I am sure that if you ask anyone living with sickle cell who is regularly sick what upsets them the most, it will be the fact that this thing called sickle cell crisis creeps on them at any time. Most times, when people talk about these crises, they will say that people living with sickle cell have pain. The pain of sickle cell crises cannot and should not be talked about lightly. By this I mean there has to be an adjective to describe this pain. It is not a toothache pain, neither is it the pain of hitting your foot, elbow, or any other part of your body against a table, nor is it a headache or stomach pain.
So recently, I had been out and about all day. Very late that night, I had spoken to my mother. I then went to my bedroom to get something and by the time I walked back into the living room, my body was on fire, pain-wise. I did not get any sense of something untoward coming; the pain just appeared. And from a scale of one to 10, it had gone to a hundred. In my state of emotional incredibility, I sat and wondered how this unfortunate thing reared its ugly head in the early hour of the morning when I was about to go to bed. I sat there perplexed as I was trying to internally think about what to do. Do I go to bed as I was ready to? Do I go and have something to eat and take tablets? I sat there, not knowing what to do, totally confused. I thought to myself, how do I describe the pain? This is a question that one is asked in hospitals. Is it a numbing pain? Or is it acute? I would look at these medical personnel, unsure of how to respond. The reason is how does one truly put an adjective to the pain of sickle cell crises? I don’t know.
But I did eventually go to bed, without taking anything. Taking tablets is not my usual first point of call if I am at home. But I would do so if I am outside as the last thing I want is to make a fool of myself in public; this has happened a few times, in my youth. In bed, unable to sleep or settle in one position, I thought to myself about the kind of life I lived with sickle cell. So, in bed, I was thinking, ‘Tola, is it a shooting pain?’ By this I mean a pain that is increasing in intensity. Yes. Or could I simply say that it is as if a strong hammer is being swung to deliver impact to different areas of my body, where there is a bone. A hammer can be used to crush a rock, it says in its definition online and that is exactly it. This unseen hammer is repeatedly making impacts on the bones in my body and what I can do in the first instance is to cry out because of the severity of this pain or groan. The reason why I am talking about this pain is because it is out of this world. It is a pain that is indescribable. At the height of this pain, one cannot think straight; it is almost as if one is going insane. The crazy thing about this pain is that it can last for hours or days.
As I tossed and turned all night, I thought about how this illness had absolutely no respect for the body it inhabited. How could I be okay one minute and be sick within a matter of minutes? Sickle cell makes no sense. A lot of people living with sickle cell live a life that is unpredictable because of how the crisis sneaks up on them. Those living with it are told by their medical professionals that as they get older, symptoms can get worse.
I used to think how worse could it possibly get? It is already as worse as it could perhaps be. But this is true because one could have complications that will impede one’s quality of life. One of the main complications is avascular necrosis. It is also called osteonecrosis. Avascular necrosis is the death of bone tissue due to a lack of blood supply. It can lead to tiny breaks in the bone and cause the bone to collapse. A broken bone or dislocated joint can stop the blood flow to a section of the bone. As the condition worsens, affected joints might hurt only when putting weight on them. However, one could eventually feel the pain even when one is lying down. The pain can be mild or severe. It develops gradually. Pain associated with avascular necrosis of the hip might centre on the groin, thigh, or buttock. The hip, shoulder, knee, hand, and foot can be affected. Some people develop avascular necrosis on both sides, such as in both hips and knees.
If one has this, it means that on a daily basis, one is not only dealing with a crisis that conceals itself and comes up at any time, but one is also dealing with constant pain in the area where the avascular necrosis is manifesting itself. So, when you ask someone who has sickle cell, how they are, and their reply is okay, be rest assured that their okay is not your okay. Their okay is one, where they are most probably in pain, but coping with it.
And as the morning daylight came through my bedroom curtains, the pain had subsidised. The pain had gone from 10 to two and for that, I was grateful to He who created me.
If you would like to get in touch with me about sickle cell, do so, via email: [email protected] And do check out my blog: https://www.dailylivingwithsicklecell.com/ My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com
