Finding energy for the things that matter in life with chronic fatigue

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by Alyssa Silva |

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You wouldn’t know this just by looking at me or the pictures I post on Instagram, but I’m hiding something.

I imagine myself and this secret I carry as though it were a light switch. When people are around or I’m out in public, I do my best to flip the switch off. But more often than not, my switch is on. And it keeps me out of commission, sometimes for days at a time. This switch I’m referring to is commonly known as chronic fatigue.

I’ve been living with chronic fatigue for a few years now. In the past, I used to drink copious amounts of coffee to mask my SMA symptoms. (I realize now how unhealthy this was.) But since getting my nasojejunal feeding tube and losing the strength to swallow well, my stomach has stayed empty. Drinking coffee on an empty stomach with a slew of gastrointestinal issues would not be in my best interest. Instead, I deal with the fatigue.

To dive into why I have chronic fatigue would require a much greater space than this column. It’s an ongoing conversation I have with my doctors, with a lot of dead ends. Regardless of why, I’ve accepted that I have this symptom.

The problem wasn’t about learning how to accept my chronic fatigue — it was learning how to live with it.

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A delicate balance

If my chronic fatigue had its way, I’d never leave my house. I wouldn’t work or see friends, explore new places, or celebrate momentous occasions. I’d be on my couch binge-watching “The Real Housewives” or reading a book. Many of my days are spent this way. With fatigue, I’m always tuning in to my body and honoring it when I need rest, even when I have to make the hard decision to exclude myself from plans.

I also know when to push myself and go somewhere. Striking a balance between needing rest because of my symptoms and staying somewhat active to keep my muscles from weakening is a delicate battle. But living with chronic fatigue, I’ve learned what really matters to me and how to prioritize it. Given how finite my energy is each day, I want to spend it wisely and save it for where it’s needed most.

First and foremost is my family. If I can muster up an ounce of energy, I push through the fatigue to spend time with the ones I love and cherish most.

Recently, my brother planned a beach day for us, but my body was feeling extra sluggish that morning. I thought of a million reasons why I should cancel, but I knew how much this mattered to him. So I went. Despite wanting to be home cuddled on the couch, I put my symptoms aside and made joyous memories with my family that I won’t ever forget. It was one of my favorite days of the summer.

The day after the beach was rough. My muscles felt like they were attached to 200-pound weights. My brain felt foggy, making it impossible for me to think straight. I had to use my BiPAP machine in the afternoon to give my lungs a rest. My switch turned on.

That’s the name of the game living with chronic fatigue. I enjoy my life because I know it’s what I deserve. But there’s a price to pay in the end. In spite of it all, I wouldn’t have changed a thing from the day before.

These symptoms are here to stay in my life with SMA. Some days, they’ll feel manageable, but on others, I’ll have to put my life on hold to rest. Of course, I wish it didn’t have to be this way. I wish my chronic fatigue didn’t have the authority to dictate my days. Nevertheless, I’ll continue to smile. I’ll continue to do what’s best for my body. And I’ll always choose my family and the things that matter most.

Note: SMA News Today 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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