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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I would argue that it is the the reality of living with a lifelong illness in which, the medical community rarely believes you. At this that is very much case here in the U.S.
I concur I also notice that when I go to the ER and pull out my phone and start rattling off symptoms with dates and times along with dr appt info the ER physicians tend to listen better. At least in my case.