depression.

Because of her attitude, I’m sticking with her methods for at least 6-9 months. She’s a breath of fresh air, after more than a decade of UK doctors looking like a deer in headlights when you mention M.E. She’s very nutrition-based, but she’s also ordered a lot of tests (vitamin D deficiency for mood problems, melatonin levels, parasitology, and something scary in case my hearing loss was a tiny stroke, and a third thyroid test) which the NHS have told me they won’t pay for – so I have to. I’ll be taking vitamin B12 shots weekly soon, which is first-aid commonplace treatment in other countries for this condition, and unspeakably unorthodox hippy nonsense to UK general practioners. Allow me a brief outburst.

All of you are worthless physicians.
If you would only keep silent,
that would be your wisdom!
Job 13

Joni Mitchell says it best in The Sire of Sorrow (Job’s Sad Song).
Anyway enough. I’m sitting in bed, trying to expose my ear to noise, as instructed, and trying not to worry. Two lovely friends held back the borders of my anxiety yesterday by just talking to me on the internet. Thank you thank you.
I’ll have to stop, as rest for CFS/ME patients is supposed to not involve laptops, TVs or even music but, just for me, another song of longing based on verse from a long time ago, from a band who have saved me time and time again. Just a deep deep longing to be out of the “swing of the sea” for a little, to get some rest, physically and emotionally.

I have desired to go,
oh I have asked to go
where a few lilies blow,
to fields where flies
no sharp and sided hail
and springs not fail,
and springs not fail.

And I have asked to be,
oh I have asked to be
out of the swing of the sea,
where the green swell
is in the heavens dumb,
and no storms come,
and no storms come.

The Innocence Mission – No Storms Come – from Gerard Manley Hopkins – Heaven Haven

And finally, Hope’s lesson for Giant Despair.

And let us consider, again, that all the law is not in the hand of Giant Despair. Others, so far as I can understand, have been taken by him, as well as we; and yet have escaped out of his hand.
Who knows, but the God that made the world may cause that Giant Despair may die? or that, at some time or other, he may forget to lock us in? or that he may, in a short time, have another of his fits before us, and may lose the use of his limbs? and if ever that should come to pass again, for my part, I am resolved to pluck up the heart of a man, and to try my utmost to get from under his hand.
I was a fool that I did not try to do it before; but, however, my brother, let us be patient, and endure a while. The time may come that may give us a happy release; but let us not be our own murderers. With these words Hopeful at present did moderate the mind of his brother; so they continued together (in the dark) that day, in their sad and doleful condition.

Hopeful comforts Christian – from The Pilgrim’s Progress

Difference of sex no more we knew / Than our guardian angels do;

Today, just a hiatus for Christmas Day morning before we start this thing proper here. The most lovely thing anyone ever said, publically, that I knew was for me, privately.  A long time ago.

The Relic

When my grave is broke up again
Some second guest to entertain,
(For graves have learn’d that woman
head, To be to more than one a bed)
And he that digs it, spies
A bracelet of bright hair about the bone,
Will he not let’us alone,
And think that there a loving couple lies,
Who thought that this device might be some way
To make their souls, at the last busy day,
Meet at this grave, and make a little stay?
If this fall in a time, or land,
Where mis-devotion doth command,
Then he, that digs us up, will bring
Us to the bishop, and the king,
To make us relics; then
Thou shalt be a Mary Magdalen, and I
A something else thereby;
All women shall adore us, and some men;
And since at such time
miracles are sought, I would have that age by this paper taught
What miracles we harmless lovers wrought.
First, we lov’d well and faithfully,
Yet knew not what we lov’d, nor why;
Difference of sex no more we knew
Than our guardian angels do;
Coming and going, we
Perchance might kiss, but not between those meals;
Our hands ne’er touch’d the seals
Which nature, injur’d by late law, sets free;
These miracles we did, but now alas,
All measure, and all language, I should pass,
Should I tell what a miracle she was.
John Donne
(1572 – 1631)

Dylan Thomas – A Child’s Christmas in Wales – and a first Christmas Eve’s test of my weblog

One Christmas was so much like another, in those years around the sea-town corner now and out of all sound except the distant speaking of the voices I sometimes hear a moment before sleep, that I can never remember whether it snowed for six days and six nights when I was twelve or whether it snowed for twelve days and twelve nights when I was six.
All the Christmases roll down toward the two-tongued sea, like a cold and headlong moon bundling down the sky that was our street; and they stop at the rim of the ice-edged fish-freezing waves, and I plunge my hands in the snow and bring out whatever I can find. In goes my hand into that wool-white bell-tongued ball of holidays resting at the rim of the carol-singing sea, and out come Mrs. Prothero and the firemen.

Continue reading Dylan Thomas – A Child’s Christmas in Wales – and a first Christmas Eve’s test of my weblog