Learning to Let the Good Days Roll With Sickle Cell Disease

How to practice enjoying the good days without fearing the bad ones

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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Having a condition like sickle cell disease can bring a lot of bad days. Crisis pain and extreme fatigue can be unbearable. Sometimes it feels like there are more bad days than good ones, as my collection of past traumas tends to resurface in my mind. However, I’ve recently had a stretch of good days, which have been pleasant and pain-free.

In this time, I’ve built a good routine. I eat a balanced diet every day, exercise at least twice a week, and do therapy once a week. I’m slowly building my confidence and planning to partake in new adventures. But in the back of my mind, I’m routinely asking myself, “How long will this last?”

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Excitement is building for these potential new adventures, but this feeling was often a precursor to crises as a child. I’d be excited to go on school trips and somehow end up in the hospital with a crisis — or worse. I lost my optimism because of these traumatic experiences. As a result, my learned behavior was not to get excited about future events.

My childhood felt riddled with bad days, and as I grew older, I wondered if all my future days would be bad ones. Every time I had a crisis or couldn’t follow through with plans, I would spiral into despair. This caused me to become passive about my future and what I could achieve. In that period, I didn’t allow myself to dream without considering the possibility of a crisis.

As an adult, I’ve begun to unlearn these behaviors and thoughts. The reality is that putting a cap on my excitement levels meant I couldn’t comprehend some emotions. For example, a natural precursor to a crisis for me is feeling stressed and overwhelmed. However, for a long time, I failed to recognize these feelings and pushed through, until I ended up with a crisis.

This revelation means I can now take more control over my life and actively ensure more good days. I can allow myself to feel excited and optimistic about the future. I shouldn’t ask myself how long the good days will last, but instead, focus on how I’m feeling. Learning to recognize my emotions will add to my repertoire of tools that help me maintain my health with sickle cell disease.

Let the good days roll.


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.

Comments

Eileen Davies avatar

Eileen Davies

Hello Dunstan, I quite agree with the uncertainties in the life of a sickle cell patient. Am a Sickle patient, and can relate.
We have to optimistic and look forward to a healthy and crisis free life.

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