Why...Why...Why?
 

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!:ranting:

Whew...if fell better.

JJ

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

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

why? or how?
 

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

Hi JJ!
 

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

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.:hug:

Alice md- :doctor: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.:winky:

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:Clever: 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!:grouphug:

:grouphug: JJ :grouphug: What more can we do but give hugs :)

predictable unpredictibality.
 

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

I'm sorry, Alice, but no, you can't predict that it will be unpredictable. Autoimmune diseases don't always have a rhyme or reason. You can take really good care of yourself and, therefore, your MG and still have it "take you down."

Like Lizzie said, it is ultimately unpredictable. We've talked about this before. Thinking you can control a disease like this is dangerous. Help it along by sleeping well, eating well, etc., yes it's helpful but it doesn't mean that MG won't surprise you.

Like you said before in another post, Alice, you like to be honest with your patients. I am bluntly (probably too much so) honest with everyone I know. Having a good attitude towards MG every day is a daily, if not hourly, struggle.

JJ, Thanks for the info on the graphics. :Thanx: I wish I could spin like that.

Oh yeah Annie......:Excited: How about this??? Let's jump to it.! whooohooo!

On the predictability, yes and no. Ok for me, travel is my worst enemy so if I know I'm going to have to do that....I plan accordingly because I know it is going to pull the rug from under me for a few days. and it does!


But, this week, normal week, actually a very relaxed week but.....:eek:EEK it showed up big time this past Tuesday....no warning...even with mestinon...boom. :thud: Had to get off my feet for about 1.5 days. And it went just as quick as it came. I went to work today and worked from 8 til 3. I feel great....now.....who knows! Except God of course!:winky:

Yes, I can pace myself and I do every day. I listen to my body very closely. I am learning to look for signs of when to stop and getting better at it every day. And from reading all the posting data here on this whole forum, every one of us is unique and individualized for MG...that's just how it is....

control
 

Annie,

being honest is great, but doesn't have to be blunt.

in fact most people will be more ready to accept some unpleasant truth, if it is gently given to them.

as to control- I am the last person on this planet to think that there is any way to control this illness. I have long ago given up on that. (not that I didn't try).

what I meant was control over your life, despite no control over your illness, and that is achievable, at least to some extent.

alice