Tiny human in the mist

Little by little it crept up on me. I feel as vulnerable as an innocent tiny human lost in the forest as the the light of day fades out and a dark and menacing mist curls its way towards me around the trees, enveloping the trunks at eye height. The mist is primeval, it radiates an intense and threatening presence and I feel myself panicked, my little heart beating like a bird fluttering uselessly entrapped in a too small cage, the bars painfully catching its wings.

Stuck in my throat is an aching lump. Droplets dwell in my tear ducts at the ready, as though all they need is to hear their marching orders, “Get in formation. March down her face. No that's not enough, run, gush like a waterfall, drench that face.”

My heart physically hurts. It feels engorged, overloaded with the injustice, loss and terror. The noise of the world feel like painful barbs, blows to my body and my brain, the light feels like the sun has moved closer to earth and burns my retina with the slightest sliver of yellow that stripes my floor if the curtain parts. My brain hurts, my skull feels tight around my head, the skin taut and pinched. The mist has overtaken the defenceless tiny human that lives inside me. She is trapped, like an ancient faerie tale, in a twisted land, dark, cold and alone and waiting for someone to save her.

But nobody comes. Nobody has heard her cries. Maybe not even me. I have steeled myself against her angst and terror filled psyche. Allowing myself only to pay attention to the now. This very moment. Because it's the only way I know how to get through. And yet something has broken, perhaps she broke through the mist I don't know, but now I hear her and she's been tugging on my heart, wrenching at my gut, choking my throat and welling my eyes up just trying to get me to listen to her and speak her truth.

She is me. The part of me that I don't let out because it feels like letting go to her will be impossible to recover from. I am terrified. Every day my life worsens and I don't know how to sustain the courage to keep facing the next moment, let alone tomorrow. I do not want you to think that I am going anywhere. I will not leave. But I cannot quiet the inner voice of the wise tiny human who lives in all of us. She is unfiltered and unwilling or too naïve to participate in pretence.

Sunday night I was so incredibly ill I thought I might die. And I know the difference between dying and feeling deathly, I've had my flirtations with death, the real ones, so I can differentiate. I have had a migraine for weeks, months even, but this was different. This was like my head was going to come off. And I had a vomiting and gastro bug picked up from a friend who had visited her friend in hospital – I should have thought, should have realised – never again post hospital visits. Then (and warning boys or the squeamish you may want to skip to the next paragraph now) I had my period. But not in the normal sense, this was previously a fortnightly visit that had not come to visit for months and it was doing a hell of a lot of catching up. It was all dark and all clots and all excruciating. Even the slightest loss of blood for me is dangerously weakening, this together with everything else and I had my perfect storm. Then I got chest pains like I've never experienced before. Intense and wrong. I felt wrong. So not right. So far removed from okay.

The paramedics came and in the dark comedy that is my life, my cat Tobey escaped for an adventure so Ma and my Dad were running around the cul-de-sac at three am attempting to herd him back into the house. Meanwhile the paramedics entered the house without noticing the prominent sign warning NO PERFUME. And Jock – the Northern Irishman, oh the irony – had been marinating in cheap cologne for three days. So he nearly killed, an already nearly dead me with his enormous cloud of neuro toxins. I had a massive seizure, got paralysed and followed it up with a sterling finish of an asthma attack.

Since it's Ekka time, the hospital was filled to the brim with the fluey, infectious and gunky sick people. I couldn't risk it. So I allowed my tear ducts to give the order and and my face was wet with streamed tears at the ridiculousness of the situation. Me, people like me, we need help the most. And yet I cannot get it. Thank you government. Thank you health system. You just may kill me yet.

Rochelle, the exceptionally kind paramedic who had thankfully refrained from marinating in her own perfume bath, told me I was the sickest and funniest patient she'd ever had the pleasure of meeting.

Ma and I had giggled our way to and from the toilet while I drooped about like a wilted flower on the walker, unable to control my muscles or limbs and she unable to control the walker.

Maybe it's Robin Williams death that has the tiny human in me yelling so loudly. We're not so different me and him. As far as human beings go. I hide my pain behind a layer of humour. He did the same. But I'm tired.

