[Quandry]

I did some running around town today. First I dropped my Grandchildren off at school. Then I went to the library. After that I went to do some Christmas shopping at a book store, but that was all I could do. I felt the weakness come on strong and even though I needed to go to another store, I chose to go home and rest. Later in the afternoon I felt good enough to cook dinner, but after eating I started feeling really weak. My face felt really weird, I could hardly hold my head up, and when I tried to speak to my family, my words slurred. I couldn't seem to form the words right - I think my tongue was weak. I felt like I needed a neck brace to hold my head up, and my mouth was kind of hanging. My arms felt heavy, I shuffled my feet instead of picking them up, I kept feeling like my stomach wasn't digesting right - it felt like if I burped it would bring up acid, and my breathing was getting labored. I made some caffeinated tea and it helped and my breathing is much better right now. I need to realize that even though I'm taking Mestinon, that I shouldn't over-work myself. I tend to push myself too far and I don't really know my limitations. It seems that I don't know when to stop...

[southblues]

You gotta lay down and rest immediately when you get that way. It may take a couple of days of rest to get over it. Are you ok now?

[Anacrusis]

Originally Posted by Quandry

I tend to push myself too far and I don't really know my limitations. It seems that I don't know when to stop...

I remember once being determined to stand in a queue for an irresistable half price bargain at a clothes store.
There were only about 8 total in the line.
But by the time there were only two left in front of me I had already left it too late and knew it.
The trunk muscles were about to reach their myasthenic dissolving point in just a few seconds
It was either immediately laying down on the shop floor in front of all the customers, or sprawling myself stomach first over the nearest table of new arrivals and hope that no one in that store that saw me in such a ridiculous position actually knew who I was or would ever see me again.

Then I knew I was pushing my luck.

There have been times when I didn´t know like 3 years ago starting up gentle breast stroke swimming when I thought my M.E was better (max 1 length and max once a week) and the effects of that was a whole month of payback time very specifically in all the muscles that had been used for swimming (so, a lot of muscles and a lot of payback time!)

Since then I practiced and practiced knowing when to stop and ended up feeling like I went through quite a long period where´stopping/slowing down´went into automatic mode and I was doing so well that I didn´t have to think about it any more. But then when symptoms start spreading, change in intensity, or payback time becomes unpredictable it´s not that easy is it?! When you think what you´re up against you probably are doing a good job more often than you are doing a bad one.....


Good luck with doing even less even during times you can do more

I wonder if there is anyone who isn´t guilty of not knowing when to stop sometimes


Anacrusis

[alice md]

Alice's phases of knowing when to stop.

Phase I: You have no idea what is going on and suddenly finding yourself unable to walk/talk/move etc. with no warning that this is going to happen.

Phase II: you gradually realize that there is some vague connection between what you do and those unpredictable episodes.

Phase III: you learn to recognize early subtle warning signs and learn to stop on time, although you are not a pro and have a lot of times in which you do more than you should or stop when you could still do more.

Phase IV: It becomes second nature for you to stop on time, so you have only rare times in which you crash unpredictably, but you feel that you could do more.

Phase V: you become tired of always monitoring yourself and you push yourself more than you should, even though you know there is going to be a price. The price is many times unpredictable.

Phase VI: you can almost always predict the price you will pay for what you do. You choose what is important enough and what is not. You probably have the optimal control over this "crazy" illness.

[Quandry]

I just woke up around 9:30 Arizona time. My breathing is a lot better. My face or, I should say under my chin, still feels strange. I looked up the anatomy of the tongue and I think it's the geniohyoid or genioglossus part of the tongue as well as the tongue inside my mouth or maybe those two parts affect the tongue inside my mouth, I don't know. I'm having double vision too now, but I'm going to take it easy today. I have all over weakness too but not as bad as yesterday. I'm going to Southern California tomorrow to see family, so I better rest up. I'll be out of town for about a week and I'm usually drained every time I go.

[StephC]

Alice

Are you at phase vi and how did it take you to get to that point?

[AnnieB3]

Quandry, When weakness comes on that strongly, you're in trouble. Like Celeste said, it's time to lie down and stop moving. No talking either.

You need to call your neuro and say what happened. They might want to see you!

If it were me and I had that kind of sudden weakness, it would've been a 911 call. I'm not even exaggerating! With MG, you don't know how quickly or how badly it will get. And, not to scare you, but many "1st year MGers" go into a crisis because they either push too far, don't have enough medications or don't understand that this disease can knock you on your derriere!

Do you have a cell phone for your trip? Is someone going with you? Really, a trip after such extreme weakness is so not a good idea. I hope you'll be okay. Make sure you make your family aware of how badly you're doing, ok? Call your neuro before you go.

Alice, I think I'm in Phase X: Nope, not going to do that because I avoid hospitals like the plague.

Steph, Sometimes you only get to that point after you've had an MG crisis. It's so damn scary that there is NO WAY you'd ever want to relive it.

Anacrusis, Just don't kid yourself into thinking MG has some kind of predictable algorithm. It still surprises me.

Annie

[Quandry]

Annie, I've gone to ER in this town before and didn't get help, and then they shipped me off for a two hour ride in an ambulance to another place that didn't help - it's frustrating. I am, however, guilty of brushing off my symptoms a lot of times and maybe I should get over my fear of hospital inabilities now that I can at least ask them to do an arterial blood gas on me instead of checking my oxygen with one of those finger thingies - something I learned from this site.

I think I've had MG for at least ten years, but now I'm questioning whether I've had it even longer maybe even into childhood even though I've only recently been diagnosed. It's just getting worse now that I'm getting older and now that a doctor finally placed me on Mestinon I feel like I can do much more, and this is why I haven't yet adjusted to knowing my limitations while on Mestinon.

I have a cell phone and I'm traveling with my daughter and she or her husband will be driving. I can relax on the way there, and the rest of my family is aware of my condition. I rested all day today and now we'll be leaving on Saturday instead, so I'll get another day of rest.

[Anacrusis]

Originally Posted by AnnieB3

Anacrusis, Just don't kid yourself into thinking MG has some kind of predictable algorithm. It still surprises me.
Annie

I think that just because a disease is unpredictable doesn´t mean that we shouldn´t look for predictable patterns - just not be swept away by them
and think that we have reached final static answers. What has kept me absolutely sane during these last few years is finding those small pockets of predictability during unpredictable periods of unpredictable myasthenic weakness! I got to really observe how my body and brain respond accordingly over time to a fluctuating invader and this is what fascinates and surprises me most

Anacrusis

[AnnieB3]

I

think that just because a disease is unpredictable doesn´t mean that we shouldn´t look for predictable patterns . . .

Anacrusis, Do you honestly believe that's what I was saying? Of course not. But "newbies" like Quandry are the people I normally spew that out for. Why? Because thinking you can CONTROL MG by seeing patterns is deceptive. It takes time to figure out how your own specific type of MG will respond to activity, treatments and so many other things like heat and lack of sleep.

Being honest doesn't mean I'm not being supportive. Nor does it mean that when I give an opinion that I ignore everyone else's. I can only speak from my own experiences, just as you do.

Quandry, I'm glad you are as prepared as you can be. I hope you have a great trip and holiday.

Annie