It's Not "All in My Head": Living with a Misdiagnosed Disability Five Years on. Volume Two

Read Volume One here. 
Day #5
The clock was way beyond midnight, a new date had ticked over.
I could not sleep.
I knew it was time.
I collated all of my mobility and medical equipment in the hotel room, I reflected and summoned all of my past experiences
And I wrote.
I wrote until beyond 4am in the morning.
And even then, trying to achieve some semblance of sleep with a migraine, costochondritis and a CPAP mask on was not the ideal twilight combination. I knew I had reached the edges of my wakefulness due to Hypnogogic hallucinations coming in, as I was drifting out.
A tall black shadowy figure morphs out of the corner of the hotel room corner wall. His limbs appearing as his form begins to strip away from the wall. Did he make it across the room? His torso was pointed towards me.
I wake up startled but unable to move to realise there is sunlight in the room.
I stare at myself in the hotel room mirror until my own limbs start to strip away from the blankets and my own form slowly shows from the bed.
I assemble my figure into my various braces, take my medications and it was time to face the day.
The day that five years previous, was when my world changed forever.
We go out for breakfast, as it is Mother’s Day after all. I clumsily knock a butter knife on the floor when reaching for my phone but that was nothing compared to the gratitude I felt to be able to chew, to drink, to swallow as there had been many times over the years where I had lost this ability and left to rehabilitate the use on my own. I remember well being told by a speech pathologist that, “If we don’t know the cause we cannot prescribe any therapy or help you”. I can still feel where the sensation through the left side of my tongue is decreased and biting my own tongue can happen if it doesn’t wish to coordinate with the right side.
I check my phone and to my astonishment, had published my article. The first volume in this series. This was incredibly bittersweet, that after five years, finally it was time to start to open up about what happened to me.
How I became this way.
In previous years, I had tried to articulate my thoughts via the written word. A feat which was impressive considering I had to learn how to read and write again. In 2013, when my body had degraded, medical forms were put in front of me but I couldn’t read and I barely had the strength to hold a pen. I knew the skill was there but suddenly the ability to do it was gone. Skip back a week, I had been reading university textbooks and hand noting lectures. The medical staff would change the subject anytime myself or anyone would attempt to notify them I had lost the ability to read or write, but this did not stop the medical forms from appearing.
I asked my partner to bring in a pad and paper to assign myself to practicing writing letters of the alphabet in lower and upper case. My partner also helped by bringing in comic books to help with my reading skills. To this day, I still misread written documents or struggle to get through them.
I would turn to the written word to express my reality as the medical anniversaries ticked by with a mixed collection of quotes from these posts below:
One year ago today was when I first experienced a paralysis that became left-sided hemiparesis. It has been a really long road of recovery that seems never ending. And just as things appear to be looking up, there is the stark contrast that my life is forever changed.
To this day it still affects me physically, mentally and emotionally.
The more I try to walk/mobilise/get on with my life the more brutally clear the co-morbidities that I am left with are.
Regardless of the horror that has been, I strive to turn it all into a positive and will continue to develop on all levels with the pure intent of helping others.
No one should ever have to go through what I have
What literally did not kill me has only made me stronger because giving up was not an option.
I am going to go dream for a better tomorrow
If only back then, I knew what I know now.
Five years on and retrospectively this is the brief timeline of events:
– Medical error occurred and was ignored 2013 (with evidence to showcase this)
– A psychiatric diagnosis was fabricated 2013 (with evidence to showcase this)
– Private Professor in Neurology declares “not psychogenic but of a yet to be identified physical cause” December 2013
– Given choice by a Private Orthopaedic Surgeon between amputation and KAFO 2014
– KAFO constructed and funded by going into debt 2016
– Diagnosed Severe Fibromyalgia by Private Rheumatologist 2017
– Additional diagnosis linked to medical error by a Private Specialist 2017
– Commenced Schedule 8 Medication 2017
– First Ketamine infusion for non – malignant chronic pain 2018
In 2011, public outpatient general medicine suspected Chronic Fatigue Syndrome but Neurology, unable to find “anything wrong” expressed their subjective opinion that by default “her symptoms must be of psychological origin” whilst, in the same paragraph, discharging me from the outpatient clinic with no further referral and no diagnosis.
No further diagnosis or outpatient engagement occured from this point.
Skip forward to 2013, emergency department contacts the last neurologist on my file and I was admitted as a “neurological patient with psych input” based on the fabricated prior diagnosis by this same neurologist that appears on my emergency department records but no previous records including the last formal document from this neurologist in 2011.
All of this before any clinical investigations or thorough assessment took place.
Though I presented with symptoms as a result of a medical error, my diagnosis had already been predetermined by the neurologist based on their own previous subjective opinion before they had even physically assessed me for themselves.
This created a domino effect that has not stopped.
The only previous mental health related issues I had at that point were suicide attempts from my teenage years and though my life had changed significantly from that time, the stigma of suicide attempts was used as evidence to justify the fabrication of the psychiatric diagnosis. The only mental health related issues I have now is PTSD from my experience of 2013 onwards.
To this day, the public system neurologists have showcased in writing that they refuse to accept my new diagnosis and seek to maintain the fabricated psychiatric diagnosis.
Even though, my new set of diagnosis have more clinical value, basis, validity that form a much more appropriate reflection of how I function.
My medical error is one we will save for another day, this article is enough to attempt to digest. However the product involved in my medical error is evidence on the VAERS online database as being attributed to Left Sided Hemiparesis and Sleep Disorders. Furthermore, the neuro- autoimmune biological mechanism that could cause such a catastrophic adverse event is well documented in medical literature.
How did I discover this? Through years of treating myself as my own case study.
Nobody knew had the answers and nobody had the time, so I was a somebody who had the time to search for valid answers.
For medically verifiable and logical answers.
Once the new diagnosis came to light in 2017, I mastered my own hypothesis and it demonstrates the basis that my own case could be the missing link in some of the rarest and yet to be explained medical cases in the field of sleep medicine.
But remember, this is all in my head or is it?
In the early hours of the morning, I crafted a poem that is directed at every doctor involved in turning a blind eye and proactively causing harm to my future medical care and quality of life.
Especially, with the neurologist mentioned above in mind.

