In finding and making peace with tomorrow.
11pm: ‘Tomorrow will be a good day’. This thought runs through my mind as I hang up the next day’s outfit which is meant to make me slay to the Gods and shock everyone who is blessed to lay their eyes upon me. “I’m feeling really tired today but not to worry, I’ll go to bed early and I will wake up feeling great.” I convince myself. Then I practice some deep breathing to raise my oxygen levels till I drift off to sleep.
2 am: I am woken up by an uncomfortable feeling that I know too well, this time it is on my back. I convince myself, “let me go to the toilet then I get the hot water bottle.” I do some back stretches as I wait for the water to boil, “should I take a painkiller?” Nah, I am not that weak, let me be strong. I think, as I fill up the hot water bottle. I get back in bed, put the painkillers under my pillow, just in case, fall back asleep with the hot water bottle on my back.
5.30 am: I can’t help but pace around the living room watching anything that will offer a good distraction on YouTube as I wait for the painkillers to save me. What else can I do when I have done all that I should have done? I can’t be bothered with sitting or lying down as it awakens sensations similar to glass stabbing me up and down my spine. At least I am at home, you can’t even imagine the stress when this decides to happen when I’m out or at a friend’s house. People don’t understand, those who have an idea assume it is as a result of my carelessness, or they wish they could help but there is nothing they can do. What to do if my body is my own worst enemy, what do I really have control of?
Obstacles of Sickle Cell Disease
My main job, taking care of my body and health, was biologically assigned to me by genetics. As a a woman, I don’t get it as bad as men with sickle cell anaemia. In society, men are expected to have their lives under control and therefore male sickle cell warriors do not receive much emotional and financial support. To make it worse, they sometimes go through a sickle cell crisis that leads to painful episodes of priapism.
Sickle cell disease is different in every person, however women and girls may experience unique complications. Girls experience delay of around 2 years in puberty and getting their periods, those with milder types of sickle cell have less of a delay. There’s a higher risk of iron deficiency and occurrence of more painful crises during our period. We face a higher risk of having complications during pregnancy. I am yet to decide whether having children is a risk that I am willing to take, this also raises the task of finding a partner with a suitable gene structure that will ensure we don’t pass the SCD recessive gene to an innocent child.
“Sorry, I can’t make it today” I send the text. I can’t be bothered to pick a day to reschedule. Let’s first see how I feel by the end of the day. Sickle cell is very petty, it has spoiled many plans, sometimes even my own birthday.
I enjoy being alone, even in healing I know best how to go about it. When the pain goes down, eat a healthy and filling dish, watch something interesting and inspiring that will drift me off to the best healer of all, sleep. I love travel vlogs; underwater scenes showing marine life calm me down.
Survive- for the next few hours at least.
Thriving with Sickle cell Disease
I use creative visualization to imagine transforming myself into feeling healthy and making future plans of things I will do when I am well has always helped me to heal faster. Imagery is taught to professional athletes to help them speed up the healing process of sports injuries. Healing imagery is used in pain management and improves the healing process of diseases such as cancer.
The path of healing is one that requires lots of patience and self-care. As my body heals so does my mind, I train it. It is a journey of saying yes to myself and being guilt free about it. However much you want it to, time waits for no man. Seeing what other people are doing and achieving while my body forces me to have a time-out triggers FOMO, the most unproductive feeling of all. No use of dwelling on things I can’t do or change, is there? I take the time to learn a new skill or read. It is essential to remind myself that taking more time for myself does not mean that I am lazy or selfish.
A good life for me, as a woman living with sickle cell anemia has always called for practising conscious living. This means doing things because I want to, I’m passionate, inspired, and driven about it. This requires for me to stay on top of two guiding life principles, creating balance and knowing my limits, physically and mentally. It demands thinking rationally and positively all the time. It requires constantly working to let go of all the negativity both in my mind and around my life. I have had to learn how to identify the different external and internal voices, their impact and how to stay in charge of my life.
Knowing yourself isn’t easy and it has often left me stark naked with no option but to face sides of myself that are not pleasant to accept or recognize. Every journey starts with a step. Pacing myself by loving myself through each step has been a learning process. The wisdom to sit still and appreciate the importance of each step is a mental exercise not for the weak. It has been a journey of back and forth getting out of the pressure of comparison in a world which runs with competition as its core feature. For example, from birth we are tasked with the battle of the sexes which frankly none of us signed up for. As it is my life, every day I choose how I shall live it.