Aid4Amara YouTube Channel

Sunday, 20 November 2011


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.


  1. when i had to go in an ambulance a few months ago i was reluctant for the same reasons .. that would consider i was just being a drama queen when i said I cannot walk up stairs because i will be sick for weeks ... so I found 2 good research papers about PEM and printed them out and handed them to the ambo's when they first arrived. When they started quizzing me and rolling their eyes I said can we just sit for a minute and can you please read what i have given you. They were much more respectful afterwards ..

  2. that happened to me from stematil once. they were fairly nice at the hospital. the ambulance men were also nice. it actually stopped for some reason while i was in the ambulance - i wonder if it was the movement? - anyway i was so horrified that once again i would be remarkably healthy just in time to recieve medical attention, but the ambo said no, if there was something wrong there was something wrong, and made me feel much better. and as soon as i got into emergency it started again and by the time the doctor came to see me it was pretty bad again.

  3. That is a brilliant idea. It is quite surprising that with such obvious symptoms that you can still be considered a drama queen. Something very important is lost somewhere along a drs career path. I wonder at which point.

  4. My heart goes out to you Marzi. I hope you find respectful doctors for your terrifying symptoms, and I hope they are treatable... This must be so scary. Big hugs.

  5. HI Marzi,
    I hope you feel better soon, as much as you hate to go to the doc, those symptoms sound pretty serious. I get what you mean about waiting for symptoms to disappear by themselves after a few days, sometimes it works.

    I like Lee Lee's suggestion of taking a print out about PEM or PENE, that combined with someone to advocate for you might make the experience a little easier.

    Sometimes to be brief, I just say I have POTS and then explain it is a 'heart condition' and need to lay down.

    Urgh this is crap crap crap. I am so sorry you are suffering right now.

    Sending you lots of hugs and best wishes. :) xx

  6. feeling all helpless in the face of this - want to be able to stop it ever happening to you again. also, just can't 'go there' in terms of thinking about hospital experience was so far from the worst i've heard but i'll never go back again if i can help it. love, love and more love gorgeous. you are one strong woman. XXOO


Thanks for reading. Please let me know what you think...