Awareness on “Myasthenia Gravis”

disease

The author(Deepthi) of this article is suffering from “Myasthenia Gravis” is revealing the dark side of this rare disease.

Today I would like to share what is like to live in our shoes.. live as myasthenic.. after taking all due medications and receiving all required treatments to stay away from myasthenic crisis.

  • You have a lot of trouble or need assistance in getting up from a kneeling, squatting, or being seated.
  • You (or your arms) get unbelievably tired from just washing and/or drying your hair or touching your face.
  • You have trouble lifting your foot up to step onto a step, or even ANY bump or rise, even in the floor.
  • You find that you no longer have good balance and wobble all over the place like a air filled toy.
  • Even though you are no longer a child, you wake up with drool all over your pillow.
  • You want to put a note on your front door saying “My house is a mess because I don’t have the energy to clean or pick stuff up”.
  • You get tired just standing at the wash basin while brushing your teeth, while standing before the puja stand during Sandhya deepam, talking to family, etc.
  • Holding your arms up to read a book or the newspaper feels like you are trying to lift 100 kg weights.
  • You get worn out from the repeated sitting and standing you when you have to take a bath or when you are changing your bed sheets.
  • You have trouble rising to a standing position from a regular height chair.
  • Your cheeks/jaws get quickly worn out from talking OR chewing.
  • You have trouble raising your head from the reclining position when you are simply lying down in bed.
  • Even though you are NOT drugged or not have a big LADDU stuffed in your mouth you stagger stammer and speak as if u are an Oprah singer. You slur your words and put in so much efforts to speak that after a couple of minutes of talking, that the other person halts u saying..”ok ok enuf i understood” though you might not have even reached the point you wanted to convey.
  • You choke on your own saliva.
  • Food gets caught in your windpipe and you have to cough vigorously to get it out.
  • Washing your face, showing agarbathi to god, holding the AC remote for changing the temperature and other tasks that involve raising your arms in front of you are things that you find impossible, extremely difficult, or totally exhausting.
  • Laughing hard gets you so totally out of breath that you must rest to recover.
  • You trip over the tiniest things, even the DOORMAT because your feet don’t go where you “tell” them to.
  • You get out of breath and faint when having a “good” cry.
  • You run out of breath before you finish saying a sentence.
  • You have trouble getting a firm grip and end up dropping or spilling things.
  • You find that writing notes to people is easier (takes less energy) than TALKING.
  • Sunlight and bright lights bother you and sometimes increase your other symptoms.
  • Singing has become difficult or impossible.
  • You find yourself constantly clearing your throat.
  • You notice your heart beating rapidly after the slightest effort.
  • You find yourself sweating profusely without any apparent cause.
  • Water or other liquids (in my case even dahi) come out of your NOSE when you drink.
  • Any fitting clothing would make you feel like you are choking.
  • Any kind of temperature extremes makes you worse?? hot/cold food, hot/cold drinks, hot/cold rooms, hot/cold weather, hot/cold showers/baths, etc
  • After reading a page or two in a book or something on the phone, everything becomes blurry and then You see double! You try to adjust your eyes, one at a time (double vision), and someone nearby may even think that you are WINKING at them!!!!
  • Walking up stairs is next to impossible.
  • Your mouth or throat will not even let you YAWN when you are tired.
  • A change in weather leaves you weak and short of breath.
  • You sit down to eat and cannot manage to bite through your food to chew it.
  • Your neck wobbles around so much that you either use a neck brace or rest your head at the easiest spot available.
  • There are times when you have to use your hand on your chin to keep your mouth closed.
  • You have totally unexplained dizziness.
    You feel like your teeth have shifted — changing the way that you chew and making you sometimes BITE THE INSIDE OF YOUR MOUTH.
  • You need your food in a bowl placed on a big plate because the food is going to fall out of your mouth anyway.
  • Putting on socks or pajamas which require tying knots is a “Kodak” moment and leaves you sweating, frustrated, and totally wiped-out.
  • Fatigue so overwhelms you that even raising a spoon of food to your mouth or even turning sides while sleeping requires SEVERAL rest breaks.

So what do u say now?

About Deepthi

Leave a Reply

Your email address will not be published. Required fields are marked *