The Limit

Windows in Time

2010-02-11T02:55:00.000-08:00

I have a window, a brief, clear window. The sun shining brightly through it, always open to let the cooling breeze waft over my awakened body. It’s been a long wait this time around, in fact I’d really started to believe that the window had closed for good. However, here it is, it’s been here now since the beginning of January. I know some of you will believe and want me to believe that it’s the beginning of the end of my illness and I know that comes from a good place in your hearts. I wish belief was enough to cure me and all the other sufferers of this disease. If belief could do it, I tell you all the hope and the pleading that we all do everyday would be enough to cure all ails. Sadly belief will not cure ME just as it doesn’t cure cancer.

But my window has been left ajar and I’ve climbed through it. My feet are dangling over the edge and the feeling of freedom is palpable, I can feel the air passing through my toes, the rough edges of the brick walls against my soles. My hair gently being tossed by the wind and it feels marvellous. Of course my freedom is laughable to a well person; it means that I can go out for coffee or lunch once or twice a week, or have a visit from a friend. I’m able to have a good chat without feeling absolutely dreadful and every motion or word being such a weight. After each of these meetings though I’m exhausted and I need a few quiet days to get over them but I can live just a little. So many other sufferers don’t get these “better” periods. The fact that I do makes me so grateful because when I am at my worst for long, extended and drawn out periods I know what it’s like. Some people have been in that state for years without the slight relief that I get from time to time.

How do I know this isn’t me going into remission after four years some of you will ask at this point. I know because I still feel ill; constantly symptomatic. Also I’ve been here so many times before and experience has taught me that I just need to embrace these moments and enjoy them whilst they are here, taking care not to over do things. I usually get a couple of months until I go back into a more severe state of illness, the worst periods always last longer than the easier ones unfortunately but for the moment that is in the future. This illness affects us all differently and this is how it affects me. I’ve accepted it for what it is. I am just overjoyed that finally after a year of hell the seal on my window broke and I have the energy to climb up and sit on the sill.

Old Shoes

2009-12-24T03:04:00.000-08:00

Like old forgotten shoes in the back of the cupboard

Waiting to found.

To be dusted off and polished,

Once more to be in fashion, soles upon the ground.

The comfort of the ages gliding around the floor.

The feel of the familiar,

My bare feet regaling, alive once more.

La Dose

2009-12-23T07:04:00.000-08:00

Fais-moi signe.

Un clin d’œil

Ou deux.

Trois même,

Si ça te fait plaisir.

Pour ma part une moitié

Sera suffit.

Je ne suis pas gourmande,

Juste en manque.

Here's the translation.

The Fix

Give me a sign.

The blink of an eye

Or two.

Three even,

If that’s what works for you.

For me just half is enough.

I’m not greedy,

Just in need

Of a fix.

Wilfrid

2009-12-12T04:04:00.001-08:00

Will fried

Will fried pie eyed

Will fried cried

"La plus bonne de toutes les filles,

Une fille terrible."

Will fried

Will fried disguised

Will fried tried

To explain, falling over

Her apron strings

Paris 1998

Gone

2009-12-12T03:59:00.000-08:00

Rattling 'round the jingle jangle of my time

The isidious, seeping sentimentality of your lost soul.

Screaming as it peters out,

Knowing it will be consecrated to the dwindling periphery

Of tomorrow's crucified dawn.

Manchester 2009

Trust

2009-12-11T05:26:00.000-08:00

Myself

The one

The only

Not you

Not he

Not she

But I

The be

The end

The all

Manchester 2004

Untitled 1

2009-12-10T03:38:00.000-08:00

This is not my time.

You take me to the heights wrapped in radiance,

Yet engulfed by blindness

I drop into the cradle of my sadness.

Awoken I writhe to see my senses,

Stare at their numbness and await the winging of my soul.

For that will be my time.

Indonesia 2000.

Brain Stains

2009-12-08T02:35:00.000-08:00

The silence echoing around the cathedral of my mind says it all.

Reality speaks though slurred

Leaving brain stains on the floor.

Jigsaw splatterings form the words

You've kept locked up in that treasured box,

Carried since eternity.

Come take the rusted key from this proffered palm

And let lightness free.

Manchester 2009

In View

2009-11-27T03:15:00.000-08:00

Your gentleness still shines through.

I know there can be no more,

And I won’t ask it of you.

Just tenderly accompany me on my journey,

In compete ease,

Side by side as before.

Follow my steps from afar

As I shall yours.

Manchester 2009

The Merry Round-and-Round

2009-11-22T05:38:00.001-08:00

Here comes the Merry Round-and-Round,

Up and down,

All through town,

Distracting us from wake time.

He smelled her need,

She took no heed,

Her senses open to his seed.

Sat her on a pretty horse,

Led her on a happy course,

Upon the Merry Round-and-Round.

Until she fell upon the ground,

Arms outstretched

In a heap, feeling cheap.

Then came the sound

Once more abound

Upon the Merry Round-and-Round.

Paris 1997

The Mirror

2009-11-22T02:11:00.000-08:00

Don't cut there!

Why not?

Just here, just a nick.

Slow and intentioned.

You're only thinking of yourself,

And the pain you'll have to endure.

That face in the mirror unshaven

With shackled eyes asking, "Why?"

Well it's either you or me in that stance.

Who is it to be?

Broken Words

2009-11-11T02:24:00.000-08:00

Apparently we utter 15,000 words on average per day. I wonder what my mean is? During a typical day I have one five minute conversation with my mum, and that's it for oral communication. How many words is that? A couple of hundred? Does that 15,000 include all the conversations I have in my head? Or is it the spoken part of the act that is important? I also wonder if this is why I’ve taken to writing since becoming ill. Is it an innate urge from my brain to get something out in some form or another? Of course writing is very different to conversing as it’s very one-sided, there isn’t the bouncing around of ideas, new thoughts and ideas sparked unless it’s IM or bantering on Facebook. In a way, I suppose writing is very similar to those conversations we have in our minds, I’m sure you know what I’m talking about, we must all do it, those imaginary colloquies with other people and of course always getting our desired outcome, the practice run before saying something close to our heart to make sure we get out exactly what we want to say, reliving almost forgotten memories or playing out our hopes and desires. Surely I’m not the only one? Or maybe I am and I've just divulged something really embarrassing. Well it wouldn't be the first time and it certainly isn't the most humiliating.

