The one constant with MS is there is NO CONSTANT!!! While we have some symptoms in common, no two people experience MS the same way. To that end, it drives me batty when I meet people who know someone (a cousin, wife's sister, friend of a friend, man down the street) who was diagnosed X years ago and "is just fine." "Don't worry about it, she doesn't feel anything." Or "God only gives you what you can handle." or "If you pray more it will be… read more
Why are you always tired? Then they add in well you are either getting too much sleep or not enough for your body. My other rage moment is when a coworker complains how tired or sick they are (cold type) to me when I can't see straight out of one eye, I'm falling or running into walls, and have absolutely no feeling in my hands. I'm working 4 days 12 hour shifts 7pm-7am and still trying to take care of my family. Yet I still come to work do my job and don't complain!!
People will say " stupid" things, because they don't know what else to say. In general when people know you have any type of illness, they get uncomtable and say weird stuff.
It's not so much what they say, as how they look at me. I get out of my car in a handicap zone (and admittedly some days I look "normal") and you can read their faces: What's wrong with YOU? YOU look okay to me. I feel like saying, hey! You take my MS and you can have my parking permit!!!!!
I have secondary progressive MS and I am still amazed when close friends think you can do what do did - like shop for hours, walk normally, everyday chores, etc. They have no clue about the meds, the shots, the mood swings, the insomnia, the bad dreams, the doctor appointments, the PT appts.
@ twinsmom98.. I had my hubby, daughter, son, and grandson have a day in my wheelchair. They had to fix dinner. And when they had finshed for the day, they were too tired to eat. :D I told them, "sit a while in my chair." NOW they know what it is like..Not FUN.....