This is a golden question:)

With time we learn some of this but not sure it's that predictable. Hasnt been for me anyway. Look for triggers that cause you to have increased symptoms and avoid those triggers the best you can.

Even so, things happen with little warning sometimes.

Not helpful,sorry.

We all have different limitations, and you will learn what yours are. Today, one of my coworkers asked me to walk two city blocks with her. I told her that I couldn't walk that far. She understood. I can not scrub the bath tub either or that will put me down for the whole next day. I have to take a lot of rest breaks on the week end when I am at the house. I have a chair by my dresser so I can sit while i get ready for the day. Also, I sit and fold towels and wash clothes. If I can sit and do a job, then I do. I have learned that sitting is better than standing, and standing is better than walking. I have also learned that sometimes, I have to be brave and do something that I haven't done for while. MG takes a lot of courage! Best wishes to you!

Hi, I find if I overdo one day, the next day I have to rest most of the day. I am learning to pick and choose what I can do!! Spread things out over several days and rest in between. Try to do things the easiest way possible. As Barbel said sit if you can. I find bending over to do anything is hard, so if I can do it sitting down I do! If I find my breathing getting bad I stop and rest for a while! As you go alone you will figure some of this out yourself. Good Luck and welcome to our group!!

I had six great days. until yesterday. looking back... the fog came over, the heavy chest feeling, spaciness. But what put me over the edge, I think, was the heat.
I've learned that this isn't a straight up recovery. more like multiple plateau steps that have lots of ups and downs on the step.
don't you just want to be done with this?
Be well,

Not weird at all
The name of our game.
Management.....and then it changes. I will get all excited for company...do great...get all ready...then when they get here I am so tired.
We learn how to pace ourselves ....sometimes...then we improve and the questions change.
All part of it.
But
If you are having trouble breathing I will be on your back about getting more or better treatment by specialist. I ended up in intensive care on respirator...so my role(I have developed ha) is to bug newbies until they get proper help.

Getting meds right and pacing with rest periods and avoiding big triggers seems to be what helps me. I know I do best first thing in the morning so any bigger projects are not done later in the day. I use the ER pyridostigmine in the background and add in the shorter acting.
Sometimes I underestimate. I use the shopping cart to lean on and carry things...if I am working outside a bit I have the tools already gathered so I don't waste energy on that one. I use the disaled sticker for my car to park close if I have a long shopping trip as I know at the end of it I will not have much oooomph. I take more mestinon if I am driving far as my arms will tire otherwise. Marie

Thanks for all your comments. I will never get the disabled plaque though I am still in denial. And I am not talking about the river in Egypt lol. I guess I am finally learning this aint gonna go away. I think what you all are telling me is do not get down about it, just get clever. God Bless

It was tough for me to finally admit I needed the plaque. Remember what my neuro told me. Every step you save is a step you can take with your wife and kids. That really hit home for me and I relented to the plaque and cane. I still wont get a rollator though!
Be very weary of adrenaline. It will trick you. When I work on a project I get all fired up and overdo it every time. Then as soon as I slow down I feel like I'm 95 years old. Walking around the house taking baby steps and slurring like an old drunk! Take lots of breaks when you are working or playing. Once you slow down your body will tell what you need to do. If you take a break and feel you can do more go for it. If you take that break and slow down, STOP! Save it for another day. Its not worth losing 3 days for an hour or two.

You might want to read about the single breath count in the Member's Links Group. Since I try to do a lot of gardening, it is something I use, especially in the summer. Basically you take a deep breath and see how far you can count out loud when you are feeling good. That's your baseline. Healthy people usually can count to fifty, I get to forty on good days. When you can only get to 20 you are having 911 symptoms, no matter your baseline. I use it to gauge when I should rest or stop. If my count is falling to lower 30's, I rest, and if it recovers, I work some more. If it is below 30, I stop and do something more sedentary after it recovers. A falling breath count when you are resting is just as ominous as a count of 20. Head for the ER, a failing diaphragm is very BAD news and we can go from 20 to 13 to 1 very quickly. b.

I have a relative that has refused to made accommodations for their weakness and they have missed out on a lot. I have another relative who chose early as a teenager to use a wheelchair and has been able to experience more as she would otherwise be bed bound. That said I waited nearly a year past the point I truly could use a disabled sticker to ask for one. I somehow felt almost guilty asking for one.....but then once I had one and could barely get to the car parked in the disablity space that guilt disolved. My doctor did not hesitate to give me one. I don't use it on days I don't think I need to or if I can get another parking place near enough to complete tasks. For the other times it has been a god send. I agree it is a decision moment but for me it meant I could accomplish more and experience more and that means a lot to me.

If I get my meds off I can go up and down too easily. When they are balanced and I accommodate for activity by adding meds when needed and pacing I do better.

The breath test I would like to read more about. I am wondering if it is something that is somewhat interpreted differently for different people and relative to your base line. I ask this because I am feeling fairly good today just tired and taking a deep breath and counting quickly only gets me to 27 and voice is gone at 24 . I have had low readings on MIP and MEP on testing but did the sniff test ok last year. Just wondering if we need yearly measurements on the pulmonary stuff....not sure on that one.

Whew. I've been trying the Single-Breath Test. While my doctors seem to think my breathing is okay? I don't do well - on the Single-Breath Test.
All the more reason - to keep a careful eye on my symptoms.
Thank you! - Ross

I agree - it's so hard not to take a day where you feel well and use it to the fullest... except somehow, that usually robs the next day of its full energy. One of my older friends with MG (not on this forum) told me to just do what needs to be done - the rest can always come tomorrow. ...Not always the luxury of someone NOT retired, but still... (:

I always do what I want and pay for it later. If I have a get out of jail free card, I take it. The jail will always be there waiting for me.