The all day struggle of living with chronic dry eye.

A Day in the Life With Chronic Dry Eye

Waking up

When I first open my eyes in the morning, I know I need to do my Restasis drops right away, as they are a critical part of my dry eye care plan. I try to move my achy fingers because I need to put the drops in and then wait 10 minutes before I can put in my contacts.

Sometimes I wake up to my baby crying and jump out of bed, which ultimately results in skipping the Restasis. So I try to make sure I’m up and my eyes are ready before my baby and 3-year-old get up, but it’s tough.

Putting in my contacts is the next big event for my eyes. I switched to daily contacts about a year ago because my eyes were just too dry and inflamed to continue with monthly contacts (the daily ones can provide higher quality, plus you don’t have to worry about lingering residues that carry over to the next day). I have to carefully cut the contact lens packaging open with scissors because my hands often hurt in the morning.

The rest of the morning

Adapting to chronic dry eye

Next, I get ready for preschool drop-off. I avoid putting on makeup because either the makeup or the removal process will bother my eyes. Once my boys are loaded up in the car, I put on my super cool motorcycle glasses (okay, they aren’t cool to me) that suction to my face so I can keep my eyes open while driving.

After parking, I put my mask on for drop-off. This means my exhaled air is directed up toward my eyes and exacerbates my dry eye pretty badly. Thankfully, drop-off is brief.

I’m back home by 9:30 a.m., and my eyes are already dried out. I have 3 ways I tend to relieve the dryness: preservative-free eye drops, eye drops with preservatives, or manually rewetting my contacts. I prefer the last method; I take my contacts out, clean them thoroughly, and soak them with contact lens solution before putting them back in. It provides the most relief.

If I’m busy I tend to grab one of my eye drop bottles; right now I use either Systane or Biotrue. The Systane eye drops have preservatives, so I try to use them 3 times a day or less (less is better if there are preservatives) and the Biotrue ones are preservative-free so I can use them to my heart’s content, but they are a bit more expensive.

The afternoon

Frustrated with dryness and burning

Now it’s an afternoon nap and/or quiet time for my boys. I’ve done my best to take care of my eyes, but they are still burning too much to read or work. I get upset because often this is the only time I have to take care of things on the computer or phone, but I just can’t keep my eyes open due to the pain. So I close them for a bit to get some relief. And that’s how 90% of my accidental naps start.

I wake up with dried-out contacts, so I take a minute to manually rewet them, again.

It’s a nice day, so I take my kids outside in the afternoon. It’s so lovely, but anything floating around in the air bothers my eyes. I set a reminder on my phone to order some moisture chamber glasses in the hopes that I can make sitting outside more comfortable.

I come back in and need to clean the dust from my eyes, but I’m chasing after two strong boys so I quickly flush them out with my eye drops.

Managing dry eye and autoimmune pain

After a long morning and afternoon, my autoimmune illnesses have made my pain levels flare up. Should I take my prescription opioids? I have to balance this decision because those pain meds will cause extra dryness. Do I try lying on my heating pad instead? That also dries out my eyes. The pain is pretty unbearable, so I have to do something. I get frustrated when a tool that helps one medical condition worsens a different one.

I get the pain under control and want to watch a little TV before bed, but my eyes are too dry. I pick a show that is okay for just listening and, oops, another accidental nap (autoimmune fatigue contributes to this problem).

Ending my day

Every night before bed I try to refill my humidifiers. That’s how my nightly routine starts, and it ends with putting my Restasis drops in. They do tend to burn, so after about 10 minutes I might put some gel drops in for extra comfort.

As I try to fall asleep, I must face away from the air vent. It's regardless of whether it’s warm or cold air coming out, as any airflow will bother my eyes. It’s annoying, but I can’t rearrange my current bedroom to avoid it.

Then, if my eyes will allow me, I try to read. Although good sleep hygiene dictates no screen time before bed, I find it difficult to fall asleep without distracting my mind from my chronic pain. I can’t use headphones to listen to something, however, because I must be able to hear my kids at night. Eventually, I fall asleep, either with a brief read or sometimes a meditation with closed, tired eyes.

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