The spoon theory-

Based on a true story, told through the eyes of a chronic sick patient.
'But you don't look sick...'
Original: 'The spoon theory' by Christine Miserandino 2003.

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

An automation that is taken for granted every day, we move along with the flow of life at our own rhythm and to the tones of others.

A togetherness that is never doubted until one day this sweet harmony gets out of balance.

The symphonies that you hear don't fit together anymore, you no longer feel the harmonious interplay deep inside and only you feel that.

How do you explain to someone that there is something when only you can feel it?

We also believe what we can observe with our eyes, which logic we extract from it is different.

Because of what we see, our brain starts to knit a story together 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 nice 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's chaos.

"I'm not who I used to be even though I look the same..." she tries to explain to other people every time as her voice makes an unbelievable tremor."Oh never mind," she thinks shortly after that statement.

Why would anyone believe such a thing if they can barely believe it themselves?

There has to be a way, a logical story that backs up its truth, that is plausible enough to be believed by others.

What happens on the inside is an aversion to what can be seen on the outside.

Dare to call it an optical illusion, woven into a riddle that each must unravel for themselves and there is no solid solution.

The outcome may vary for everyone.

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

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

It takes a broad open perspective ability from someone who can understand this.Like empathizing with someone's story, you hear the words and the images are automatically added so that the story makes sense in your head.

“𝒯𝒽𝑒𝓇𝑒 𝒾𝓈 𝓃𝑜𝒾𝓈𝑒 𝑜𝓃 𝓉𝒽𝑒 𝓇𝒶𝒹𝒾𝑜, 𝓃𝑜 𝓂𝓊𝓈𝒾𝒸 𝒾𝓈 𝒸𝑜𝓂𝒾𝓃𝑔 𝑜𝓊𝓉, 𝒶𝓃𝒹 𝓎𝑒𝓉 𝓉𝒽𝑒 𝓇𝒶𝒹𝒾𝑜 𝒹𝑜𝑒𝓈𝓃'𝓉 𝓁𝑜𝑜𝓀 𝒷𝓇𝑜𝓀𝑒𝓃.”

My personality is in sync with my emotions, I am still the same person.

Only I lose my authentic self through the process of being chronically ill.My words don't fit my lips when I say that everything is fine, as expected.

The question 'how are you doing' is asked from a form of politeness, but is there also genuine interest?

Even this common question, which is frequently asked, haunts me deeply, a feeling of discomfort that comes with not knowing how to answer, the answer that is equated with how I feel inside...

That usually is absolutely not the case and also does not know how to answer 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 the criticism and perceptions of others on a daily basis is a much tougher battle than fighting the disease itself.

And the empathic shortcomings of others who truly believe in themselves that they are happy far outweighs the actual pain 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, such as talking to each other via a walkie-talkie, but both are on a different channel, so you no longer hear each other.

Convicted-

My life was suddenly put in the balance and judged that way, maybe even condemned.

It was as if I was suddenly charged with a crime and I was in a courtroom.

Me, on the dock and had only myself as my own attorney.

The prosecutor was my inner body, who spoke to everyone in the courtroom about how reckless I was with what was a part of me and didn't want to be a part of it again without strict conditions.

I could only watch and wait for my sentence that I would have to carry with me for the rest of my life, a sentence that was imposed on me over which I had no control or control with no option of parole.

No room was left for an apology or insight into guilt that would offer me another chance, no, the outcome was rock solid.

Everything can be put into perspective and so I was given one choice:

The way I would live with this, am I going to let this “condemnation” or am I bundling this together into a new force?

“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 that wants to improve it's 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 like I do when writing my piece of illogical true story..

My lips have a fire red shine and I smile in the mirror when I put the lipstick away.

I found lipstick together with the combination of red rather raunchy, too much for me but I have to admit that I feel good with fire red lips and even with my nails painted red.

I feel my shiny dark brown hair slide past my shoulders and fall over my back, the long locks I feel softly slide away between my fingers.

The sun softly nuances the pale color on my skin, so that it is not noticeable that I am often inside.

The confident outer woman in me comes out and forgets for a moment how I really feel in my inner body.

I'm proud of the woman who looks at herself in the mirror and wished everyone could see the same as me...

The harmonious connection of my inner and outer body has not always been disturbed, on the contrary.

