With Sickle Cell Disease, Exercise Is a Double-edged Sword

The constant pandemic lockdowns and quarantines in the past two years caused me to put on a considerable amount of what I call “quarantine weight.” My fitness levels dropped below my standard, which was low to begin with.

Then, last year, I was diagnosed with avascular necrosis, which happens when bone tissue dies due to a lack of blood supply. That forced me to make some changes to prevent the long-term effects of the condition.

One activity I stumbled upon to help remedy the pain it caused was exercise. So, I started walking more frequently and taking swimming lessons. Thanks to these exercises, I noticed that the pain in my knees subsided considerably.

Yet while I’d been progressing at a good pace, unfortunately, I ended up pushing myself too hard. This caused a painful sickle cell crisis that set me back significantly. I had to question whether that amount of pain was worth it to continue exercising. The pain was so great, it took me to a place where I believed it was better just to remain inactive.

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Recovery from a painful sickle cell crisis has many levels, including the recovery from the actual pain itself, and the improvement back to a physical and mental baseline. This loop — from motivation that leads to action, and then destabilization from a sickle cell crisis — has been a constant in my life.

The starting and stopping creates a complicated relationship with exercise. Exercise is good for me, but if I push myself too much, it becomes bad for me. So, what’s the in-between?

I’ve been reflecting on how I can overcome this challenge and participate in activities that are beneficial for my body. Following are a few ideas I think will be beneficial overall.

Starting slowly

I like to challenge myself by doing things like 100 pushups a day or going to the gym five times a week. I tell myself that it’s the best way to obtain fast results. Unfortunately, these types of challenges usually end in disappointment. They aren’t designed for someone with sickle cell disease. Naively, I’ll try anyway.

After doing this repeatedly, I finally accepted the need to start slowly. Now, I slowly build up my tolerance for exercise and adjust to the demands of the situation.

Giving myself grace

I’m often too hard on myself when a sickle cell crisis sets me back. I blame myself for doing too much and get annoyed that I can’t push myself without consequences. Giving myself the grace to say this is just a reset and I’ll be back smarter and stronger keeps my mind at peace.

I must remember that when I feel like I’m pushing myself too hard, it’s OK to stop and rest.

Listening to my body

I struggle with knowing whether I’m being lazy or my body is genuinely tired. Determining the right time to push myself or hold back is difficult. I need to learn what my threshold is and when it’s time to rest. I need to plan when I will exercise next and then make sure to rest before doing so.

I have vowed to find the right balance in all of this, because exercise is good for me, just in the right amount.

Do you have tips on how to exercise with a chronic condition? Please share in the comments below. 

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.