[SoftTalker]

Quote:
Originally Posted by AnnieB3
My MG has stunk because socializing uses way too many muscle groups all at once. And now I'm "trying" to rest up in order to carve pumpkins tomorrow. Yeah, we'll see.
Annie

Originally Posted by Anacrusis

Oh I SO needed to hear someone say this Žout loudŽ and at this time of year .....my muscles are so looking forward to January

Thanks!

Wow. Thanks Annie and Anacrusis.

(These are their statements from another thread).

This too, is how MG affects me.

Thanks to Annie and Anacrusis because their honesty - "affirmed", "relieved" and/or "validated" how I (often) feel.

Even with relatively stable MG - (knock on wood) - after many years of treatments and a couple of MG hospitalizations - I still encounter this "phenomenom" of MG becoming exacerbated due to "socializing" or sometimes, just simply watching and listening.

Thankfully, at least my family and a few of my friends and neighbors understand, (well, they tolerate me).

Sometimes this feels like this is one of the most difficult parts (for me) of the reality of MG....

Except for not being able to breathe, or to walk very far or to need to sit in a recliner to type.......) Hmmmm...... the breathing part TRUMPS everything. (been there, done that.....)

But - how about others with MG?

Does this sound to familar to you - in addition to Annie and Anacrusis and me (aka - SoftTalk)?

[Stellatum]

Socializing wears me out more than anything, even if I'm careful not to stand around. I don't know how much of my fatigue/partial paralysis afterwards is due to the emotional strain, and how much can be accounted for by just the physical strain itself. I'm rather shy, so talking to people makes me tense. Physically tensing your muscles, even just a bit, for a long time causes muscle-fatigue/partial paralysis. Similarly, my biggest trigger is going to church. I really haven't figured out why, exactly, but I suspect it has to do with sitting "at attention" for an hour.

Abby

[Anacrusis]

I also particularly liked what you said in another thread:

Originally Posted by SoftTalker

I never realized how many muscles are used for "every day life" - until MG came along.

But yes, a few years ago:

I could not go out in the evenings at all. If I were to hold a drink then IŽd have barely enough time to lift and take a sip with rapidly fatiguing arm muscles. Had I leaned over and used a long straw I most probably would have fallen into my drink because of weak trunk muscles.
And whilst no one really noticed I was having trouble taking one drink - everyone noticed that I sounded like IŽd had one too many.

So I hibernated for a long time socially

[christa]

Yes! Socializing is definitely one of the most difficult parts of MG! It's hard because I am naturally a social person, I love being around people (usually). Or did, I should say.


Now, I still enjoy the company of others but my body doesn't! I have really tried to figure out how being friendly can cause such instant fatigue, and I give up. But it does. So the number of times we have people over for dinner, the number of times I pick up friends for my kiddos, the number of times I go out to lunch with friends has pretty much come to a dribble. Now I participate in those things mostly only if my husband will be there, ie hold conversation when I suddenly can't, clean the house, prepare dinner, drive kiddos around.

I think the hardest part to swallow for me about MG (besides when I can't swallow, ha!) is how much our lives have changed in the last couple years. Dramatic difference.

But I am trying really hard to learn to love my new life. And see the value in it. It's not easy but I'm trying. For instance, my children are very very compassionate. I'm sure that's a by product of MG!

[SoftTalker]

Hmmmmmmmmmmm

It would be an interesting study:

An investigation to determine what percentage of people with MG were "very social types" (interested and liked/likes people) - before they came down with MG.

I agree with so much of what has already been posted.

In fact, I am posting today because I had an exhausting few hours with family members (young and more "mature") yesterday - and I am being a "recluse" for a few hours today.

[Anacrusis]

Originally Posted by SoftTalker

Hmmmmmmmmmmm
It would be an interesting study:
An investigation to determine what percentage of people with MG were "very social types" (interested and liked/likes people) - before they came down with MG.

I would also like to see how many were marathon runners or equivalent!!!!!!!!

[4-eyes]

I have to believe it's just the stress on the bodies/muscles that are involved with being social beings that causes the increased symptoms. I have never been a terribly social person, nor an athlete in any sense of the word. However, when things were at their worst, I was lousy at any social activity, physical challenge and even could have an immediate reaction to a relatively minor event like someone cutting me off in traffic, the doorbell ringing, etc.

Since having the high dose cytoxan, those things are pretty much a non-issue. I can socialize with ease, and even drink a couple of glasses of wine with no decrease in function. Physical activity still is an issue from long term deconditioning, but not in the way it was with bad MG. It's more like normal fatigue.

It's very frustrating, and very isolating. However, it indicates that MG is active within your body, and you may need to examine your treatment strategy if you desire to not have it impact you so much (and even that gives no guarantee that it won't happen.)

Hope this helps.

[AnnieB3]

You guys are too funny. Try sitting relaxed in a recliner. Consciously relax your jaw and all other muscles. Then lift your right arm only, keeping everything else relaxed. Still think it's stress causing us to be weaker? Geez, that sounds like something a neuro would say!!! Stop that.

SoftTalker, I WISH I could last a few hours. The time varies but it's usually only about an hour. I'm only on Mestinon though, so that makes a difference. I try to time my Mestinon so that I'm at my peak with it while socializing. It helps but I still end up with generalized weakness.

Would you guys think that someone with ocular MG only whose eyelids get weak while socializing is from being stressed out? Seriously, that is too funny.

Unlike most doctors, muscles work together. The more you do, the more muscles are involved. The more muscles involved, the weaker you get overall.

After my MG crisis, I had to have a followup doctor appt. to check my ECG, etc. After I got done getting ready, my left hand contorted. I thought I might be having a stroke. When I figured it out, I felt super stupid. I had been holding a mirror with my left hand to put my makeup on. Duh. That would not normally happen but my MG gas tank was low and couldn't deal with the nonstop holding of that mirror!

I LOVE socializing. I like to be alone too but when you can't do something very much anymore, it stinks. I "try" to make sure the environment is coolish, I'm sitting relaxed in a chair resting my chest wall muscles and I do not talk loudly. Can't actually. My family and friends are aware of all of this and are GREAT at accommodating for all of it. That really helps. The problem is that they're super funny and giggling just tanks me.


Annie

[SoftTalker]

Originally Posted by AnnieB3

SoftTalker, I WISH I could last a few hours. The time varies but it's usually only about an hour. I'm only on Mestinon though, so that makes a difference. I try to time my Mestinon so that I'm at my peak with it while socializing. It helps but I still end up with generalized weakness.

***Annie, I kind of - well, "embellished" the time I was with my family. Actually it was just short-of-two hours. And a long short-of-two hours. This included time to unload the little ones and to reload the little ones. I was relieved and sad at the same time when they decided to go. (I musta looked fairly MG-eee). I just didn't want to sound like a wimp to this group. But I am sure (well, I think) - many can relate.



I had been holding a mirror with my left hand to put my makeup on. Duh. That would not normally happen but my MG gas tank was low and couldn't deal with the nonstop holding of that mirror!

***LOL LOL Annie. Isn't it fun to look at our droopy face and eyes? Extra fun to look at a two-sided compact with one side being a magnified mirror! LOL - My Neighbor says I have "bed room eyes". Had to Google for that definition!



***Sigh.... I could sincerely - relate to your entire reply. Just too tired.

(I just popped back on-line - to look at Halloween pics of the little ones who were here yesterday).

Boy, finding this group of MG'ers was a great Halloween present for this MG'er.


Happy Halloween Annie - and others.

Be careful with the pumpkin faces and their non-conforming eyes.


(gotta watch those eyes you know)!!



Annie

and from
SoftTalker