Therefore is my writing the product of all the conversations I’m no longer having? I think it might well be as I am a bit of a language bunny, always have been, my greatest pleasure as a child was reading, entering wonderful imagined worlds for days and days on end. Of course there is the little matter of my illness and chatting can be very draining for me, I need a lot of quiet to be able to get through the day and the conversations in my head are calm ones and expend very little energy. So, what will this do to me in the long run, the fact that I’m not running linguistically as I should? Do we ever forget how to converse, how to interact? Will I only be able to effectively communicate through the written word? Only time will tell and well, if that is the case, hopefully when I finally get well or at least get some proper medical help I might, just might, be able to make it as a writer.

Composing the Past Once More

2009-11-07T04:01:00.000-08:00

Here is the 2nd edition of the poem all thanks to Palou. I feel it flows much better now and the grammatical mistakes have been ironed out.

Cours, mon petit, cours!

Le vent t'emmènera, en volant tout deviendra clair,

La hauteur te séparera de toi-même.

Ainsi, plus rien ne pourra te nuire.

N'aies pas peur d'être en morceau,

La légèreté saura te reconstruire.

Reste entortillé dans les nuages,

La terre nourricière attendra infiniment

Le jour où tu lui rendras sa bonté,

En t'effondrant doucement dans ses bras.

The Offbeat

2009-10-26T04:48:00.000-07:00

Life in the slow lane was an odd place for me to be found ever, I was energetically ignited, had some major fire in my belly and a mind full of adventurous wanderings. One day I woke up, was shoved quite rudely into a corner, pinned down and shackled to the wall by M.E. I was given a very finite and closed space within which to move, if I try to venture past I’m quite sharply reminded by my constraints, they inflict pain and severe unrelenting exhaustion. As I’m sure you can imagine it took a little while for me to become accustomed to my new situation, I cried, I screamed, I pleaded, I begged, I tried sweet talking, giving up and imagining my freedom yet nothing worked. Eventually one day I accepted where I was even if I didn’t understand why, it didn’t make my symptoms any better but calmness prevailed and life in the slow lane began for the first time in my life.

I’ve learnt to love this gentle pace, even enjoying the juxtaposition of my place within society, watching my peers have families, get MA’s, PHD’s, their careers burgeoning, deeply ingrained in modern life juggling so many perilously balanced balls. I could quite easily fold into myself and become desperate by my lack of “life.” I’m so grateful that I rarely feel that way, I always enjoy seeing my friends’ happiness, it in turn makes me smile, and I'll take as many smiles as I can get. I travel in your timeframe through your stories. The time in which I traverse now goes at a slow beat in comparison, gentle but still rhythmic. All that I do is accompanied by a rhythm, always has been, but now I meander to a different tempo. It’s a gently lilting cadence and my steps are taken on the offbeat.

2009-10-12T08:57:00.001-07:00

There appears to be a lull in proceedings.

Composing the Past

2009-10-02T04:03:00.000-07:00

It's been many years since I wrote in French but this morning I had an urge and here's what came forth. Thankfully my dear friend Flo helped iron out some errors. I've translated it below.

"Cours mon petit cours,” elle a crié.

“Le vent t’emmènera, en volant tout deviendra clair,

La hauteur te séparera de toi même.

Comme ça plus rien ne pourra te nuire.

N’aie pas peur d’être en morceau,

La légèreté te remettras en entier.

Reste entortillé dans les nuages,

Si douces ses paroles, n’est-ce pas?

Ta terre nourricière attendra infiniment

Le jour où tu lui rendra sa bonté

En s'effrondrant doucement dans ses bras.“

“Run my darling run,” she cried.

"The wind will carry you, all will come clear in flight,

The height will separate you from yourself.

Then no more shall you be hurt.

Don’t fret of being in pieces,

The lightness will make you whole, once more.

Stay enveloped in the clouds,

Such sweet nothings, no?

Your earth mother will forever wait

The day you return her kindness

By collapsing gently into her arms.”

Growing Pains

2009-09-24T04:02:00.000-07:00

Growth comes in fits and starts and there are a ton of clichés but what I want to consider is why some people are able to grow and mature as a person and some aren’t. I don’t think it’s linked to intelligence but linked more closely to those with a greater capacity for compassion and understanding. You see it from a young age in children, there are those who are capable of great empathy whilst others have no concept. Is it something that is taught or nurtured? I suppose it’s something that could be but there can be stark differences between siblings. We all know of brothers and sisters who are miles apart in the way they view the world. Some people grow with each hardship they face and the empathy they already possess flourishes. Do these people spend a lot of time analysing their behaviour and are therefore more cognisant? Or is it just a natural progression that comes with age and experience for some? I’m no psychologist so I don’t have the answers and unfortunately no longer the intellectual capacity nor mental energy to research it.

On the flip side are those who stagnate and some even seem to become more embedded, less-abled to see another person’s suffering, all they see is their own problems. No one suffers as much as they do, they seem to find it impossible to really take the time to listen and acknowledge what is in front of them. I see this as a lack of honesty perhaps, and it may stem from having difficulty in being honest with themselves. Or maybe it’s their way of getting through life’s hardships, if they deny the surrounding reality they can cocoon themselves from going through what is painful work. Taking that step back from ourselves and looking in from the outside, taking time and stock to look truthfully at our own behaviour and why we react as we do towards others is not only rough going but also frightening, however I believe to grow in any meaningful way it is necessary.

Where do I fit in? I’m certainly somewhere in between and have been at points in my life completely unaware of my behaviour and its affect on others. Looking back I feel ashamed. I do try now to always take that step back and take a long hard look at myself. I know I don’t always win through yet it will be something I strive for until my last breath.

Ripples in the Sea

2009-09-18T03:40:00.000-07:00

The slow click clack echoes around the half-empty room that has seen its fair share of nothingness. A room which is filled to the edges with unfulfilled dreams and aspirations, adorning the bare walls with the graffiti of one’s mind. The long, elegant fingers, the leanest part of the body, stretch and linger on the keys whilst the brain and extremities try to reconnect. There is a time delay, like the wobble of a bike after a few years of absence but it feels the same, the breeze through the hair, the flush of the face, the refound pleasure of the long forgotten. But just as after not having ridden for a while there’s no stamina and it’s quickly apparent that one cannot go on for long, especially one who is tainted by ill health. One would think it’s been years rather than weeks that I haven’t managed to write but I suppose it amounts to the same thing. My small, sore red eyes are drooping, my fingers and brain slowing so for now I will call time but hope that this is the gentle beginning to a return to words.

