Growing Pains

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

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

 

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

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

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.