MG and Our "Social" Lives
 

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



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)?

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

I also particularly liked what you said in another thread:

But yes, a few years ago:

I could not go out in the evenings at all. If I were to hold a drink then I´d 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 I´d had one too many. :Doh:

So I hibernated for a long time socially :paperbag:

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!

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.

:hug:

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

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.

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.

:grouphug:
Annie

:grouphug:
and from
SoftTalker

Lately, this forum has been my social life.

The perfect night out...
 

So the other night I congratulated myself on finally choosing a nice relaxing evening activity suitable to promote calm and rest, which would also keep muscle use to a minimum. I thought I was so clever having already beaten the unpredictable beast and being proactive to boot!

Well, less than 1 hour of being a passive observer at a pleasant 3 hour performance at a theater I started to wonder, how, from just sitting still for a long time and keeping muscle use to an absolute minimum do you suddenly get weakness transferred to different parts of the body? Double vision, restrictive breathing, choking on spit, and finally ptosis. And during the performance I suddenly remembered Annie´s thread about some see-saw effects that I haven´t read properly yet but nevertheless could not resist but try poking and pulling on my other eye whilst hopefully no one else was looking...

What surprised me most was that an evening sitting still at a theater elicited so many more symptoms than another evening sitting relatively still and talking to friends at a café.

Just when you think you have it all figured out.....

So perhaps next time during a social evening, I would instead think about using more muscles instead of less – I might just try something like dancing on a table instead! which would at least help take attention away from the effects of Mary Walker and her phenomenon for just a couple of minutes!

Seriously though, its a BIG deal. I know what it´s like to not be able to socialize at all or go out in the evenings for at least a year or so. And Celeste - you have a good point. This may be your only socializing opportunity but this is such a good place with such a colorful variety of great people with great social skills. My cup of coffee tastes just a good here as it does at my cafe :)