Patient Blogs | Sickle Cell Disease
How I Exercise with Sickle Cell Disease
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Exercise has been a double-edged sword for me with sickle cell disease. On the one hand, it's great because of the vast benefits, such as better sleep, mobility, and overall health. But on the other hand, too much exercise or exertion on the body can trigger a crisis. Finding the balance is tricky because I like to push myself; however, going too far can have devastating consequences.

During the pandemic, it was challenging to keep up with exercising. I no longer had a daily walk to work and led a more sedentary life working from home. I never substituted the walk, which meant I put on a lot of weight and had frequent aches and pains. I was then diagnosed with avascular necrosis in my knees. After doing some research, I realized exercise was one method of alleviating these symptoms.

The weight gain and avascular necrosis diagnosis pushed me back to exercising again. I opted to take swimming lessons, as I saw that as an effective way to build muscle around my knees while also getting the exercise I needed. From these exercises, I saw a marked improvement in the pain I felt in my knees. 

Unfortunately, the scales tipped when I pushed myself too hard during one of my lessons. As a result, I ended up with a crisis. I fell out of routine exercises again while I began the recovery. This crisis set me back mentally, as I questioned whether training was worth the crisis pain. If I were inactive, at least I could manage the aches and pains, but I wouldn't have to deal with an exercise-induced crisis.

Recovery from a crisis involves several levels: The initial recovery from the pain. Once the pain has subsided, it’s getting yourself back physically to where you were before the crisis. Then finally, or in combination, is mental recovery. In this stage, you’re regaining your confidence to return to your routine. Once you're back, you must find the motivation again to re-commence exercise. 

This start-stop loop creates a complicated relationship with exercising. Exercise is good for me, yet if I push myself, it isn't good for me. So how do I find the in-between? Over the past year, the solution has been understanding my body and recognizing what pushing my limits looks like to me. 

Build myself up slowly.

Exercise is a slow build-up to get where I need or want to be. On my first day, I shouldn't be doing 100 pushups a day or going to the gym five times a week. I have to start with the basics, once a week for 40 minutes, then slowly build up the load to three times a week, and so on. It's challenging because sometimes I want to fast-forward to the end goal. However, nothing good comes from rushing the process, and my body needs more time. 

Ignore the fear.

I can’t live in fear of the next time a crisis can happen. Exercise isn't the only way I could get a crisis; the benefits outweigh the negatives. With exercise, I can build a body strong enough to cope with the demands of existing in this world with a chronic condition. I must remember that when I feel like I'm pushing myself too much, it's OK to stop and rest. 

Listen to my body. 

I need help knowing whether I'm lazy or my body is genuinely tired. Distinguishing when the right time is to push or hold back is difficult. This difficulty stems from the consequences of going too far. However, I must learn my threshold and when to rest. I plan the next day. I will exercise and make sure I rest beforehand. I am steadily building myself up to a point where I can go longer and more frequently.

I continue striving to find a good balance, because exercise is good for me and helps improve my overall health. 


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Photo Credit: Goads Agency / E+ via Getty Images

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Dunstan Nicol-Wilson

Dunstan Nicol-Wilson

Diagnosed since 1993

Dunstan Nicol-Wilson is from London, England, and was diagnosed with the “invisible disorder” sickle cell anemia from birth. Nicol-Wilson has a BSc in bioscience and an MSc in public health (global health). He has spent his career in research governance and is now a clinical project manager. In addition, he is also a freelance columnist and mentor. Nicol-Wilson began advocating for sickle cell anemia in 2018 through various talks, columns, and community outreach. He hopes his advocacy will raise awareness for sickle cell and blood donation, encouraging others to share their stories. Outside of work and advocacy, he loves to travel, try new experiences, and spend time with friends and family. He can be contacted via Instagram and LinkedIn.

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