Summer Is Here, So No More Sickle Cell Crises, Right?

It’s summertime, my favorite season here in the U.K. Summer brings great music, good vibes, and no crises!

Sigh, I wish.

I love summer weather because one of my main triggers for a sickle cell crisis is the cold. Unfortunately, in the U.K., summer isn’t consistent in terms of the weather. In a week, we can have scorching temperatures, and then torrential rain with hail. As you can imagine, this is super frustrating for anyone, but when you have sickle cell disease, it’s even more so.

Extreme temperature changes can trigger a crisis as the body tries to adapt to weather changes. When it’s cold, veins constrict, and cells are deoxygenated for longer periods, making it more difficult for blood cells to pass. This increases the likelihood of a crisis.

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When it’s hot out, it’s easier to become dehydrated, which makes blood sticky and increases the likelihood of a crisis. Clearly, it’s all about striking a balance between hot and cold temperatures. In reality, it just isn’t that simple.

I have always struggled to manage sickle cell during sudden weather changes. In August 2018, I was hospitalized because I wasn’t wearing appropriate clothing for a change in the weather. It was hot that fateful day, so I wore shorts and left my jacket at home. Then, in the evening, the temperature dropped and it started to rain. I should have known — it was a feeling I knew all too well — that exposure to a temperature change would trigger a crisis.

This crisis happened in my back, and I was in the hospital for about a week, unable to walk for the first few days. The doctors said my C-reactive protein markers, which track infection, were high, so they had to treat the infection before I could leave. It was the first time in six years I had been hospitalized with a crisis, so it felt like I had lost the war against sickle cell disease. I blamed myself for forgetting what the pain was like, for being so irresponsible, and for forgetting my jacket.

It took me a long time to come to terms with the fact that it is OK to forget sometimes, and it is OK to enjoy the great weather. I had to actively work on forgiving myself. I had to teach myself that I hadn’t lost the war against sickle cell, I’d just lost a battle. You can’t win every battle, and I’d been winning for six years. I was still determined to win the war, and summer will always come around again to be enjoyed.

Now, to prevent being caught off guard by the weather, I’m very active on weather apps. It may sound like a weird thing to be active on, but being able to check the weather down to the hour helps me plan. Questions I ask include will I need a coat in the evening? Do I have enough water to stay hydrated? Can I schedule a nap or a rest?

We can’t always preempt a crisis, but being forward-thinking helps me act as preventively as possible. The more I plan, the more I prepare, and the more it becomes second nature. It’s a lifestyle, after all.

Summertime will always be my favorite season, and sickle cell isn’t going to rob me of that. I just need to be more cautious than most and not get too carried away — most of the time!

Am I the only one who gets a little carried away? Let me know if you feel the same in the comments below!

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