Hello all! I am in a BAAAAAAAD mood right now. I love my sis, but she drives me crazy! I went into the office today, but started to feel bad and decided to head home. Well, she (my sis) is going out of town this weekend and will be gone for 2 weeks and tells the other girl "Get used to my sisters hours - maybe 3 hours if you are lucky..."Needless to say, I was ticked! I told her that she was being totally unreasonable and hoped she'd never get MG. I love working! I love getting out of the house, but there are days when I am not strong enough. I will never, ever push myslef like b/4 or ignore my body. That is why I ended up in ICU for so long.......

Does this sound irrational? I mean she saw me when I was too weak to even breathe, yet gives me grief about my "lazy bone" disease like it's a joke!

Any suggestions?

Erin

Aw hon !!!! Big hugs for you first of all !!!

I understand your feelings.... My family, my friends, tend to think I exaggerate my illness (my several illnesses... ) and think I can decide if I want to go out of bed or not... they dont understand some days, I simply cant !!!

Try not to get mad, because, at the end, it is you who will be having a bad time with that bad mood.... You know, I guess people who arent sick, simply dont understand... and, I think they dont even realise what they are saying.... so.... yeah, I understadn you but I suggest you not to get mad....

Smile, smile !!!!

Only one suggestion Erin.

Tell her where to go and how to get there. Tell her to stay up and busy for 72 hours and try "not being lazy" because that's about the amount of uptime that MG will make your muscles and body feel like. I know because I've done 72 hour shifts at work before I developed MG (not in a loooong time though).

We understand here. Sadly those without it simply cannot truly understand.

Feel better

Erin, PLEASE don't let her upset you this much. You have been doing so good and you don't need all this stress sweetie. This is just the way she has always been and she's not going to change anytime soon. I know you love her and that's why it's so upsetting to you. I have an older sister who's a nurse no less, and she refuses to even acknowledge my MG. So I know the hurt and anger, but I had to let it go for the sake of my health. Maybe you could take a bubble bath and just relax. Then get some really good icecream, forget the diet, and watch a good movie or one of your favorite shows you have on dvd's. I'm sending you big hugs and will be keeping good thoughts.

Hugs,
Pat

Erin,
Sorry you have had a rough day with your sister. Hugs to you! I know that there are many people who see me and know the "old Simon" and say, wow you look so good....if they only knew how I was feeling. After I got MG, I have to look at people in a whole new way.....don't be judgemental of anyone....you really don't know what people are going thru. I have family members who don't understand also. It is tougher when they can't understand, as you would expect your family to be the ones who could understand. Hang in there and know that you have love from all of us and we understand!
Simon

please take a deep breath-vent,write and even talk to sis after to let her know agin and agin what you go through! icu-what would she have done? like everyone else i say don't waste any perfectly good energy on her! save it for the good things in your life-chocolate,junk food, or whatever brings you that good feeling!! remember you don't have to tell what goes on behind your closed doors!!

Hi Erin: I'm so sorry you had to go through that today, especially when you're making an effort to do something you love, working. Your sister definitely crossed the line. Unfortunately, people tend to have short memories and don't think about you being in the ICU and the consequences of a disease. Don't let this stop you from working as you can or from being balanced and not pushing yourself beyond MG limits.

Perhaps you could remind your sister that you want to work, but do struggle and can't afford to crash again, for your sake and your family's sake. Maybe you could tell her that you know she does the best she can and so do you.

Erin, I'm sorry this happened.

Erin, I am so sorry and yes I know what you are talking about. My answer was I moved hundreds of miles away. Sadly MG is not something people can "see" like a broken leg so they don't understand it but no worries WE understand you so rant with us as we feel your pain. {{{{BIG HUGS}}}}

Hello sweetheart!

THank you for being so understanding! My sis is not going to change. I have to face that fact. She resents my illness. No idea why. I raised her, but I have no idea what I did wrong - apart from spoiling her too much!

I think most of tend to "downplay" our symptoms - b/c we can't really explain them to others.

I'm just going to relax and take it ez.

Big hugs!
Erin