Sickle Cell Strong

I have really amazing news which I want to share with everyone!

I am one year hospital admissions free! #Sicklestrong

As I am sure you all know I have sickle-cell anaemia an inherited blood disorder. Red blood cells which are round and soft become hard and sickle shaped, this causes a multitude of problems such as painful crisis, organ damage and organ failure, extreme fatigue, strokes, swelling of extremities, bacterial infection and may lead to death.

Through the years I have struggled with having sickle-cell, there has been many ups and downs, bouts of depression in dealing with a life long illness but it has taught me many lessons, some hard but always necessary in making me the person that I am today and despite not realising it at the time I am grateful for everything I have been through.

It is a credit to all I have learnt and the support system around me that has kept me out of hospital this year. In my lifetime there has never been a full year without me being admitted to hospital, every year since I was born I am admitted to hospital five or six times a year from one to six weeks at a time.

I had enough of always being sick and I have tried different things throughout the years. But last year I decided to try something different subtle. I kept meditating, I tried to eat a little healthier but the main thing I have changed is drinking alkaline water. It has revolutionised my life, I drink four litres of it every day and it works! It really works. I am not saying I have not been sick for a year, I still get daily pain, and ‘mini-crisis’ every few months but the really bad crisis that I used to get has gone. I know it is not forever but I have enjoyed a year without once having to deal with that level of pain and I am beyond grateful. I am looking forward to more healthier days ahead.

 

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Commentary

Good Evening,

I just want to thank everyone for all their support on Friday, we raised £200 for sickle cell awareness day!

I wasn’t able to post as much as I wanted as everyone was very busy, but I hope you enjoyed the poem I wrote.

As it’s summer, cue the dating season and I will be writing something about it in my next post!

Till then.

 

Sickle Awareness Week: Poem: The Mutant Gene

You were created for aSCD Awareness Ribbon better era.

You once had such pure intentions.

You advocated progress.

You brought instead constraint.

You changed the world forever.

You broke the circle.

You bent what was once whole.

You, my problem, my pain, my DNA, my sickle, my cells.

 

Commentary

Good Evening,

I hope you enjoyed The Witness, it is just a little teaser, more will come later.

As it is almost World Sickle Cell Day, I am going to be posting stories and testimonials about what it is like living with sickle cell. Some of these stories will be written by me others will be written by guest bloggers.

I will be having a bake sale to raise awareness for sickle cell on Friday 17th of June from 10.00am till 16.00pm at Hammersmith Hospital, W12 0HS. Please come and support.

Thank you.

Short Story: The Longest Bus Ride

I opens my eyes, I’m not awake, but this isn’t sleep. I’m drowsy but my mind is focused. A jolt of electricity rushes through my body. The pain is powerful; like a whispered secret in my ear. I control the trembling by concentrating on the noises washing over me. The whispers and the silence. The movements and the stillness. Another jolt, the pain wants my attention. I focus for a moment, and really try to feel. Should I be alarmed that I knows this much pain? But it’s like music, da dum da dum da dum, with every pump of my heart, fresh pain. I marvel at the body’s ability to endure so much, it’s like war and I have not yet learnt how to lose. I suck in a breath. My moment of weakness has cost me as someone turns to look.

Concern? Fear? Suspicion?

I wants to explain; I opens his mouth, then closes it again.

More attention from the stranger.

A splash of water on my trembling hands. I forgot about the tears.

I jolt in my seat as the bus stops, my eyes flutter momentarily and I almost lose control of the reins. The stranger gets up and with one last look leaves me.

I’d feel relived but all my body knows is the pain, all my feelings and all my mind. The whole world is pain.

The pulsing in my head blurs my vision for a few moments and my body stops taking in oxygen as panic seeps through vulnerable thoughts.

My stop is fast approaching and I prepare my body for what I’m about to do, but obedience will not be had and the pain ups the stakes.

It’s my stop, my eyes strain as I gazes at the open doors slowly closing.

I lurch out of my seat, my ears pick up alarm from the other commuters but all I know is the exit. I stumble but I do not fall.

Slowly I’m made aware that the bus is not moving despite my presence on the pavement. I’m being looked at but I have no time for them.

I’m single minded in my need to get home. Every step is absorbed by my body.

Stopping never occurs to me.

Something more important is demanding my attention and that’s time. I can feel the countdown scarping against my bones. The beat is obnoxious in my eardrums.

I’m through the front door.

Alarmed voices and softly spoken words. I’m at the centre of the calmest storm.

My body wants to give in and I’m tempted but peace will not be found at home.

The wait almost breaks me but I endure another ride on a different type of bus.

I’m lying still; the screams are so loud but I can’t open my mouth to voice them. The pain doesn’t no defeat but nor do I.

The Hospital is close but I know the pain is in my lifeblood, my very DNA, my sickle cell anemia.