How I build up my ‘credit’ during periods of good health
A columnist tries to compensate for moments missed during sickle cell crises
The past few months have brought me a stretch of good health. Because the cold can trigger a sickle cell crisis for me, I tend to have fewer issues during the summer. I’ve also been taking my vitamins and supplements, eating a healthy diet, doing what’s best for my body, and checking in with myself daily.
I did a mental check-in while cleaning the bathroom the other day, and it crossed my mind that I wouldn’t be able to clean if I were experiencing a crisis. I felt a sense of joy and gratitude at being able to help my household. Then I laughed, because only I could find joy in such a mundane task.
However, that two-second thought spiraled into something deeper when I brought it up in therapy. As I explored the idea, I realized I feel guilty when I can’t help out or participate in activities during a crisis. As a result, I have a strong desire to be present and do everything I can when I’m feeling well, as it might not be possible in the future.
For example, most people clean the bathroom or take out the trash without worrying that doing so may soon become impossible. But this fear doesn’t apply only to household chores; because of sickle cell, I know I’ll miss out on many special moments and important life events.
A balancing act
As my therapist and I unpacked this more, what stood out to me was the concept of credit and debt. When I’m unable to help or participate, I feel indebted to my loved ones. By doing good deeds and being present in times of good health, I feel like I’m building up my credit. This eases my sense of guilt during a crisis, because, in my mind, the credit I’ve built up helps me avoid going into too much debt.
However, it’s essential to recognize that this balancing act is delicate, and that overcompensating when I feel well could be detrimental to my overall health. Constantly trying to build up credit and ensure I don’t miss out on anything isn’t a healthy way to live.
Still, I can’t help but wonder, “How much longer can I put off certain activities? Should I travel the world now in case my knees give out in a few years?”
We all have moments when we’re reminded of the fragility of life, but it’s a frequent occurrence for those of us with sickle cell. I have to learn how to navigate the good times, including saying no to some activities and not overcompensating for time lost during crises.
How do you manage periods of good health with sickle cell? Please share in the comments.
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.
About the Author
Ka Murray
I have a few copies of children's books that I would like to gift . My 9 yr old wrote a message about living Sickle Cell and she speaks directly to her pain (telling pain what she thinks of it ) , years later the writing have transformed into a children's book . Free at no cost to child who would benefit from this heartwarming children's story book of determination. You can view the book on Amazon.com or Instagram @booksby.terri . The title is Sickle Cell pain fly away fly away.
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