Being chronically ill is a lot of responsibility. I must make decisions consciously, as doing so may have repercussions, some of which may be serious. From going out with my friends, to eating or participating in sports, there isn’t a time I’m not solely responsible for my health. I’ll never again have the option to be blasé about life.
I envy people my age. Being in your twenties was always sold to me as a time to run wild and make mistakes – and for most other people it is. They can go out whenever they see fit, drink as much as they like, and eat whatever they can lay their hands on. It’s not so much that I envy the drunken nights or eating nutritionally empty foods, as much as I’m jealous that I no longer have those same freedoms.
I miss being able to text my best friend on a whim, asking if she’s keen on a dance, knowing that if I get a little bit too tipsy that night it doesn’t matter. It’s not that I now need to fully plan a night out, but at the same time I’m never fully at ease.
I can’t completely relax if I go out for a few drinks because I’m always mentally calculating the potassium content of the wine or beer I’ve just ordered. As I’m tearing up the dance floor, an admittedly laughable and entertaining fashion for bystanders, in the back of my mind is the constant reminder that my body will make me pay for this all day tomorrow. Alcohol has lowered my inhibitions enough for me to order a kebab, which I end up throwing out almost entirely uneaten. Even when I am intoxicated I know I shouldn’t be eating that kebab no matter how many cravings would be satisfied.
Consciously tired, but wholeheartedly happy due to physical activity
Ironically, at a time when lupus has rendered me more tired than ever, I’ve never felt such passion for recreational activities and am physically pushing myself harder than ever before.
I’ve always loved to surf, and netball was a new and unexpected passion I came across last year. But in the past three months I’ve also added personal training and mixed martial arts to the mix.
I’m in love with each individual activity for different reasons. Netball teaches me patience, while mixed martial arts makes me feel stronger and more powerful than I thought I ever could be. Personal training I do specifically to benefit my health, and surfing is both my greatest love and the only one that ensures the world makes sense.
I’ve found myself stuck in this situation where I know I don’t have the energy for all four, but I can’t feel whole without any of them. So, every week I make another conscious decision: To be unbelievably tired, yet wholeheartedly content and complete.
Too often I wish I didn’t have to be so mature, that I had the opportunity to act my age, and that not every decision I make had such weight and guilt behind it. Often I feel as is I was robbed of my young adulthood, and never got to fully appreciate what it is like to be carefree before it was far too late.
I find that I simultaneously love and hate lupus. It brought to light my greatest passions. It showed me exactly what I wanted and needed most out of life, waving it in my face, before cruelly taking it all away in one fell swoop.
I’m so sick of having to make every decision a conscious one, and at my weakest, I’m honestly just so sick and tired of being chronically sick and tired.
Note: Lupus 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 Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.