A recent trip reminded me how unpredictable sickle cell can be

While I realize it’s impossible to plan for every eventuality, I often think about what I could’ve done better or differently to prevent a sickle cell pain crisis. Like the random bumps in life’s journey, a crisis can happen despite my best plans.

A month has passed since I went to Mexico to celebrate my 30th birthday. I had a wonderful time; I’d made it to one of the countries on my list, and it surpassed my expectations. Wherever I vacation, so long as there is sun, sea, and tasty food, I’m content. However, the truth is that my celebrations didn’t start as expected.

I thoroughly planned for this trip, utilizing my past experiences to avoid unnecessary mistakes. I had spreadsheets detailing the cost of things and what to pack. I scheduled activities with plenty of time to rest in between. I was giving myself accolades for how organized I was.

I arrived ahead of the actual celebrations to give my body time to adjust to the unfamiliar environment. Upon my arrival in Cancún, I felt good, but I frequently checked in with my mind and body. OK, I feel a little tired. Have I had enough water? Let me take it easy. How does my body feel now?

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My plans go awry

Despite all of this, at midnight on my second day there, I was awakened by a feeling that my mind erased until it happened again: the sense of my blood cells beginning to polymerize as they flowed through my veins. The unbearable pain was circulating throughout my body. I remember so clearly the onset of panic, anxiety, and overwhelming disappointment as the reality set in that I was having a crisis.

Every detail of my itinerary replayed in my mind as I began taking my medications. “Hopefully, the pain won’t be too bad so I can at least do the activities,” I thought. But when it settled in both of my legs, I succumbed to the negative thoughts that I wouldn’t be able to do anything on this trip.

I was overwhelmed with thoughts, emotions, and pain. I broke down into tears as I shared my pain score with a friend. I couldn’t deal with the disappointment; I felt helpless. My support network came to my rescue by calming me down, reminding me I still had time to recover. Their words put me at ease, even as the pain continued.

The crisis in my knees was terrible enough that I couldn’t walk and needed wheelchair assistance. Unfortunately, the hotel I was staying at wasn’t wheelchair-friendly, but thankfully, I had friends who could help. They hoisted my wheelchair up flights of stairs and did their best to ensure I was comfortable.

But this wasn’t how I’d envisioned my birthday celebrations. I was devastated.

In my mind, it was a race against time to get better so I could do everything on my itinerary. However, I had to adjust my thinking to ensure I did what was best for my body, and not just what I wanted to do. As the days went by, I got better and could partake in some of the things I’d planned. It was disappointing not to have done everything or be at 100%, but I’m thankful for what I could do.

My confidence about participating in potentially stressful or overwhelming events took a hit. Despite all my preparation, I couldn’t avoid a crisis.

But as time passes, my confidence and optimism are slowly returning. I can’t prepare for everything in life, especially with an unpredictable condition like sickle cell disease. The crisis was just a tiny part of what turned out to be a great birthday celebration.

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.