I Don’t Want to Waste My Days Because of Sickle Cell Disease

The cooler and sometimes gloomier weather of autumn has begun to kick in here in London. However, I’m still daydreaming about the amazing summer I had. A few weeks ago, I was in a villa in Cyprus with most of my friends, where I had such a great time. This trip had warm weather, beaches, cocktails — and unfortunately, a sickle cell crisis.

This Cyprus trip was to celebrate a friend’s 30th birthday, and planning had been ongoing for months. I’m usually the organizer in my friend group and took over the planning. I scheduled many activities for Thursday to Sunday, including boat trips, beach clubs, and games. Then for Monday, I designated a rest day because, selfishly, I knew my body couldn’t keep up with a nonstop, weeklong schedule.

When we arrived in Cyprus on Thursday, I quickly realized how tired I was from the journey. It wasn’t a long flight, but I’d been busy beforehand, chaotically packing, running errands, and rushing to catch the flight. In addition, the lack of sleep and the warm weather in Cyprus took their toll on me. I was worried this would lead to a crisis, so I became hyperaware of possible triggers.

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The multiple decisions I make daily to avoid a crisis happen instinctually in relatively controlled environments. However, this new environment made it difficult to find the right balance. After all, it’s not every day that I’m celebrating with my friends on a boat or chilling by a beach. I didn’t have precise calculations on how far I could go without triggering a crisis.

By Saturday, I could feel my exhaustion growing. I knew I had to get enough rest; otherwise, the trip would end badly. I thought I’d be OK for the early start on Sunday if I had enough sleep. When Sunday morning came, I was abruptly awakened early because of cleaners. Sunday was the day I felt I had the highest chance of a crisis. It was also the primary event day to celebrate the birthday!

Sunday included a boat trip and an evening meal to celebrate the day. The trip took us around the island with stops to jump in the ocean, and almost everyone jumped in except for me. I wanted to join them, and my friends strongly encouraged me. However, I was concerned that the drastic temperature change could trigger a crisis.

At this point, I was overwhelmed. I wanted to make the right decisions for my body while living life to the fullest. The realization that this trip with the same people may not happen again weighed heavily on my heart. I didn’t want to sit in fear or regret missed experiences because of sickle cell disease. Eventually, I made peace with the fact that I was at least on the boat and wasn’t missing out on a lot.

Sunday afternoon after the boat trip, I napped before dinner. I did feel rested; while the night was long, I was having a great time bonding with everyone.

Monday morning came, and again I was awakened early. This time I had the familiar feeling of a crisis taking over. I was frustrated because my goal was to make it to Monday so I could rest. It was naive of me because sickle cell is unpredictable.

In hindsight, I realized many factors were out of my control, and it was impossible to predict and navigate everything. I could’ve had a more conservative approach and prioritized resting over socializing, but this trip was too significant for me to miss the main parts. Sickle cell has taken away a lot of experiences from me. On this trip, I did what I could to change that narrative for myself.

I was prepared with my medication and spent all of Monday and Tuesday in the confines of my room recovering. I didn’t miss out on much thanks to the itinerary, and I was able to join the final parts of the trip.

I can look back on it all positively because of the memories and moments I was able to create. I choose to live as fully as possible with my chronic condition. I refuse to not live my life.

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.