The Velveteen Habit

2009-09-13T05:19:00.000-07:00

It’s a Velvet kind of day.

When the lingering cadence,

Wraps itself round my pale blue eyes,

And slithers down soothingly,

Occupying that grandiloquent void,

In a Velvet kind of way.

Untitled II

2009-09-01T04:02:00.000-07:00

Couldn't be more out to lunch if I tried.

CFS & ME

2009-08-29T07:39:00.000-07:00

This piece is an exception to the rule, it was written a while ago but I feel it's worth putting in my blog to help understanding of the reality of my physical symptoms.

Chronic Fatigue Syndrome is hardcore. I can't speak for those who have it mildly or those more severely affected, I can only describe how it has impinged on my life. I have quite literally been floored. Before becoming ill, I worked at least fifty hours per week, had a new job, which I loved, shopped, cleaned, cooked, went out; I was busy and enjoyed it. Probably, just like most of you. Take a second, reflect on your normal week, now remove 90% of your physical and mental activity. That is all CFS allows me to do, and often doing just 10% can be very challenging. Most of my day is spent on the sofa, the rest is structured and managed.

I don't do "ill" and never have. When I have had time off it's usually been for serious problems. I am tough but this, well this has stopped me in my tracks. If I don't listen to the warning signs from my body I get even sicker, to the point of 0% activity, when even getting to the toilet is a struggle. Sometimes I hit 0% even after taking care.

As soon as I was diagnosed I researched what I needed to do to try to get well and immediately put all management techniques (sleep hygiene & pacing being most helpful) into practice. I got professional help and use these aids everyday, they haven't cured me but they help. I have tried a number of treatments, none have worked. Unfortunately, there are thousands of claims of a CFS "cure" on the Internet. It is so easy to prey on us as a group as we are ill, vulnerable and want more than anything to get well again. The reality is the "cures" are very expensive and very few have gone through large enough medical trials to confirm their claims, if any at all. CFS remains a mystery clinically, the medical world so far has been unable to pinpoint the exact cause. There is a glimmer of hope as research carried out at St George's University of London seems to have identified seven distinct types (MS has 3 types), but it could be years until the research is completed. http://lib.bioinfo.pl/pmid:18057078 Therefore, all the so called "cures" are pure conjecture, and as CFS is different from person to person it is conceivable that some people have got well whilst undergoing certain ones. However, there is no way of knowing if they would have got well anyhow.

In January 2006 I contracted an acute, atypical pneumonia then subsequently went onto develop CFS. Since I first became ill I have not had one day of wellness. For some people CFS comes and goes and they have periods when they return to normal health. I unfortunately don't. Some people go into full remission. I remain hopeful that I will too, but am also realistic. Many people never recover, and from what I understand there is evidence that those who like me also suffer pain with CFS are less likely to return to full health, if at all. Some become progressively worse. Not to be forgotten is a group of sufferers possibly 25%, who are so severely affected they are bedridden, many cannot feed themselves, or do anything other than lie in a darkened room with no distractions.

There is a myriad of symptoms, which vary from person to person. Mine include the following: severe debilitating fatigue, headaches, pain (prickling, shooting, sharp, burning, joint, cramps), dizziness, nausea, muscle weakness, difficulty walking, disturbed sleep, cognitive difficulties (can be very severe), visual disturbances, sensitivity to loud noise, loss of appetite, intermittent tremors. This is not the full list but they are the main ones. Most of these are known as silent symptoms, as they cannot be seen only felt. You will notice from this list that CFS is far removed from plain fatigue or overdoing things, it is not the same.

By writing this my aim is to raise awareness for a poorly understood illness as the government is doing very little to spread the word, and the CFS charities in the UK have hardly any presence in the wider public. One day, we will finally have the recognition we deserve and with recognition will come real help from the medical community. When this day comes, we will no longer be viewed as "hysterical" or "hypochondriacs" as we still are by some in society, including many doctors.

Chronic Fatigue Syndrome is also known as ME (Myalgic Encephalomyelitis) and Post Viral Fatigue Syndrome.

It takes Guts

2009-08-28T04:26:00.000-07:00

Courage is such a grandiose word. It conjures up images of great bravery and heroic exploits, tales that have been passed from generation to generation, written down, played out on the stage or on our screens, to ignite and instill in us a will to take part in great acts. We’ve all been brought up with this from fairy tales to cartoons, the hero or less commonly the heroine winning through. So courage appears as a big gesture, the rescuing of a child from a burning building, fighting an “enemy” or protecting the fair weak maid. Courage is valiant.

Courage is a grandiose word and it should be, it’s a grandiose emotion. You have to fight your fears to be courageous, courage kicks and screams inside you and weighs heavily in the pit of your stomach. However, it doesn’t always come dressed up as a once in a lifetime feat. It comes to us all often and to some everyday, wrapped up in small packages regularly delivered which take a lot of heart to open. The addict who wakes up and says “No” that day. The mother who goes through childbirth. The disabled who insist on living independently and those brave enough to admit they need help. The minority who stand up for their rights and beliefs. The child that is bullied who walks back into school. Those who make sacrifices for someone else’s well being. Those prepared to show weakness. It tumbles out of us as a shaky voice or a heavy tread. Courage is the quiet internal struggle.

Sugared Fancies

2009-08-27T02:44:00.000-07:00

Do come forth imagined tales,

Take me far away,

Into midnight ramblings,

And lands in which to stray.

Riding ‘breast a manatee tail,

Beside the souped up sea,

Dive into the mushroomed scape,

And dine on urchin tea.

Scoop me up oh ladle wave,

Throw me to the sky,

To skim along helixed shores,

Until one wonders why.

She Said What?

