A dance comes to a halt when the music stops....

An automation taken for granted every day, we move forward with the flow of life to our own rhythms and to the tones of others.

A togetherness that is never questioned until one day when this sweet harmony gets out of balance.
The symphonies you hear no longer fit together, you no longer feel the harmonious interplay deep inside and only you feel it.
How do you explain to someone that something is there when only you alone can feel it?

What we can perceive with our eyes we also believe, what logic we take from it is different.
Because of what we see, our brain starts knitting together a story by itself until it sounds plausible and acceptable.

What happens when we tell a story that seems different from what our eyes can perceive?

Is it then a lie? A beautiful piece of optical deception?

I dance to the same melodies everyone hears, just a little out of tune.

The difference is barely noticeable but inside it is one chaos.

'I'm not who I was anymore even though I look the same...' she tries to explain every time to other people while her voice makes an incredulous tremor.
'Ah never mind' she thinks right after that statement.

Why would anyone believe such a thing when she can barely believe it herself?
There must be a way, a logical story that reinforces her truth, that is plausible enough to be believed by others.

What happens inside is an aversion to what can be seen along the outside.
Dare to call it an optical illusion, woven into a riddle that each must unravel for himself and there is no solid solution. The outcome may vary for everyone.

While the truth is that there is really only one outcome and no other.

How do you get one large audience to believe the same thing when individually they may each see something different?

It takes a wide open perspective ability from someone who can understand this.

Like empathizing with someone's story, you hear the words and the images are automatically pasted in so the story fits in your head.

There is noise on the radio, there is no music coming out and yet the radio does not look broken.

My personality is in sync with my emotions; I am still the same person.
Only I am losing my authentic self through the process of chronic illness.
My words do not fit my lips when I say everything is fine, as is expected.
The question “how are you” is asked out of a form of politeness, but is there any genuine interest?
Even this normal question that is frequently asked horrifies me, a sense of discomfort it brings with not knowing how to answer, the answer equated with how I feel inside....
That usually is absolutely not the case and also not knowing how to answer that honestly choosing the easiest way out than trying to articulate those 43 simultaneous emotions and inner feelings that the body signals.

'I'm fine' and I get away with it, no further questions are asked and no one saw that I was lying because I am a master at hiding my true feelings and thoughts.

Fighting daily against criticism and perceptions of others is a much harder battle than that against the disease itself.
And the empathetic shortcomings of others who truly believe themselves to be happy falls much harder than the real pain that is going on inside my inner body.

There is a clear hierarchy in my inner body that dominates and my visual body has to respect it.

The coherence is not always the same, like talking to each other through a walkie-talkie but both are on a different transmitter so you can't hear each other.

Convicted-

My life was suddenly put in the balance and so was judged, perhaps even condemned.

It seemed like I was suddenly charged with a crime and I was in a courtroom.

I, on the accused bench and had only myself as my own attorney.

The prosecutor was my inner body, addressing everyone in the courtroom about how recklessly I was handling what was a part of me and no longer wanted to be a part of it without strict conditions.
I could only watch and wait for my sentence which I would have to carry with me for the rest of my life, a punishment imposed on me over which I had no control or say over myself with no option for early release.

No room was left for an expression of regret or insight of guilt that would give me another chance, no, the outcome was stone-fixed.

Everything could be put into perspective, and so I was given one choice:
The way I would live with this, do I let this “condemnation” hang me or do I bundle this together into a new strength? “When life changes, you adapt.”
Becoming a better version of myself than I was, with more awareness and respect for my inner body.
A creative brain with a dominant but inspiring inner body who wants to improve her own world and show it to the outside world.

My story...

Let me tell you my story, get carried away with a high capacity of receptivity to the illogical. And don't forget the images, just as I do when writing my piece of illogical true story....

My lips have a fire red gloss and I smile in the mirror when I put the lipstick away.
I thought lipstick along with the combination of red was rather vulgar, too much for me but I must admit that I feel good with fire red lips and even with my nails painted red.

My shiny dark brown hair I feel sliding along my shoulders and falling down my back, the long locks I feel slipping gently away between my fingers.

The sun gently nuances the pale color on my skin making it unnoticeable that I am often indoors.
The confident outer woman in me emerges, forgetting for a moment how I really feel in my inner body.
I am proud of the woman who looks at herself in the mirror and wishes everyone could see the same as me....

The harmonious connection of my inner and outer body was not always disturbed, quite the contrary.
They both spoke the same language and shared the same melodies that made me move forward, feel and be happy.

Every day was a reciprocal logic without looking back even once.
Without dwelling on automated daily undertakings, without any reflections.
I didn't have to make choices between different things because I could just take it all.

Usually, and only then, awareness comes when it all disappears at once, that which is taken for granted.
My inexhaustible energy got its limits and it turned into a daily careful picking and choosing of what to spend my suddenly precious energy on.

I had POTS, called Postural Orthostatic Tachycardia Syndrome in full.
A syndrome involving the body's autonomic nervous system that regulates all of the body's automatic functions, really a second brain because it automatically regulates certain functions of the body without thinking.
An internal computer system programmed at birth, a kind of on-board computer of a car anno 2022.

