A Note on Sickle Cell: Living Through a Crisis — A Fragment of Reality

We help grow understanding,

This blog is terribly hard to write and I have been fighting my conviction to it, thinking to myself maybe pick something, relatively lighter or more informative that people will understand.

The reason why is because I am about to speak about something that’s felt, it is the very real insufferable and intolerable pain of CRISIS as it’s been dubbed by doctors.

I took my time and spoke to my counsel of advocates as I was unsure of what benefit this would bring, they unanimously assured me this needed to be wrote about.

Without further preamble let me explain…

What happens to the body

Crisis is when your body is in shut down mode. What happens physiologically is red blood cells mutate, this mutation stops them from being able to carry oxygen and become sticky. They stick to blood vessels and others cells that have mutated, restricting blood flow through the body and that blood blockage is the cause of the pain.

These cells can live up to 8 days, the pain can last much longe this pain that we suffer though is almost invisible but it exists and this puts it in the category of invisible disease as we can be in pain without it showing on medical instruments

Suffering Through the Crisis

There are many different level of pain, crisis is the highest. There’s nothing many of us fear more than the pain our own body can produce, some of us so much so we take high level precautions before leaving our houses.

This pain can have you spinning and turning, writhing uncontrollably in your bed and want to be perfectly still at the same time because movement causes pain but stillness also causes pain.

The pain will have you breathing out of rhythm trying to catch any sort of breath due to the shock of the pain some of us are due to faint.

The only thing that separates you from ease of mind is the highest doses of opium; these are almost lethal doses to some, for us it is but a means to an end.

When it feels like the medication has finally kicked in to what’s known as a codeine coma but you won’t sleep, not till your second or third scheduled dose; you feel that moment of relaxation and separation from the distress your body is going through sometime after that third dose you sleep

Suddenly you are jolted up immediately you don’t know how much time has past, it doesn’t matter, the opioid has wore off and its back to step one… it’s time for your next dose; there’s a problem though, you are in the most comfortable position you have been in since the pain started.

Your numb body distracted you from the fact your arm is now paining, you feel the buzzing and fear of you stretch it that buzz will turn to a sharp stab, can you even pick up the water bottle now? Doubt it. It’s 1am no one to check up on you for hours, the fight through the night begins.

If you are in the hospital you will have to press the buzzer multiple times, home? How can you shout? You don’t have the strength, your phone, it’s somewhere here but you have to conserve movement to the minimum. Fuck IT! I’m sliding this bottle to my face and if it spills, it spill, ‘I’m a pro’ you tell yourself. Fuck it let’s go, use all your grip strength in your one better arm to open it, spill drink down your gullet and swallow the pills. — This is all in the first minute of you waking up.

I could go on. It’s a fucking struggle, as I write this I understand it’s pretty much only a home experience not a hospital one, I will share a hospital experience but at a later date.

This blog really took a lot out of me and this example of trauma is not unique I assure you; this happens weekly to someone and they deal with this. Which is why we call ourselves warriors because that fight is not an easy one, Death is waiting right there for us to give up on life but we choose to fight every time.

Whatever Moves Your Dial

Damilare. Not Your Typical


To get in contact with me find me on

Facebook: fb/nytypical

Instagram: @nytypical

Twitter: @nytypical


Thank You For Reading… Please read my other Feature blogs:

A Dose of Optimism

A Portion of Humanity

Global Invisible Disease

Addict Stigma // Opioid Crisis

And visit Sickle Cell Companion  for all my other literature on Sickle Cell

 

@NYTypical

I document all the information I've gathered in my working and real life using reason and the written word to share with everyone how I ask an artist see the world. I research Plastics and Concrete and I'm educated in tech, design and art history. While having active practitioner experience in Advertising. I use that myriad of technical skills and display how they apply in the world and products we use starting with fashion.

7 thoughts on “A Note on Sickle Cell: Living Through a Crisis — A Fragment of Reality

  1. Just seen ur blog from ig and loved reading the different topics on sickle cell!! I suffer so a lot of them hit home (this one especially) keep up the good work I will be bookmarking ur blog and sharing also!! Peace n love!!

    Like

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