Frustrated with Vision Problems
Do you also have vision problems? With all the stuff that goes on with myasthenia gravis (MG), one of the more frustrating things for me is the vision problems.
Personally, I experience my eyelids sagging (at times they are completely closed), double vision, cross-eyes, eyeball shaking, and light sensitivity. Additionally, there is lazy eye or wandering eyeball, and the blurriness that is always there.
The uncertainty is stressful
I don't know when they are going to happen or which ones of these I will experience. Will it be all of them at the same time? That uncertainty usually leads to stress - which sets off many other things associated with my myasthenia gravis.
When vision starts to go, I am not talking about the little flare-ups that last a few minutes. Those are just irritating, and for many of us, scary. But I'm talking about the vision problems settle in and stay for a day or 2 or more.
It usually takes a few hours for my brain to catch up and come to terms with it. So, during those few hours, everything tips upside down, and the world is spinning.
It's stressful knowing I cannot see well, but I'm still trying to function as if everything is perfect. Knowing that stress is a trigger for my MG, I have learned that I may as well just settle in, take a nap, watch TV, or listen to the TV or music.
It's a mind game
It is a whole different mind game. The brain fog that sets in is usually worse than normal brain fog because I cannot see. Seeing is connected to everything we do. We even "taste" food with our sight before we ever eat it.
We carry on conversations with people based on their facial expressions and hand gestures. Vision gives us our freedom to move around and come and go as we want to. It allows us to watch movies, plays, sports whatever it may be.
Just listening does not provide the same satisfaction or relaxation because I miss seeing it! With myasthenia gravis that sense of independence can all be taken away at the spur of the moment. It may last for hours, days, weeks, months, or years with no guarantee of when it will go away.
Solutions are possible
After living through this many times, as I am sure others can relate, here are some ideas that might be helpful. Learn a craft like how to knit while you can see, so when vision is off you can still do that craft. And yes, men knit also!
Keep your house organized so navigation through it is easy. Everything in its place, and a place for everything! Set up the kitchen so you can still cook with little problem. Everyone will be different in how this setup will look according to our own needs. Learning how to do voice to text on phones and computers can also help.
When the vision problems stay for long periods of time, they can be dealt with. It does take a lot of planning ahead of time and determination not to give up during times like these.
It does not mean it won't be frustrating each time that it comes back around. We have to retrace our steps to help us adjust to not being able to see; mentally, emotionally, and yes, physically.
Do you think there is enough awareness of myasthenia gravis?