Wednesday, April 25, 2012
This was shared by a dear friend of mine, Sandy. He gave me permission to share. This is what it is like to live in our shoes... You Might be an MGer if? 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 curb, step, or 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 child's 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 kitchen sink, in line at the store, talking to friends, etc. Holding your arms up to read a book or the newspaper feels like you are trying to lift 100 lb. weights. You get worn out from the repeated sitting and standing you do in a church service. 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 after the beautician or barber washes your hair OR when you are simply lying down in bed. Even though you have NOT been drinking, you stagger and weave like a DRUNK. You choke on your own saliva. Food gets caught in your windpipe and you have to cough vigorously to get it out. Washing windows, writing on a chalkboard, holding a steering wheel to drive, 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 CARPET, because your feet don't go where you "tell" them to. You can no longer whistle or blow up a balloon. You slur your words after a couple of minutes. You get out of breath when having a "good" cry. You run out of breath before you finish saying a sentence. You don't have enough breath to clear your nostrils when you blow your nose and this seems to lead to sinus infections. 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 come out of your NOSE when you drink. Chewing gum is next to impossible or WEARS you OUT. Turtlenecks and other clothing with collars 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. You see double after a few drinks……..and then realize they were NOT alcoholic!! You are trying to adjust your eyes, one at a time (double vision), and someone nearby thinks that you are WINKING at them!!!! Walking up stairs is next to impossible. After reading a page or two in a book or magazine, everything becomes blurry. 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 your hand or arm to support your chin OR wish that you had a neck brace. You use your hand on your chin to help you chew OR to keep your mouth closed. You have to call someone to help you get OFF of the toilet. 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 have had an "accident" that caused you to abandon a pair of underwear. You feel like it SHOULD be acceptable to eat from a trough because the food is going to fall out of your mouth anyway. You are on a FIRST NAME basis with the local EMTs and ER staff. Putting on socks, panty hose, or long johns is a "Kodak" moment and leaves you sweating, frustrated, and totally wiped-out. Dressing in "layers" makes you feel like you have put on a straight jacket. You've left blood and skin samples on sidewalks all over town. When you get "that look" on your face, family and friends get out of the path to the bathroom. Fatigue so overwhelms you that even putting up the dishes requires SEVERAL rest breaks. Mouthwash is no longer useful because you cannot GARGLE!!
Monday, April 9, 2012
Today I blog with a heavy heart. Two dear friends and fellow myasthenics passed away in the last week. It just hits home how serious this illness is. My dear friend Steven who rallied around all newly diagnosed patients to give them the nitty gritty no holds barred what to expect version of this illness and Julie, always ready with a laugh or a joke. She, like me, continued to live and work with this illness beyond what some would consider common sense. She just worked on Friday.
This is not an illness that slowly eats away and and then the doctors say, get your things in order, say goodbye. Yes, we know we are ill everyday but we also know people who go into remission, people who have MG in their 80's even 90's and we hold onto that.
I pray for that for all of my friends with this disease but this week reminded me what an infection, a swallow down the wrong tube, or a new medication can do to us. Steven and Julie lived life to the fullest with this disease and I dearly miss them both. I know they are free of the burden of this illness but Myasthenia robbed both of them of a goodbye.
Goodbye my friends ~ See you on the other side