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.

Death

When I sleep tonight, curled up in bed, wracked with pain, weak and defeated, I will huddle under a blanket of Death.  I am lucky in this present, that there are several layers between me and Death so its scratchy coldness does not rub abrasively against my skin tormenting my dreams with its false intimacy.  But in the early morning hours, when my subconscious is untethered I sometimes hear Death whispering sweet nothings, beckoning me elsewhere.  And one day I fear I will wake swaddled in Death, too weak to unwrap myself. 

Death is such a distant prospect for most people.  It is an idea, an imagined place, a remote destination.  I think it must be hard for healthy folk to understand what it is to be stalked relentlessly by Death.  To know that in the moments when you have not heard from it, you are being watched, chased from afar.  And then the distance closes and Death becomes bolder, aggressive, and ever present. 

We do not speak of it often; we don’t think you will believe us.  But we feel it, the membrane of protection between us and Death is woefully thin.  Sometimes it thickens like scar tissue on leathered skin, but mostly it is a miniscule layer that is permeated by tormenting forces – virus upon virus, bacterial infections, excruciating pain signals, cognitive dysfunction, spasming muscles, and neural symptoms – and sometimes all at once.

Today we lost a CFS warrior, a bright star, a creative mind, an intuitive soul.  I do not know yet if she died from our illness or complications from it, but either way we all know it will not be classified as caused by CFS or ME.

She has reinforced my belief that we must not go quietly into the night.  That we should give voice to the truth, that Death is ever present, that for those of us who are very ill, we visit with Death often, sometimes stoically fending it off, other times doing our best to just ignore it.   Sometimes we even manage to put a little distance between us, but in quiet moments of joy, we remember Death will come hurtling back just as soon as we stop being careful.

So for those skeptics who torment us, you cannot die of hypochondria, perhaps you need to challenge your belief system.  For the scientists who debate and play political games, we do not give a shit which one of you is right, all we care about is trying to have a future that doesn’t involve sleeping with Death every day.  And for sanctimonious, self satisfied students who take joy in finding fault in the work of others, you have every right to make a point, but you do not need to be vindictive to do it.  I want the truth, I don’t want a fairytale, I’m a big girl, for f*%k’s sake I battle Death every day, but don’t be an asshole when we are all slowly dying.

Doctor Danger

I have always had this really strong sense of morality, of right and wrong, so much so I feel ill if I do something that goes against what I believe to be good or appropriate behaviour.  If I have a heated argument with someone, or snap at them because I’m in a bad mood I will always apologise almost immediately and take responsibility for my role in the situation.  That being said, I am no saint and there are many moments in my life I am not proud of.

But as a rule, generally, you want me on your side.  I will stand up to the bully, I will face off with the aggressor, I will protect those I love, or even those who simply need an ally.  So as I watch my community of friends trying to live with this awful condition (CFS/ME) while being discriminated against, I become increasingly furious at how unjust it all is.  Truly it overwhelms me.

In Australia, we are eligible for the disability pension, (as we should be, many of us are house or even bed bound) and yet we cannot access disability support services.  We can get access to transport, but only if we say that the medical treatment we need transport for is not related to our illness.  We are dismissed as hypochondriacs, and yet we die off in numbers that are not documented because our deaths are reclassified as something else.  We commit suicide because no one listens, the pain is too much, the invisibility too great and the frustration too intense.

What scares me more than all of that; is the abuse of power by doctors.  Some years ago I flirted enthusiastically with death after contracting viral pneumonia, I was hospitalised for a week by a lovely respiratory specialist, but not before an ignorant doctor in emergency told me that I was wasting his time, that he could do nothing for me, that I should just go home and not bother coming back.  Thankfully I ignored him; returned the next morning to see the specialist only to be admitted immediately, having to be monitored every half hour for that week, until eventually I had improved enough to be discharged.  But what about someone who wasn’t as strong as me, what if they didn’t have the balls to ignore the doctor and fight back?  What would have become of them?

There are so many stories like this, of close scrapes, of feeling organs shut down, feeling your heart strain from simply moving, of having to crawl because you cannot walk to the bathroom, of going days without showers, of returning repeatedly to the emergency room suffering with excruciating pain and illness, only to be admitted to psychiatric wards.  All over the world there are stories of people who suffer with this illness, but because we do not fit in the neat little boxes designed to make doctors feel smart and safe, we are treated like hypochondriacs.

Imagine having HIV before anyone knew what it was.  Imagine feeling this rotten wrong thing wrapping tendrils round your system.  Imagine going to the hospital, telling them your diagnosis and watching their body language change and their tone lower to condescension.  You know it’s biological, you know it is not psychosomatic, you know there is something rotten inside you, but they just look at you dismissively and talk quietly with the nurse about discharging you with some paracetamol.  As you become more outraged at their treatment of you, you are so ill, so tired, in so much pain, you cry and raise your voice in frustration.  They nod to you and steal glances with each other, you are only reinforcing their belief it’s all in your head.  Can you imagine living like that?  Needing help and treatment, yet unable to seek it for fear you will be intentionally misinterpreted and maligned?

That is what it is to have our diagnosis.  That is why we say we would rather have Cancer or HIV or other politically incorrect things.  Not because we don’t understand the gravity of those illnesses, having experienced what we have we would never doubt nor underestimate the suffering of others.  No it is because those illnesses have treatment, awareness, options, research, support, and statistics on survival or death.  People look at me incredulously when I say I would rather have most any other life threatening illness.  But if you were to walk in my shoes, you would understand.  There is no certainty, but I can fight against that; there is no treatment, but I can pray for one, but to have people treat you like a hypochondriac while you suffer so much quietly against all hope… that is too much.  I would rather know the likelihood of my death, than to have to fight not only this insidious illness, but with the very people who have been entrusted with the job of treating me, and yet instead they shake their heads and dismiss my suffering because I refuse to fit into their neat little boxes.  And the irony of all ironies, those few brave doctors that risk treating us, specialising in the treatment of our illness, face the same treatment metered out to us by their colleagues.  They too are ridiculed and scoffed at.  The rare doctor that can think laterally and outside the box is the one that can treat this enigma, but few risk ruining their career by doing it.

A quote from, Dr. Nancy G. Klimas, who is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center. 

“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Source: http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

Dr. Mark Loveless, head of the AIDS and Chronic Fatigue Syndrome Clinic at Oregon Health Sciences University, in 1995 testimony at a congressional briefing, noted that a "Chronic Fatigue Syndrome patient feels effectively the same every day as an AIDS patient feels two months before death."

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