Left to Avoid a Crisis, Right to Trigger One

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by Dunstan Nicol-Wilson |

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I love playing adventure games, especially those in which your decisions affect the story’s outcome. For example, if you choose to steal, you’re a villain, and if you choose to share your possessions, you start down the path toward becoming a hero. The choices may be small in the grand scheme of things, but added up, they carry great significance.

In dealing with sickle cell disease, I’ve realized I make many choices during the day that can negatively or positively affect how I feel. I’ve been intentional this year about looking after myself and avoiding painful crises. Every day I do a well-being check to see how I am feeling. I ask myself how tired I am or how much pain I’m in at the start of the day to manage my expectations for how much I can do that day.

In the past, I often normalized pain and fatigue; I would ignore these symptoms and try to continue with my day as usual. At times I’d become aware that I was doing too much, but I’d push through, believing I could rest afterward. Often, I never made it to the other side. A crisis would take over — like running out of health points before making it to the designated rest in a game.

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This year, I’ve realized that my body is the only environment I have control over. The external environment of life follows its own rules, and I shouldn’t always succumb to its demands. Prioritizing how I feel and making the right decisions in each moment allows me to reach that designated rest. However, in this period, I’ve had to be introspective.

I’ve been monitoring my good and bad days so I can make the best choices. On my good days, when I have the most health points, I try to exercise and do activities I enjoy. And on my bad days, when I have the least health points, I prioritize resting, keeping warm, and drinking plenty of fluids to get my points back up. This practice of checking in on myself each day has helped me avoid crises.

The last couple of weeks, life has been busy with birthdays, holiday planning, catching up with friends, and everyday tasks like work. Unfortunately, history has shown me that I can sometimes get carried away with the hustle and bustle, especially when I have multiple commitments. Saying no isn’t always an option, and during this period, my health points have fluctuated between high and low.

These fluctuations have consequences that can range from mild to severe crisis pain, or even a hospitalization. Therefore, learning to manage them has been a crucial part of my growth.

A few weekends ago, I got my “Bob the Builder” on and helped set up some outdoor furniture. The day started warm, but then a cold breeze developed. The breeze would be nice and refreshing for most, but it sent my alarm bells ringing. Drastic temperature changes can sometimes mean crisis, so I took a quick break and put on a windbreaker to help my body adjust to the temperature change.

Once I felt comfortable returning, I continued working. I drank plenty of fluids to ensure I was preventing other triggers, such as dehydration or cold exposure.

Later that day, I had to help my family prepare for a party, which was also taxing on my body. Because of the day’s earlier activities, I refrained from doing anything too strenuous.

At the end of the day, I took some paracetamol (acetaminophen) to ease the general aches of a busy day. This was significant because I usually refrain from taking any medication unless I’m having a crisis. However, the buildup of aches and pains was lowering my health points, and I needed to intervene.

This was a busy day for me, but I completed the mission and made it to my rest. I don’t always get it right; after all, I am human and can’t reset or restart at a crisis-free checkpoint. However, the consequences of getting it wrong can be so severe that I must diligently monitor my health points to ensure I make it through the day. Over time, I have gained lots of experience in tracking my points and will continue to do so on my quest to be crisis-free.


Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

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