Reminiscing about the old me as I look to the future

Here’s a feeling that I’m certain other sickle cell disease patients relate to, and who knows, perhaps their carers do, too: It’s astounding how much sickle cell can change the body over time.

I know I say it often, but honestly, it feels like the disease has its own brain, distinct from the one in my body, and seeks to find ways to morph once it’s had the chance to study me. That must sound absolutely ludicrous to people without the illness or those without a detailed understanding of it. But it seems that some approach or treatment may work well for me for a while until sickle cell will think, “OK, so how can I destroy this comfort and make Shaniqua more annoyed?”

This interference has particularly affected my mobility and physical fitness. In fact, it feels like more than a lifetime ago when I was consistently able to be physically active.

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How active I was

Let me walk you through my former life. I started my mornings at 5:30 a.m. so I could be at the gym by 6 a.m. After an hour of weightlifting, I’d get dressed and otherwise ready there so I could go straight to work. I did this every working day.

On two or three evenings after work, I’d head to my local boxing gym for classes that ran for about 90 minutes. Because I was dedicated to boxing, I wanted to boost my endurance. That led me to start running with a friend a few times a week. I have such vivid memories of those runs, no matter the weather; neither sleet, nor snow, nor rain could stop us!

And there’s more: A neighbor of mine was a personal trainer, so I’d attend his boot camp on Saturday mornings. Try to picture me running drills, flipping tires, and pushing cars uphill! Those were just some of his go-to exercises.

In school, I always hated physical education, other than gymnastics and trampoline. I wasn’t a naturally sporty or fit person, not at all. I had to train myself in these activities, but once I found what I enjoyed, I was hooked!

Even when my health became a problem, I could at least walk for long periods of time, and for long distances. I used to masquerade in carnivals all across Europe, with routes that were several miles long. I could walk these routes while jumping, dancing, and having a good time.

As time went on, my condition changed, causing me to use mobility aids at the carnivals and spend much of my time sitting on the band trucks. Then the last three years all ended with me in intensive care. After the third instance, I gave up going entirely, and that was almost six years ago now. I can no longer walk such long distances, not even a fraction of them, without some adverse effect. Dancing or jumping while walking is a distant memory now.

Writing this column makes me almost teary-eyed because I can’t believe I’m the same person. If I weren’t living this reality myself, I wouldn’t believe the contrast. I couldn’t dream of doing it all now.

Sometimes I wonder if I’m to blame. Did I expedite my own sickle cell-induced deterioration by doing too much when I had no mobility issues? Did I fast-track sickle cell and its effects because it’s practically impossible to find wellness information that focuses on the disease? At least in my mind, it’s within the realm of possibility that I could’ve been damaging my body by unknowingly by doing too much (and by that, I mean trying to live an active lifestyle) when my circumstances were far from normal. Who knows.

How to move forward?

I remembered all of these concerns after a routine visit to my general practitioner last week.

There, I was told that I was 10 kg (about 22 pounds) over optimum weight for my height. I’d never been overweight before, so that was a difficult pill to swallow. Conversely, sickle cell can cause reduced nutrient absorption, among other things, so it’s not unusual to see sickle cell patients appear quite underweight (I was the same for quite some time) or stunted in growth.

Sickle cell disease and its by-products are more than enough of a hassle for me. I’m keen to keep myself from contracting any illnesses as a result of my lifestyle.

So I’m torn. Of course, I’d love to lose the weight so I can return to a healthy body mass index. But I’m scared. What if my physical decline was partly because of my earlier level of activity? How do I try to become more active again with all the physical limitations I now have? It’s difficult to find specialist information to tackle this subject.

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.