4 months after a sickle cell pain crisis, I’m moving past recovery

I’ve shared reflections from three days after my last sickle cell pain crisis, and then again a month later. Now, four months on, I find myself in a completely different place physically, mentally, and emotionally.

But can I say I’m still recovering? It doesn’t feel like it anymore. All the fear, hesitation, and maybe even cowardice I had around exercising or engaging in activities that support my well-being have faded. Mentally, I’m in a good space.

Monthly therapy sessions have helped me unpack some of what I went through during the crisis and talk through how it feels to get back into a routine. More importantly, they’ve helped me challenge myself to redefine what a healthy routine looks like. There are a lot of changes happening in my personal life, and therapy has been invaluable in managing them all.

In addition to being consistent with old routines, I’ve also taken a significant step: working with a personal trainer. I never thought I’d do this, and even avoided it for years because I assumed most trainers wouldn’t understand sickle cell disease. But this experience has been entirely different from what I’d expected.

Recommended Reading

July 10, 2023 Columns by Dunstan Nicol-Wilson

How 3 types of witnesses might handle seeing a pain crisis

After I explained my condition, I learned my trainer had worked with other people with sickle cell. That immediately shifted something in me. The workouts we do are tailored around finding the right intensity and buildup for me. We’ve done many exercises that I wouldn’t have thought to try on my own.

Because I have avascular necrosis in both knees, I’ve often avoided training my legs out of fear. However, doing light work, not just on my knees but across my entire body, has made an enormous difference. Physically, I feel better than I have in a long time.

My energy levels have returned to what they were before the crisis, and I’m feeling more confident. My drive, my capacity, and even my motivation are all coming back little by little. I’ve resumed mentoring again, as I finally feel that I can give to others without draining myself.

The change in seasons has also played a role. Summer has made me feel more empowered and social, and I’m slowly stepping out of the isolation I imposed on myself after the crisis. For a time, anything that required effort was an automatic “no,” but now I’m more open. I weigh the pros and cons. I’m relearning how to enjoy myself. I’m traveling more and living life to the fullest.

So no, it doesn’t feel like I’m recovering anymore. I’m not bracing for the next crisis or living in the last one’s shadow; I’m stepping out into the world. That isn’t possible for many sickle cell patients who have more frequent severe crises, so I acknowledge how fortunate I am to have had this period of recovery and reflection.

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.