Learning to Cope with Ptosis

I deal with ptosis (droopy eyelids) on a daily basis. Some days are not so bad - it just occurs every few hours when it's time to take another dose of Mestinon.

When my eyelids start sagging, it's 1 of my first telltale signs that it's either time for my next dose, I've overdone it, the sunlight is too bright, or I'm too hot. Things like this can bring on my ptosis in just a matter of seconds. In the whole scope of things, this is just kind of a minor inconvenience most of the time.

What causes my severe ptosis?

However, this blast of summer heat and humidity has me in a constant state of what I call "severe ptosis." Even while constantly being in the air conditioning, and very seldom leaving the house, my Mestinon only kind of helps for about 15 to 30 minutes. I can only have a dose every 3 hours while I'm awake, but within less than an hour, I'm back to being unable to lift my eyelids except for once in a while, for a couple seconds.

Heat and humidity can play havoc on everyone, but especially people with health conditions - and MG isn't my only major health issue. It also isn't the only health issue I have that can cause ptosis. Though, it is the only one that causes extreme ptosis that can be temporarily relieved from taking Mestinon or using ice on my eyelids.

How I coped before my diagnosis

Before getting a myasthenia gravis (MG) diagnosis, I lived with being unable to open up my eyelids at all for almost 3 years. During that time I learned how to do a lot of stuff while not being able to see. My choice was either to just sit in a chair and feel sorry for myself, or go about daily life and do what I could to be productive.

Every once in a great while, I give myself a few hours to feel sorry for myself. But typically, I'm not one for sitting around for that length of time feeling sorry for myself. Therefore, I accepted the challenge life threw at me and thrived! By the way, not being able to see, even under these circumstances, is a very hard challenge in life.

My grandsons were in shock

My grandsons, who live pretty close, called to see if they could come over for the afternoon. One you all might recognize as Q, from my article, "My Youngest Grandson's Opinion About My MG."

Well, Q and his older brother came into the house. I was standing at the island counter chopping vegetables. My eyelids were completely closed. I heard them pull out the stools on the other end of the counter and sit down like they always do. But neither of them said a word. I could feel them stare as they watched me just chopping vegetables like nothing was wrong.

So, I said to them, "Does this look like fun?" There was dead silence for a minute. When my oldest grandson said, "Grandma, is that like being blind?" So, I very calmly explained that in a way, but not technically, because my eyes still work and I just physically can't lift my eyelids.