It’s all in your head

To survive this long
my head had to be clear
it had to be strong
To finally have my day
To be able to say
You were wrong
But will you make this right?
If you had practiced with morality
What you see would not be my reality
How could you say
this was all in my head
All those results misread
As you opted instead
To turn your thoughts
Into defaming reports
I was an inconvenience you see
For your career ambitions
Those professional hopes and dreams
So you did what you had to do to succeed
Because one could never be seen to concede
The fact you did not have the expertise to diagnosis me
All these years later
Retrospectively, one thing is true
All of this was actually in your head
It was never me, it was really you

In a bid to retrieve some Bubble Tea, the rain came pouring down.
Even if I had an umbrella, I wouldn’t be able to juggle everything, yet there I was, drenched by the rain and still trying.
I enter the elevator and a lady joins me.
“Wouldn’t want to be caught in this whether…Oh Sheesh
Especially with your knee…leg… You’d be wanting to run
And then whoooah nope! Hahaha!”
“Ha…yeah… it’s the price I pay for bubble tea” I say with a forced smile
As the lady got off on her floor.
It’s the price I pay for trying, the price I pay indeed.
© 2018 All Rights Reserved. Nita Spedding


2 thoughts on “It's Not "All in My Head": Living with a Misdiagnosed Disability Five Years on. Volume Two”

  1. Like you and many, many other ME/CFS sufferers, I have spent years now being my own advocate and researching my own illness to pull my doctors along. I was diagnosed with CFS in 2008. I received an additional diagnosis of non-specific interstitial pneumonia in 2014, Antisynthetase Syndrome in 2017 and Sjogren’s Syndrome in 2018. All of this was only due to my bringing outside testing to my doctors or continually pushing (and fighting and pushing) for certain tests to be done. Tests that would not have otherwise been done.
    And if you fight and push then you are hysterical, a hypochondriac or have mental issues. After all, the problem can’t be them
    Now they say I had the Antisynthetase Syndrome and the Sjogren’s all along? So you left me to suffer and get worse for 10 years all because you were busy telling me to go home and exercise and get CBT? And if I had not fought for that testing, I would still be being told the same thing.
    I still don’t believe that I had these autoimmune diseases all along. I think I developed them. I don’t believe either of those autoimmune diseases present the way my illness did. On June 8, 2008, I just woke up one day and could not exercise and could not care for a house. I had the core symptoms of ME/CFS until about six years in (2014) and then my body started attacking itself. Mind you the symptoms haven’t really changed since 2014 when my body started attacking itself in every way, they simply found two antibodies and then it was ho-hum, “Oh yeah, all of your symptoms can be explained by these two antibodies, now we believe you have these symptoms, now we will treat you with something.” Symptoms didn’t change they simply believe me now and they act like the last 10 years never happened.
    THE WORST FORM OF GASLIGHTING. (term for a certain type of psychological abuse)
    My prayers go out to you and all of our community who have suffered so much and continue to be treated in a morally reprehensible way.

    1. helen holdsworth

      Thank you so much. They are trying to do that trick with my daughter and her GCSEs are suffering. It’s disgusting. I am taking her to a functional medicine doctor this week. Good luck, fighter!

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