Once upon a time I would have classed myself as unfortunate, believing the way sickle cell disease affected me was so unfair. I knew people that had SS that were not going through half of what I had to deal with. Severe crisis every two weeks, a childhood constantly in hospital with hospital staff becoming part of my family group and so much more.
My life was truly controlled by this illness and there seemed to be nothing that I could do to make a difference.
Nothing seemed to work for me, my health was declining and the doctors just didn’t know what to do. They eventually decided that because of the severity of my crises it was necessary for me to have regular exchange transfusions which I ended up having for over 30 years.
During that time my veins were literally slaughtered and believe you me that is no exaggeration.
I developed a phobia for needles and even now if I have to have a blood test I feel so anxious but try not to show it. If somebody approaches me with a venflon I am terrified because the memories of needles were awful.
Blood transfusions also meant Iron chelation so that the important organs like the heart and liver were not overloaded with the iron that the blood contained. My little Graysby pump became my partner always by my side as I had to wear this under my clothes for twelve hours at a time while the medication Desferal was slowly infused into my body. I was taught to set up this pump, mixing up the solution and then inserting a green butterfly needle intermuscular into my tummy. I was continually sore, as I ran out of new areas to insert the needle and was always conscious that people would know that I had this machine under my clothing.
I cried many times but was determined to persevere, anything that could help to make my life a as normal as possible was worth doing. It was tough but I realised to this day that nothing in life comes easy, just like nothing in life is free.
I have come so very far by trying to be positive, easily done as a child but far more difficult as an adult.
My blood transfusions could not continue after access to my veins became impossible and my groin could not take any more needles. I remember it got to a stage where I had to be sedated in order to have a venflon needle inserted into my groin to have my monthly exchange transfusions.
The next stage was coming off blood transfusions and reluctantly trying Hydroxyamide…….all the way the journey has been difficult but guess what I am still surviving.
My faith in God has been so important to me all the way and immersing myself in creative writing and my art has kept me sane. When you live with an Invisible Disability it can often be extremely lonely because it can be difficult to talk to those around you especially if you feel that people are not really listening or don’t understand.
My faith is my choice and it works for me, it helps me to look at life in a positive way and gives me a purpose for living. I put God before everything that I do and so far he has never let me down. My strength lies in realising and knowing that I was put here for a reason even with all the pain, depression and struggles I have been through I have come out the other end and am determined to fulfil my purpose in life by helping others to believe in themselves.