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

 

A Note on Sickle Cell: THE GLOBAL INVISIBLE DISEASE — 5 Things You Need to Know

 We Help Grow Understanding,

Some may or may not know about it, this is a terrible state of affairs, I wrote about how Sickle Cell Patients are mistreated under medical care, where people are supposed to feel safe and looked after in A Portion of Humanity that makes me wonder why? Why would people get treated this way, and what comes down to it is a lack of education.

The Scope of Who it Effects

When people think its just a black issue because of the disproportionate reports by black people it leads people to believe this is a purely black issue and whatever biases take over from there.  IMG_5017

Sickle Cell is a worldwide mutation its not something easily fought or shirked off. Deriving from areas that mosquito feed the mutation evolved to counteract malaria which mosquitos carry; the effects of these bought about some changes within the chemistry of those native to these areas.

Contrasting Views of How Similar illnesses are dealt with

As you can see this condition affects people in India and the Middle East as well as South America its not just a black problem but it is something we talk about enough that gives me the hope we can do something about it and add the different cultures into the mix. There are more people with Sickle Cell Trait than there are with Multiple Sclerosis & Cystic Fibrosis combined in the UK.

I do not see how this is not a bigger conversation and how I can find advanced campaigns  of how MS effects people in the winter and so forth but there can’t be one with Sickle Cell; what is especially great is the way they’re building awareness, there’s just a stark and obvious contrast in how they’re perceived globally even though one can effect more people than the other. It’s great what they’re doing with MS, we would really love the fight to be taken seriously with Sickle Cell too.

A Brief History of Western Understanding

Sickle Cell has thought to have been around for 5000 years yet it’s said to have been “discovered” in 1910 by a Dr. Herrick in the America’s; Sickle Cell trait “discovered” 1927 by pair Hahn and Gillespie — it wasn’t until around the 50’s where more significant progress was made Nobel Winner Dr. Pauling & Itano who broke down the understanding of what we know about “Molecular Disease” (diseases that have proteins with abnormal chemical structures); Sickle Cell being the first of thousands.

The 70’s bought about “genetic Counselling”, with a smidgen of eugenics where organised thought and teaching spread some propaganda in the African and Caribbean communities that have now become part of the cultural fabric… You don’t hear accounts of “Sickle Cell” before western medicine started talking about it, nothing black people done or may have done for it is not recognised in. the medical zeitgeist; along with the destroying of a long documented history there are many things we still don’t know about ourselves.

Cultural Measures Taken to “Avoid” Sickle Cell

What I’m talking about now is the cultural setting and how medical conditions are treated in the black community all around the World. We don’t take our medicine or intelligence seriously because its not accepted by the powers that be within the institutionalised imperial system that is the European Health Care system. That being said we still don’t know much about Sickle Cell, not much work is done for it and culturally it is preferred Sickle Cell is bred out than propagated.

Although it is a 5000 year mutation people believe it can now take a generation to get rid of it; colour me skeptical but that doesn’t sound very much of an effective way to handle it, I’m not trying to control what people do with their bodies but I don’t think Abortion of a child which you find out has Sickle Cell prenatally is a solid measure either. I feel there are better ways to Handle this 5000 year (at least) mutation.

Broadening the Conversation

I believe that although the history was ripped away burned destroyed and disrespected we can look forward to deeper understand what Sickle Cell is. Most people who look into it either have the Gene, the Trait or know a family member that has it. All round 15,000 people have it in the UK that is 15,000 people whom have a chance of getting mistreated by hospital staff Thats 15 thousand too many and another 250,000 who can help or are too scared to but have no way to help; who think their only duty to their family bloodline is to make children who don’t have Sickle Cell.


Editors notes

These points are really too basic and just spread propaganda about the condition with no real ‘Scientific basis’ although the pseudo science is accepted among the whole African and Caribbean culture. It needs to be stopped and the conditions need to be taken with the same seriousness, this is something I will have to explore in the next blog.

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

Living Through Crisis

Addict Stigma // Opioid Crisis

What is a Crisis

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

A Note on Sickle Cell: A Portion of Humanity — A need to be treated with decency

We help again,

I have got a resounding response with my open letter about health and sickle cell and questions. I am thankful for the response to dose of optimism (If you haven’t read it already please do) its appreciated and I want to continue good word just helping people more informed.

With that, a response to the questions I got because people’s main response is ‘would never have guessed you have Sickle Cell.’

Life put a set of challenges in front of me us all. With me I had to grow and learn to solve those problems like an adult early on. I took time out to treat my body with a sense of dignity I’m not awarded in most places.

During my life I’ve had a really big problem with not being treated like a human when I have told people about my condition, doctors who are just in training getting along and had a 20 minute lecture on my condition that I’ve lived with for 20 years. I’ve had to become the master of my own body because if it’s left in someone else’s hands to take care of there’s a big chance it will be done without humanity.

Studies show that Sickle Cell patients get treated like drug addicts and are made to wait longer and have to go through more tests because the hospitals do not believe them

Studies from one hospital show , in a wait to get pain medication – Sickle Cell patients wait 60% longer than other patients who report suffering from less pain – 60%. Just in knowing the basics of the condition you will know that if I or somebody else attends the hospital due to a crisis, we have EXHAUSTED ALL RESOURCES at our disposal and the hospital is our last line of defence.

Some people just like me dress up to go to the hospital, not to keep warm to just look more presentable so that when a doctor or nurse will see us they don’t make a snap judgment past our condition.

Some women even believe that it’s their duty to even wear a full face of makeup to give that extra step of presentability.

It is know and a study on Junior doctors shared that they think Black People can handle pain more than any other race therefore we are put in a position to wait that little bit longer by people in the medical field especially black women

As Sickle Cell patients we are made to think steps ahead to ensure we are treated humanely in the stead of people that are supposed to treat us like humans no matter what.

I along with many other of my brothers and sisters despise not being treated like a human so we with will do whatever we’re told to not be put into the position of feeling less than that. We become our own doctors physicians and nutritionists to ensure we don’t have to make that dreaded hospital visit where we’re put in front of someone with only general knowledge in health and no specialised knowledge in haematology.

For all those that want to know where I got my information from here are some links that can help you in your own educational journey.

extra reading:‘Every time it’s a battle’: In excruciating pain, sickle cell patients are shunted aside

further reading: Sickle cell patients face a ‘fight for everything’ — even attention

Further Reading: Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites.

Whatever Moves Your Dial

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

Global Invisible Disease

Living Through Crisis

Addict Stigma // Opioid Crisis

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