2009-08-26T04:53:00.000-07:00

Language learning is a messy business, lots of fun but makes you very prone to falling quite royally on your face, usually sprawled before a fine and rather large audience. Especially in the beginning when you’re trying your hardest to get your tongue and brain around the new sounds, wanting to recreate that which you’ve just heard or read, of course those first tries are usually dreadful, so far removed from the original that either you’re not understood, or the person or persons at whom you’re directing them burst into fits of laughter. This could be because your pronunciation is really shocking, you’ve said a completely different word due to your mispronunciation or you've got your fledgling vocabulary mixed up. One such story that has stuck in my mind was whilst teaching in Java, a teacher got the words celana and jendela mixed up. Celana means trousers and jendela means window. So there he was in front of his class, mainly teenagers and a fair few of them girls, and he decides to speak in Indonesian, not really sure why as he was teaching English and usually in our line of work we don’t use the native language in class, anyhow he asks in his most polite Indonesian whether he could open his trousers. I can see now the looks on his students’ faces, and the laughter that would have echoed throughout. Possibly a great example of how to get your students not to care if they make mistakes and just have a go.

My own even more embarrassing story was when I had first arrived and I mean had just got off the plane in Java and arrived at my shared house. The first person that I met was our maid, she was tiny with the most beautiful features and sixteen years old. As a teacher over there you make enough by local standards to afford a live-in housekeeper. Desperate to make a good impression and horribly uncomfortable with the idea of having a maid, I wanted to be as kind as possible to her and show her respect. I had no knowledge of Indonesian at all when I arrived, so there I was meeting this adorable girl, a lot more humane than some of the teachers I was about to encounter and I asked her name in English at which she replied Apa. Gosh I thought that’s an easy name to remember. That weekend I tried my best to communicate with young Apa when she wasn’t tied up with her work which some of my housemates unashamedly abused, I spent time with her and the dictionary. It was going along swimmingly, throwing about Apa this and Apa that, the only odd thing was every time I said her name she repeated it back to me but I just thought I must be pronouncing it incorrectly so I would conscientiously repeat it back to her, sometimes this exchange could go on for a while.

I decided to do a little sight seeing but the guide book didn’t offer up much in the way of places, however the zoo certainly popped up and a friend of mine back in the UK had suggested I go. I managed to get across to Apa where I wanted to go and got her to understand that I’d like her to go with me. We got into a rust eaten, sweltering, rank Zebra taxi, and off we went to Surabaya Zoo. The first thing that hit was that it was heaving and everyone stopped to stare and I mean everyone. What is important to tell here is that in Surabaya foreigners are a rare breed, and are a source of much entertainment. Forget the animals Apa and I were the main attraction. We did our best to move through the gawping crowds but smiling or saying hello in response to all the calls of “Hello mister!” was pretty exhausting. Finally we stopped in front of the monkey cage, the poor beasts, well all the poor animals, the zoo itself was one of the most distressing places I’ve ever been, most of the animals showed extreme signs of stress but that is another story for a different day. There we were in front of the monkey cage, me with my nose in the dictionary trying to piece together a sentence or two to speak to Apa, when some of the intrigued masses were brave enough to come over and speak to us. They asked us our names, of course they asked Apa in Indonesian and she replied Liz, I did a double take as I thought maybe I’d misunderstood their question. The group we were talking to spoke a little English so I said that her name was Apa, where they duly all started laughing but kindly informed me that her name was Liz and that apa means ‘What” in Indonesian. At that point the embarrassment rushed straight to my already red and sweaty face and flowed through every part of my body. No wonder we were having these ridiculous exchanges of me shouting “Apa” and Liz replying “apa” and me saying “Apa” and her retorting, well you get the picture. What on earth she thought I hate to think but of course she was nothing but lovely to me.

Riding High

2009-08-24T04:21:00.000-07:00

Riding High

Upon a self-righteous horse

Until one notices the fall

So long ago taken

Etchings

2009-08-23T02:35:00.000-07:00

It's never what you think it is.

Nan's Pick n' Mix

2009-08-21T05:22:00.000-07:00

An old friend, if that is the right description, of whom I was very fond, who made me feel safe many years ago when I probably needed looking after but didn’t think I did due to youthful naivety, recently came back into my life via Facebook. So an old friend, in the most literal of descriptions is probably the best, asked me where I was currently living, he knows Manchester, used to live here but didn’t know Levenshulme, it wasn’t the area we used to hang out in at all and well those of you who know it will know it’s not the kind of place you go for a visit if you’re from out of town. Not because there is anything wrong with it, there just isn’t a lot to see. During our correspondence he asked if it had been gentrified, such a wonderful question I thought and of course open to a piss take. I want to make something clear before I go on I love where I live, am happy and comfortable but I do tell things as I find them, gets me into all kinds of trouble but some traits are hard to control.

Levenshulme is a big pick and mix of a place, the kind you find when you go and visit your Nan, they're not quite the sweets you’d have chosen but there are some great ones in there with the odd minger. I’m not one for history so I won’t tell you the past movements of the place, why people came and when, though I am sure it is interesting but I will tell you of the people who are here now. We have a mix of students, teachers and other professionals priced out of better areas, immigrants from all over, Irish Catholics and general fuck ups. There are so many characters around that my daily walk is never dull, I also find people here really friendly. Almost everyday my eyes meet those within my community, we don’t know each other, have never spoken yet we exchange smiles which range from the very shy and gentle to broad, toothless grins, the young to the old, and every race gladly joins in this much forgotten simple expression of humanity. We are a madly mixed up smorgasbord, a lovely representation of Britain today. The only group that doesn’t smile at you is the students, too young perhaps, too up their own arses at this stage of their lives to reach out, not sure but that’s just the way it is.

As far as I’m concerned the people are the best thing about the area. The facilities are rather ramshackle, there is litter everywhere, it's slightly unruly never quite doing what it's told, there is a rather unsettling trend to put plastic flowers and plants in gardens and a lot of poverty. I mean we can’t even afford an Oxfam, but then I’m not sure if that says more about Oxfam than it does about Levenshulme. We do have a great charity shop though, that I support wholeheartedly, get all my books from there. Levenshulme is not the ideal place to go out drinking either, my ex partner and I did once or twice when we first moved in but you can smell the sulphur just ready to light up, not a good mix with all those spirits being bandied about. When I could still go out and drink, I preferred a quieter place with good music rather than dodging all that flying glass. That said it depends what takes your fancy, doesn’t it? If you like a place with edge, not fully formed, a non-conformist as I do, as I am possibly, then this may be the place for you.

As a Dear Friend Once Said...

