Since my stroke 20 years ago, I’ve focused my energy on learning how to adapt, pace myself and live with chronic conditions and still keep going. And yet it’s the small, unexpected things that hit me the hardest.
Today was meant to be a day off. But instead, it became another reminder of how fragile “normal” can be.
For weeks, the small weight surgically inserted into my right eyelid has been getting more red and uncomfortable. It’s there to help my permanently open eye be able to close so I can blink and protect my corneal graft. It’s necessary for the health of my vision and lately I’ve found every blink to be been irritating.
I’m not new to eye problems, so at first I did what many of us with chronic conditions do which is to tolerate, wait and remind myself I’d dealt with worse.
Today, I went and saw the eye specialist about it for an appointment which lasted all of two minutes. I was told that the stitch holding the weight in place had become infected again. Which means another round of antibiotics, new drops four times a day and another appointment to attend in a weeks time to see if it has improved.
My “day off” turned into a few hundred dollars spent just to confirm what I already suspected; that something else has gone wrong.
This is the quiet frustration of living with chronic illness or long-term disability. It’s not always the big, dramatic crises that wear you down. It’s the interruptions and constant adjustments. An ordinary day can be derailed by something you didn’t plan for. Each small obstacle chips away at your energy and time. And each time it rattles your sense of control.
I’ve survived a stroke and had to rebuild parts of my life from the ground up. And still in moments like this, everything feels heavier and harder to cope with. The problem isn’t catastrophic but it means more appointments, prescriptions and a reminder that my body doesn’t always cooperate.
Living with chronic conditions means relearning resilience, over and over again. It means accepting that progress isn’t linear and giving yourself permission to feel frustrated even when you know you’ve been through worse.
Today wasn’t dramatic or life-threatening, but it was hard. And that alone deserves to be acknowledged.