With POTS this on-board computer is disturbed like a virus on a computer, it suddenly does things out of nowhere for no apparent reason.
When I stand up, my autonomic nervous system thinks I am running a marathon.

Or when I take a shower it suddenly thinks I'm participating in the Olympics.
And when it's winter or summer outside, my body doesn't know how to react to this and gets completely confused so my temperature can suddenly shoot up or down.
A continuously overstimulated autonomic nervous system that overreacts to normal positions and movements of the body is quite frustrating.

The dysregulation causes many more problems including also that it quickly becomes exhausted and needs rest, only by lying down can it restore itself.

Finding the balance again to get back to normal.

This is the reason why I have less energy than others, have to reckon with limited energy storage that I can consume on a daily basis.

My heart works hard to compensate for the dysregulated nervous system by beating very fast and pumping enough blood and oxygen around.
POTS actually so emphasizes a heart condition because it presents the same symptoms as someone suffering from heart failure but that is not the case, it is equally intense in symptoms.

A stubborn autonomic nervous system with its own dysregulated deficiency.

POTS is still so unknown, even to doctors, and much research is still being done.
There is no one-size-fits-all treatment, only tailored multi disciplinary treatment to suppress symptoms.
POTS also, like a large firm, has small ramifications so subdivided forms.
For example, POTS that primarily dysregulates blood pressure, disrupts fluid balance in the body or causes neurological symptoms.
POTS is one of several raindrops on a large umbrella called “dysautonomia,” it is just one of the syndromes out there involving the autonomic nervous system.
It is also called an allergy to gravity because the symptoms flare up when the body is in standing or moving positions.

The on-board computer of my inner body is defective and gives so many other complaints and discomforts involving my digestion, the fluid balance in my body so that I dehydrate at the slightest exertion as if I had been walking for hours in the desert.

I also have more than just POTS, but also other auto immune disorders that suddenly came into my life on involuntary order making POTS yet another passerby in my life that decided to stay.

I also have Addison's disease, a problem of the adrenal glands no longer working due to it attacking the body's own cells, totally sincere.

This principle also explained Celiac disease, the first condition I was diagnosed with and falsely attacking when I eat gluten.

My thyroid also doesn't work well anymore and is usually seen in connection with Addison's disease so really 3 auto immune diseases for the price of one.

When I got POTS my stomach function started to decrease, this is called gastroparesis, again there is a definite connection, as well as Reactive Hypoglycemia which was added last (for now), a rare form of diabetes that when I eat sugar my body overreacts and makes too much insulin so I just get low sugar (hypo).
Speaking of aversion...

All these passives that have come to live in my inner body each individually require a lot of care, time and energy leaving little energy to do what I would like to do that has nothing to do with care but has to do with fun such as walking, going out, sports, work,... making my contribution to society and belonging to society.

Every day my inner body gives me x number of spoons, each spoon represents one undertaking that requires energy from me.
When the spoons run out, the body is burned out of energy and rest is all that is left.
Normal, day-to-day tasks, enjoyable outings, encounters, active pursuits have their prices and the more intense and longer one particular undertaking is the more spoons I lose to it.
My body needs regular breaks that can last for days to recuperate, gain energy that I can then invest again on a limited basis.
This is where the emotional piece also plays into it, life drastic events can also completely unsettle and exhaust me inside.
It is harder for me to accept that my inner body is so limited in its energy than it is for bystanders.

The feeling of helplessness has embraced me and makes myself feel worthless personally and that is heartbreaking because I want to be more, to be a full person and be equal.
The lack of not being able to function optimally in my various roles as wife, partner, mother, friend,... gives a lifelong lack that occasionally turns into grief.

A grieving process that will actually never quite go away....

Opinions are sometimes harsh from people who see someone sleeping, or who are quickly exhausted during a walk and asks for a break.
The credibility is not there when the visual aspect does not match the story.
The world of a chronically ill person is incredibly harsh, a world where high standard expectations are maintained right from birth.
The accountability we have to make each time why we need rest, have to reschedule an appointment or can't go to the promised party is a heavy toll.

An extra weight that is lugged along daily along with the inner body that cannot function normally.

BUT YOU DON'T SEE IT!

Despite this world, I try to continue to thrive as a woman, searching for the right balance.
In which I take good care of myself (which also takes spoons), as well as my children and partner. And that process doesn't always run smoothly, so I end up paying for it later, completely burned out, out of energy, emotionally vulnerable and completely overstimulated.
Because that too is a piece of me that needs timely care so that negative thoughts and fears don't take over, whether I'm fretting about other people's opinions or intensely feeling one of the so many symptoms of one of my conditions taking over.

A chronically ill person can be inundated daily with unpredictably many different stimuli that can come from within or without and even at the same time where you feel like an inexperienced magician trying to keep 10 balls in the air at once.
Chronically ill people are real magicians, we can hide emotions so well and endure even the most terrible pains without giving a peep while we continue to keep up with the world, which no longer plays our rhythm.

Try to imagine that every day you are given about 5 spoons by your inner body and have to spend them carefully for yourself as well as others.

What would you do with the spoons given to you?

And how would you handle it, will it become your meltdown or will it just become your strength?

My head is the dominant ruler of my operating system that I try to turn off in order to live fully.