2009-08-20T03:15:00.000-07:00

I recently had one of my dearest friends to stay, which was just wonderful. He’s been a rock for me, or should I say a fully fitted scaffold. He’s there through all of the horrid, weird and funny times. He was my best maiden and is married to another dear friend. Sadly for me they are not in the UK but happily distance has never tempered this friendship and I doubt it ever will. We Yahoo conference often with the third party of this wonderful crew, a fine example of a lady whom I also adore in another part of this gorgeous world of ours. I thank profoundly the bright sparks for inventing the internet and keeping us all so connected.

We were discussing how the illness affects me and the difference between our capabilities. He said it was a good example to help people understand. It was possibly 11 o’clock in the morning and he had so far, breakfasted, showered, done some research on the computer, been to the supermarket and chatted to me. I was still sitting in my pyjamas, which speaks volumes and what he had just done in two hours or so I hope to achieve on a very good day, not in two hours but in nine, spread throughout the day, between periods of rest. That would be minus any serious research on the computer, any kind of detailed reading is completely out of reach to me, some gentle surfing and skimming is the best I can hope for. And on bad days (which last for weeks at a time) well that would be me just curled up on the sofa or in bed all day, moving only for essentials. So as my dear friend suggested there it is. Do with it what you will but I hope that it will help you, as it helped him.

Moonbeams

2009-08-18T04:02:00.000-07:00

Moonbeams skating across lightly lit, rippling ponds.

Hands reached out to catch just a trace,

Only one.

Hours I spent stretched on my knees, eyes fixed,

But dark they remained whilst silver flitted

Inches away.

Not one second did I falter or fall,

Until the orange dawn spread throughout

And I stood tall.

Chalked Up

2009-08-17T02:23:00.000-07:00

Why pander to the unseen masses

Only for them to scratch away

Slowly eroding whatever vestige remains

Of peppered explorations

Which began at the first broken dawn

Whatever you do, don't mention the "War."

2009-08-16T09:55:00.000-07:00

I don’t intend my blog to be filled with all things related to CFS, it is a huge part of my life but it isn’t my whole life as it is part of me but isn’t all of me. Obviously as I am affected in so many areas of function it is hard for it not to be a regular subject. I’ve just returned from a few days with my wonderful parents, I stupidly decided to take the bus as I hoped I was well enough, it’s only a few miles away and when I am “well” enough to take the bus now and again it makes such a difference to my life. It’s related to independence, ego and dignity. Such a small thing comes to mean so much with this illness. Well I took the bus and then unfortunately spent most of my time feeling truly awful, and a lot of it lying down. I have left there feeling better in other ways though.

Before going to my parents I’d started to go a bit off the wall shall we say, psychologically, a taboo area us CFSers don’t like to mention, or only within safe circles. The illness is still viewed by far too many as a psychosomatic disorder so talking about the secondary mental effects of the illness is often not openly discussed. In fact I may well get a flurry of objections to this post. I want to make sure that it is clear I am talking about how the illness affects me, not everyone with my illness. I find myself alone often, which I really don’t mind at all, I am quite happy with my own company, but the illness is in its very nature isolating for those of us who are more severely affected and unable to socialise either via work or going out. In fact networking sites like Facebook and Twitter are a life saver for me when housebound, it means I get to have some social interaction as often as I am able to within the limitations of my symptoms. So a couple of weeks alone, with your own thoughts, day in day out, fighting difficult physical symptoms can play with your mind as I am sure you can imagine. This is a reaction to the situation I have been forced into by the illness not the cause of the symptoms. I find myself landlocked.

However, being around my parents for a few days eased my mind, even though I did have to spend a fair amount of time resting, alone. Having that human connection brought me out of my own head. In the previous two posts I’ve written about my recent thought processes or should I say lack of, they have considerably calmed and here I find myself much more easily being able to relate my thinking. If any of you were in doubt of the forces fought with this illness then I would say to you it is a multi-thronged attack and until there is understanding of its cause I will have to fight off each one constantly, living in hope I will one day win the battle.

De-Void

2009-08-15T02:33:00.001-07:00

Deary me I'm still pretty devoid of ideas for writing. Perhaps this is a good sign as my writing usually takes place as an emotional reaction to something. I think this is the reason that I write better poetry than anything else however, that is possibly shifting now. So does this mean I am currently calm and without stresses, I wish it were the case. My head is still quite unfocused with thoughts switching quickly. I've tried to write a number of poems this last week or so but the train of thought isn't there. I will keep trying though and wait patiently for clarity of thought. I just have to remain confident in my ability to fill these pages, I don't want it all to unravel so unspectacularly soon. This is my experiment, really the first thing I've focused on that isn't about recovery, it may help but it's not the intention. This is my creative space, my studio of scribbles, sketches and paintings to shape and reshape.

Shards

2009-08-12T08:16:00.000-07:00

So hard to write anything currently, my thoughts are smattering shards, intertwined yet clashing and racing in and out of each other. Trying to grasp one and ride it through is impossible, they are intangible and flighty, they jump from one place to the next. I need them to bide their time, linger and be weighted in space so I can hold on to them, turn them over, play with them, help them grow and nurture them. These are shallow, not inconsequential as no thought ever is, but they are mischievous and have no patience for anything serious. I wonder where all the thoughts go, where are they filed, in which part of the brain until ready to reappear, sometimes the wrong thought pops out at the wrong time and the one you want for that moment refuses to come. It will come later, when it’s no longer needed and the perfect moment will have passed. How much longer this present state of mind will last I wonder, I find it quite tiring but it is out of my control. Perhaps the mind needs this playfulness for a while, to rest or subconsciously store the thoughts of consequence that will come hopefully at the appropriate time.

Limits

2009-08-11T04:15:00.000-07:00

Mortality

Standing on the edge of a precipice

Staring into a finite space which

Lasts as long as my memory

What Gives

2009-08-10T07:25:00.000-07:00

Under misconstruction.

Armed

2009-08-08T04:46:00.000-07:00

When the invader which is in every crevice, running along every vein, pushing forward forcefully even to the tips of the toes and fingers, weighing down the musculature, dragging every ounce of flesh, sluggishly reforming the brain, decides to retreat for an unannounced breather, confusion ensues. Verve quickly fills up the newly relieved carcass, a sudden urge to do things unachieved for so long, yet experience bellows it’s the wrong thing to do. Left in a quandary, lassitude is still necessary but so unwelcome now, no more able to stomach staring at the void that is some producers far too often twisted mind, but stare still it must. There was no choice given before so it was easier to endure, knowing it had been taken over and to fight back was impossible. Suddenly a world is opened, laid before its starved and willing vessel, being teased cruelly with proffered titbits of remembered delicacies. The battle continues a fresh but against a new attacker, this one is light almost invisible, its strength lies in giving all the fight back to the attacked. The veterans have a better chance of winning this one, been tricked too many times before, it's a sleight of hand by the wily enemy, knowing that the engulfing tedium must be obeyed, the only way to win a little more reprieve. If the victim gives in too quickly to the first signs of apparent retreat the reposing army will engulf it once again, and it will dare to wish for eternal ennui.

