Listening to my body when sickle cell disease has other plans

One of the most challenging things about living with sickle cell disease is that, despite the planning, preparation, and precautions we patients take, a crisis or a pain episode can still unexpectedly happen. Sometimes, even when we do everything right to look after ourselves, our bodies remind us that we simply can’t control everything.

I was recently in New York City spending time with family. It was a wonderful opportunity to explore, enjoy good food, unwind, and experience something different from my usual routine. We did a lot of walking, and although I thoroughly enjoyed myself, the physical demands caught up with me over the following days. I felt exhausted, so I made a conscious effort to rest, sleep longer, and give my body time to recover. I thought I was doing the right things. Yet a few days later, I woke up with pain in my arm.

Historically, sleeping in an awkward position has sometimes left me with numbness and pain that radiates throughout my arm, making it difficult to use. The sensation was familiar, but it was frustrating to experience it again, particularly after prioritizing recovery. I found myself thinking that I did everything I needed to do, so why am I still here?

Living with a chronic condition means acquiring skills at navigating uncertainty. I can’t say exactly what caused the pain, but rest and preparation don’t guarantee that I will avoid every physical consequence of exertion. Weather and routine changes may also affect how I feel, and sometimes recovery takes longer than expected.

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Valuing the simple things

Thankfully, the pain settled after a couple of days and didn’t develop into anything more serious. I was grateful that I could manage the situation at home rather than needing hospital care. While I’ve had to put some of my exercise plans on hold, I’ve still been able to maintain my walking routine, which has become an important part of looking after my cardiovascular health.

What has stayed with me most, however, is how much more I value the simple things when I’m recovering from pain. Being able to step outside, walk in the autumn sunshine, feel the wind on my skin, and enjoy nature without aches or discomfort feels like a privilege. These are common experiences that can easily become routine, but pain has a way of reminding me not to take them for granted.

This latest experience has also prompted me to reflect on how I balance the things I want to do with what my body needs.

I would’ve loved to spend more time in New York, but I packed a lot into a short period and didn’t sleep as much as I would’ve liked. Looking back, I recognize that I need to make space for rest alongside the experiences and people that bring me joy. As I get older, I find myself thinking about the future and what living with sickle cell disease might look like when I have a family of my own.

When pain arrives unexpectedly, I sometimes question how I will cope with those responsibilities while managing my health. But I remind myself that everyone experiences illness and difficult periods, even if sickle cell necessitates navigating some of those experiences differently. I will need to keep learning to ask for help, accept support, and give myself the same understanding I would offer someone else.

I feel thankful for the family and friends who continue to support me, and for the growing awareness I have of my own needs. I’m still learning that looking after myself isn’t simply about preventing pain. It’s also about accepting my limits, responding when my body needs attention, and allowing myself to recover without feeling guilty about what I can’t do.

There may not be a deep lesson in this experience, but it has reminded me of three things: Make time for the things that give you joy; listen to your body and give it the rest it needs; and be kind to yourself when, despite your best efforts, things don’t go as planned.

We can’t prevent every difficult day, but we can meet them with patience, gratitude, and a willingness to put our health first.

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.