His name is ME

I must warn you, there is no escaping him. He comes to you like a jaunty salesman, using sleight of hand to sell you lies. When he asks you what you hope for, what you dream of, don't answer. He will not give them to you, he will take them from you. He is a dream eater, a hope stealer, a futures thief.

Imagine the things you love to do, the simple things, the fun things, the silly things. Now imagine the things you hope to do, big and small. Just like that he tricked you into thinking of them, and now he has stolen them from you. Gorged himself like a junkie on your hopes and dreams, so he is fat and satiated and you will go mad with the loss.

From now on you cannot travel overseas or go camping, you cannot go out to the pub or dancing, you cannot go shopping or to picnics, you cannot go to the movies or to a salon, you cannot play sport or exercise, you cannot cook dinner or drive to get takeaway, you cannot garden or even compost, you cannot walk your dog or clean your house, you cannot drive or some days walk.  And for the future, you cannot work or study, you do not have financial freedom, the pension is sparsely enough to allow you dignity, you cannot have children and you may not ever find love, you cannot own a house or build a house, you cannot buy a car new or old, you cannot live where you want, do what you want or be who you want to be. You cannot do anything by yourself. Rarely, if you are lucky you might get to do one of the can-nots but it will be at the whim of others, you cannot choose anything for yourself.

He tricked you, and now until you die your living will be like dying. But his sleight of hand is like artistry and while you live with that horror, it will be invisible to the outside eye. Occasionally your hopes will be raised when you think a discerning eye has seen through his trickery, and then you will deflate with the realisation that they have not. His mark is indelible, and he has pulled a heist so complicated you would admire his genius were you not the victim. Because while you suffer the withdrawal of your future, you will also be wracked with pain, exhausted beyond comprehension and barraged with symptoms so rare others will wonder if they are makings of your own creation. You would laugh at his audacity at the ridiculousness of his plan, but it is working. You are alone, you are close to death, just close enough to prolong the torture, not so close to death that there is relief. And yet no one sees you, no one is watching and slowly they forget you. He has alienated you so effectively that your voice is no longer heard. He has made you so small, taken everything from you, left you weak and desperate without any hope for the future.

He has the last laugh. Because when you try to tell people his name, they will look at you with incredulity. His name is ME.   

Symptomatic

My chin juts forward pulling my neck into taut visible ropes of muscle, then swings abruptly to the left drawn magnetically to a target I cannot identify, my shoulder raises in a one sided swinging shrug to meet it. My head juts forward again, eyebrows forcing themselves up announcing a surprise I do not feel, and my upper body twists. The movements are spasmodic, violent and unpredictable. It is as though my neck has lengthened and all my joints loosened, my movements not unlike a puppet with an inexperienced puppeteer, disjointed and violent. The muscles that run between the joints strain to contain and control the forceful contortion, tightening into knots of pain as they contract and release.

I try to speak and it is as though I am verbally constipated, my eyes roll sideways and upwards, my chin juts forward again, my throat constricting. Words come out eventually but they are garbled, half strangled or they stutter out in increments.

When I try to rest my body rises suddenly and frequently off the bed, like a patient being shocked with defibrillator paddles. My eyes feel as though they are bugging out of my head, they strain to break free of the constraints of my eyelids, darting dramatically to the side or scrunching emphatically like a child learning to wink.

These symptoms built up over a few days last year before I realised I should probably go to the hospital. Since we get so many weird and wonderful and ultimately inexplicable symptoms, I have a policy of giving new oddities a few days to subside before I investigate them.

This one required attention though and when I attended emergency, the doctor asked incredulously why I had not come earlier. What I was suffering with was an acute dystonic reaction to medication, so acute that staff from far and wide came to watch me do the drunken uncle contortion dance in my seat while I waited for treatment. The treatment was a reversal drug, Cogentin, given intravenously in an injection. Problem being of course that the puppeteer refused to relinquish the marionette strings, so like a possessed or crazed patient, I had to be held down by two nurses, a doctor and my sister. And still I writhed, the spasmodic disco increasing in intensity until they pinned me down again to administer another injection.

The thing is, a decade ago, before I was ill, this series of disturbing neurological symptoms would have had me scurrying in a panic to the emergency immediately. But with hard won experience of sceptical, dismissive and condescending doctors, I avoid emergency rooms unless it is absolutely necessary. Even then I am loathe to go. Because when I go to the hospital despite the clear acuteness of my illness and whatever symptoms are threatening my life at that moment, the doctors put on their blinkers, become tunnel-visioned and refuse to see what's right in front of them. I could be having a heart-attack in front of them and they would simply raise their eyebrows at my theatrics.

I am now suffering my third bout of Dystonia. And I am not sure why the latest attack has happened. But how incredibly sad is it that, their behaviour, causes me to suffer unnecessarily rather than face their discrimination?