Untitled 1

2009-08-07T10:11:00.000-07:00

Trapped on the inside of the inside.

The Smallest Things

2009-08-06T02:48:00.001-07:00

Patience

The soaring lark brings

New shoots upon the maple

Some eaten, torn, in bloom

Until returned to bare

Age

Dancing sunlight on

Discordant waves ruminates

Centuries old sand

Back to the Beginning

2009-08-05T02:45:00.000-07:00

A two-ton truck has just parked itself in Cara’s stomach. It came hurtling at light speed and floored her. She has now entered a parallel universe and is soon to find out that she no longer speaks the same language. The vocabulary and syntax are as they were but very few people will understand her. Her previous existence will become irrelevant. Her feelings and thoughts will no longer have any resonance, worth or impact, her former self will cease to exist in the eyes of most and she will be judged at the drop of a hat by people even those she needs most, who have no idea of the force of their prejudice. Ironically, she can understand their narrow-mindedness as she used to think the same way. Luckily her parents are the constant in her life, holding her strong through the difficulties to come.

Whilst waiting in the silent, depressing, greying surgery she felt dizzy and disoriented. A short bus journey and a two hundred metre walk had set it off, the nausea almost overpowering. She’d already phoned and been told her test results were normal. So why did she feel so bloody awful. She certainly didn’t feel normal, she felt very strange, almost alien. A complete detachment from her surroundings would descend regularly. It was almost as if her physical being was separated from her inner self . This was the parallel universe. Eventually she was called in. The walk to Dr Graham’s office seemed a million miles away. The door almost impossible to open, it was as though there was a playful child on the other side trying to stop her entering with a cheeky grin on his face . The visit was over in moments and she left no wiser that when she had arrived. She had her diagnosis but it meant nothing. Dr Graham had been very pleased that all her results were normal, later she would wish this wasn’t the case and that she had something which was tangible in everyone’s eyes.

“I’d say you’ve got Post Viral Fatigue Syndrome,” he said in fairly jovial but obviously uncomfortable manner, which was perhaps the way he always gave bad news. Make light of it so there is no emotion to deal with.

“So what does that mean?” She replied, rightly perplexed.

“Well some patients suffer for a few months others for a few years,” he quite casually retorted as if it weren’t a problem. She was therefore taken in by his non-committal air and did not think she had anything too major to worry about.

“So what can be done?” she naively inquired thinking he was a doctor.

“Nothing. But I can give you something for the nausea. Take it as soon as it starts.”

She had already told him that the nausea came in waves and lasted ten to fifteen minutes each time. It seemed illogical to her to stuff herself with chemicals at the drop of a hat. She knew there was no point arguing with him as he was very difficult to deal with and did not like her discussing his methods. He pushed the prescription her way. He loved to push pills it was his solution to everything. She visited the doctor only occasionally and she rarely had the tablets dispensed, in fact she’d only been twice in five years until the pneumonia and all of the subsequent symptoms had started. She only took medication when she was seriously ill and knew it was vital for recovery. Then as a conciliatory gesture, the doctor almost looking guilty, offered her a sick note. She refused it and he shrugged. He didn’t say why she shouldn’t be working or try to convince her it was the best course of action at this moment in time, that by pushing through the illness at this stage she could worsen her condition. She was ushered out of the surgery like a bad smell and every time she returned to see Dr Graham it was the same. She ended up coming to the conclusion that it was medical impotence that made him so uncomfortable with her illness. She was clinical insecurity staring him in the face, waiting for answers, desperate for help. Help did not come from that cold, uninviting room inhabited by the cold, uninviting doctor but in the form of a two-ton truck named knowledge.

Diagnostically Speaking

2009-08-04T10:08:00.000-07:00

We’re in a difficult place with CFS, it’s so hard to describe what level of discomfort we feel and there is nothing to measure it, as there is no diagnostic test. Doctors, family and friends can only rely on our own account. Almost all other other conditions have a test so when you go to see your consultant they judge how sick you are not only by listening but also by looking at your blood work or ECG or whichever test is appropriate to you. We unfortunately only have anecdotal evidence, so each time you speak to someone about how you are feeling it’s almost like being in a job interview. Have you given all the information you needed to, did you present it the right way, how did you come across, neurotic, depressed, as a hypochondriac or as the person you really are: sick and looking for relief and help from the person sitting across from you. I know I always over analyse what I’ve said, worry that I didn’t give the right picture of what I am actually going through day to day, wonder if they think it’s just a lot of words. I consider carefully how best to give my evidence. I now talk in terms of percentage of function, or how long or far I am able to do things for. It helps to give something to measure against. But there is always a doubt in my mind if I’ve properly explained.

It leaves us in a tricky position, open to miscommunication, friends and family always ask so what did the consultant say? How did he find you? And well there is never anything to report, my specialist never says how he thinks I am. He will adjust medication, he is a good listener and a believer that it is an organic disease, so I feel as if I have one ally within the medical world but he never says you’re at this stage of illness so we need to do this, for example. I can’t tell people the test results were the same, worse or better. It is up to me to tell people how I am feeling. So there is always a voice that asks do they believe me? Do they understand? Over the years I do think I’ve learnt to explain a little more clearly but it will be so much easier for us the day we have those diagnostic tests. We sufferers will then understand these often frightening symptoms and why we are experiencing them, doctors will be supportive as they will also feel more secure in their knowledge and capabilities, and family and friends will have a more normal way to discuss our affliction, as they are able with other illnesses. It will remove a whole other dimension of confusion and worry from this debilitating condition.

