It just occurred to me -- it must sometimes seem like I (perhaps we?) give conflicting "signals" to newbies.

Sometimes, I tell newbies that MG isn't ALL that bad.

Sometimes, I tell newbies that MG is MUCH more serious than they realize.

So.........MG is a "tightrope".......a fine line between being nonchalant and being anxiety-ridden over our condition.

When I say that MG isn't all that bad, I am trying, in part, to get a "newbie" to calm down. Anxiety does us NO FAVORS! But, as I have ALSO said in other threads, I had rather have MG than cancer, ALS, Alzheimers, and quite a few other conditions. So, in my opinion, compared to some other things, "not so bad".

When I say that MG is serious, I am trying, usually, to get a "newbie" to realize that MG CAN knock you clear off of your feet. Thanks to "modern medicine", the mortality rate has gone down, but intubation is still a distinct possibility.

It is hard -- we can't be too indifferent -- or too uptight. Like Goldilocks and the Three Bears -- we have to find the bed and the porridge that is JUST RIGHT!

I don't know -- is this making any sense?

Jana, I don't think it's just newbies that we tell these things to--I think it's to ourselves, too!

I'm just making it up as I go along.

Abby

*head spinning*

Abby, I think you may be RIGHT!!

And, I think I see how my friends and family get confused, sometimes -- on Monday I might still act like "Super Woman" (or Wonder Woman, as Mike calls his sister) MG isn't that bad -- and on Tuesday, even though I "look" the same, I act and complain that I'm falling apart -- MG is SERIOUS.

I think I need your last statement as my "siggy". "I'm just making it up as I go along."

Thank you for this thread.

Sometimes I feel like I am going crazy, as I contradict myself more than I'd like to. I have been feeling guilty about my inconsistancies.

The only thing that seems to work is to live in the moment. Every day is an adventure.

Here's my perspective. I was diagnosed just over a year ago, I'm still a relative newbie as far as I'm concerned.

I do not want to hear it isn't that bad. That is the most invalidating thing I have ever heard. When I was first diagnosed, I read up a little bit and cried my freaking eyes out. Then I read and heard, it's not that bad, you can live a full quality of life, etc. I'd already been sick with Chronic Lyme disease for 6 years so that certainly plays a part for me. I thought, this is my answer! I'm going to take this Mestinon and be all better.

Well I've gotten so much worse in the last year, and it's completely different symptoms than anything I have had from the Lyme. (Don't take this next line to heart or personally.) I'm damned ****** at anyone who has ever written in the literature or yesterday that this is not that bad. This freaking sucks. Personally my life is ruined. I'm bedridden, I can't even pick up my cat anymore or my dinner plate, I can't shower alone, I walk like a drunk, I'm in severe pain if I do decide to push myself, if I decide to walk on the wild side and say...oh...TALK a while, I can't breathe well for hours.

When I see anyone say it's not that bad, it could be ALS or Cancer, I want to scream. At least if I had ALS I would know what my end point might be and I could choose to live my life a certain way. This crap just goes on and on. Half of cancer is now curable. Let me tell you, I go to a Cancer Center for my IVIG tranfusions every other week and generally I am the sickest patient there. One of the Cancer Pt's WIVES knit ME a blanket she felt so bad for me. I look worse off than any of them!

I'm mad that I was misled. My neurologist told me straight up, you will always be sick. Your life will never be the same. You will not be able to do things you could do before. I thought to myself, okay. I can deal with the truth SO MUCH MORE than I can deal with false hope.

That's my two cents. Had I known this year was going to go like this, I would have BEEN PREPARED. But no. I spent last summer swimming and swimming and swimming because I was told EXERCISE AS MUCH AS YOU CAN every day by my doctor and I damn near killed myself every day. Vicodin every night. I'm no better, I'm worse. I can swim, lift 10 pound weights every day, and still my arms just get weaker and weaker.

You know the most embarrassing thing? When someone has a baby and tries to hand it to you and you have to think of how to get out of it despite your heart is aching to hold your friend's baby, because you are afraid you might drop it.

Tell it like it is. Please.

Unfortunately, the nature of the disease is that it is different for each of us and different day-to-day.

There are lots of us who're wheelchair bound (I've never been that bad personally, but I did spend almost 2 months in hosp with an exacerbation). There are lots of us who can go out and spend a week skiing with family and friends (Christmas week at Mt. Tremblant was a ton of fun for me, even though I had to limit my skiing to 1/2 days).

The nasty truth is, it is a horrible condition *and* it isn't too bad... all at the same time. We each have a certain number of "credits" to work with in the run of a day... the trick is to spend them wisely and realize when we're running low on them.

Tracy,

I do agree with you. I'm still upset with my neuro who tells me to take more medicine, that I can live a normal life...yeah, right.

While I am not bedridden right now, I was...and now I've learned to pace myself. I sit here at my desk and I rest in a bed a lot, often for a whole week before doing any activity, and most activities are out of the question. The "activities" I am talking about are going grocery shopping and going to doctor appointments, everything else other than sitting here on my computer is pretty much not possible.

And I'm dirt poor because I can't work. Yeah, right, it isn't that bad. I've been down the road of depression because my life is pretty much over, and I'm trying to figure out what to do with it, that is when I'm not wondering when my savings account will run out and I have to figure out where to live and how to eat. And when I start worrying about the future I crash and can't function...so I've learned to live in the moment, I'll deal with tomorrow when it comes, I don't know what else to do.

I do agree, hearing someone say "it's not that bad" when I am struggling is very invalidating. I've had a few days where I think to myself that I can deal with my condition, but those days are very few and I soon change my mind. I'm still waiting, after 2 years, for my neuro's words to come true, for me to be able to live some sort of normal life...but I can't see that happening if I sit here resting all the time, and I don't have enough energy to learn something new, or go out looking for a job I might be able to do.

It is bad, I wouldn't wish MG on anyone.

And I do think it is better to know that MG is serious and to take care of ourself, to try to relax as much as possible and avoid stress or whatever makes our symptoms worse. The hardest part for me is everyone around me thinking I need to just get up and do things.

I did the same as you...my neuro told me I could live a normal life so I kept trying to work and do regular things and I spiralled down until now I am so sensitive to everything that I have to limit every activity just to be able to walk around the house and take care of myself. I wonder know if I had rested initially if it would have helped...too late now.

I might be saying it isn't too bad if I had someone to take care of me when I need it...so I guess it is up to each of us to decide how bad it is. For me, it is bad, the worst thing that has ever happened to me...

Jana, I look at it as if were all snowflakes....no two are alike...MG is different for us all. Although it is the same disease....What works for me may not work for you or others. This is a good way to explain it I think.....Were Snowflakes

Yep, I'm definitely "flakey" -- LOL!!! Welcome to the group, MK!!

Yep "flakey" is the right word!! Sometimes it's better to laugh at yourself than cry. And I do a lot of that. Here it is 4am and I'm at the keyboard. This Pred will not let me sleep, what a nightmare.
Mike