[JCPA]

Most of you have had MG for a whole lot longer than I have.

Why is it that I can take my meds as directed...have many, many good days.....feel good....and then boom....I have not over exerted myself or did anything to cause it to come back....with a vengeance (spelling???). It just seems that when it rears it's ugly head......I am miserable.

Don't get me wrong, I am soooooooo glad I don't experience the breathing and swallowing problems.....but I can't move hardly and every muscle seems to hurt or feel weak.

I know this is what it's all about........all I know is MG STINKS! BIG TIME!

Whew...if fell better.

JJ

[AnnieB3]

JJ, I just want to know where you get the cool graphics!

No, it's so not fair that MG is so unpredictable. When I dare go out and run errands, I know I'll be bad the next day and even worse the next. But it's the times when it rips the rug out from underneath you when you haven't done much that's the most frustrating for me too.

You can't really compare your experience to others. Yeah, there are those who have maxed out the drugs and are still in bad shape. I'm grateful I'm not there either. But MG is still tough on most everyone who has it, especially because you can't predict what it will do.

I could say stuff like get enough sleep, stay away from stress, eat well, etc. but MG can still bite. It does help to keep the immune system happy, I really believe that. Even then, I have days where I can't get out of bed for hours after going out.

I guess if this is the one life we have, then we'd better try to enjoy it in spite of this stupid disease. Not so easy sometimes though.

Hang in there.

Annie

[redtail]

Hi JJ

Annie is so right, mg is so unpredictable and so unfair.

I've been diagnosed for about 7 years, and I'm on cellcept mestinon pred.
Sometimes I wake up and feel like I've been hit by a bus, and have no idea why.
Sometimes I can put it downto an infection, or maybe a stomach bug, or migrane or a busy weekend. But sometimes I have noooooo idea why , and it really really frustrates me and upsets me. I try and go with the flow,and think that its just the nature of the beast, but its still frustrating.

Its good you can come here and talk to us and vent and get things off your chest.
Hope things get a bit better for you.
tale care
Kate

[alice md]

Originally Posted by JCPA

Most of you have had MG for a whole lot longer than I have.

Why is it that I can take my meds as directed...have many, many good days.....feel good....and then boom....I have not over exerted myself or did anything to cause it to come back....with a vengeance (spelling???). It just seems that when it rears it's ugly head......I am miserable.

Don't get me wrong, I am soooooooo glad I don't experience the breathing and swallowing problems.....but I can't move hardly and every muscle seems to hurt or feel weak.

I know this is what it's all about........all I know is MG STINKS! BIG TIME!

Whew...if fell better.

JJ

JJ,

there are never good answers to "why" questions. so I always prefer to ask-how.

how can I utilize the relatively good days, in the best way?

how can I find the way to lead a reasonably productive life, despite my limitations?

how can I plan, knowing that every plan in this illness is subject to change, on the verge of the moment?

how can I make those hard times, and moments of depair as short as possible?

how can I find new hope, when a previous one was shattered? ...

and "how" questions almost always have an answer that you can find. it may take some innovative approaches, but it always leads to something practical that you can do. and give you some sense of control over what is going on.

alice

[erinhermes]

Hey sweetheart!

Annie and Redtail are so right! MG does bite! It is so hard to NOT overdo it on our good days, we never know when we are going to HAVE good days.......

I know exactly how you feel - it is so hard!

I've been told to only do 80% of what I can when I feel good - I never listen!

MG truly is a tricky little disease - the fact that we can't predict when we are going to feel well - so of course we are going to use the days to our best advantage......

I now it is hard, but please hang in there and know that you can always come here to vent - we know exactly how you feel!

Love,
Erin

[Pat 110]

Hey JJ,

We all understand how you're feeling. It's very frustrating when you do everything 'right' and then get blind sided. It's just so unpredictable sometimes. After 11 years, I pretty much know my triggers and planning is so important. Hang in there and know we are all here for you.

Hugs,
Pat

[JCPA]

Hi all

Pat - Thanks for the post. Since you have had MG for 11 years, I definitely know that you have experienced this. I'm new at this and I hope to learn more everyday to plan if at all possible.

Erin - Hey girl...I sent you a message today. I so appreciate you! I can always count on your encouraging words.

Alice md- I am soooooooooooo glad you are with us. Your post inspired me and yes.....the glass is half full.not empty! Next time I get down....I will start asking myself how and not why...I love it!

Kate - It's good to know you have days like this and I'm not alone. Thank you.

Annie - I get the cool graphics by clicking the "More" button under all those smiley faces....it brings up some funny ones.
I learn sooooooooooo much from your post...you have alot of wisdom to share here. I have been eating a whole lot more fruit & vegetables lately in hopes to keep me boosted up. I've been on a veggie stir fry kick here lately...oh well......it's healthy at least.


Super hug to you all!

[Joanmarie63]

JJ What more can we do but give hugs

[Maxwell'sMom]

I just wanted to pop in for a second and tell you, Myasthenia is like that, it doesn't always give a warning before it attacks.
I once heard an MG expert say, the only thing Predictible about Myasthenia Gravis, is it's unpredictibilty. And boy did he say a mouthful with that one.
Sorry you have Mg, it really does stink living with it.
Love Lizzie

[alice md]

Originally Posted by Maxwell'sMom

I just wanted to pop in for a second and tell you, Myasthenia is like that, it doesn't always give a warning before it attacks.
I once heard an MG expert say, the only thing Predictible about Myasthenia Gravis, is it's unpredictibilty. And boy did he say a mouthful with that one.
Sorry you have Mg, it really does stink living with it.
Love Lizzie

I fully agree with that, but then you can predict that it's going to be unpredictable, can't you? and that, in a way, gives you some control.

I know that what I say may sound a bit ridiculous, but I seriously mean it. I have learned to plan an alternative date, for every important meeting, and let everyone know that I will be there if my illness permits it.

I make commitments only after I have made a clear plan as to what happens if I am not there, and make sure that I am not the only one in charge.

I have two calenders, one with the actual dead-line and one with a much earlier dead-line that I give myself, and I let everyone involved know that if they want things done on time, they have to adhere to my dead-line and not the real one, because if not there is some risk invovled, that I will not be able to do it on that day.

and it works pretty well, most of the time.

(nothing in the word works all the time anyhow).

alice