[whirlwind123]

Sometimes I wonder when you explain yourself to others if they really get it.

I am now 59 years old., up until two years ago when I was Diagnosed with MG, I had alot of stamina., worked full time., would come home garden, cut grass, walk a couple of miles., my house was always spotless. I just went and went and went. Now., Ha................I work full time come home eat dinner and am done., I can no longer drive at night, with the lights and reflectors it is like driving looking thru a kaliedscope...so that ends that.
So, I get angry, because I can't do what I want when I want or at alll.............so sometimes when I tell friends or family.............I really thinkg THEY DO NOT GET IT.

[brandonc]

You can try to tell people what its like as much as you want but I even find it hard to even put it into words how im feeling or how to explain the feeling i get when the MG kicks in so i cant really expect people to really get it. but i dont think anyone without MG could ever really get it its kinda just one of those things

[shalynn]

I know how frustrating it is to try to get people to understand our illness. I think it's especially hard if we used to be very active people. I find myself trying to live the way I did in the past and I just can't do it anymore. Living like we aren't sick just makes people think there isn't anything wrong even more and it isn't good for us either. I'm really struggling with this now too.

Hang in there!

[Annie59]

Here is an email I am sending in the morning to the fella at the civivrights office that is handling my case with my landlord and not understanding I need more time due to my health. People just cant concieve what day to day is like. This case that this is talking about is my landlords who tried this summer to get me to move. My apartment isnt clean enough and a raft of other things are their dislikes of me. They payed dirty by putting in a way too small AC when my broke knowing full well heat is a risk factor for me.

"Mr xxxxxx, I appreciate that people who dont live what I live have little concept of what it is like to be this ill. Yesterday I spent the day from 11am on praying I was not gonna end up in the hosp. I was coming out both ends. Because I live alone I had to sit in pooed filled sweatpants until someone was able to get here to help me change and shower and clean up the mess from all that. It took 8 hours for someone to get here to do that.

The ability to get off a couple emails today is not an indication I am well enough to get thru the rest of what is needed to complete the civil complaint process. I did connect with my pulmonologist today and believe his office can get you the letter you need to allow me additional time. He is well aware of how much worse I have been this summer. "

[busybusy]

Originally Posted by shalynn

I know how frustrating it is to try to get people to understand our illness. I think it's especially hard if we used to be very active people. I find myself trying to live the way I did in the past and I just can't do it anymore. Living like we aren't sick just makes people think there isn't anything wrong even more and it isn't good for us either. I'm really struggling with this now too.

Hang in there!

I know exactly what everyone means. My employer still don't get it. I pretend there is nothing wrong because I hear "well, I am just as tired as you are." "you look fine to me." I have decided to go back to the way I was before I was diagnosed. It was easier even when on the inside I was in constant turmoil and crying without anyone seeing the tears. I wouldn't be surprised that holding everything in for so long is what actually brought this on since I have just been diagnosed. I decided I would do what I could and if I get tired I will just keep it to myself until I can rest. Just because you look fine on the outside doesn't mean the inside is doing just as well. I don't want to be sick and lay around all the time. I am afraid that will only make matters worse and I will lose the use of my muscles (atrophy). People are beginning to think I am lazy because I was very active. Oh well, can't change what people want to think nor how I feel, so I guess I will just have to keep on trucking or absolutely collaspe. busybusy

[shalynn]

Busybody, I do thinks it's all about finding a balance. Don't push yourself too much or else you could have a crises on your hands. I think sometimes we can look at ourselves in the mirror (at least on good days) and can even be tricked into thinking that we don't look that bad and that we should be able to do everything we did in the past.

We do have to make changes in our lives. I think that is what chronic illness has taught me. I'm starting to weed out the things I don't really need to do.

I don't know about anyone else, but I'm finding that Mestinon has made me feel so much better that I tend to over do it. I still need to rest more and think more about the things that I do.

Shalynn