It’s been already over a week since I posted this on my Facebook wall to raise awareness. World Sickle Cell Day and Father’s Day was Sunday, 19th June.
I had been meaning to post this on my blog but for some reason never got to, until my brother reminded me a couple of minutes ago that not everyone is on Facebook so I need to keep the momentum going for people like him (the non-fb users)
So this was what I wrote that day:
Sunday, 19th June
My red blood cells are shaped like croissants and yours are round.
Your Hb (blood count) might be 18 and mine is 7.
My red cells get sticky in my blood vessels and restricts oxygen from circulating around the body, causing what is known as a ‘painful crisis’.
My crisis is excruciating and debilitating that I always describe it as having a number of people with hammers assaulting every part of my body at the same time, predominantly my chest. I am like a fucking vegetable when I am in crisis.
I may often have paramedics in my flat at 2am treating me.
People often look at me and say you don’t look sick and I smile. A comparison of the pictures may show you why I smile. One minute I am crushed and helpless and the next I am all fine and dandy.
Triggered by a number of factors, often unpredictable with the predominant feature being pain.
My parents feel guilt and are upset when I am in crisis so I stopped telling them. It’s hard for parents, you know?
Western medicine predicts a life span of 45 years for a sickle woman meaning that women who live(d) over 45 will start to feel like they are on borrowed time.
Our organs are damaged each time we sickle.
If we sickle in our eyes, we could have sudden loss of sight. Yep! We sickle everywhere because cells are in every part of the body. If we sickle in our brain, it could be dire.
Sickle boys/men can sickle in their penises and that’s called priapism. It’s often humiliating and could be life threatening if they are not treated urgently.
I don’t think there is an equivalent effect on women as I haven’t heard of any woman sickling in their vaginas. I for sure haven’t. 😊
Your red blood cells will break down and regenerate new cells every 120 days. Mine happens every 12-20 days so one can imagine the mad levels of overdrive at which my body and organs constantly operate?
It means I will be anaemic every 12-20 days for the rest of my life. As a result of this, sickle livers will not work as effectively as yours. Meaning that we are likely to have it working ten times more than its actual capacity and so our livers would store more bilirubin, a yellowish substance, somewhat like waste, that causes jaundice. This is why you may notice lots of people with sickle often have yellow eyes. 💛
I have medicated each day since I was born so I don’t know what it feels like not to be constantly medicinally toxic.
I operate on 1/3rd of a healthy woman’s energy but somehow I do ten times more than most healthy women.
I have a dysfunctional and an almost unhealthy sense of this need to constantly work, learn and play. My parents can’t stand it :). Rest is hardly in the equation.
I am constantly fatigued and will never know what it feels like never to be tired.
I have survived 7 pneumonias in 3 decades. Hmmm! Wonder how thats happened? I now get a 4 yearly pneumococcal vaccine.
1 in 3 of my relationships will fail because my partners cannot handle my condition or when they can, I am subsequently then perceived as a bit of a liability if/ when I am ill. (For e.g one partner could not be bothered to get on an ambulance with me to hospital).
I cannot love any man until I know they are sickle trait free. If I have a child with a man who has the trait, I am 99% very likely to have a sickle kid. Imagine having to ask questions before allowing your heart to fall for someone?
In 12,000 days I have existed on earth, I have probably spent about half that time on a hospital bed!
I get needles pierced into my veins each month to draw blood. It’s happened for years that suddenly my veins are non- existent that it’s become a constant struggle to draw blood. They now use an ultrasound machine to find my veins.
People who have sickle cell have most likely suffered a stroke or had other serious complications like organ failure.
Kids with sickle are likely to eat weird things such as chalk, sand or cotton because they have a food disorder condition called PICa. PICa is when our sickle bodies lack a mineral) for example zinc) and the body somehow seeks and craves natural forms of zinc that are non-edible.
Most children with sickle cell will have their spleen removed to help them deal with infections.
Children cannot understand what exactly is happening to them when they sickle.
If I run, I would sickle.
If I run for the bus, I would sickle and sometimes I don’t even catch the damn bus. So I stopped.
I have never been to a gym, I don’t work out.
I never participated in sports in school.
I do yoga and a special adapted 7 mins workout each day.
I walk at least 30 mins a day.
I hike in Epping forest at least 3 times a year.
My heart is too fragile (literally and figuratively) to have any form of cardio-inclined exertion.
I can never be exposed to any extreme weather cold or hot and not fall ill.
If I don’t drink at least a liter of water a day, there will be problems.
If you sneeze on me on the tube and I catch your disease, it will trigger a crisis.
I do not use lots of public toilets to avoid catching an infection.
My overall hygiene has to be excellent otherwise I could run into problems.
We live like bloody robots sometimes.
Always aware, never oblivious, always alert, always avoiding, and essentially, just doing everything the doctors prescribe.
1 in 5 people with sickle cell are likely to be depressed, clinically.
I am not. I get moody when I am in pain and tired. I hate those fucking narcotics they give me when I am in pain. I feel out of my body and they mess with my kidneys.
But 3 in 5 of us are likely to be creative. We spend a lot of our time on a bed.
Generally, most people with sickle cell will have lots of limitations, maintaining their studies, holding down any form of a career or staying employed, and potentially losing their place socially in society because the condition is likely to affect their social interactions due to the unpredictability of the condition. When I cancel on friends last minute, it’s not nice. But they hardly get it. I cannot be physically in pain, be out socially, just to please my friends. A crisis can happen anytime and anywhere and is often unexpected.
I don’t know how I have done anything and everything at the rate I go. I have been lucky. I am on a drug that treats blood cancers. It’s basically a lower level of chemotherapy. I lose my hair, my nails darken and I get constant migraines, I have little or no white blood cells. But I get by, it’s keeping me well by giving me more of the cells found in new babies (HbF) and reducing my ‘sickle’ cells and I love life so I am a happy girl most of the time. Sick, but happy. Some of my friends say ‘June, you are not just sick but you are actually sick’. I know! .Sickle cell may have made me mad!
So doctors may speak very clinical language that make it difficult for people to understand what it feels like to live with sickle cell on a day to day basis but I have laid out the facts in simple language for you. I want you to be aware of sickle cell. It is damn too serious a condition, almost comparable to cancer, only that cancer takes lives quicker. There are two terrible conditions that affect the human cells. There is still no cure for sickle cell because it’s a genetic disorder. You really cannot correct your DNA. I hope they find one in my lifetime.
So later today, I am spending the day with sickle friends and supporters at Pimlico to celebrate World Sickle Cell Day and raise awareness through our national charity.
Please put a red ribbon or something red on your social media profiles today to support people like me.
Hats off to all the warriors out there.
Happy World Sickle Cell Day!!! ❤️ – and more especially, to all the sickle dads out there and fathers of sickle kids, special shout out to you today xx
P.S – I will be the lady in red today ❤️
No pity parties please?My motive is to raise awareness with my personal story and photographs.