They both spoke the same language and shared the same melodies that moved me forward, felt and made me happy.

Every day was a reciprocal logic without even looking back once.

Without dwelling on automated day-to-day businesses, without any reservations.

I didn't have to make a choice between different things because I could just take it all.

Usually, and only then, consciousness comes when it all disappears in one fell swoop, that which is taken for granted.

My inexhaustible energy reached it's limits and it turned into a daily careful selection of what I was spending my suddenly so precious energy on.

I have POTS, called in full Postural Orthostatic Tachycardia Syndrome.

A syndrome in which the autonomic nervous system of the body is involved and regulates all automatic functions of the body, actually a second brain because it automatically regulates certain functions of the body without thinking.

An internal computer system that is programmed at birth, a kind of on-board computer for a car in 2022.

At POTS, this on-board computer is disrupted like a virus on a computer, it suddenly does things out of the blue for no apparent reason.

When I stand up, my autonomic nervous system thinks I'm 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 it gets completely confused, causing my temperature to suddenly go high or low.

A continuously overstimulated autonomous nervous system that overreacts to normal positions and movements of the body, that is quite frustrating.

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

Find the balance again to get back to normal.

That is why I have less energy than others, have to take into account a limited energy storage that I can use 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.

POTS actually puts so much emphasis on heart disease because it gives the same symptoms as someone who suffers from heart failure, but that is not the case, it is just as severe in symptoms.

A stubborn autonomic nervous system with its own disordered defect.

POTS is still so unknown, even among doctors and a lot of research is still being done.

There is no one-size-fits-all treatment, only a tailor-made multidisciplinary treatment to suppress symptoms.

POTS also, like a large firm, has small ramifications so subdivided forms.

For example, POTS that mainly disrupts blood pressure, disrupts the fluid balance in the body or causes neurological complaints.

POTS is one of several raindrops on a large umbrella called "dysautonomia", it is just one of the syndromes that exist involving the autonomic nervous system.

It is also called an allergy to gravity because the symptoms arise when the body is standing or moving.

The on-board computer of my inner body is defective and gives so many other complaints and discomforts that involve my digestion, the fluid balance in my body that actually makes me dehydrated with the slightest effort as if I had walked for hours through the desert.

I also have more than just POTS, but also other auto immune disorders that suddenly came into my life in random order, making POTS just another passer-by in my life who decided to stay.

I also have Addison's disease, a problem of the adrenal glands that stop working because it attacks the body's own cells, quite frankly.

Celiac disease has also been explained with this principle, the first condition that I got and unjustly attacks when I eat gluten.

My thyroid also no longer works and is usually associated with Addison's disease, so actually 3 autoimmune diseases for the price of one.

When I got POTS my stomach function started to decrease, which is called gastroparesis, again there is a clear connection, as much as Reactive Hypoglycemia which came on last (for now), a rare form of diabetes that when I eat sugar my body overreacts and produces too much insulin, which just gives me a low sugar (hypo).

Speaking of aversion...

All these passers-by who have come to live in my inner body each require a lot of care, time and energy, leaving little energy to do what I like to do that has not to do with care but has to do with pleasure such as walking, going out, playing sports, working,... making my contribution to society and belonging to the society.

Every day I receive x number of spoons from my inner body, each spoon represents one undertaking that demands energy from me.

When the spoons are gone, the body is burned out with it's energy and rest is all that is left.

Normal, day-to-day tasks, pleasant excursions, meetings, active activities have their prices and the more intensive and longer one particular undertaking is, the more spoons I lose.

My body needs regular breaks that can take days to recuperate, gain energy that I can then reinvest in limited amounts.

The emotional part also plays a part in this, life-changing events can also disrupt and exhaust me completely inside.

It is more difficult for me to accept that my inner body is so limited in it's energy than for bystanders.

The feeling of powerlessness 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 to be equal.

The lack of not being able to function optimally in my various functions as a wife, partner, mother, girlfriend,... gives a lifelong loss that now and then turns into sadness.

A grieving process that will never go away completely...

Opinions are sometimes harsh from people who see someone sleeping, or who are easily exhausted during a walk and ask for a break.

There is no credibility when the visual aspect does not match the story.

The world of a chronically ill person is incredibly harsh, a world in which high standard expectations are maintained from birth.

