I love this book by the way
When you have Myasthenia Gravis there are things you just do not always have control over and even when you are stable and have taken all your medications, when you are really tired and have and exacerbation (have over exerted yourself) your body will tell on you. For me the first thing that usually tells on me is my mouth or more specifically my speech.
I will be talking to people and my voice begins to sound nasally to me and when I mention others will swear they don’t notice it. But I know I know it’s coming. Then by the time they notice it it’s far too late I am about to sound like a drunken loon. My tongue speech slurs and then my tongue just gives up altogether along with the soft palate of my mouth and they just die all at once.
When they die they I just have to let them recover. There is nothing I can do. I cannot eat, drink, or anything. I can barely swallow until they recover. I have to just wait it out. Sometimes it comes back in a matter of minutes, sometimes it takes hours. If it takes longer than that…Well then I am usually in crisis and need to be admitted to the hospital for treatment.
The funny part is when it happens in the middle of a conversation and people are looking at me like I am having a stroke…Or when I explicitly warned them that I was getting nasal and they said they didn’t hear it then my speech slurs and becomes incomprehensible and it is uncomfortable for both us because now I am stuck trying to finish saying something important that I was trying to tell them should have been left for another time when I was stronger to talk about the subject or could have emailed to them.
People are just hard-headed. I mean i get phone calls from people who do not understand my disorder at all because they refuse to take the time to understand it, people in my own family and then look at me confused when I will not speak to them. No I will not talk to you if I have to keep explaining my disorder to you and you are not mentally disabled and you claim to want to be so highly esteemed in my life…NOPE.
The funniest thing is that I use the dragon technology thanks to my mom and her brilliance and it understands me when my speech becomes incomprehensible. However when I speak normal it has no idea who I am. So I had to create two profiles and train it twice. That was hilarious. I have two completely different speech patterns. They are truly that distinct! I recorded myself and I honestly sound like a person who is deaf and who has never really heard speech before perhaps a bit more stunted when my speech goes. I find it truly amazing. I do not like speaking to people when I get like this, expect for my doctor who I do not mind letting him and his school and students study me (I love letting others learn, especially if it helps find a cure).
My parents are great about it! My husband takes it in stride. He doesn’t miss a beat when my voice goes, he doesn’t even acknowledge it though I know he hears it. I just have to remind him when he hears it that it means I will have trouble eating certain things because he forgets that. He knows I usually need rest and now without even missing a beat he is usually trying to get me comfortable checking one me asking if I’m ok or if I need something because he sort of knows something is not right if I am slurring so badly. But all in all I usually just tell people I am ok, I am not drunk or intoxicated though sometimes I wish I were but my mouth has a mind of it’s own and may be!