And interspersed between the dark had been moments of laughter and lightness, but like dashes that conjoin and become an unbroken line, the darkness has stitched itself together and the mist is merciless. So I think I will just stop fighting for today, and we will go to sleep under the mist, pull it over our heads like a blanket, rest on the forest floor and let the world work out its shit. I've got enough to deal with. But if you happen to hear my inner tiny human's cries, please don't ignore her. She was very brave to fight her way out.

It's not easy being green

So...I am positive (and despite my sometimes – well often – dark writing I am actually genuinely usually quite upbeat.  But what I mean is I am positive for Lyme Disease). I also have some co-infections.  And just BTW this background choice was here long before I even thought I might have Lyme - subconscious instinct maybe?

Here's what I can tell you about Lyme so far, it's likely that the Babesia (a Lyme co-infection I have) is for me the more acute, more dominant infection and therefore I am displaying more obvious symptoms of that - namely increasingly bizarre neurological symptoms.

Let's start with the one I like to call the dramatic interpretation of the thesaurus. That is a combination of a few: weird dance style cheer leading moves, while repeating five alternate ways of saying something (because I can't find the exact word or phrase I want to use) interspersed with musical Tourettes and cheer freeze movements punctuated by clapping, smacking or stomping.

The catalogue of walks: the bless this wall walk, where I walk up the hallway facing the wall holding onto the new bar (imagine a ballet bar running the length of the hall) pressing my face against the wall every few shuffles, the crab walk, the grapevine, the ass first around corners manoeuvre, the squat walk, the shuffle, the child learning to walk walk, the drunk walk, the I have to turn three times at speed before I walk walk and the going down the stairs walk. Can you believe there is no moonwalk in that mix?

Then there is noddy: this is where I suddenly drop to the floor or lose consciousness mid speaking, showering, walking, sitting... just drop like a stone. The strange thing is though that I'm not fully unconscious it is more like I am frozen, but I am not conscious either as time is transient and I can't really tell how long has passed. 

And the Dick Van Dyke tribute: where I suddenly start talking with a weird version of an accent, whether it be Chinese or Italian or Kiwi. Then the related and usually simultaneous symptom of volume control... where I either am shouting words at random or suddenly whispering something while cupping my hands to my ears or forehead (apparently, because that's where I speak from).  Or the reverse it sounds like anyone speaking to me is not only speaking with an accent, but in another language and I simply cannot understand them.

Slow motion interpretive dance: this is a pretty frequent daily occurrence where my body moves of it's own accord.  Usually my neck and head, arms and torso doing free form interpretive dance or a series of moves - the salute where I repeatedly bang my head like I am emphatically saluting, the pick me manoeuvre where my left hand keeps shooting up in the air, the double pick me - where both hands go straight up, the bow down, the chin up head shake... there is too many to count. The tempo of this jig is dependent on what's causing it.  If it is just my usual brain farts, it's slow.  If it's in reaction to chemicals this turns into a high speed disco.

Language and singing portion of the show: where I have musical sound effect style Tourettes. I sing parts of sentences or make beat box musical noises – not well I might add. Or strangely I sing whatever I'm saying to the tune of a song or lullaby. Highly irritating. Oh and MA rated inappropriate Tourettes too. Which makes Ma highly uncomfortable cringey and full of shhhhhhhs. Unfortunately the more I try to suppress the urge to speak/yell/sing the worse it gets (plus a migraine)... so f$%k it, suck it, duck it.  

Oh and last but not least who can forget (mind the pun) the amnesia or dementia symptom: where I start calling my sister or mother or even my father – that girl... you know that, person that lady. I call Mum Marzi (my nickname) and cannot for the life of me remember the cats' names (Tobey & Cooper) so end up yelling out things like furry little people or pooper or Cobey or Tooper or f#$kingwhathisname. And the highlight is forgetting who I am, where I am and what's happening which seems to frequently result in me yelling, “what?” in people's face, “what's happening?” at the top of my lungs. “What am I doing?” “who?” “what?” The last time it happened quite dramatically I was (insert sarcastic context here) conveniently at the doctor's office. Where thankfully he didn't miss a beat in the face of my thunderous questioning of all these pressing theological matters. “what?” “what is HAPPENING?”

So Lyme is absolutely not my favourite colour. My school uniform was two shades of green... and I hated it then. Now I am stuck with Lyme. At least for now. In the meantime I will be performing daily. A Lyme variety show – 'It's not easy being green'. Come all takers.

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.