Life Without TED: The Inactive Phase

Before I talk about my life now without thyroid eye disease (TED), let me share my memories of life with TED. There were years when TED took over my life. As the disease progressed, it became more emotionally and physically difficult to feel much enthusiasm about my days.

I became increasingly vigilant about how to live around the symptoms. As many of you in the active phase of TED know, this can be exhausting. I remember it all...the dry, achey, bloodshot eyes- the bulging eyes- the retracted eyelids- the double vision! I know your struggle and I am here to give you hope! I promise you...remission does come!

Remission of thyroid eye disease

After what felt like hopeless years of never missed appointments with active TED, my ophthalmologist said, "I don't need to see you for another year!"

He had done all the surgeries to correct the lingering damage to my eyes. Still, I was a little suspect of this awful disease and feeling like I needed ongoing appointments as a security blanket.

My doctor assured me that I was in remission and my eyes looked good. He also indulged me by saying, "You know where I am if you need me." Gradually I trusted that my past symptoms were not going to sneak up on me.

Now readers, I would like you to close your weary eyes and envision your life without TED.

The forgotten appointment

Well here I am 2 years later and I forgot to go to my last annual appointment. How could I do that!?

I berated myself when I realized my error until I gave it more thought. I forgot my appointment because I cannot remember the last time I saw the look of shock come over someone's face when they noticed my scary, bulging eyes. I had forgotten how people would avert their eyes and try to hide their shock.

I realized it had been so long since I felt the need to preempt face to face conversations with people by briefly explaining that although it looks like I am staring at them (with that surprised wide eyed stare), I am not and it is just this silly TED that I have. Now with my normal looking eyes, I no longer feel the need to put others and myself at ease.

Where did all my sunglasses go?

I forgot my annual appointment because I no longer buy sunglasses in bulk! I had sunglasses to protect my aching, throbbing eyes from the sun; another pair to protect my dry eyes from ceiling fans; another pair of wrap arounds for riding my bike; a pair to protect my eyes from the glare of the TV; and more pairs throughout the house, stashed in my purse and hidden in the glove compartment of the car. I could never be without them!

Now I currently have one pair of sunglasses and I am ok if I forget to grab them. The truth is, I am fine with my one pair of sunglasses sitting idly in the car waiting to be used.

Regained independence

I forgot my last appointment because I no longer opened my eyes in the morning to see two ceiling fans instead of one. Before, with the double vision, I remember hanging up my car keys because I felt like a menace on the road.

My bike spent a summer in the garage with nowhere to go. How could I drive or ride my bike when even walking felt like a "trip"?

Three seasons out of the year now, I ride my bike almost daily to make up for lost time. I have gone years now without seeing double and I don't take my independence for granted. But I sure do enjoy it.

Peace of mind

Forgetting my last annual appointment meant my life no longer revolves around TED and everything that comes with it.

All of the symptoms, the worry, the obsessive thinking, the prescriptions, the eyedrops, the pain and the surgeries are a thing of the past.

I never think about TED anymore except to remind myself what peace of mind I have without it.