Active and Inactive TED

There is no clear definite answer or moment to when I went from the active phase of thyroid eye disease (TED) to inactive phase. It happened over a series of months.

Active phase of thyroid eye disease

I spent a lot of the active phase in a surreal daze, unable to process what I was going through, when I was going through it. I put my head in the sand and tried my best to handle all the ups and downs that came along with the side effects and symptoms of this disease.

The best and worst memory I have from when I was in the active phase of TED was when my eyes would water. It was the best because it’s the most vivid in my mind to this day. And it was the worst because of how annoying it was.

It typically occurred in the morning, while having my morning tea. My eyes would suddenly start crying for no reason. Sometimes I could just pat them away, other times, I would end up wearing a hat and sunglasses for a few hours or admit defeat by going back to bed and waiting for the irritation to subside.

There was of course the double vision that would occur, especially when my eyes were tired. I wore a prism on my glasses for 2 years to correct the double vision. And when my eyes were no longer working with that, I learned it is best not to fight it. There were many nights where I would go to bed early and feeling frustrated because I could not read a book due to the line on the page splitting into two.

When I could take off the prism on my glasses because my double vision had subsided, that was the beginning of the end of the active phase. No longer needing lines on my glasses to offset my wonky vision was such a happy moment for me. It felt like a weight had been lifted off my shoulders.

Inactive phase of TED

In the time since, I have spent more time in the inactive phase than I did in the active phase. Which is wild to think about because when I was the active phase, time moved so slowly. I thought I would never see the other side of things. Since I have been in the inactive phase, time has moved so fast. Looking back, it is still overwhelming to think I have been through all of this.

It all feels like a bad dream that I am still trying to make sense of. How did all of that happen in such a pivotal time in my twenties? It left me standing still, unable to think about the future, barely living in the present. Now I am trying to live in the present as best I can. It takes a lot of self-awareness and work to unlearn bad habits.

The inactive phase of TED has been a lot of reckoning with what happened to me. How something happening beyond me led me down a path I could not have prepared for.

How do we process the elements of our lives we never see coming?