A happy, confident man walks away from sad versions of himself.

Carpe Diem, Goals, and Lupus

Last updated: October 2022

I know that my days are numbered, and I have no idea how high that number goes. It’s not fun to think about, but it’s true. I only get so many days to live, and, quite frankly, I'm tired of spending them in my bed. Like many in the chronic illness community, I am sick and tired of being sick and tired.

There’s been a thought circling in my head for a while now. It seems like it’s been knocking on the door of my mind for years, but lately, it’s been louder, more urgent, and more profound. It's a feeling of "Carpe Diem," which means "seize the day." Living today is encouragement because we don’t know what tomorrow holds.

Cautionary hope with lupus

I do not intend to live for today because I will spend all my money or make other foolish decisions. Rather, I’m ready to start pushing myself a little harder regarding my physical capabilities and independence. I’ve been sick since 2015 and diagnosed with lupus in 2017, but I’ve been on a very helpful biologic for 1.5 years now, and I’m seeing glimpses of progress.

I have been chronically ill for so long that I’m starting to wonder if I’m underestimating myself. For example, there was a time that I truly could not change my bed sheets, but I’m not sure if that’s the case anymore. There are certainly days that I can’t change the sheets, but I no longer live every day of my life in a constant state of flaring (thanks to years of treatment).

I feel like a mouse in an experiment that hasn’t even looked to see if the cage door has been opened because they’re so used to it being closed. So I want to start pushing my boundaries just to see if it’s possible to do so. I'm afraid I'll fail or create a new health setback, but I don't want to live wondering what could have been if I'd only been brave enough to try.

A sad motivation

I feel like I’ve completely lost myself. I’ve lost myself to the physical burden of lupus and all my other chronic afflictions. I’ve lost myself within the demands of motherhood. I've lost myself in the stress of living through an intense and scary pandemic. Other things in my life have piled on to the point that I'm living in chronic burnout. And it’s affecting my ability to function – physically and mentally.

I feel like a shell of the person I used to be. I feel a sense of urgency to find myself again. I’m afraid that if I keep underestimating myself or losing parts of myself, I’ll never be able to climb out of the hole I’m in right now.

While I’ve been feeling this way for a long time, I recently suffered a loss that simultaneously broke my heart and intensified my desire to improve my life. I lost my mother, who was 60 years old. While she was quite unwell, it was still an unexpected and shocking death. I am devastated in more ways than I can put into words.

Yet, within my grief, I know that I need to get up and try to make the most out of my precious life.

No more excuses

There always seems to be something between me and what I want to accomplish. I experience pain, depression, busyness, fatigue, kids, scheduling conflicts, childcare issues, and more obstacles than I ever imagined. But if I take a hard look at myself and speak truthfully, there are many days that I am flat-out making excuses for not doing something.

Of course, there will be valid reasons why I may not be able to achieve something. Lupus has a way of getting in the way. But I don’t want to allow myself to use so many excuses anymore.

So, to change this aspect of my life, I’ve booked a trip to do something I’ve wanted to do for a long time. It’s a bit of a stretch, and there’s a good chance that my lupus will make it impossible. Therefore, I made sure everything was refundable until the day prior.

I’m fed up with my lupus holding me back, especially because I suspect that some small part of me is allowing lupus to hold me back more than it actually is – and that’s not how I want to live.

Carpe Diem, my friends. Do you have a goal that you’re trying to achieve after a long battle of feeling unwell?

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