A grid of squares floats around closed eyes, showing steps of an eye care routine.

I Can't Live With My Eyes Closed

All I ever wanted to do was close my eyes. The active phase of thyroid eye disease (TED) was 3 years and if I did not want to miss out on 3 years of my life, I had to keep my eyes open. But the plea was constantly in the back of my mind..."if I could just close my eyes for a minute, I can get through this." It was too exhausting to figure out and explain to anyone or even myself, why I needed to close my eyes!

Closing my eyes to feel relief

Maybe it was the retracted eyelids causing extreme dryness; or maybe it was because of a simple jaunt from my car to the grocery store on a sunny day; or the inflammation of the muscles and tissue in the orbit of my eyes causing more pain; or how about from the swelling above and below my eyes causing discomfort; and then somedays it could be the headaches from dealing with all the TED symptoms!  An eye is open with the eyebrow raised.

There were times that the need to close my eyes felt like a demand to take me out of my days. The thought was always in the background of whatever I was doing. I could have been walking the track at the gym, or deep in a conversation with someone, or in a zoom meeting and the demand was there.

This or That

Do you feel like your TED caused you to miss out on things?

Needing a plan for relief from TED symptoms

Obviously, I could not live my days with my eyes closed and I truly always believed that it is best to enjoy the present moment. I wanted to be an active participant MOST days as opposed to being a spectator. To achieve this, I had to come up with an action plan. I remember it being difficult to figure out how I was going to co-live with this constant need to rest my eyes along with being an active participant in my life.  

Wearing dark sunglasses

It was tricky but simple really. My plan started with simply owning a pair of sunglasses with extra dark lenses that could completely hide any kind of view of my eyes. If I was going to be outside for a picnic I chose these glasses. Not only did they protect my eyes from the sun and wind but they also allowed me to shut my eyes for a quick break. I could take the opportunity to shut my eyes even during a conversation as we sat around a picnic table. I could keep up with the conversation and nobody could see that my eyes were closed.
A woman “smiles behind dark sunglasses.

I knew the white lights in department and grocery stores were bothersome to me. I could not shop with these sunglasses on, especially if I wanted to read labels. What I could do though, was find a place to sit and take a break. Once I put these sunglasses on, nobody knew my eyes were closed.

For those less challenging activities I still needed a plan. For example, in the evenings, simply watching a program on TV could be difficult. First thing I would do was close the curtains to block out the setting sun and then turn off the ceiling fan (I don't know why anyone in my household bothered to turn the ceiling fan on because I just as quickly turned it off). With all of these prior steps taken, it was still difficult to stay focused on the TV screen.

Trying blue light lenses

The second part of my plan was to wear my blue light protection glasses. This helped but not completely. To comfortably stay focused on any kind of screen for an hour or more was very difficult. My eyes needed to be soothed; they needed no motion or light reflection; they needed to be closed. 
A drop of liquid falls from a bottle of eye drops.
I had a plan for that too. I knew to take the opportunity during the commercials to use a generous amount of lubricating drops and close my eyes until I heard the movie again. For movies streamed with no commercials I knew to choose times to just close my eyes and listen to the dialogue. These plans helped me through the days but bedtime felt like such a relief!

Getting to close my eyes after a long day with TED

I knew that after I submerged my eyes with drops, I could grab my lavender infused mask and finally CLOSE MY EYES! While tucking myself in for the night, I felt comfort knowing my only plan now was to keep my eyes closed for hopefully 8 hours. My dreams could consist of sunny days, motorcycle rides, flying like a bird, but it did not matter because my eyes were closed. Even nightmares of wind storms or dozens of ceiling fans spinning on high speed did not matter because my eyes were blissfully closed.

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