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It’s not “all in your head”: Living with a misdiagnosed disability five years on. Volume One

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Living with a disability is one thing, acquiring a disability is another but what about living with a misdiagnosis and no supports for your disability to only be diagnosed correctly years after the fact?

Sharing a rare but intimate glimpse of life living with a disability, coping with new diagnosis and healing from the damage of old diagnosis.

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Day #1 – Getting to Sydney
Arriving at Perth Airport at 4am, I go through airport security in my wheelchair, we board the plane and within an hour of our flight, the captain speaks notifying us that the landing gear of the airplane was not retracting and suspected to be damaged.
We returned back to Perth and thankfully landed safely. With a complimentary upgrade to The Qantas Lounge, we sat and waited for new flight arrangements. By this point, I had not had any dedicated sleep for close to 24hrs. Finally, back in the air without issue and lucky one hour nap, we land at Sydney Airport, local time 2:55pm.
And then the wheelchair saga began.
It was not the first time I’ve been left waiting for a wheelchair after a flight but definitely the first time I was still on the plane when the cleaners came through, complete with a captain clearly getting more frustrated at waiting for me to be able to disembark. The flight attendants stated “they’ve had ten hours notice that we needed a wheelchair at this gate”. The service assistant who pushed the chair once they arrived with it at the gate explained that the internal communication system was flawed. I get to the gate entrance to see a mature aged lady frustrated that I had priority of the wheelchair when she needed it to get from the gate entrance to the taxi rank. With my manual wheelchair waiting for me at the baggage area, I transfer and when being wheeled over to the Accessible Taxi Rank, the mature aged lady pops up again, loudly complaining that they have to walk to the taxi rank. The Taxi driver was incredibly accommodating to my mobility needs. The wheelchair saga for the day ended with being verbally accosted by a random on the street because I was in their way.

Welcome to Sydney.

We book into the hotel and the room, though the entry door is just wide enough for a wheelchair, it has an accessible bathroom.Due to my partner/carer coming down with the flu just before we flew out, I was left to find dinner options within safe hobbling distance.
Thankfully, Chinatown is within my mobility radius and a few bars as well.

Ever carried glasses or drinks from a bar?
There is no eloquent way to juggle carrying things and using a walking stick but this did not prevent a corporate looking gentlemen asking what glass a ladies drink should be in, short or tall.

My eloquent answer

“If a lady is wearing lipstick go for a tall glass but if she is not, go for the short”

“But all ladies wear lipstick”

“Not all, I worked in bars many years ago and you notice patterns”

“I never notice these things unless someone points it out, like if someone asked what your hair colour was I wouldn’t have been so observant but now I’m looking I know it’s blonde”

“It’s the small details that make the difference”
Within half an hour, the gentleman was at the bar, ordering the same drink, same tall glass.

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Day #2
I wake up and hobble into Chinatown for some bubble tea and Chinese baked goods. When at the bakery, the staff were very accomodating as I kept dropping anything I’d try to carry.
I make my way back to the hotel room to rest before catching my first Uber in Sydney.
The Uber driver was very polite and helpful but curiousity burned:

“Did you have accident?”

I arrive at my destination but where could I be going?

A welcomed visit to the First People’s Disability Network’s Head Office.
The door to their office was automated and it was refreshing to see people with disabilities as staff.
To see a person with a disability have their own office, right in the heart of the office was meaningful employment in action.

An Uber for a quick lunch, another rest in the afternoon.
Out to dinner paired with good conversation, the day had ended on a high note.

Until I woke up, on the shower floor…
I decided to describe the rest of this experience in a Facebook post as a response to media reporting on assisted dying as shown below.

It is 3:24am
Tonight, I woke up on a shower floor
And unable to move
Just staring at tiles and the water pooled around me
Slowly I could breathe but could not regulate on inhalation.
I eventually managed to drag my partially immobile naked body to the CPAP machine as my newly awakened carer queried if an ambulance was in order.

After almost an hour, additional to how long I had been on the shower floor and how long it took me to have the strength to get into the other room, as every inhaled breathe attempt sounded like a late stage emphysema patient, with CPAP and monitoring, my lungs reactivated and I could breathe successfully again.
This was not an anxiety attack, this was a legitimate neurological fault.
I have faced intense scrutiny over launching DASPLAA.
However I hope now you can comprehend the sheer lengths I go to just to participate and remain functional in all my endeavours. If this does not suffice the critics reading, I have a question for you:
When was the last time you experienced joy in social interactions? For I am not your scapegoat or enemy.
The language used in reporting assisted dying lately has directly contradicted recent reports of individuals ending their life by suicide.
Stating that decline in symptoms, functionality and quality of life as key rationale for assisted dying without equal promotion of crisis hotlines or language that promotes mental well-being, is, by unintentional default setting a social precedent that will be impossible to undo.
Mainstream media are setting a social precedent that the moment you physically decline, it’s ok to consider duration of life options.

By all rationale currently presented by mainstream media in relation to assisted dying, by all purpose, as a person with a disability, I would have been given social permission to end my life.
But I am still here.
And still hooked up to a breathing machine
Typing a social media post at 3:48am
This post is not dictating a right or wrong solution regarding duration of life options.
But we must support others in maintaining their well-being when discussing or exploring duration of life options.
Lifeline 13 11 14

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Day #3
Dedicated bed rest, completely exhausted

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Day #4
Managed to get some fresh air briefly in my wheelchair but I was exhausted, my partner was exhausted. Trying to find anywhere good to go that is wheelchair friendly had drained us both.
We soon retreated back to the hotel. II had planned to go to an event whilst my partner was at the footy but I fell asleep.

What was the event?
May 12th is now synonymous with #millionsmissing In the laundry list of diagnosis I have currently have, Severe Fibromyalgia is one of them, currently treated under non malignant chronic pain protocols aka Ketamine infusion.

The quote that stood out for me was one within an article published by Scott Ludlum and spoken by the President of Emerge Australia:

“Imagine if all we offered patients with cancer was exercise and counselling. That is the equivalent of what is happening to patients with ME/CFS in Australia today.” Sally Missing is the President of Emerge Australia, an organisation supporting people with ME/CFS.
“Patients want biomedical research into effective treatments, education for doctors and medical staff, and access to information and government support services such as the NDIS which are currently being unfairly denied.”
https://www.theguardian.com/commentisfree/2018/may/12/to-the-millionsmissing-with-mecfs-something-remarkable-is-happening

Now imagine if you had a medical error that caused left sided hemiparesis in addition to other rare and disabling diagnosis, only for the medical error to go without investigation and be told that exercise and counseling are the only options available for four and a half years – this glimpse of my lived experience and a growing number of people with disabilities of a neurological origin in Perth.

I could speak at length on the gaps and areas of concern when it comes to neurological case management and projected impacts because the concept of #missingmillions will continue to be a key awareness initiative if things do not change.

At dinner the mother in law states concerned
“You still look exhausted, especially around the eyes”.
“I’m better than what I was but my body did take a hit”

Round after round, hit after hit, I taught myself sit to stands and here I am, I’m still standing because tomorrow will be five years to the day since my disabling factor occurred.
© 2018 All Rights Reserved. Nita Spedding

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One comment on “It’s not “all in your head”: Living with a misdiagnosed disability five years on. Volume One
  1. Cathy says:

    You are a brave and persevering patient who displays bits of irony and humor. Keep on, keeping on. I hope you find effective treatment and caring doctors. Thank you for sharing your travails.

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