Fragments

2009-08-03T03:12:00.001-07:00

A dear friend recognised the different Caras within my writing, which is just how I see myself, having lived so many different lives, been through various stages of growth, wants, desires and health. I feel there are a few of me rattling around. Not sure who knows them all, not sure I even know them all or want to. My perception of self being so fragmented, life broken down into segments of memory. The blanks, are they where my life stories have begun and ended? I suppose talking of fragmentation is quite apt because that is how this blog is too, the limit of writing in twenty minutes make for a jigsaw as I wander between times, ideas and styles of writing. It’ll be interesting to see if after a few months there will be a number of stories running parallel within the blog that can be pieced together to make wholes. To be honest I also find almost every piece to be fragmented too. Rarely do I feel that a morceau is correctly put together, they never seem to end as they should. I find myself staring at a section knowing it's not quite right in syntax or artistry but all I can do is fixate, I can’t find the error. It’s annoying to say the least. It's what happens when you write the first thing that comes to mind, or at least it's what happens to me, it’s probably a fair reflection of the inner working of my brain, the flotsam and jetsam if you will and how suddenly it freezes up, goes on strike and says that’s it, that’s all I've got for you.

Hushed

2009-07-31T02:34:00.000-07:00

Better left untold

Did you see the scene unfold?

The options were limited as I’d no idea you’d lied.

Still so innocent,

Not even in your presence after all this time.

In essence nothing has changed yet a lifetime

Of movement, joys and failings of a kind

Which belie our time together.

The memories that endure the tethers

Of our Reigns slip through whether

We want them to or not.

For the Love of Boyo

2009-07-30T07:33:00.000-07:00

The huge, pulsating, cockroach festering city sprawls between volcanoes and waters occupied by the Queen of the Sea, who is only placated by the soothing nature of green. Tourists are rare, either foolhardy or wise enough to ignore the mass produced guides which herd along those not interested in misadventure, just wanting to follow each other’s footsteps and recount the same stories but making sure that theirs is so much better than the last one they heard. Tales from the same city, the same bar, the same guesthouse, the same hidden gem. But this city is not one for the fainthearted, it will engulf you and beguile you should you be so inclined. See past the slums, open sewers and ostentatious Chinese new builds and stare deep into its heart but don’t falter as it is profound.

The brightly coloured sarongs are as ubiquitous as a suit in London. When you smile at a baby or try to play peek-a-boo with a child they will cry. You are an unknown, an unusual. Adults constantly stop and stare, their countenance frowned. It is good for the soul to know how it feels to be an outsider, a real outsider. You can’t blend in here, every movement is scrutinised, followed even. However, look deep into the eyes and crack a smile at your spectators and you will receive the warmest one in return that you’ve ever encountered.

The dust is thick, the pollution black and the torridity seeps into every pore, every gland and organ, then interminably seeps out again. Slow, heavy steps accompany this sudoriferous beat. Thankfully, decrepit, elderly gentlemen wait on street corners, muscles sinewed and glistening, putting to shame physical laziness, these are not the greased biceps of peacocks but the force of necessity. They repose, stretched on their three-wheeled, battered becaks. As soon as a customer is spotted the men are on their feet, some with broadened smile, some with faint hope, some with evident disdain, all call you over, knowing this is no place to walk. In the beginning with an almost stereotypical western psyche I pushed past with nose in the air, “I am the great adventurer I can walk”, and walk I did. There are no pavements as such, walking is considered a strange past time here, and usually only happens in air-conditioned malls. A five-minute walk is considered far and ten-minute walk is far too far. I had to walk in the roadside alongside five lanes of traffic, push bikes, becaks, mopeds, motorbikes, cars, bemos, buses and lorries. It didn’t take me long to turn my head and a wise one was slowly, gently, driving his becak just behind me. I got in one for the first time and the love affair with Surabaya began.

becak - pedicab

bemo – minibus used as public transport

Directions

2009-07-30T07:22:00.000-07:00

Writing this blog is the right thing to do, I think. It’s funny as it is certainly focusing me more but it is changing my writing. I’ve been writing for a few months, twenty minutes or so per day when the illness has allowed me. However, before I was just writing for myself, saying my own pure thoughts, pouring out the first thing that came to mind, those very personal and private ones. Rereading a lot of that work I don’t feel it‘s suitable for here. Now I have to consider what I write, be aware of what is appropriate. I have no idea how many people are actually reading this blog and in all honesty I doubt there are that many. I think it will be the people whom I am closest to, but that still makes me careful now about what I choose to put out into the public domain. I don’t think I should stop writing the more intimate pieces but do both. I imagine the first will be cathartic while this one proves slightly harder. It is good for me, gives me something to think about whilst sprawled on the sofa for hours on end, during the days of solitude, not something I mind. I am very happy with my own company, always have been, I do now live a semi-hermit like existence, with my main human contact being through the Internet. It is very different to my prior life, which was lively, colourful and exciting to say the least but even then I would retreat into solitude fairly regularly. Obviously now I find myself mainly on my own and there is very little social outlet, I would love to get out more and I do try. I make plans but most of the time my symptoms are just too severe. A blog is perfect for someone in my situation and probably why there are a plethora for us to read. I wonder how mine will develop over the coming months, what the constraints of an audience will do to my writing. I sincerely hope it won’t become stilted. Will the focus be too much for my CFS addled brain? Just as now, it has taken me a long time to produce these last few sentences.

Dead Pigeon

2009-07-28T02:54:00.000-07:00

There’s a dead pigeon at the bottom of my garden

I’d seen it the day before

I knew it was dying

I approached it gently

It just was, in total peace

Eyes following me

No flapping or moving away

Knowing it was too late

I left it to be

Flying High

2009-07-27T02:39:00.000-07:00

Have found myself submerged in dreams these last few days, hours and hours of daydreaming of very detailed imaginings. It’s quite unusual for me but something that has been happening of late or maybe I’m only just recognising it. I find it quite disconcerting and wonder what the cause of it is. Is it due to the fact my life is so unfulfilled, my world so small now or my mind travelling far as my body no longer can? I suppose I shouldn’t worry about it, really what is the harm? I am more used to having two feet firmly on the ground though and to having my mind focused on what is happening in my life, how to organise it, how to deal with problems properly. Possibly as life is now so quiet, so tranquil most of the time, that my main problem is how to structure my day, how not to do too much of one thing of another, how often to rest, how to stay mentally strong but everyday is the same. Strangely enough I don’t really feel frustration, I think day to day living is physically challenging enough to keep that emotion from being too prominent, also I don’t feel boredom as much as you would imagine, of course there are moments but the overwhelming emotion is not feeling intellectually satisfied. My level of mental stimulation is very basic now as I can no longer read for any length of time or in any great depth, when I do manage to read just one complete article in The Independent, for example, I am ecstatic but that is quite rare. I have to content myself with listening to copious amounts of music and browsing art and photography websites, so sounds and pictures. I miss not being able to read properly, I have ached for it but it’s something that I’ve also grieved over and another of the things I’ve had to let go of to be able to get by day to day without plunging into severe depression. Back to my daydreams, I keep stopping myself in the middle, telling myself I’m being ridiculous but perhaps I should allow them, let them engulf me, ride the wave of the nonsensical and bathe in the glory of my imaginings. They may bring forth new ideas for writing.

