Life as a Sickle Cell Sufferer

Sickle Cell is an hereditary Disease, that a person must get from both parents.  It affects the Red Blood Cells and causes them to become mis-shaped. Instead of being round and somewhat like a doughnut they become shaped like a sickle or half moon.  These then begin to get trapped in a person’s blood vessels and so stop the constant blood flow and cause excruciating pain. These episodes are known as “Crises”.  

I was diagnosed at four years old in the 70’s and as I child I was ill quite frequently.  As I became an adult, I would have very small “crises” but they were very manageable. All I had to do is rest, drink plenty of fluid and keep warm.  Occasionally I had a few big Crises that would land me in hospital but on the whole I was healthy, just always felt tired/ got easily exhausted.

Until 2016 when I went into Menopause, and then the stress of those hot flushes caused a massive Crisis and I ended up in hospital and really weak.  The crises kept happening because of the Flushes and I remained weak for months.  Off and on I have had more problems with my sickle cell than in the last 30 years, then Corona Virus Struck the World.

Because of having Sickle Cell I am classed as one of the vulnerable, therefore I had to shield.  I was okay for six months as I stayed in and then the Government said it was safe to go out.  So I went back to work as a School Guide.  Within four weeks of going back, I became ill and by the end of October 2020 my daughter had to call the ambulance and get me into hospital despite all my protests.

I live in Birmingham so I was taken to the Queen Elizabeth Hospital, by this time I was so weak that I couldn’t easily get to the toilet.  They tested me and it came back negative, but I lately learned that I had Covid 19 but by then it was out of my system. I know because I gave it to my daughter a second time.  By the time I came out of hospital, she tested positive.

Upon investigation they told me that my blood count was 5.2.  I had internal bleeding and I had pneumonia.  Lately they also discovered that I had a hernia.  Five days later I came out of hospital still very weak but alive.  Nurses came every few days to give me vitamin B12 shots and it took about two months to recover.  

From January to April we again were in Lockdown in the UK so again I was shielding.  After being in hospital I noticed a floater in my eye.  It had a specific shape and it kept that shape for weeks.  However in February I noticed that it started to change shape and then one morning I woke up and my sight in my left eye was very hazy.  I tried to find out where I could go for help but the eye hospital was not answering and the other various opticians I couldn’t get through to either.  By the evening the haziness was not so bad.  When I woke up the next day though I was completely blind in my left eye.

I finally got in touch with a local optician, she examined my eye and sent me urgently to the eye hospital.  I was there for about five hours and had to go back early the next morning.  One of the blood vessels in my eye was bleeding.  They said hopefully it will stop on it’s own and that all the blood will disappear.  It kept bleeding for a few days and then it did stop and after about a week & a half I could see again.  

Then exactly four weeks later I had a crisis in my right hip/bottom. This lasted for three days then I was weak for one day and then my ankle started hurting.  I could not put my foot down and bear any weight on it.  It felt as if it was broken, I couldn’t walk.  That lasted for another three days and then the pain was relieved for another day and then it travelled to my knee.  The same thing, it was very difficult to walk, this time it lasted for about two weeks before it got better.  I am glad to say that at the moment I feel as if I am back to my old self, I am just trying my hardest not to get sick again.

Even though all these things have happened to me, I feel blessed and grateful to still be alive. I thank our Creator Jehovah God that I can still feel the sunshine and see the blue sky and smell the flowers.

It is GREAT to be Alive!!! 

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