Windows in Time

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, the air gently touching my skin, bringing a freshness long forgotten. 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 or making the room spin. 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 that I'm not going into remission after four years. 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.

Broken Words

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. 

The Offbeat

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.

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.

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. 

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. 

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. 

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. 

Flying High

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.

The Why

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.