So instead of avoidance, I have decided in future to pose a few questions to my treating doctor/s. (Well in the case I can speak, otherwise I might just have to type them out.) Firstly, do they love anyone who is ill with CFS/ME? Secondly, if not, have they read ten or more research papers on diagnosis and treatment of CFS/ME in the last year? Thirdly, if their answer is no to both questions, how can they be so arrogant as to assume to speak with any authority on my illness? Their qualification to speak on CFS/ME is non-existent. It would be like a biologist attempting to speak on entomology. They are both sciences, but they are poles apart. And lastly, with no appropriate qualification I would appreciate that they reconsider their perception of my illness until they are better informed.

In the meantime I will suffer this contorted dance, symptomatic of acute Dystonia and I will dread the hospital and their derision, symptomatic of the medical industry's continued pursuit of ignorance of our illness.  Somebody investigate the cause of the symptoms, please and then we might find treatment.

T.A.T.

My world has become more and more insular, more separate and the outside world more alien. Partly it has been a coping mechanism, partly it has become the natural rhythm - or should I say stutter - of my life but mostly there has been no choice.

With my world getting smaller and smaller, I have spent too much time journeying inwards unable to journey outwards. I have always thrived on interactions with others, socialising, mingling, bantering and making connections. But I am no longer adept at it and like an unenthusiastic guest at a dinner part I feel uninterested and unable to muster the energy to engage. The exhaustion and pain make everything baffling and nonsensical. And the loss of vocabulary combined with my loss of cognitive function and short term memory problems make me feel clumsily inarticulate, uninteresting and surreal. And with the loss of that interaction, that affection, that laughter, that stimulation, my heart muscle has seized up into a painful knot.

I am a perfectionist and I have always been articulate, a great conversationalist, gregarious and sensitive to others. Now I struggle with how to balance that through the frustration of this illness and my severe physical restraints. And with the loss of my sense of self, I have inadvertently become stingy. In the past I could have said with all honesty, completely unflinchingly that I am a great friend with a really generous spirit. But that is not true any more. I am not a terrible friend, but I am not what I was. Visiting so often with death last year changed me, marked me, and made me darker. I saw the truth of people without the romance of life in the way, and many let me down and broke my heart. So I have become more selfish, less tolerant and markedly less generous with my heart and emotional energy.

For a long time I have felt unlike me, lost and foreign. And I realise now that it is not just illness that is robbing me of myself, but that it is me who has locked me in the basement of my heart unable to communicate with the world. It is me that is keeping me separate. And by being so inflexible with my expectations of myself and by trying to protect myself I am hurting myself. By closing off myself and my heart, I may protect myself from heartbreak, but I don't let anyone or anything else in.

One of my biggest fears with this illness has always been that I would become a self involved twat. And by spending so much time alone I have become a little egocentric, because I needed to to survive, but also without outside influence perception becomes skewed. The inward journey has embittered me with struggle, hardened my heart, closed me off and made me what I feared... a bit of a self involved tight arse twat (T.A.T.).

So for those who managed to get through the minefield in the last year or so, thank you for persisting you brave little soldiers.  And for those whom I love, and yet I have not been as available to, things will be different. I cannot promise I will be as I was before, too much has happened and illness makes consistency near impossible, but I will try to give you the love you give me. You deserve it.

I only love you boo!!!

Fury. That is where I'm at. And it is the filter through which I see, hear and interpret everything. Red hot fury. I have not slept you see. Still. For weeks. And for somebody who requires more sleep than most, no sleep is making me homicidal. Grace has fled, tolerance is scarce and patience is nigh.

Having a conversation with me is like playing a brutal game of truth or dare. Yesterday I actually deleted a facebook friend because they used excessive punctuation. I kid you not. Mind you it is a pet grievance, like writing in CAPS, it is so offensive, just not usually a travesty.

So consider yourself forewarned, I am intolerant and slightly psychotic, that is when I am not falling over slurring like a drunkard. Then you can nod and smile at me and hope I won't punch you in the face. I can make no guarantees. But you can be pretty sure since my motor skills are kaput, my vision is blurred and my reflexes non-existent that I won't connect anyway so you're probably safe.

As for sleep, I have forgotten what that is. So yes I am tired all the time, but no I don't sleep all the time. I DON'T SLEEP AT ALL. My god now I've pissed myself off.

Okay so I'm off to try another sleeping tablet, see if this one works. In the meantime my brain has decided to bombard me with a made up R&B song about some sappy girl in love. 'I only love you boo, it's true I do.' So I leave you with that marvel of song writing. Try sleeping on that people.

PS - I am not responsible for this drivel, my subconscious appears to be stoned through sheer lack of sleep and it is currently in control of my body.