Knots

2009-07-26T04:36:00.000-07:00

Knots

Cutting those loose ties

Hanging, dangling

Tired of them flailing about

Directionless

Yet a stubborn strand clings on

Arrogantly

Voyeur that it is

Just waiting to sew anew

Mischief in mating

Slow growing

Till re-tied

Tight

The Truth

2009-07-25T04:52:00.000-07:00

How do I know the past is not a fiction, conceived to reconcile the difference between my state of mind and the present?

So I posted this on Facebook the other day and enjoyed the responses it brought forth. It was a link to a great photo set. A series of photos of the same woman starting with her all dolled up looking very arrogant to the final one of her having been attacked and homeless. The statement being made clearly denotes those memories of ours that we have amended slightly so that how we see them today become bearable. Well that’s my interpretation. I certainly know that I have quite a few like that. I have so many memories that I can no longer recollect. Is that due to very poor memory or that I have a selective memory? I think with the illness and my past excesses it is a mixture of the two, there are of course many memories that I can’t wipe out, I can’t forget them no matter how hard I try but are all the details correct as they happened? Did those who witnessed them have the same memory as I? Also we perceive things through our eyes, through our ideals, our values. I believe three people will witness the same event with a different view, is there ever a correct version of events or do we just attach ourselves to the version that suits us most at that moment in time? The version that fits with our own story. Is it even possible for us to have any idea what the real facts of our life truly are? We know where we were born, most of us who our parents are, where we worked, the paper trail if you will, that we can’t deny, unless we change it in some way. But all the finer details, the intricacies, the moments in time that have made us who we are, I firmly believe we all have a fair amount of fiction in the story of our life. The one we see, the one we live with day in and day out. Not least because none of us truly knows oneself inside out, a lot of us search to know ourselves but we can never see ourselves as others see us.

Therefore, we miss out on whole sides of ourselves that we are completely unaware of. So once again we arrive back at the fiction we create, we have a whole vision of ourselves in our heads that only takes in our truths and not the truths that others see. We can on occasion through an honest partner or friend find out about our best and worst traits, how we then see that in relation to our fiction is possibly very different to how they see it. So do we also make up this fiction for those around us, our friends and family or do we see them in complete reality, is their history as we see them correct? We have all put someone or something on a pedestal only for the reality to come crashing down, so do we then see the reality or because we’ve been so dismayed or disappointed do we then make the reality much more negative then it really is? Just as we made the positive far more positive than it really was. How do we make sure that what we are looking at is the complete and true history? As rightly pointed out by one commentator we don’t. Is it really that important, life is so hard as it is then maybe a bit of poetic licence does us no harm, it helps us to get by in our day to day living. However, which one is worse; to have an overly negative view or an overly positive view of our past? Does an overly negative one protect us more from future disappointments, mistakes or hurt? Do the barriers that cynicism creates buffer us? Or the positive one means you can bounce back more quickly from encountered problems? The positive imaginings also acting as a protective barrier.

Tranquility

2009-07-25T03:11:00.000-07:00

The calm and the quiet give me space to think, to separate and dissect all the feelings running around. Each one requires the time for contemplation, in a little bubble. Slowly I calm and all the dust settles, I can see the piles. Some are large and have to be dealt with quickly before they are disturbed and return to the ether. Others are hidden and may need more attention to find but with this quiet I’m sure they’ll be found. I’m looking forward to it, an internal spring clean, a processing, and compartmentalisation of thoughts and feelings if you will. I was scared of the solitude but these last few weeks have shown me that what I sought is what I need. I knew this deep down, my inner self craves this peace and hopes that this will allow the space to help me recover somewhat. Time will tell, anyhow for now it’s what I desire, my self crying out for it. So here it is. On its way.

The Why

2009-07-24T04:15:00.000-07:00

So here I am making myself do something of consequence instead of just Facebook and Twitter. Obviously got to be careful and need to watch how long I do this for or my plans will be scuppered, and I won’t be able to write for long. The plan is that I just write now everyday, a little to begin so I can slowly build up my stamina, or at least that’s the plan. After three and a half years I’ve learnt to be highly realistic, I know that often even being really careful this illness will still get the better of me. It’s like some sick joke really. No one really knows what causes it or why some people can get over it and some can’t. We’re not supposed to do a lot, take each day in a structured and managed way, which is what I do. That whatever you can do on a bad day is what you should also do on a good day. Then that way you slowly build up your activity, if it makes you feel worse then you’re doing too much. Sounds simple doesn’t it? Well try living it, I worked tirelessly on those goals and yet the illness still kicks my butt, and when I say kicks it I mean royally. I’m usually down for four month stretches, then slowly climb up but can do very little even during my good times. I will write now for about 20 minutes and that will have to be it for today, and I am in a better phase. I have huge plans for my life, I have a lot going on in my head, but only being able to write 20 mins or so a day is not going to get me very far. But I have to do something, I can’t handle being so damn unproductive. It just goes against my nature, so am trying hard to find the balance and carve out some kind of existence for myself within the limitations of this parasitic disease.

Everyday now I will write something, anything, related to whatever I’m feeling. My big dream is to write a novel and I’m very good at achieving my dreams, even if it’s rubbish at least I’d have done it. But I won’t compromise my health for it, I still hope that living within the limitations of this illness that I will one day recover, maybe not fully but at least to the point of being able to work part time. I have too much to give to this world and I won’t let it be robbed of me, held hostage by a body. I do hope I don’t have Stockholm Syndrome without realising it and have some unhealthy symbiotic relationship with my kidnapper. I have worked hard not to. I feel I now have some control over it, not always and not a huge amount of leverage but some anyhow. Well there it is, I can feel the warning signs now, brain has almost slowed to stop, energy going.