Many of us understand the auto-immunology causing conditions like Myasthenia Gravis, perhaps the pharmacological methods of treatment; we may even have knowledge of novel therapies that could change the face of the condition.
But often the real life impact of what it means to have an autoimmune disease is difficult to comprehend.
You might not appreciate our complete reliance on the functioning electrophysiology of the NMJ until you consider where this is compromised.
In an effort to enhance your understanding of what Myasthenia Gravis means in 'real terms', a sufferer of the condition has allowed us to publish an account of her personal experience.
What Myasthenia Gravis Means To Me
"Imagine: You wake up every morning with a pocket of change. Sometimes your pocket is full; sometimes it's not so full. Everything you do every day costs something. So say this morning you woke up with a quarter, 2 dimes, 2 nickels, and 3 pennies. Getting out of bed, downstairs, making coffee and breakfast and one dime is gone. Make breakfast for your son, get him dressed, go potty 3 times in 12 minutes, and put the dogs out. Dime number two: adios.
Your husband would like the dishes washed and table cleared off every day. There goes the quarter! Your son wants you to read to him. He wants 5 stories. Both nickels disappear. So here it is, not even noon, and all you have is mere pennies.
You have laundry to do, cleaning to do, other chores just straightening and organizing, you have a very active 4 year old and 3 dogs to take care of all day; you'd LIKE to do something for yourself, spend some time writing, you'd LOVE to take a shower, have lunch with a friend; you'd LOVE to make dinner...you'd really like to run to the store...but you can’t really even do ONE of these things, because your coins are almost gone, and so is your energy. Game over. But yet you have to somehow carry on for the rest of the day.
Imagine: You try to grab a can of pop (diet of course, since you are now diabetic from high doses of corticosteroids), it falls to the floor. You try to cut your food with a knife; you have to ask for help.
Imagine: You can't speak clearly enough for people to hear you on the phone and you have to quit your job that you LOVE.
Imagine: You are 40 years old and you have breathed through a hole in your neck for over 10 years now. That you need to do breathing treatments and change your trach and clean it twice a day and try to keep it from getting sore or infected. And sometimes it still gets sore or infected.
Imagine: Sometimes you can walk up the stairs, sometimes you can't. Sometimes you can take a shower by yourself, more often you can't.
Imagine: Your independence is all but gone. The thing you love most, to sing, to praise the Lord, is stripped away. You love to read, but can't read for long periods of time because you get double vision.
Imagine: You can't go outside when it's too hot, humid, or too cold. Because you have a trach, you can't do something you once loved: swim.
Imagine: Many of your friends don't know how to handle you, or think things "aren't that bad", so they don't hang around you anymore. All of the churches that you have tried to be a part of over the course of the last 10 years don’t know how to handle you, can’t seem to help you, and you are very alone.
Imagine: You either receive judgment or pity, neither of which you want.
Imagine: You have chronic pain from all over muscle weakness and atrophy.
Imagine: YOU know you are the same person in your brain and in your heart, but your body has completely betrayed you.
Imagine: You lie on the couch...oh, wait...can't do that; you can't breathe if you do.
Imagine: Some people think you're a hypochondriac. Even some “professionals.”
Imagine: You become depressed. You are such a social person, but you can almost never go anywhere independently. You are isolated."
If you can imagine all of these things, you will know what it's like to have Myasthenia Gravis. There is no cure.