Sick, and Sick of Keeping Notes About Being Sick
I was unwell for a week in August. It began with deep lethargy. After about two days of that, the vomiting started.
Everything made me vomit: brushing my teeth, drinking water, nibbling food. I went into the hospital after about four days because I was sure I was experiencing an aplastic crisis. I wasn’t, but the fatigue returned earlier this month and two days later the vomiting started again, like clockwork.
I tried to remember what I had done/not done/taken/not taken before this feeling came on. I wrote everything down, which I didn’t do when the same thing had happened in August — I’d assumed then that it was a one-time occurrence.
I have not been able to figure out what I might have done to have brought this on, but I hope I will be able to if the feeling returns.
Journaling to prevent a crisis
This is how I live my life and what I am forced to do to live it as fully as I can. It must sound so prescriptive to be documenting my activities so I can know what I might have experienced before I got sick. But doing so helps me to identify what I can continue to do and what I should discontinue. For example, keeping a journal helped me to realize that playing mas at Carnival, no matter how much I enjoyed it, kept pushing me into crisis.
It is prescriptive, but it is also very annoying. I feel as though I cannot just live. Everything with my sickle cell disease needs to be thought out, considered, documented, remembered. That leaves me feeling very frustrated, especially when I have to stop doing something that I enjoy. I haven’t just stopped Carnival; I stopped going to the gym, boxing and dancing. All to prevent a crisis.
I don’t want to have to think about every decision I make, to record everything just to keep from falling ill. I hate having to be on guard all the time to prevent a crisis. It is a lot to have to do. I joke sometimes that I want to live to be 120, but all I really want is to live a long and fulfilling life.
But I have no choice but to continue monitoring and logging any fluctuation in my body. It is the reality of living with sickle cell disease.
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