The textbook definition of a crisis is a time of intense difficulty or danger. That's exactly what happens in a sickle cell crisis. When a crisis starts, it feels like the peaceful existence I once knew is crumbling away. My hopes and dreams of what tomorrow without pain would be like fade away. When a crisis sets in, I have no idea how long it will last or how painful it will be.
I tell myself this is my body's way of saying I've done too much or something isn't right internally. However, this is the most painfully excruciating message my body could send. Pain is inevitable in life, but the degree of pain from a crisis often feels otherworldly. A crisis causes a complete disruption to my body's normal functioning.
When I'm about to have a crisis, I can feel the change in my body. There’s about a 10-minute window before I am entirely incapacitated in pain. It begins with an over-sensitivity to all the functions in my body; pressure begins to build all over. My extremities feel cold, and then the pain starts to set in slowly. If I am fortunate enough to be at home when it begins, I have this small window to gather what I need and prepare for what is to come.
My 5 Steps When a Crisis Starts at Home
1. Medication
I take the most potent medication and maximum dose as soon as possible. My care team advised me that the sooner I take my medicines once a crisis has begun, the shorter the duration of the crisis. My most extended hospital admissions have always been because I didn't have the proper medication with me when the crisis began.
Once I've taken the first dose, I make a mental note of the time and keep alternatives close by my bedside. Once I have taken the medication, it's a waiting game to see if it's effective. This moment can cause natural anxiety due to fear of the unknown. In this period, I'm hanging on to hope that the rising crescendo of pain will end up being more of a whimper.
2. Hydration
Dehydration can trigger crises, so drinking plenty of fluids is essential. I drink twice as much water as I would generally during a crisis. When I was younger, I wouldn't drink a lot because it would mean moving from bed to go to the toilet. The toilet was only a few feet away, but that journey while in crisis was hell. I would break out in sweat because of the pain my body was in. However, not drinking water is counterproductive to feeling better, so I get an empty container during my 10-minute window to prepare before the onset of a crisis, to collect what I expel. Mobility is deficient when a crisis hits, so this is all to aid my comfort.
3. Heat
Heat is adequate when finding alternative ways to alleviate the pain in addition to medication. A hot water bottle is a perfect tool to help me manage the pain. On my journey to get my medication, I turn on the kettle to fill it up for my return to bed. The heat soothes and provides comfort, which settles me a little bit. Heat can also be dangerous because the pain of a crisis is greater than that from heat. I've burnt myself a couple of times because I didn't feel the heat.
4. Favorite things
Potent opioids can often make me hungry, so snacks are required to help me get through the night. As well as keeping my spirits up! On the first night of a crisis, I don't usually sleep because of the pain. I always choose a TV show I didn't have the time to watch to help distract me from the pain. When I reflect on this, it's crazy to believe that the medications I take don't put me to sleep. Many of these medications induce drowsiness, but the pain is so intense it counteracts this!
5. Decision
I have no control over how severe the crisis will be, even with the previous steps in place. Sometimes, this is enough, and I'll be in for a rough few days at home. With support from my family, I usually make a full recovery. However, other times, these steps are not enough or I don't have access to my medication. If the pain continues to be unbearable even after medication, I must decide to go to the hospital.
Going to the hospital is always my last resort.
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