The responsibility that we always have to give for why we need rest, have to reschedule an appointment or cannot go to the promised party is a heavy toll.

An extra weight that is carried 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 flourish as a woman, looking for the right balance.

In which I take good care of myself (which also cost spoons), but also of my children and partner.

And that process is not always linear, so that I am later presented with the bill, I am completely burned out, just have no energy left, I am more emotionally vulnerable and I am completely overstimulated.

Because that, too, is a part of me that needs timely care so that negative thoughts and fears don't overgrow, whether I'm brooding over the opinions of others or feeling intensely one of the so many symptoms of one of my ailments that are taking over.

A chronically ill person can be inundated daily with an unpredictably many different stimuli that can come from inside or outside and even at the same time where you feel like an inexperienced magician who has to keep 10 balls in the air at once.

The chronically ill are real magicians, we can hide emotions so well and endure even the worst pains without flinching as we keep spinning with the world that no longer plays our rhythm.

𝒯𝓇𝓎 𝓉𝑜 𝒾𝓂𝒶𝑔𝒾𝓃𝑒 𝓉𝒽𝒶𝓉 𝑒𝓋𝑒𝓇𝓎 𝒹𝒶𝓎 𝓎𝑜𝓊 𝑔𝑒𝓉 𝒶𝒷𝑜𝓊𝓉 𝟧 𝓈𝓅𝑜𝑜𝓃𝒻𝓊𝓁𝓈 𝒻𝓇𝑜𝓂 𝓎𝑜𝓊𝓇 𝒾𝓃𝓃𝑒𝓇 𝒷𝑜𝒹𝓎 𝒶𝓃𝒹 𝒽𝒶𝓋𝑒 𝓉𝑜 𝓈𝓅𝑒𝓃𝒹 𝒾𝓉 𝒸𝒶𝓇𝑒𝒻𝓊𝓁𝓁𝓎 𝑜𝓃 𝓎𝑜𝓊𝓇𝓈𝑒𝓁𝒻 𝒶𝓃𝒹 𝑜𝓉𝒽𝑒𝓇𝓈.

𝒲𝒽𝒶𝓉 𝓌𝑜𝓊𝓁𝒹 𝓎𝑜𝓊 𝒹𝑜 𝓌𝒾𝓉𝒽 𝓉𝒽𝑒 𝓈𝓅𝑜𝑜𝓃𝓈 𝑔𝒾𝓋𝑒𝓃 𝓉𝑜 𝓎𝑜𝓊?
𝒜𝓃𝒹 𝒽𝑜𝓌 𝓌𝑜𝓊𝓁𝒹 𝓎𝑜𝓊 𝒹𝑒𝒶𝓁 𝓌𝒾𝓉𝒽 𝒾𝓉, 𝓌𝒾𝓁𝓁 𝒾𝓉 𝒷𝑒 𝓎𝑜𝓊𝓇 𝒸𝑜𝓁𝓁𝒶𝓅𝓈𝑒 𝑜𝓇 𝓌𝒾𝓁𝓁 𝒾𝓉 𝒿𝓊𝓈𝓉 𝒷𝑒 𝓎𝑜𝓊𝓇 𝓈𝓉𝓇𝑒𝓃𝑔𝓉𝒽?

“𝓜𝔂 𝓱𝓮𝓪𝓭 𝓲𝓼 𝓽𝓱𝓮 𝓰𝓻𝓮𝓪𝓽𝓮𝓼𝓽 𝓭𝓸𝓶𝓲𝓷𝓪𝓷𝓽 𝓻𝓾𝓵𝓮𝓻 𝓸𝓯 𝓶𝔂 𝓸𝓹𝓮𝓻𝓪𝓽𝓲𝓷𝓰 𝓼𝔂𝓼𝓽𝓮𝓶 𝓽𝓱𝓪𝓽 𝓘 𝓽𝓻𝔂 𝓽𝓸 𝓭𝓲𝓼𝓪𝓫𝓵𝓮 𝓲𝓷 𝓸𝓻𝓭𝓮𝓻 𝓽𝓸 𝓵𝓲𝓿𝓮 𝓵𝓲𝓯𝓮 𝓽𝓸 𝓽𝓱𝓮 𝓯𝓾𝓵𝓵𝓮𝓼𝓽.”