CFS & ME

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

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

 

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?

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

Riding High

Upon a self-righteous horse

Until one notices the fall 

So long ago taken

Etchings

It's never what you think it is. 

Nan's Pick n' Mix

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...

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

 

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

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."

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

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

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

Mortality

Standing on the edge of a precipice

Staring into a finite space which

Lasts as long as my memory

What Gives

Under misconstruction. 

Armed

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

Trapped on the inside of the inside. 

The Smallest Things

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

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

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

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.