When I Feel a Sickle Cell Crisis Happening, I Follow These 5 Steps
The word “crisis” is probably the most accurate term for what happens when pain kicks in from sickle cell disease. The dictionary definition of a crisis is “a time of intense difficulty or danger,” and that’s exactly what happens during a sickle cell crisis.
When I have one, it feels like the peaceful existence I once knew crumbles away. I tell myself that it’s my body’s way of saying I’ve done too much. However, this is the most excruciating message possible. Pain is inevitable in life, but the degree of pain from a crisis often feels out of this world.
I’m fortunate in a way that many of my crises happen at night when I’m about to fall sleep or just falling into a deep sleep. I wake up because I can feel a change in my body. I’m not sure if this is common with others who have sickle cell. As the pressure begins to build all over, I become overly sensitive to all of my body’s functions, such as breathing, digestion, and blood circulation. My extremities feel cold, and then the pain begins to slowly set in.
In my experience, the pain doesn’t peak right away, but rather after a short buildup and crescendo. During this window, I have an opportunity to try to prepare before the pain reaches its peak. I can’t quantify how long this window lasts, because it depends on how quickly I respond to the initial signals.
However, within this time frame, I move as quickly as possible, while I can, to achieve the following five steps if a crisis starts at home:
I take the strongest medication and the maximum dose as soon as possible. My doctor advised me that the earlier I take analgesics, the shorter the duration of a crisis. Once I’ve taken an initial dose, I take a mental note of the time and keep alternative medications close by my bedside. I have to hope the medication will kick in from this point on, and that the crescendo will be more of a whimper.
Crises are often brought on by dehydration, so drinking plenty of fluids is important. I try to drink twice as much water as I normally would. I then expect to expel it relatively quickly, so I usually keep an empty container around. Mobility is really limited when a crisis hits, so this is all to aid my comfortability.
Heat is effective at managing my pain at home. A hot water bottle is a perfect tool to help me manage the pain. While on my little journey to take my medication, I turn on the kettle so that I can fill it up for my trip back to bed. The heat soothes and provides comfort.
Really strong medication often makes me hungry, so snacks are required to help me get through the night, as well as to keep my spirits up! I always choose an anime to watch, which helps to distract me from the pain, because I usually can’t sleep the first night. When I reflect on this, it’s crazy that the opioid medications I take don’t put me to sleep. Drowsiness is one of their main side effects. That’s how painful a crisis is!
I have no control over how severe a crisis will be, even with the previous steps in place. Sometimes this is enough to contain them, and I’m in for a rough few days at home. Other times it simply isn’t enough. If the pain continues to be unbearable, even after medication, I must go to the hospital, although that’s my last resort.
Do you feel a crisis before it comes on? What do you do to try to mitigate it? Please share your thoughts in the comments below.
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