It's kind of funny, I have started and stopped this message three times, believing that everyone will think I am feeling sorry for myself, but here goes..

While serving many years in the military as an officer, we were expected to, "Suck It Up and Drive On!" That means toughen up and don't let anyone know there is anything wrong with you. Therefore, I feel strange complaining about a personal health and family issue.

I have always been a strong Type A personality, polio at age 12, recovered to the extent that I completed four decades of military service on active duty and in the Reserves, highly decorated war vet, retired civil servant, long-time professional musician, six years performing in a wonderful children's music show on educational television, public speaker, over twenty TV and radio commercials, extensive traveler..you get the picture. Luckily, I am married to a beautiful lady, three beautiful kids 19, 18 and 15 (yes, I'm an old dad). Now, with MG my life has changed and no one wants to accept that. I am told that I never want to do anything fun (like weekend road trips or camping), and especially not going with my wife to watch our daughter play in far-away fast-pitch softball tournaments that run Friday through Sunday, usually in the hottest part of the summer, that all I want to do is sit around and take it easy.

Since my retirement from the military and civil service I have worked fulltime as a Defense contractor. I have just about enough energy to go to work and get home every day, not leaving a whole lot for the family or our acreage.

MG, or at least my reaction to it, has put a tremendous strain on my family life to the point that I don't know how much longer my wife and youngest are going to want to be around me.

MG has affected the mood of everyone in the family. I have just left a message for the doc to call me so I can ask for a prescription of something that could possibly give me more energy and enhance my mood. I am taking Mestinon and Cell Cept.

I know a lot of others have it a lot worse than I so please don't consider this whining. I have been diagnosed since 2006 and rarely tell anyone there is anything going on health-wise.

i understand fully.i have one sisterinlaw who just thinks you're a bit overweight and not in shape. never mind i was walking 2 miles a day till march when dog died. when i stopped for a few days i felt 20 yrs younger. some friends[acquaintences really] who think it cannot happen to the strongest person in the world!!!! oh well-tough that's it's your closest loved ones. i'm like you never complain and when i just grumble they get into a panic.hope you have a BETTER W/E!!!!

Sounds like THEY need to suck it up and get used to it - no one wants this darn disease...........they'd be crazy!

I have been very blessed with my hubby so far, but there are days when he gets upset and I tell him that if he has any problems with it - there's the door!

We have a rare and misunderstood disease that wears us down...not our fault!

We have good/bad days - those are just the facts!

It's GREAT that you have found this site - you will be able to discuss things here that WE will understand - until you have MG you just don't get it!

Hang in there!
Erin

Dear Lizzie,

Thanks so much for sharing whats going on in your lives! Hugs for all of you.

Its appalling though, the way the staff are treating you Lizzie. If I were you, would probably give them a good piece of my mind too. And tell them how healthcare workers should be treating people. That was what I did to a nurse who tied me to my chair (while I was in the hospital when my symptoms first started), though I was complaining of a very bad headache. She refused to let me go back to bed, and I ended up sliding below all the ropes, slided to the floor and crawled back to my bed with the little strength I had. I barely made it though, started vomitting before I could reach my bed. Lol.

When other nurses found me beside the pile of vomit, they helped me back to my bed and started cleaning me, and when the same nurse who tied me to the chair came, she started commenting on how I stinked and how a young girl shouldn't be looking like that. I mustered whatever strength I could and simply started ranting at her, telling her of how nurses should be caring, and respect patients, and she wasn't someone who fitted that bill. I then told her that i would shower myself and do everything that a young girl can do, if I had the strength to. Who would want to be lying in bed the whole day long!! After I had ranted for like few mins, she started apologizing. Lol. I was quite appalled at her comments, just like I'm appalled at the comments the staff made to you Lizzie. Its tough when our family members are sick too. My dad has stage 4 cancer, so I can totally understand what you're going through. Will be keeping you in my prayers!

Yup, its tough when our loved ones cannot understand what we're going through, and there doesn't seem to be anyone who can listen to our complaints (belive everyone needs to let it out once in a while ). While my dad has something thats diagnosed and perceived as terminal, mine's something that seems to be psychological as its not yet diagnosed. So I get a lot of "Can't you do that on your own" kind of comments. Have learnt to turn a deaf ear to those though. Haha. It takes a bit of getting used to, and my friends also can't understand when I reschedule our appointments or do not turn up at gatherings.

But I've learnt to ignore all of those! Lol. Stick to those who support you, (this forum is a great place) and start talking to them. It helps to talk to someone. I don't talk to people much about my symptoms or what I feel about this, but now, I've found that it helps to try and communicate. For those who do not understand, I usually do my best to have a good talk with them, let them know of what I'm experiencing, and ask for their support. Thankfully so far, my loved ones have not yet given up on me (though sometimes they ramble), and i've found that it really helps to talk to them about what you're feeling. Cos if they don't even know, it'll be tougher to ask them to understand.

I've also found that it helps to focus on things you CAN do instead of the things you can't do. I keep thinking of things that I can do in my condition (I've to rely on a wheelchair most of the days), and it helps a lot!

"But you don't look sick..."

I found this one when I was first looking into MG and autoimmune disease:

http://www.butyoudontlooksick.com/na...poonTheory.pdf

My family denied for a long time that it was a big deal. "So your eye droops - so what". But as we all know when the eye is drooping so is our energy level and over all feeling of well being. I recently had a crisis and needed to to go the hospital. My own sister refused to take me because it was late at night and was probably "No big deal". A friend took me and I wound up in the ICU for 7 days.

The other thing that I hate and find very hurtful is the questions I get every time I get a flare up. "What did you do to bring this on?" "What are you stressed about?" If I were you I would try eating better and exercising more - then you wouldn't have these flare ups." BLAME BLAME BLAME

All leaves me feeling alone and misunderstood. This online community is a godsend.

Except that if you are not very careful with your "exercise more" you will have a really bad flare up and get sicker. I know what you mean though, my family was doing the same until I sent them some links to educate them on what was going on with me. Luckily I have lots of nurses in my family, they understood once they read about the problem and backed off the stupid advice

Connie, I can't even imagine being tied to a chair by a jerk of a nurse. You know , you're so vulnerable when you're so sick, and to have to literally protect yourself in the mist of it all, is awful beyond words!!!!!
You know, this particular person I dealt with was so nasty. It would be something if I was being bossy, or rude, or snotty, but I wasn't. I was so thrown by her attitude.

She did call back, and suggested something that made a lot of sense, ........Oh, wait, it was me who first suggested it to her!!!! I didn't say anything, I just said thank you, I'd appreciate that, and left it at that. Sooo annoying.

Love Lizzie

Yes yes yes! I totally agree with us being vulnerable when we're so sick.. I totally had no energy to bother with my looks during my crisis that time.. She was the nurse from hell. The other nurses were really sweet though. I love them! =)

I just can't believe how insensitive that nurse who talked to you was. Don't let her affect you! When people say negative comments about me when I'm on my wheelchair or they throw me a look of pity, I make sure I don't let them get to me! In fact, I think its pretty sad for them cos I'm probably in a better state of mind then they are. Haha.. I even had people "snatching" the lift from me! Though I'm right in front of the entrance, sometimes some people are just so rude they zoom past my wheelchair into the lift and I have to wait for the next one. I'm glad things are working out for you, do let us know how it goes, or if there's any things we can help with! Cheers to your great attitude!