My whole life has been affected
How it has affected my daily routine? I've had to give up a job I absolutely loved. I had to sell the home I loved because I couldn't handle the care and stress, total change to move into in- law quarters with my daughter. So, we all know that MG is unpredictable so I just live one day at a time.
Am trying to strengthen myself after being really down and inactive for a couple of years. Trying to get out more. I am NOT an introvert and need people so I don't get depressed.
I do try to guard my sleep. Now that I am NOT on high dose of prednisone, I can sleep 7-8 hours straight. And I no longer feel bad about saying NO when I have to or not doing anything for a day to recharge to do what I want
Daily routine change- no, whole life adjustment.

For me, lack of a full night's sleep is really bad. When I worked I could end up with only 4-5 hours sleep. I had 2 big flare-ups that immobilized me for about a week each. For me the result was falling, which takes months for me to heal/close skin wounds.

At work, somehow the expectation is a slower pace with frequent breaks. Unfortunately most employers want high and rapid productivity. There is a fine line between sacrificing your health more or less. YOU HAVE TO CHOOSE YOU. If you do not, you or others around you may experience negative impacts, injuries, car accidents, etc.

Your doctor probably didn't say much of anything at all about impacts of the disease because the disease manifests in many different ways. For example, some experience impacts to the eyes the most. Some it's more general bulbar symptoms. Others may experience leg or arm paralysis that requires a lot of rest.

The last thing I will note is that I generally have best energy in the morning. By early or mid Generally I need to lay down afternoon my energy is largely a lot less. It also can mean I need to rest my eyes, stop talking so much and slow down. Lastly, I can get symptoms where my diaphragm is overtired. That is the brink of respiratory failure. Finally I went to this past weekend not feeling well and tired of breathing. I had some acute respiratory failure with my covid.

You have to be careful and listen to your body. No one treating you truly knows how you feel first-hand (except participants that use My Healthteam). But the best strategy is to unwind stress and exhaustion before it is too late.

I hope this is help

Today I learned a valuable lesson.
Don't take good days for granted when your meds are doing what they are supposed to do.
Be thankful and move slow. Our energy is precious ❤😎

NancyTodd
you have every right to complain, bemoan, groan, do all those things that help you vent. I'm sorry that your sister is not appreciative of the fact that you have a condition that has absolutely no cure and most days cannot be controlled, even with meds. But they can help manage daily living. That being said I would be patient with your sister because stress does not help us. MG will exacerbate all of our symptoms and make recovery last longer. She does not understand what you're going through because really, it is hard to explain to people And why should you have explain your pain to anyone.
Self care, compassion and rest is key and I will keep you in my prayers and hope that you feel better.
Be patient to yourself.
I have sisters too. Who after 13 yrs d'xd are just coming around. But not because I pleaded with them. life's circumstances will help your sister see. Meanwhile take care of you
Stay hopeful 😎

RonnyDonaldson
Idk what your doctors have told you about how MG interacts.
But If you don't mind my saying,
We have a disease that causes our neurotransmitters (the junction where our nerves communicate with our muscles is not delivering the message properly. Almost like they're speaking to different languages. Some days the communication is ok. We go about our days as if we don't have a problem. It's on those days we can over due it. And it might be something like driving, a thing we always do, that can cause a flare up. Here's the problem. When we have a flare up it can be a little one that lasts 2, 5, or 12 hrs. Some last days, weeks, months. And it's how we react to that flare up that matters. Stress is a culprit. My 13yrs of diagnosis has taught me to just stop what I'm doing whatever it is and rest. I drink pickle juice right away. I got that from wathing and talking to athletes. They will drink a shot right away at any sign of cramp or weakness. It takes effect in seconds. You should still rest.
MG can exacerbate anything.
We need to take breaks and rest whenever possible.
I hope I was helpful
Stay hopeful 😎