Myasthenia Eyes and the Emotional Toll
The first symptom I experienced was the droopy eyelid. At first, I figured it was from the edema I had experienced for the previous couple of years getting worse. I wasn’t at all concerned, just aggravated my eyelids were so puffy.
As the minutes and hours passed, the right eyelid gradually drooped more and more. Finally, the eye closed. No matter how hard I tried I couldn’t open it unless by forcing it open with my fingers. The double vision came a little later in the afternoon.
Experiencing vision problems
Frustration wasn’t the right word to describe how I felt. Not only was my eye closed tight, but any vision I had was also blurred and/or double when I could get the eye open. I couldn’t read, watch TV, play games, or anything. How boring and scary!
Now I know there are many people going through medical issues much worse than mine every second of every day. I’m a very compassionate person, but when these “things” are happening to you, it’s a whole new ballgame! It’s like my nursing knowledge and objectivity flew out the window when I became the patient.
The emotional rollercoaster when your life changes so quickly and so drastically is indescribable. My other eye symptoms were just as problematic. The sunlight hurt my eyes. I generally covered both eyes with a cloth when I had to go out for a doctor's appointment. If I tried to open one, it would burn and tear up as if I was peeling an onion.
One iris was up and outward, the other lower and outward, causing double vision. Normally, both eyes are symmetric. Mine were not. After a few weeks of this, I still had the same issues and frustration, which was quickly turning to anger.
The impact on work
I was working full-time doing computer work for a healthcare company. Here I am with a job that depends on my eyes in order to perform, but I am constantly needing to take breaks and nap or just close my eyes to rest them. The blurred and double vision were still present and prominent.
Though we could make our own hours, I was still required to attend and sometimes manage meetings or training. This disease was hindering me, causing me to work extra hours on my own time to complete my work. This disease was quickly becoming an albatross for me.
Feeling uncomfortable in public
I didn’t go out in public much at this point. People can be so cruel, rude, or downright mean. Most probably don’t intend to be. But because I looked different and they stared, I felt I really looked grotesque. How do you overcome those feelings? How are you supposed to enjoy life ever again?
I felt so sorry for myself and cried a lot. The medication I was prescribed was not working. After 2 weeks, then 3, then 4, I still had no improvement! I needed something more, something that would help me open my eye and see again. At this point, I was willing to try about anything.
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?